MedWorm.com provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest items from the 'Diary of a Cancer Patient' source. Wed, 15 Oct 2008 15:21:08 +0100 http://emilymcarthur.blogspot.com/2008/09/past-present-and-future-part-iii.html The FutureMy last two entries have been about what has happened to me in the past 3 years and how that has affected me in the present, but now I have to consider what might happen in the future which is far harder to do.At the end of the last entry I wrote about how coming to terms with having cancer is something that I am going to have to do in the future. Because for now, while I can think logically about all the things I've been through, I can't get my head around the fact that all those things have happened to me because I've got ovarian cancer. Even writing those words, I've got ovarian cancer, feels very disconnected from me as a person. And yet I am going to have to find a way to accept it and move on. I think I have got to this point by disassociating myself with the whole thing - getting ill and having all that treatment happened to another version of me, and now I'm looking to revert back to the person that existed before September 2005. Except that I know I can't do that, I have to somehow merge the two to create a new me almost. I am hoping that this will happen seamlessly in the future; that as I get better and feel stronger, and as more and more time passes without the cancer recurring, then I will gain increased perspective on the whole thing and be able to accept what has happened.Of course, accepting you have had cancer and moving on is always going to be difficult when the threat of it coming back is always lurking. I have no idea whether or not I will get to declare that I am in remission (something you can only do after you have been clear for 5 years), but it is certainly what I'm going to aim for. I cannot predict what might happen - after all I would never have predicted that I would get cancer at 25 - I can only accept that it might come back, and hope that it doesn't. In the meantime of course, to see if there are any signs that the cancer has returned, I will continue to have check-ups and blood tests and scans. These will be every 3 months for the time being, but I will gradually move to having them every 6 months, and then finally to just one a year if all remains unchanged and healthy.To look into the future and see the possibility of the cancer recurring is frightening, but there are other, much brighter things in the future too: being able to live a life with great friends and family, and to have a wonderful marriage with Justin. And maybe, just maybe to have a family of our own. And that is really my big hope for the future, alongside continuing to be healthy. If I stay cancer free then there really is a chance we could have children, and that would be the most amazing and brilliant thing.So I guess that while the past 3 years have been pretty awful, and the present continues to be a bit of a struggle, the future has the potential to be really rather good!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1854151 Mon, 29 Sep 2008 18:46:00 +0100 1854151 http://emilymcarthur.blogspot.com/2008/09/past-present-and-future-part-ii.html The PresentAs I talked about in Part I of this entry, so much has taken place over the past 3 years that it is hardly surprising to find the present so affected by it. It has been 7 months since I finished my treatment, and 1 & 1/2 months since I was told there is no sign of the cancer, and yet my life is still heavily dominated by the effects of it all.The most obvious effect is the tiredness and lack of energy that are a direct result of having had chemotherapy. It is often overlooked and not mentioned by the hospital when you start a course of treatment, but you can actually continue to feel more tired and less energetic for years following chemotherapy. This causes huge amounts of frustration when your treatment is over and you have been told there is no sign of the cancer because you feel like you should be "normal", and being "normal" somehow means being able to go to work, have a social life, do exercise, do housework, shopping etc etc. When you find yourself being unable to do all of those things you get incredibly frustrated with yourself, especially as you are so desperate to do them and prove to yourself that you're completely well and don't have cancer any more. The whole situation can be made even more difficult because, while a lot of people accept that you are going to be pretty exhausted while you're actually going through chemo, many don't realise how long the fatigue goes on for once your treatment has finished, and so can seem surprised when you are unable to keep up with everything they are doing.For me, the tiredness is something that frustrates me beyond belief. I feel like I have spent so many years of my life being ill and being tied to the hospital that now I have been told I'm clear of the cancer I am determined to get back to normal as quickly as possible. Of course, after being battered about for 3 years with barely any respite my body doesn't have quite the same idea and is steadfastly refusing to cooperate! I am trying to remain patient: I have returned to work, but on a part-time basis; I try to put rest days in after any big activity I do; and I'm trying not to book up too many weekends in a row socialising and catching up on the 3 years of social life I've missed out on. But, despite this, I still feel tired a lot of the time, I struggle to concentrate on things, and I don't always have the energy I need to do everything I've got planned for the day. I know that in the future this is something that will improve, it's just a matter of time and of course patience!The other very obvious effect of the chemotherapy treatment is my hair, or rather my lack of it! Whilst it is definitely growing back, and at a faster rate than I had imagined it would, I still have very short hair, and a hair style that, while to others may not look like I've had cancer, to me screams it out everytime I look in the mirror. I had short hair many years ago, way before becoming ill, and so the length of my hair is not so much what bothers me, it's more that I know I haven't chosen to cut my hair this short, it has been imposed upon me. It is a small, yet very big difference, and it certainly affects how you feel about yourself. In fact getting your self-confidence back after being ill is another big challenge. For me I have days when I feel ok, and others when I feel I'd like to shrink into a corner never to be seen by anyone again. It's difficult sometimes to get up and force myself to go out, but I know nothing is going to come of sitting around. And besides, I've spent far too much of my time indoors over the last 3 years that I'm not about to start doing it voluntarily!It is hard when your treatment has changed your physical appareance, like mine has with my surgery scar and my hair loss, to feel "normal" and confident though. It is also incredibly hard when you have spent so long being defined as a cancer patient to try to shake off the label. And that is just in your own mind, let alone how other people can view you. For me I have to say that everyone I know has been fantastic, and managed to strike that hugely difficult balance between treating me as normal so that I don't still feel like a cancer patient, and yet still being considerate of how tired and run-down I may be feeling. In my own head it is going to be somewhat more of a battle though, and one that is only now starting to form: how to accept that I am a cancer patient, that I have had cancer, that having cancer is a part of who I am? I honestly have no answers for this at the moment. I have only just started to reach the point after treatment where the events of the last 3 years are sinking in enough that I can begin to contemplate them, let alone work out how to accept them. That is definitely something the future holds... (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1818956 Wed, 17 Sep 2008 18:03:00 +0100 1818956 http://emilymcarthur.blogspot.com/2008/08/past-present-and-future-part-i.html Number of years since I got ill: 3Number of months since I finally finished treatment: 7Number of months since I was told there was no sign of the cancer: 1 & 1/2Number of months/years I will remain cancer free: unknownNow that the news of being pronounced cancer free has finally started to sink in, I am finding myself thinking more and more about everything that has happened to me over the past 3 years: what I have been through in that time, how having cancer is affecting my life now, and what influence it might have on my future.The PastIt has been 3 years to the day this weekend since I first became ill and over that time so much has happened, as this timeline shows:Aug 05 - developed chronic lower abdominal pain, which lead to several spells at hospital for diagnosisSep 05 - had an ultra-sound scan which showed a 10cm cyst on my right ovary, and then emergency surgery 2 hours later to remove itNov 05 - went back to the hospital after increasing pain following the surgeryDec 05 - had an ultra-sound scan which showed another large cyst on my right ovaryJan 06 - had surgery to remove the cyst and my right ovaryFeb 06 - was called in by the hospital and told I had ovarian cancerMar 06 - had a CT scan to check for cancer spreadApr 06 - was told the cancer was in the early stages and hadn't obviously spread, but was aggressive so I needed chemotherapy treatment. Started a course of IVF treatment to freeze embryos in case the chemotherapy made me infertileMay 06 - completed the course of IVF, and had a laparoscopy to make absolutely certain the cancer hadn't spreadJun 06 - started a 6 treatment cycle of Carboplatin chemotherapyOct 06 - finished chemotherapyNov 06 - had my first check-up: everything looked clearFeb 07 - had my second check-up, plus a CT scan: everything looked clearApr 07 - had my third check-up: CA125 levels had started to riseMay 07 - repeated my CA125 blood test: levels had risen even moreJun 07 - had an ultra-sound scan which showed a 5cm tumour had grown around my womb, followed by a pelvic MRI scan to check for further spreadJul 07 - was told there were no further visible tumours and had surgery to remove the tumour around my womb, which was thankfully done without needing a hysterectomyAug 07 - started a 6 treatment cycle of Taxol-Carboplatin chemotherapySep 07 - discovered I was pregnant with twins but that the pregnancy wasn't viable, and subsequently had a forced miscarriageJan 08 - finished chemotherapyFeb 08 - had head and pelvic MRI scans to check for signs of the cancer. Saw my oncologist for the results and was told there were signs the cancer may have spread to my bowelJun 08 - had a repeat pelvic MRI scan to confirm whether or not the cancer had spreadJul 08 - it was confirmed that the bowel spots were endometriosis, not cancerPhew! Although it looks a lot, I feel quite flippant writing about the last 3 years of my life like that - it seems too easy just to list everything down in comparison to the struggle it took to actually get through it all. Perhaps a couple of facts would help to set it in context:I have:- spent at least 12 hours under anaesthetic having operations to remove nasty bits of cancer, and to scope out any places it might be lurking- had around 20 lots of imaging (MRI scans, CT scans, ultra-sounds and x-rays), which is a lot of radiation!- spent more than 50 hours having chemotherapy administered - that's over 2 days solid- had over 130 appointments at the hospital, which is one everyday for over 4 months- spent over 80 hours in waiting rooms, which is an estimated average as waiting times for appointments ranged from 15 minutes to 8 hours!- spent around £1000 on car parking charges- missed 17 & 1/2 months of wages through being off work sickI think that really shows just how much the hospital has dominated my life for the past 3 years. It has been an all-consuming battle that is continuing even now... (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1735792 Mon, 25 Aug 2008 20:17:00 +0100 1735792 http://emilymcarthur.blogspot.com/2008/07/being-pronounced-cancer-free-priceless.html News from the hospital: all goodLevel of relief: immeasurable!!After months and months of holding my breath waiting to find out whether or not the cancer had returned and spread since finishing chemotherapy 6 months ago, finally the day came on Friday to find out.Sitting in the waiting room at the hospital waiting to hear my name called out to go in and see my oncologist and hear the news was one of the most tense experiences of my life. It didn’t help that the clinic was running half an hour late so I had to wait even longer, but then that’s pretty normal for hospitals really. Finally, I was called through into one of the examination rooms to wait for him to finish with his previous patient. At that point it felt so near, but still so far from finding out. Within minutes he came in though and immediately said that it was all good news, so I could stop worrying. The relief!! He then sat down and explained that the MRI scan had shown no spots on my bowel at all this time which, because it was done in at a different point in my menstrual cycle, indicated almost without doubt that what they had seen in the first MRI scan 4 months ago was endometriosis. (See the NHS Direct website for a more detailed explanation of what endometriosis is). Plus, the blood tests I did last week showed that my CA125 level is 12, which is pretty much the lowest it’s ever been in the whole of the 3 years I’ve been ill for (35 is the upper range of normal).It was just the most amazing news to get, and yet I almost felt like I was in a fog while he was talking. When we left and came home both Justin and I sat there completely shell-shocked. I think we had both been so tense beforehand that, although we were both ecstatically happy with the news, neither of us could quite process it. 2 days on and I still feel a bit weird about it to be honest. I feel like I should be jumping for joy and running around shouting and laughing about it, but I just feel a bit numb. I think that after 3 years of setbacks and bad news it’s just hard to comprehend that something has finally turned out the way it should. Mind you, I think after that amount of time I was certainly due to have my luck turn!I know it’s just going to take a bit of time to sink in, and for the tension of the last 4 months or so to dissipate. When I think about the fact that (at the moment) the cancer appears to have gone, the amazement and relief I feel is indescribable, and yet in a tiny corner of my mind is the thought ‘is it going to come back at some point, and if so when will that point be?’ It’s a pretty natural reaction to have after going through much and I know that with time, even though it will never go completely, it’s something that will slip further and further to the back of my mind. For the moment though it all looks really good, and there’s no reason to suspect the chemotherapy hasn’t killed the cancer off this time.In practical terms it all means that I can now move to having check-ups at the hospital every 3 months, which will involve having blood tests done and being examined to keep monitoring for signs of the cancer. Every so often I’ll also have another scan just to be certain. It seems amazing to have finally reached the point where I only go back to the hospital for check-ups! It’s quite a milestone to reach. I’ve certainly reached another milestone too: 6 months after the first course of chemotherapy they found that the cancer had come back. Now I’m back at the 6 month mark after my second course of chemo, only this time there is no sign of it. Long may that continue!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728310 Sun, 06 Jul 2008 12:11:00 +0100 1728310 http://emilymcarthur.blogspot.com/2008/07/penultimate-day-of-waiting.html Number of days until I find out whether or not the cancer has come back: 1Mood: apprehensive to say the least!Finally the months have ticked down and the mammouth wait is almost at an end. This time tomorrow I will be less than an hour away from finding out whether or not the cancer really has spread to my bowel. To say I am worried and nervous about the appointment would be a vast understatement! Still, it will just be so good to know what’s going on, one way or another.Last week, in preparation for tomorrow’s appointment with my oncologist, I had a pelvic and abdominal MRI scan. This is so that the doctors can compare it to the one I had 4 months ago and look to see whether or not the spots they saw on my bowel the first time around have grown, multiplied etc. I also had blood tests to check my CA125 levels (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) to see if they have changed. The blood test didn’t go too smoothly however, because they let a trainee loose on me - perhaps not the best idea when my veins are pretty shot from so many blood tests and all the chemo! So the poor woman poked repeatedly at the only vein she could find for ages, but to no avail - not one drop of blood would leak out. So, after apologising profusely, she had to ask one of the other nurses to take over, who on her second attempt finally managed to get a whole tube of blood out. Of course after being poked about so much I developed a rather impressive bruise, the problem being that it’s right on the inside of my elbow so whenever anyone I don’t know sees it I swear they think I’m a drug addict!Thankfully after all that the MRI scan was a breeze. I forget between each scan just how claustrophobic they are though: you lie down on a bed which slides into a tunnel, the roof of which feels literally inches from your nose, and are injected with a contrast dye so that they can see everything better. Then a prop is placed under your legs to raise them, and you have metal plates placed over your abdomen. Once that is done you are strapped down tightly onto the bed so you can’t move. You are given a bell in the fingertips of one hand in case you start to panic and need to come out, or start feeling ill, but your fingertips are literally the only things you are capable of moving. It’s also incredibly noisy once the machine starts, so much so that even with the industrial headphones you are given to wear you still feel like you’re being deafened. Still, after about 25-30 minutes the claustrophobic noisiness was all over, and I got to go home with the knowledge that in a matter of hours some radiographer somewhere could know my fate.The wait over the last week for the appointment with my oncologist to come around has in some ways been harder than the whole of the last few months for that very reason: because all I can think about is that the doctors have already seen my scan and so already know what is going on, but I don’t. I still have no idea whether or not everything is going to be ok. For the first couple of months after getting the results from my last MRI scan and finding out the cancer may have spread to my bowel I really swayed between thinking it was going to be ok, and thinking it wasn’t. But for the last couple of weeks I haven’t felt hugely confident about the outcome. They always say to trust your intuition, and so far over the last 3 years since I became ill mine has always been spot on. However now I’m not sure whether it’s intuition that is telling me things aren’t completely right, or whether it’s just nerves and anxiety that are driving me to think it. Plus my track record doesn’t exactly stand me in good stead for positive outcomes, which could be making me wrongly think the worst. So, all in all I guess there is just no telling how things are going to go. But, now I’ve had some time to get over the chemo, I feel strong enough that if there is more treatment up ahead then I know I can get through it and fight it all the way. I just really really hope I’m not going to have to…Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728311 Thu, 03 Jul 2008 14:40:00 +0100 1728311 http://emilymcarthur.blogspot.com/2008/06/tentative-return-to-work.html Number of days until I go back to work: 6Number of days until my MRI scan: 6Number of days until I find out whether or not the cancer has come back: 15Well it’s been about 5 & 1/2 months since I had my final chemo treatment, and finally I am preparing to go back to work. After being off for a whole year, this time next week I will have returned to the ranks of normal working people. It is hard to believe that it’s been a whole year since I finished work to have surgery to remove my recurrent ovarian tumour, and even harder to believe that yet another year of my life has been so easily swallowed up by hospitals and cancer. While I was having chemotherapy time seemed to go really slowly, and yet looking back the last year as a whole has slipped away with no clear definining moments other than illness really. It sounds pretty depressing when you write it down and put it like that, but I don’t feel depressed about it, just determined to put it all behind me as quickly as possible.Of course, being able to put the last few years behind me is really going to be dependent on what happens with my repeat MRI scan and subsequent appointment with my oncologist. Unbelievably my scan date has come through for the same day that I’m going back to work, but luckily for late in the afternoon so it doesn’t affect anything. So, on Wed 25th June I will be both returning to some normality by going back to work, and heading off to the hospital for an MRI scan that could potentially show I’ve still got some nasty cancer lurking on my bowel. It’s pretty hard to make things seem normal when that’s going on!I did get a good phone call from the hospital the other day though: I was due to be seeing my oncologist on 11th July, but he is now going to be away so my appointment has been brought forward to 4th July at a different hospital. A whole week less to wait is great - a week less of being in limbo! I have to admit the last couple of months of waiting have been pretty torturous: not wanting to convince myself it’s going to be bad news, but also not daring to trust it’s going to be good. Just thinking about walking into that appointment on 4th July makes my stomach flip and my pulse start to race, but whatever the outcome is there’s absolutely nothing I can do to influence it. The cancer is either lurking inside of me or it isn’t, I can’t stop or change it either way.Going back to work next week should help to distract me from thinking about it too much. I’m planning to go back to work on a phased return, so I’ll start by working a couple of mornings a week, and then build up from there until I’m back working full-time. When I went back to work after my first course of chemotherapy it took me 6 months until I was capably managing 5 mornings a week, so I’m not expecting to be back doing full working week anytime soon! The difficult thing at the moment is: a) not knowing how tired going back to work is going to make me, and therefore how much I’ll be capable of working; and b) not knowing whether I’m going to have to go off for more treatment almost as soon as I do go back. If my oncologist tells me when I see him that the MRI scan has definitely showed up something, then I’m going to end up going off for surgery not too long afterwards. It makes it quite hard to plan a return to work with that possibility looming over me. Still, I’ve only got 2 more weeks of waiting until I know one way or the other. Until then I’m going to head back to work next week and try to enjoy having a semblance of normality in my life, for the time being at least.Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728312 Thu, 19 Jun 2008 14:32:00 +0100 1728312 http://emilymcarthur.blogspot.com/2008/06/post-chemo-hair-loss-and-regrowth.html Number of months since finishing chemo: 5Amount of hair growing back: enough to need it cutAmount of hair falling out: enough to wonder what on earth is going on?!It's been a while since I've written, mainly because I've been spending my time hanging around in this ever-continuing limbo and have no real developments to talk of. However, about a week ago something rather unexpected started to occur, and I thought that with no warning having been given to me about it by the hospital, it was well worth letting everyone know about this very delayed effect from the chemo:As you all know I had the chemo and in the process lost all my hair, eyebrows, eyelashes etc. Then within 3 months of finishing the treatment they had grown back and I already had quite a reasonable covering of hair. Well, it's now 5 months since I finished chemo and my eyebrows and eyelashes are falling out all over again! At first when a few of each fell out I hoped it was just some freaky coincidence and that would be the end of it. However it's now a week later, and they are both still coming out in large numbers. No-one at the hospital ever warned me that this could happen, so I've been pretty surprised to say the least! Fortunately (at the moment anyway) it doesnt seem to be affecting my hair, which is still tightly fixed in - I have even pulled at it to double check, which was a nervous moment because for all I knew a big clump could have come away in my hands!So, having had no indication from the hospital that the chemo could cause this reaction months after finishing treatment, I turned to the internet to see if anyone else out there has experienced a similar thing. And yes, it turns out that this can be a side-effect, and that for several years after chemotherapy your eyelashes and eyebrows can continue to fall out cyclically. I couldn't believe it! I had absolutely no idea that could happen, and or that the chemo nurses and doctors could have failed to warn me and prepare me for it possible happening. I knew that the chemo could damage your hair follicles, which is why your hair can grow back a different colour and texture to how it was before you had chemo (for many their hair grows back curly, and although mine is pretty much still straight it definitely does have slightly more of a wave to it), but I just never translated this into it affecting your eyebrows and eyelashes too. Of course when you think about it logically it seems obvious that it could, but sometimes unless someone sits you down and tells you these things they just don't occur to you. I really never imagined having lost my eyebrows and eyelashes once from the chemo, that when it was over it could still keep happening. Even more scarily it seems from everything I have read that it can keep happening for several years, so I could be in a perpetual cycle of having my eyebrows and eyelashes grow and fall out again for quite a while to come! Let this be a warning for anyone who has treatment, or knows someone who is - eyelashes and eyebrows may not be as permanent as you expect when they grow back through after finishing chemotherapy!The only good thing at the moment is that despite it feeling like so many eyelashes and eyebrow hairs have fallen out there can't be any left, in actual fact they just look a lot thinner, and to anyone who didn't know it would probably just look like I've decided to have really thin eyebrows. I'm actually not sure what is worse though, people knowing I've had chemo because my eyebrows have half thinned out, or them thinking I've chosen to pluck my eyebrows to within an inch of their lives because I think it looks good?! With my eyelashes I can already see new growth coming through, so I don't think it's going to be very noticeable to anyone that they are falling out, unless huge clumps start disappearing. However, I'm prepared now that anything new that grows through may well be falling out again in just a few months time...Bizarrely, in complete contrast, my hair has now grown back sufficiently enough that I actually had to have it cut last Friday! It was my first haircut in almost a year, and it felt very strange to be walking into a hairdressers again. It also felt great, like another step towards getting back to doing normal things. I haven't exactly got long flowing locks yet, but it was starting to get a bit unruly around my ears and neck, so I got it neatened up a bit and thinned out slightly through the top. My hair has grown back very similarly to how it was before I had the chemo, except that strangely it seems to be thicker over the top. I don't know whether or not that's just because it's still so short, but my hairdresser was telling me another client of hers has had chemo, and her hair came back thicker on top too. Maybe it's another hair follicle anomaly that they don't warn you about?!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728313 Mon, 02 Jun 2008 11:57:00 +0100 1728313 http://emilymcarthur.blogspot.com/2008/04/waiting-game.html Outcome of the latest hospital appointment: as positive as it could beMovement towards finding out whether or not the cancer has come back: barely perceptibleFinally on Friday I had the long awaited appointment with my oncologist to talk further about whether the spots on my bowel that they found on the MRI scan 2 months ago are the cancer returning and spreading or not. Since finding out I wasn’t going to have a repeat scan before the appointment I hadn’t been so worried about going to it, just more keen to get it out of the way so that I could have a firmer plan as to what’s going to happen next. And thankfully that was exactly what I got.Despite not having a repeat MRI scan before the appointment, I did have blood tests and so I at least got the results of those to give me some small indication of what’s going on. The blood tests were to measure my CA125 levels (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) to check and see whether or not they’ve started to rise since I finished chemotherapy nearly 4 months ago. If they’d gone up then it would’ve signalled that in all likelihood the spots on my bowel are indeed cancer. Fortunately the reverse actually happened and my levels have dropped! I hadn’t even considered them dropping as a possibility because they’ve been constantly at the same level since last September, just after I started chemotherapy. So, I imagined that I would find out that they’d either not changed, or that they’d started to rise. I couldn’t believe my ears when my oncologist said they’d fallen! Admittedly not by that much, but as any ovarian cancer patient will tell you, even a small drop is hugely welcome!Although it was a fantastic outcome, it unfortunately still doesn’t hold a whole lot of meaning. In the appointment I sat with my oncologist and gynae-oncology nurse and went back through all my case history, which seeing as I’ve been ill since September 2005 took quite a while! What came out of it was that when the cancer returned last year, straight after finishing my first course of chemotherapy, it took until about 6 months later for my CA125 levels to start rising. So, what that basically means is that in order to be completely sure that the spots on my bowel either are or aren’t cancerous, then I need to wait until 6 months after finishing my chemo until a repeat MRI scan and blood tests can provide a definitive answer, which takes me to June.After establishing this my oncologist laid out the plan of what he wants to do next: I will have my repeat MRI scan and blood tests in June, and then see him on 11th July to discuss the results. If the MRI scan shows that the spots on my bowel haven’t changed, either in number or in size, and my CA125 levels haven’t increased from their current level, then they will rule the spots out as benign and I can move into having normal regular check-ups roughly every 3 months, and we can also start to think about having a family (there is a big smile across my face to think about that possibility!) However, if the scan shows that the spots have increased in number, or changed in size, and/or my CA125 levels have gone up, then that’ll pretty much be a certain indication that it is the cancer. If that happens then they will either decide on the treatment immediately, or else do a laparoscopy first to have a closer look, and then take things from there depending on how the spots look on closer examination.The last senario obviously doesn’t bear thinking about too much, but at least now I have a firm plan of action for what will happen next in either case, and that makes me feel a lot better. Like I said in my last entry, it is always so much easier to have a plan and to know what is coming next than to be in some awful limbo position. Mind you, I think sitting in the waiting room before going into that appointment on 11th July is going to be one of the hardest waits I’ll have ever had since this all started back in 2005. It feels like so much is at stake this time: my fertility and the ability to have a my own family, and the chances of them being able to continually keep the cancer away. So, it’s not over-dramatic to say that the outcome of that appointment could literally change the direction of my life. And I thought this appointment seemed to take forever to come around - the last 2 months of waiting are going to have been a breeze compared to the next 2!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728314 Mon, 28 Apr 2008 13:33:00 +0100 1728314 http://emilymcarthur.blogspot.com/2008/04/speed-of-change.html What it takes to change the direction of your life: just one phone call2 days ago I wrote an entry about my fears over the MRI scan I was due to have at the end of the month, and about what impact the potential results could have on my life. But how quickly things can change! Yesterday, I had a phone call from the hospital and was told that they’re not going to scan me before my appointment with my oncologist on 25th April after all. Instead I just have to repeat my CA125 blood test (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) a week before the appointment to check that my levels are still within the nomal range, as they have been for the last 6 months. Then when I see my oncologist I’ll find out those results, and discuss repeating the scan with him. So it’s not exactly going to produce the grand resolution I was hoping for!It’s all just a complete change to what I thought was going to happen. Instead of going into the appointment in 4 weeks time to find out one way or another whether these illusive spots on my bowel are cancer or not, I’m now just going to be to discussing it still further. I don’t mind that in some ways, I mean I understand that even if it is cancer then waiting 2 months to re-scan wouldn’t really be enough time for it show much change, so repeating it so soon might not be very helpful in providing an answer. I just wish that I’d known that from the start because then I wouldn’t have spent the last 5 weeks worrying about it! I feel slightly more relaxed now I know I’m not going into the appointment with my oncologist to potentially hear something awful, but at the same time I now have the prospect of being in this limbo situation for even longer.It is definitely one of the most difficult aspects of being ill, and one of the hardest to try to describe, just waiting. The whole time you know what you’re facing, even if it’s something really hard like having to have chemotherapy, then you can focus on it and mentally prepare yourself for it. When you don’t know what’s coming though you are in a kind of no man’s land - I don’t want to assume it’s going to be the worst case senario because if it isn’t then I’ve stressed myself out and wasted 2 months worrying over nothing. However, if I believe it’s all going to be fine I could be setting myself up to fall even harder if it turns out not to be. So instead I have to try and walk the fine line between the two: accepting that it could be bad news but not allowing myself to be so preoccupied with the idea that I stop living my life properly in the meantime. To be having to spend 2 months in this limbo was bad enough, but now it seems it’s going to go on even longer.So, with just one phone call what I have been trying to prepare myself for over the last 5 weeks has been completely turned on its head. It seems there are no answers up ahead for me after all, just a lot more waiting.Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728315 Wed, 02 Apr 2008 14:40:00 +0100 1728315 http://emilymcarthur.blogspot.com/2008/03/hair-regrowth.html Number of weeks until I find out whether the cancer is back: 4Fear levels about that appointment: highPositives in the meantime: more and more hair growing back everyday!It’s been about a month since I last wrote, and I have spent the majority of that time pretty much unable to get the thought that the cancer may have come back out of my head. The days seem to be crawling by at an excruciatingly slow pace while I wait for the date of my second scan and the review appointment following it to come around. I’m going back to see my oncologist on 25th April, and I am really not looking forward to having to step through that door and hear what he has to say. Of course if it’s good news then all this worry will have been in vain, and I just have my fingers tightly crossed that will be the case.It’s not so much the worry about whether or not the spots on my bowel are cancer in some ways, more what course of action they will want to take if they are. From the moment I was diagnosed with ovarian cancer my main preoccupation has always been retaining my fertility. I know that might sound crazy, I mean most people would think being cancer-free and healthy would be the main concern, but I so desperately want children that the possiblity it might never happen has always seemed worse somehow. Fortunately, so far all the surgery I have had has been relatively conservative, and I have got away with only losing one of my ovaries. But now, with the possibility that the cancer has not only not been killed off by the chemo but has also spread, then I wonder whether the chance of having a baby is really fading into the distance. Every time the cancer has come back, and with every treatment I have the worry is always there: is this going to be the time I lose my fertility? So far I’ve managed to get through 3 pretty major operations and 2 courses of chemotherapy without losing it, but maybe now is the time my luck will finally start to run out. If the cancer has come back, and spread, then I can just imagine walking into that review appointment and hearing them say the dreaded words ‘full surgery’, which involves a hysterectomy plus a few other bits for good measure. I think I need to go back to crossing my fingers…Anyway, seeing as all of that is still weeks away I thought it was time I wrote about something else that has been happening since my chemo finished: my hair is growing back! Oh yes, I am now sporting a full set of eyelashes, eyebrows, and a reasonable covering of hair. Not bad considering it’s less than 3 months since I had my final chemo treatment.In fact my hair started growing back about 5-6 weeks after I finished chemo. The first things to come back through were my eyebrows and eyelashes, which quite surprised me because they were the last things to fall out, so I thought they might take the longest to come back. While I was having treatment the thought of my eyelashes growing back always puzzled me a bit - would it itch or be scratchy, would it look ridiculous to have really short eyelashes while they were coming through, would they come back patchy? None of those things happened though. I couldn’t even feel them come through, and once they started growing they came through really quickly, so the worry about having to walk around with stumpy lashes never materialised. Now they are already back to the length they were before they fell out, and I’ve even tried out mascara on them which was a very strange experience after not having worn eye makeup for so long!The same thing happened with my eyebrows in that thay didn’t itch when they started growing through. Unlike my eyelashes though they did go through a strange phase where they were more stubble than actual hairs. Fortunately I had some hats that came down quite low, so I just wore those for the week or so that it took for them to grow longer and look a bit more normal!In contrast to both my eyebrows and eyelashes my hair seems to be growing back much more slowly, although even that has come back through much quicker than I thought it would. Again it hasn’t been patchy either, or itchy. In fact it has been really soft and lovely, and felt so nice and soft when it first started coming through that I frequently found myself sitting on the sofa, watching tv and absentmindedly stroking it! In the last couple of weeks though it has got a bit longer and thicker, and isn’t quite so strokable. It’s actually got to the point now where it’s long enough to start looking messy when I wake up in the morning, which is a downside to having hair that I’d completely forgotten about! I didn’t realise how used I got to just being able to roll out of bed, sling on a hat and be done. Now I actually have to make a slight effort if I leave the house!Along with that downside to my hair growing back is another very annoying one - the need to have to shave my legs again. I spent a blissful 6 months waking up every morning with smooth legs, and now it’s back to using a razor again! Mind you, I’m certainly not going to moan about it - it’s just so nice to be getting my hair back. It feels like a visible sign that the nasty chemotherapy drugs are working their way out of my system, and I’m getting healthier again. Now I just have to keep my fingers crossed the MRI scan shows the same thing…Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728316 Mon, 31 Mar 2008 16:16:00 +0100 1728316 http://emilymcarthur.blogspot.com/2008/02/has-cancer-already-come-back.html Level of surprise at the latest turn of hospital events: 7/10Level of anxiety over the latest turn of hospital events: 8/10Well I’m sorry to have to report that after seeing my oncologist on Friday, it seems the worry and nervousness I had about my pelvic MRI scan may turn out to have been well-founded.The scan itself went fine. It was very much like the one I described in more detail a couple of entries ago, but just scanning my pelvic area this time rather than my head - there was deafening noise, vibration and the slight claustrophobia inevitably comes from lying in a small tunnel for about 30 minutes. That was last Wednesday, and despite saying that it was unlikely I would get the results in the appointment with my oncologist just 2 days later, that’s exactly what happened. Justin and I were sat on Friday afternoon waiting to see him, and for about 15 minutes before I was called in, no other patients were in there, which immediately seemed a bad sign - it means they’re probably talking about you before they call you in, and they wouldn’t do that unless there was something to discuss! So when I was finally called, and I walked in to see both my oncologist and my surgical consultant looking at me with serious expressions on their faces, I knew that things weren’t right.It turns out that whilst the scan showed that my remaining ovary, womb, and majority of my pelvic area and stomach cavity look good, there are some undiagnosable spots on my bowel, an area that has never been a problem before. Now on the positive side there is a possibility that these spots could simply be endometriosis, which is a common gynaecological condition that many women suffer from. Indeed, it’s something that I already know I have on my womb, and so it’s plausible that it could simply have spread to my bowel. (See the NHS Direct website for a more detailed explanation of what endometriosis is). On the other hand, with my cancer history it’s also possible that it could be the cancer, which is a pretty terrifying thought, particularly as I’ve only just finished chemotherapy.Because the spots are only 1/2cm in size, then neither the radiographer nor the doctors can tell for certain what they are at the moment. So, they want me to wait for 2 months and then have another MRI scan to see if there has been any change. If there haven’t been any changes after that time then it is more likely that the spots are indeed endometriosis. However, if I go back for a re-scan in 2 months and there has been any sign of growth, then that would be seriously bad news. I’ve also got to have blood tests in a couple of months time to check my CA125 levels (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) to see whether or not they have gone up from their current (normal) level. If they have then that may be another indicator that the spots are indeed cancer, although because CA125 levels can rise for other non-cancerous gynaecological conditions such as endometriosis, it doesn’t make it a very reliable test in this particular situation.So, all in all it’s going to be a fairly tense couple of months, and I don’t mind saying that I’m pretty scared about the potential outcome. Having said that though, there is at least the possibility that it could be something relatively straightforward, and I’m really lucky that possibility exists. It’s a hope that I have to hold onto for the next couple of months…Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728317 Mon, 25 Feb 2008 14:01:00 +0100 1728317 http://emilymcarthur.blogspot.com/2008/02/testing-week-ahead.html Number of initial tests left to complete: 2Feeling at potentially being close to having less hospital appointments in my life: I CAN'T WAIT!!!After having a blissful hospital-free week last week, I am making up for it by having to go back twice this week. My first appointment is tomorrow for a pelvic MRI scan, which is probably the most daunting for me of all these intial check-ups. This is the one that is to see whether or not there are any signs that the cancer is still lurking in my body. While the MRI itself doesn't bother me - I've had a pelvic MRI before, last year, and of course the head MRI just 2 weeks ago - getting the results will certainly be one of those hold-your-breath moments. Having said that, this should really be the clearest MRI I ever have, because I've had surgery to remove the tumour, plus chemotherapy to kill off any remaining cancer cells, so there shouldn't be anything much still there at all. It's as I get further down the line that the scans will get really scary. Still, I need to get through this one before I start worrying about all the ones to come!As well as having the pelvic MRI tomorrow, I have got an appointment to see my oncologist on Friday. The results of my MRI won't have been reviewed by then, so I know I won't find those out, but I will be having blood tests to check my CA125 levels (the protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) to make sure they are still well within the normal range, as they have been for the last few months. Again, I won't know the results of those in the appointment, but the one good thing is that by about 5pm on Friday I should have had all the initial post-chemo tests. I am hoping that after Friday's appointment I won't have to go back to the hospital for another few months, and that I can get back to having the quarterly check-ups I'd just started having when the cancer recurred last year.Whilst there is still some uncertainty surrounding the test results and how frequently I'm going to have to go back to the hospital for check-ups in the future, one certain thing right now is that my hair is starting to grow back! I have fledgling eyebrows and eyelashes, as well as pretty much an all-over covering on my head. It's a thin covering, but its definitely there. It was quite strange to see myself with eyebrows again at first, I didn't realise how used I got to seeing myself without them! Now they're coming back so much that it's not going to be long until I need to get my tweezers back out!My hair re-growth definitely makes it feel like there is some normality finally creeping back into my life, albeit very slowly. Once I get this week out of the way I'm hoping I can start to live a life that I'm in control of, rather than the hospital.Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728318 Tue, 19 Feb 2008 15:05:00 +0100 1728318 http://emilymcarthur.blogspot.com/2008/02/its-official-my-brain-remains.html Pace the hospital can move at when it needs to: very fastFeeling when it does: nervous!I ended my last entry by talking about how quickly I was being swept from having chemotherapy into the post-chemo routine of check-ups and tests. Well, to prove the speed at which I meant, it is now exactly 1 week on from writing that and I have already been for an MRI scan of my head, and had the results!Last Wednesday I saw my oncologist and he said he wanted me to have a CT scan of my head, just to check whether there was a sinister reason for the constant dizziness I’ve had since my last chemotherapy treatment. He told me I should get an appointment through for the scan in 2-3 weeks, so I figured I could forget about it for a few weeks and get a very welcome couple of weeks off from the hospital, something I haven’t had for nearly 6 months! However, on Tuesday I got a call from the hospital to say that the doctors had talked, and had decided that I should have an MRI scan instead of a CT, and could I come in for it the following morning. I found it slightly unnerving that they were rushing me in so quickly, but I guess once you’ve had recurrent cancer, and especially when it’s come back so quickly, then you can’t afford to leave anything that seems a bit out of the ordinary to chance.So, yesterday morning I went in for an MRI scan. Now I know most people have never had an MRI, so I’ll try and explain what it was like so you can get a picture of it: This time around, because I was having a scan of my head, I didn’t have to change into a hospital gown, which was quite a relief seeing as it is a mobile scanner and therefore in a truck parked next to the hospital x-ray department - not exactly the warmest environment in this weather! Anyway, after taking off my coat and hat I was lead into the scanner room and had to lie facing head first into the scanner on a bed. A big block was placed under my legs to raise them, which was pretty uncomfortable. Then, because I was having a scan of my head, a cage was placed over my head and face to keep it fixed in position. Finally, large headphones were placed over my ears and music was played through them to try to help cut out the immense noise of the scanner once it started. When all this was done the bed was slid into the tunnel of the scanner, and I had to lie very still for about 15 minutes while it took cross-sectional images of my head. It’s pretty claustrophobic as you can probably imagine, but they had an angled mirror just above my head that reflected out of the tunnel so I could look up and see out, which helped to give an impression of space. The only problem was that I had to look at it through the bars of the cage over my head, which was only sitting about 2 inches from my face!Anyway, after 15 minutes of very noisy whirring, mixed in with the sound of Radio 1 in the headphones, I was slid out of the scanner and a needle was inserted into a vein in my arm. A contrast dye was then injected to allow particular areas to be seen more clearly. Once that had been done I was slid back into the scanner for about a further 5 minutes while more images were taken. Finally, after around 20 minutes, it was all over and I was slid out, the cage was taken off and, blissfully, my head was released! Apart from the claustrophobia and having to lie rigidly still an MRI isn’t really too bad. The worst thing about it, and other types of scan too, is that while you’re lying there it’s hard to think of anything else but the reason you’re there, and the implications it could have. I mean, if I didn’t have cancer and there wasn’t a risk that it had spread, then I wouldn’t be having the scan, and so while you’re having it you can’t think of much else but having cancer if that makes sense.After the scan had been completed I went home, expecting to have to wait until when I see my oncologist in a couple of weeks time to get the results. However late yesterday afternoon my oncology nurse phoned me to say that the doctors had reviewed my case in a meeting that afternoon, and they thought I’d want to know that my MRI scan had showed that everything was normal. What a relief! I was about 98% sure that it was going to be - I mean my cancer was localised when it came back, so for it to have suddenly spread to my brain would’ve been quite a shock, but then you just never know. It’s so great to know that my brain is all healthy and fine, and that the dizziness I’m experiencing is just because my body is so utterly spent after having had chemotherapy on and off for the last 18 months. Now I just have to hope that my abdomen is clear too, and that the pesky cancer never decides to come back again. In the meantime I think I’ve earned a mini celebration, and I’m also going to massively enjoy having a whole week without a single hospital visit next week!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728319 Thu, 07 Feb 2008 14:55:00 +0100 1728319 http://emilymcarthur.blogspot.com/2008/01/they-think-its-all-over-it-is-now.html Number of chemo treatments left: 0!!!Level of surprise at the sudden end to my treatment: highLevel of relief at the sudden end to my treatment: even higher!I know, I can’t believe it, I’ve managed to finish my chemotherapy with no sign of needles, drugs, anti-sickness tablets or recovery time! How? Well on Friday, just a few hours after I posted my last blog entry, my oncologist phoned to say that considering my low blood cell counts and how ill I still feel after my 5th dose, he didn’t think it was a good idea to push me through any more chemotherapy cycles.My first reaction to him suggesting that was actually quite negative and anxious, which may sound crazy - I mean why wasn’t I immediately thrilled by the thought not having to have any more chemo - but chemotherapy is given to you as a course of treatment, and so consequently you feel you should complete the whole course in order for it to work. Obviously in reality that’s not at all the case, and within 1/2 hr of the phone conversation I realised how nonsensical that idea was. The actual reality of my situation is that my cell counts are very low and I’m still really dizzy, weak and exhausted from the last dose, so my body would really struggle to cope with another dose. As my oncologist pointed out too, having a ‘stand-alone’ dose of chemo so far apart from all the others would make it less effective, and therefore on balance between how much good it would do, and how ill it would make me, it probably becomes more harmful then helpful. On top of that, my CA125 levels (a protein in your blood that is sometimes produced by ovarian cancer cells and therefore can be an indicator of ovarian cancer) are now well within the normal range, and haven’t changed since last September after about my second dose of chemo, so one further treatment would be unlikely to alter it any further. Plus, my oncologist would hardly suggest dropping my final cycle unless he really thought I shouldn’t have it.Once I’d thought about all those things logically it didn’t take me long to start to feel overwhelming relief at not having to go through the whole process again. Like I said, I still feel so ill from the last one that I had been really worried about how I would physically cope with another dose anyway, and had actually already thought there was probably a good chance I would end up in hospital after it. Amid the sense of relief though there came quite a large anticlimax. I know that may sound ridiculous, but as much as I was dreading the final dose I was mentally prepared to have it, and the suddeness of the decision to cancel it came as quite a shock. I know from my first course of chemotherapy that when you have your final treatment it’s so nice to sit there thinking ‘it’s the last time they’ll ever have to find a vein, the last time I have to sit in one of these chairs’ etc. You get to say goodbye to all the nurses and to thank them, and most of all you get to walk out of the Cancer Centre telling yourself you’ll never have to go back. Psychologically it’s a definite process of detachment, and a means of drawing a line not under the cancer itself, but certainly under the chemotherapy, helping to give you a starting point for moving forwards.To hear that I wasn’t going to get that came as quite a surprise, and left me not really knowing what to do with myself. Still, I had to wait until my clinic appointment with my oncologist yesterday before it was definitely confirmed. When I saw him though he said as he had over the phone, that he didn’t think I could physically manage another dose. Having just struggled to walk down the corridor of the hospital to the clinic I could hardly disagree with him! One thing that helped to dispell the anticlimax of missing the final dose was not just knowing that I couldn’t physically get through any more, but also that I coincidentally saw a nurse from the Chemo Suite while I was waiting, and got to chat to her and say thank you and goodbye. It helped to draw a line under the chemotherapy in some small way. On top of that, after doing some balance tests because of my dizziness, my oncologist said he wants me to have a head CT, just to be on the safe side and to get me thoroughly checked out. So, without time to pause for breath, I am already being swept along into the post-chemo stages of check-ups and scans. Because of course nothing ever really ends with cancer, it just progresses onto the next stage…Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728320 Thu, 31 Jan 2008 16:53:00 +0100 1728320 http://emilymcarthur.blogspot.com/2008/01/no-new-trophils-anywhere-in-sight.html Number of days since last chemo: 28Number of days until next chemo: 10 (cell counts permitting)Number of chemo treatments left: still 1Level of tiredness: sky highYep that's right, it's yet another delay! The nurse came out yesterday morning to take my pre-chemo bloods, and I was really hopeful that my neutrophil count would have gone up sufficiently after an extra week. But the Chemo Suite phoned me in the afternoon to say it had actually gone down! It's now 0.9, so that magic 1.5 target seems a long way off. Mind you, I say I was hopeful that it would have gone up, but I haven't felt any better this week so it's probably not that surprising. I did wonder whether it might have only gone up a little bit, but I certainly didn't expect it to fall. It seems those GCSF injections really were a complete waste of time!Because I still feel really dizzy and weak the added delay is a relief in many ways. It means that by the time I have my final treatment though, I'll have had at least 2 months of delays over the course of the chemo, which is quite a lot really. Having said that, when I first started the chemo I predicted that it would finish in February, and it looks like I'm going to be right! My first course of chemo took 5 & 1/2 months to complete, and this one is on track to be about 6 months, which is what I imagined. Blimey, 6 months - writing it down as a figure really brings it home just how long I've been having chemo for. When I think back to that first session it does seem like a lifetime ago though - it was summer, with warm, light evenings and the trees all still had leaves on them, a bit of a contrast to the grey, miserable day that I can see out of the window now!By the time I start to get stronger again after the chemo finishes it'll be coming back into summer which will be bizarre, it's like a whole year will have been wiped out. From experience when I had my first course of chemo I know that when it finishes it feels like you've been in some sort of time warp. It makes it quite hard to adjust because, while you feel like you've gone back to where you were before it all started, everyone else's lives have of course moved on. It can make it difficult to try and fit back in with things again, especially when you feel pressure that everyone expects you to be ecstatically happy that you're getting back to normal again, and you just feel out of place in the "normal" world. Because there is no getting away from it, having cancer, especially when you're young and don't really know anyone else your age who has been ill too, does make you feel segregated. The cancer information charity Cancerbackup actually has a great section on 'Life after Treatment' on it's website which explains really well the kind of feelings you can get once your treatment is over. I have to say I didn't have the really depressed, angry emotions that it describes the first time around though, and I certainly hope I won't have them this time either.Still, to be thinking about life after chemo is jumping the gun slighty considering my final dose is still a way off yet. Right now I need to concentrate on resting lots, and keeping my fingers crossed that my neutrophils and white cells get multiplying over the next 10 days so I don't get any further delays...Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728321 Fri, 25 Jan 2008 12:48:00 +0100 1728321 http://emilymcarthur.blogspot.com/2008/01/more-delays-than-network-rail.html Number of days since last chemo: 21Number of days until next chemo: 7 (cell counts permitting)Number of chemo treatments left: 1As today was due to be the day of my final treatment I’m sure you can guess what’s happened - I’ve been delayed because of low neutrophil counts again. The Chemo Suite phoned me yesterday afternoon to confirm that my neutrophil count is only 1 (when it should be 1.5), which is the lowest it has ever been. It seems that in spite of a lower dose of Carboplatin, and a course of GCSF injections, those white cells are just refusing to mutiply!I can’t say I was particularly surprised. It has been a rough couple of weeks since I last wrote. I have been really dizzy and exhausted, and was worried that it was symptomatic of a low red blood count, which would mean having to have a blood transfusion. But, after blood tests at the start of last week, I saw my oncologist last Wednesday and he confirmed that my haemoglobin count was high enough for me not to need one, which was a relief. Instead he prescribed tablets to try to help the dizziness. On Tuesday, after feeling no improvement at all, my gynae-oncology nurse spoke to my oncologist again and he advised that we call out the GP for me to be checked over. So, a very nice doctor came out the next day and prescribed some new tablets, which are yet to do anything, although I’m still holding out a very faint hope it’s just because it’s taking a few days for them to build up in my system before I feel a difference.Because I’ve been so wobbly on my pins I didn’t go to hospital for my usual pre-chemo blood tests yesterday, a nurse came out to me instead. At the moment I am struggling to do much more than get up and down the stairs, but the chemo nurse who phoned me yesterday about my blood test results warned me to be extra careful about mixing with anyone who might have any bugs or germs because my white cells are so low, so it doesn’t really matter that I’m not capable of going out I suppose!The fact that my counts are even lower than normal, despite measures to try to boost them, just goes to show how worn out my body is. And I have really felt it this time - there was no way I felt able to get through another dose at the moment, final one or not. It has made me realise too just how long it’s going to take after the chemo has finished for me to start feeling well enough to go out even for a cup of coffee, let alone do anything ‘normal’ like walk around town or go back to work. Still, that is way too far in the future to think about. This next week is all about trying to get lots of sleep and rest, and getting myself ready to go through one final treatment. I really can’t wait to have the luxury of time to get myself better after having the last one, and not be under the usual three week time frame that the chemo regime imposes. And I think from the way I have felt after this dose, getting myself better once the chemo is finished is going to take a very long time.Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728322 Fri, 18 Jan 2008 15:41:00 +0100 1728322 http://emilymcarthur.blogspot.com/2008/01/limping-towards-finish.html Number of days since last chemo: 9Number of days until next chemo: 12 (cell counts permitting)Number of chemo treatments left: 1Mood: oh so tiredIt’s been just over a week now since I had chemo but I am still really feeling the burn. I’m 5 treatments in and the “end”, at least in terms of the chemo is in sight, but boy does it seem far off right now. This dose has knocked me sideways, and 9 days on Justin is still helping me get around the house, get dressed, get me in the bath etc.I realised how wiped out I was going to be from this one the moment it started, because I spent 3 of the 6 & 1/2 hours it took to have the chemo asleep. Then when I got home I went straight to sleep for another 16 hours - pretty impressive! When I finally got up I felt incredibly weak, and over a week on that still hasn’t changed. It maybe didn’t help that the wonderous aprepitant tablet didn’t seem to work quite as well this time. Although I wasn’t sick, so it obviously still did a good job, I had much worse nausea and had to take more additional anti-sickness tablets than normal to try to control it. I’m not sure why it wasn’t so good this time, perhaps because of having the stomach bugs before the treatment my stomach was more sensitive. Whatever the reason, it took until Wednesday for me to start to feel less sick and start eating better.On top of that, to compound the usual levels of tiredness I feel after a chemo dose, and in complete opposition to my mega sleep of the first night, I have spent every night ever since struggling to sleep. The reason is that to try to alleviate some of the bone pain I experience as a side effect of the Taxol, I was given a larger and longer course of steroids to take than normal post-chemo. The hospital warned me not to take them after 6pm because they make you really restless, so I never took my final dose later than 4:30pm. But even doing this my brain would be racing at 100 miles an hour at 3am, so that in the morning I would have a brain that was still going mad, and a body that was utterly exhausted. I stopped taking the steroids on Friday, but when Justin spoke to one of my district nurses that afternoon she said you should never take steroids after 2pm at the very latest otherwise you’ll never sleep. So, some cracking original advice from the hospital then! In a slight defence of the steroids they did seem to help stop the bone pain get quite so bad. At least that’s what I thought up until last night when it kicked in with a vengeance - it seems they just delayed it instead. So, not a very successful attempt with the steroids really, plus the district nurse said that they take 72 hours to work out of your system, so by my reckoning I’m not looking at a decent night of sleep until tonight (I really really hope!) I’m so tired though I think once I do start sleeping again I might never stop - maybe I’ll beat my 16 hour record!At the moment I’m feeling incredibly weak and exhausted, as I guess you would expect after a week like that. It’s more than just a case of needing some sleep though. As the chemo has gone on I have found myself being more and more wiped out after each treatment, and that feeling has been extreme after this one. It’s quite a hard thing to explain the extent of really, but I guess this is quite a good illustration: a couple of days ago I was sitting on the sofa and felt thirsty. My drink was on the table infront of me and all I had to do was to sit forward and get it - it took me over 45 minutes to get the energy together to actually do it. I’m at the point now where I’ve only got one treatment left, but I’m so exhausted it feels like the biggest mountain in the world. Don’t get me wrong, I’m so pleased to be at the one-to-go stage, but I can’t get myself up and down the stairs at the moment, let alone begin to contemplate going through another one. Still, with my track record for delays I’m sure I’ll probably have longer than another 2 weeks to gather some energy up together. I’ve had the GCSF injections again this time to see if they can help my white cell counts, so it’s just another case of waiting to see when I have the blood tests in 11 days. Right now I need to try and find some energy from somewhere. It’s taken me 6 sittings to type this, so I think perhaps I need to leave writing until I’m a bit more dynamic!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728323 Sun, 06 Jan 2008 11:55:00 +0100 1728323 http://emilymcarthur.blogspot.com/2007/12/im-dreaming-of-white-blood-cell.html Number of days since last chemo: 22Number of days until next chemo: 8 (cell counts permitting)Number of chemo treatments left: still 2Mood: relievedWell, it turns out that the decision about whether or not to delay my chemo after being ill was made for me in the end. Having been quite hopeful that the GCSF injections I had after my last treatment, plus a slightly lowered dose of Carboplatin, would’ve perked up my neutrophils and white cells, I ended up getting a phone call at 6pm on Tuesday from one of the nurses at the Chemo Suite to say that they were still too low. My neutrophils were 1.2 when they need to be 1.5 for chemo to go ahead. So, I had to go to the Chemo Suite yesterday morning for more blood tests just to check if anything had changed overnight, and it turns out that it had, but in the wrong direction! Instead of increasing, they had actually fallen to 1.1, so after speaking to my oncologist the nurse confirmed that I would have to delay until 28th December.I was actually quite relieved by that point, because just getting to the hospital had made me feel exhausted and weak. I knew deep down that I wasn’t really ready for this treatment so soon after being ill, but ridiculously I felt like I ought to go ahead anyway. I just didn’t want anyone to think I was being a wimp by agreeing so easily to a delay. (I know, I know, it’s stupid to think that, but I can’t help the crazy way in which my brain works!) Anyway, my body has made the decision over my head, so there’s nothing I can do about it even if I wanted to. I think my oncologist was quite surprised I was even attempting to have chemo in the first place!So, at least now I know that I’ve got a chemo-free Christmas which is really nice. I’m planning to make the most of it by eating lots, and maybe even having a glass or 2 of mulled wine if my stomach is up to it! I’ve got to go back to hospital on the 27th for blood tests, and then all being well I’ll be having chemo in just over a week. Having it so close to New Year’s Eve means it’s going to be rather a low-key start to 2008, but I’m saving my celebrations for once all this is over…Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728324 Thu, 20 Dec 2007 11:09:00 +0100 1728324 http://emilymcarthur.blogspot.com/2007/12/nightmare-before-christmas.html Number of days since last chemo: 20Number of days until next chemo: 1 (cell counts permitting)Number of chemo treatments left: 2Mood: determined (through gritted teeth!)Well, the time since I last wrote has been a bit more eventful than I would’ve liked. It all started last Thursday morning when that pesky stomach bug I mentioned in my previous entry returned with a vengeance, only this time with sickness as well. Justin called in the doctor in the afternoon, and he said that I was dehydrated and really needed to go to hospital, which I stubbornly refused to do! He quite reluctantly agreed that I could stay at home, on the proviso that I started to take on some fluids. A couple of hours later however, I was still being sick and my temperature had gone up to 38ºC. Now as a chemo patient you are instructed right at the start of your treatment that if you ever get ill and your temperature reaches 38ºC, then you have to call the Chemo Suite, which is what Justin duly did. They also advised that I needed to be taken into hospital, so Justin phoned the doctor again, who told him to call an ambulance. So, for the second time since my treatment started I got carted off to hospital in an ambulance.Once I got to hospital I had to spend over 4 hours on a trolley in A&E, during which time my temperature went up to over 39ºC, and my blood pressure fell. About 9:30pm I finally got moved to a 48 hour ward, where I was quarantined in a side room so as not to contaminate other patients, and so that they couldn’t contaminate me. If there was any silver lining to be found in the situation then it was definitely that - being in your own room rather than on a ward is like being in a 5* hotel rather than a B&B! At this point though I still hadn’t been placed on a drip because they needed blood test results to come back before they would do anything. Just before 1am, having got to hospital at 5pm, my tests results came back and a doctor finally came round and set up a drip, plus I got given an anti-sickness injection to try and settle things down. Exhausted, and feeling very dehydrated, I settled down to try and get some sleep, only to be woken up by the nurses at 2:30am to be taken for an x-ray. Now don’t ask me what the purpose of that was, because I still have absolutely no idea!Still, after being in hospital for about 24 hours things finally started to settle down, and after 48 hours I was well hydrated, my temperature had gone back down to normal, and although my blood pressure was still a bit low, I was allowed to break out and come home. Now, a couple of days later, I’m feeling very tired and a bit see-through, but there’s no time to recover because it’s back into chemo tomorrow (presuming my cell counts come back ok from the blood tests I had this morning). Actually, I saw my oncologist on Friday while I was in hospital, and he seemed happy for me to delay my chemo by a week to give me more time to recover, but I’m aware that I’ve had quite a few delays already since I started chemo, what with the miscarriage and low cell counts, and I just feel like I can’t risk having so many delays that the treatment doesn’t work. Also, unless I get told I definitely can’t have chemo then I always feel like that means I should, and because he didn’t give me an absolute no, then I took that to mean I should go ahead, which I’m sure is nonsense, but that’s just the way I think!So, all going to plan, this time tomorrow I should be sitting in a big chair, hooked up to a pump, having lots of drugs pumped into me. Of course there’s only a week until Christmas, which means that, although I should be eating a bit, I’m going to be feeling pretty wiped out on Christmas Day. But, as long as it gives me a shot at a healthier 2008, I really don’t care!I wish you all a really Merry Christmas, and a fantastic New Year, and I’ll write again in 2008 to let you all know how this one went.Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728325 Tue, 18 Dec 2007 11:25:00 +0100 1728325 http://emilymcarthur.blogspot.com/2007/12/its-all-downhill-from-here.html Number of days since last chemo: 11Number of days until next chemo: 10 (cell counts permitting)Number of chemo treatments left: 2I haven't written for a while, so you've probaby guessed that after a delay of nearly 2 weeks I finally had my 4th chemo treatment last Wednesday. It was only by the tiniest of margins though. Remember how my neutrophils stopped the dose going ahead on time originally because they were too low? Well they had only come up slightly over the extra week they delayed me: from 1.1 to 1.5, which is the lowest acceptable level for chemotherapy. That rise should only normally take a couple of days, not a week, so they had to make a couple of adjustments to my treatment as a result.The first is that they lowered the dose of Carboplatin they gave me. This is because the amount of Carboplatin you receive is calculated on the basis of your kidney function, and mine was reduced. The reason it is worked out that way is that Carboplatin is termed as a 'heavy metal' drug because it contains platinum. Your kidneys (quite understandably) find it difficult to filter the metal, so if they start to struggle then they have to recalculate your doseage. Taxol on the other hand doesn't contain any metal, so is worked out on a height and weight ratio. I had been having 725mg of Carboplatin and 290mg of Taxol, which has always seemed quite a lot considering that when I had chemotherapy last year I was having 650mg of Carboplatin on its own! Anyway, with my kidneys on the ropes a bit then my dose of Carboplatin was lowered down to 650mg, with my Taxol left the same. By doing this my kidneys will hopefully be able to recover a bit.On top of lowering my Carboplatin dose, the doctor also prescribed 5 days of GCSF injections for post-chemo, or to give them their full name, granulocyte-colony stimulating factor injections. The function of these is to stimulate the bone marrow to produce new white cells more quickly after chemotherapy. By taking them I should be able to get back into the 3 week cycle and have my next treatment on time. They should also stop my neutrophils from dropping so low that it would become dangerous for me if I got an infection.So, with these new measures in place it was time to actually have the chemo, and to go through the bit I have come to dread: finding a vein. Miraculously, given my track record, the nurse found one at the first attempt. Admittedly it took nearly an hour under a heat pad for a vein to come up, but it did which was all that mattered. Also, it was on the inside of my wrist which was a very painful place to cannulate, but I was just so grateful that it had gone in and that the vein didn't collapse that the pain was worth it! The chemo itself took the usual 6 & 1/2 hours, but I had the wonderful aprepitant tablet beforehand, so I left the hospital tired, but hopeful that I would get through the next week with minimal sickness. And I did! I was almost sick that night, but once I took my next aprepitant tablet the following morning then things settled down again, and after that I had some nausea, but nothing I couldn't manage. In fact, I was able to drink and eat something everyday after chemo, and by the time I got to the weekend I was starting to feel hopeful that maybe this would finally be the treatment that went well. But sadly that turned out to be wishful thinking...By Saturday evening I started to get really bad joint and bone pain, which is one of the delightful side effects of Taxol. I had it with my last dose too, and it primarily affects my legs and feet. It's quite hard to explain, but all your bones hurt and you get shooting pains through them, which turns you into a cross between a 90 year old woman and Bambi as you attempt to hobble and wobble your way around the house. Still, I told myself if that was the worst side effect I was going to get now that I have aprepitant to control the sickness, then I could take it. Then on Sunday I started my one-a-day GCSF injections to try and get those neutrophils up. They were very simple to inject: the syringe is pre-prepared and all you have to do is use a sterile wipe to clean the area you're going to inject, which in my case was my stomach, and then inject it. I had to self-inject for 2 weeks when I went through IVF last year, so it doesn't really bother me to do it, although injecting in your stomach isn't the nicest thing in the world. Definitely well worth it though if it keeps my next dose on track. It was on Monday that things started to go really wrong though: I developed agonising stomach cramps and had diarrhoea and felt incredibly sick. I think it was only the large amounts of anti-sickness tablets I was taking that stopped me actually being sick. By Wednesday I perked up a bit, only to be really ill again on Thursday. Justin called the doctor and he confirmed it was a stomach bug. The fact I'd managed to catch it despite not having left the house just went to prove how vital those GCSF injections are to trying to get my white cell count back up so I have a semblance of an immune system.I'm starting to feel better now, but getting a stomach bug on top of the effects of chemo totally wiped me out, and even now, 11 days after chemo, I'm feeling incredibly weak and tired. I'm so pleased to have this dose out of the way though, despite it being worse than I'd thought it would be. I'm now two-thirds of the way through my treatment, and I'm on the downhill slope where I've had more than I've got left, which has given me a real psychological boost. I've been having chemotherapy for 3 & 1/2 months now, and I'm feeling exhausted and drained. But the end is starting to come into sight, and even a stomach bug can't take away how good that feels!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728326 Sun, 09 Dec 2007 11:47:00 +0100 1728326 http://emilymcarthur.blogspot.com/2007/11/take-two.html Number of days since last chemo: 32Number of days until next chemo: 1 (I hope)Number of chemo treatments left: still 3!Mood: uncertain and psychologically drainedHere we are again; it’s the day before my chemo is due, only this time around I can’t be certain that it will go ahead. This morning I went for blood tests at the hospital to check my cell count levels, and given my recent track record I was extremely pleased to see blood come out of the vein at the first attempt! I have no idea if my neutrophils will have multiplied sufficiently enough over the last week for me to have chemo tomorrow, but I’m really keeping my fingers crossed that the blood tests show they’re ok.I’m not sure I can face it being delayed again, I feel like I’ve been stuck at the halfway point in my treatment for ages. I have to admit I’ve felt pretty fed-up about it this week. I think in a lot of ways the halfway point in your treatment is one of the worst - you still have to go through the same amount you’ve already been through again, plus your body is starting to get tired and feel the strain of chemo. I have been feeling really tired this week, and the minute you feel like that it makes chemo seem like even more of a huge obstacle to overcome. I know I’m going to get through it, but being stuck at this point for so long has made the end seem even further away and more impossible to attain.All I can hope for is that this time tomorrow I’m getting some nasty drugs pumped into me. Amazing the things you can be reduced to wishing for isn’t it?!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728327 Tue, 27 Nov 2007 13:44:00 +0100 1728327 http://emilymcarthur.blogspot.com/2007/11/false-start.html Number of days since last chemo: 27Number of days until next chemo: 6 (cell counts permitting)Number of chemo treatments left: 3Mood: deflatedWell, things didn’t quite go to plan yesterday, which is why instead of lying in bed recovering from my 4th dose of chemo, I’m sitting at the kitchen table typing this. And it all stemmed from those problematic blood tests…I got to the Chemo Suite at 9am yesterday to be told that, as I feared at the time, the lab hadn’t been able to get any results from the tiny amount of blood they squeaked out on Monday. So, before they could start the chemo they had to repeat the blood tests and send them for fast-track testing to check my cell count levels were all ok. As usual a heat pad was wrapped around my arm to try and encourage some veins out of hiding, and then about 20 mins later a nurse tried cannulating a vein in my left wrist. Amazingly she got the cannula in first time, but then came the 2nd problem of the day: no blood would come out! The needle was definitely in my vein because there was flashback, which is when blood comes out into the little chamber at the end of the needle giving confirmation that the needle is in a vein. However, despite much wiggling around the nurse could not get it to yield any blood, so she took the cannula out and it was back on with the heat pad to try and summon up another vein. After another 10 minutes of that a second vein came up right on the outside edge of my left hand, and this time the cannula went in and some blood actually came out - hurrah!The blood tests were sent up to the lab, and in the meantime saline was run through the cannula to keep the vein open in preparation for the chemo. However, about an hour later the results came back showing that my neutrophils were too low to go ahead. Now, what on earth are neutrophils I hear you ask? Well, they are a type of white blood cell and therefore part of the immune system. If they get too low you can’t receive chemotherapy because that would only act to lower them even further, and the risk of catching an infection would become extremely high and could be very dangerous. The normal range of neutrophils is between 2.5-7.5, and mine was only 1.1, and therefore way too low. So, after all that effort to get a vein I couldn’t have chemo anyway, and after 2 & 1/2 hours I was heading home no further forward in my treatment, but with an aching arm.My next dose has been delayed for another week to give my cell counts time to come up, and until then it’s just a case of resting and trying not to come into contact with anyone who has a cough, cold, infection etc. It’s incredibly frustrating because there’s nothing I can do to help get my counts up, and also because I had psychologically prepared myself for having a treatment. Almost without realising, in the days leading up to a treatment and particularly on the morning of the day itself, you focus every ounce of your physical and mental energy, and pour everything you have into getting yourself ready to get through both the treatment and the effects that come afterwards. When it doesn’t happen, as it didn’t several times with my first cycle of chemo last year for the same reason, I am always left feeling tense and absolutely exhausted from expending all my energy in the concentration. It is unfortunately a common occurrence that your treatments get delayed through low cell counts though, and it’s just a part of having chemotherapy. It has just particularly thrown me this time because I had mapped out my treatments in my head, and roughly when I would be having them, and I had planned that I would be able to have 5 of my sessions before Christmas. That is quite likely not to happen now, unless I can have my treatment next week and recover quickly enough from it to get back into my 3 week cycle pattern. However, I know from when I had chemo last year that once your cells counts start to struggle to recover, they usually continue to do so for all your following treatments too. I think it’s just your body’s way of saying it’s had enough!So, I feel like I’m in freefall a bit now, although it has served as a good reminder to me - you don’t plan chemo, it plans you! There’s nothing I can do now except sit back, make no plans regarding future treatments and when they will be, and just hope that they don’t fall so close to Christmas that I’m too unwell to get out of bed and enjoy the festive season just a little bit. As for this next week, I’m just going to try and rest, and keep hoping that my body is repairing itself ready for my next lot of pre-chemo blood tests on Tuesday morning.EmPS. For anyone wondering how Frank Skinner was on Tuesday night, it was absolutely hilarious and the best night out I’ve had in ages - definitely worthy of being my chemo aim! (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728328 Thu, 22 Nov 2007 14:39:00 +0100 1728328 http://emilymcarthur.blogspot.com/2007/11/hi-ho-hi-ho-its-off-to-chemo-i-go.html Number of days since last chemo: 25Number of days until next chemo: 1Number of chemo treatments left: 3Mood: swinging between apprehensive and determinedJust 1 day to go before I get poisoned again, and I have to say I feel a bit up and down about this dose. On the downside I’m nervous in case the aprepitant improving my sickness turns out to be a one-off fluke. I’m also worried about whether or not they’ll be able to find a vein to get the chemo in. My anxiety over the latter wasn’t helped yesterday when I went for my usual pre-chemo blood tests to check my cell counts, and they couldn’t find a vein to get any blood out. In the end, after a lot of trying, they got a tiny bit out and just had to send it up to the lab with a note on explaining why there was so little. I’ve never had trouble with them doing blood tests before, because blood is taken from the veins on the inside of your elbow whereas chemo is always done in your wrists and hands, so now I’m even more worried that if they couldn’t get any veins there then there’s no chance they’ll find any for chemo. I guess I’ll find out tomorrow though!On the upside I’m perversely quite looking forward to this dose, because once it’s over then I’m two-thirds of the way through, which is massive. With this one done I’ll have had double the number I’ve got left, which is going to be a huge psychological boost in getting me through the final 2 treatments. I know I wrote quite a bit back before my second dose about how I was mentally dividing my sessions into blocks to help get through them, and I mentioned then that my big aim for the whole cycle was going to see Frank Skinner in mid-November, and how far through my treatment I would be by the time that came around. Well, tonight Justin and I are going to see him at the NIA - I’ve reached that point! It feels soooo good to be here!So, tonight I’m going to have a good chuckle and forget all about chemo for an evening, and tomorrow, even if they torture my veins, I’m going to try and concentrate on the fact that I’m entering the second half of my treatment cycle, and that means that every dose I have is taking me closer to being finished. Bring it on!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728329 Tue, 20 Nov 2007 14:04:00 +0100 1728329 http://emilymcarthur.blogspot.com/2007/11/chemotherapy-process.html Number of steps to the chemotherapy process: 13Number of hours it takes to complete them: 6+I’m halfway through my treatment now and have written lots about how I feel after I’ve had chemo, but not yet actually got around to writing about how it is administered. Well, now I’m going to remedy that…The day of chemo always starts early, just because the treatment takes such a long time, so I have to be at hospital by 9am which means leaving the house about 8am to get there. Once I’m at the Cancer Centre, where the chemo suite is located, then I get seated in a comfy chair and get one of my arms, whichever seems most likely to produce a viable vein, wrapped in an electric heat pad for about 1/2 hour. As I mentioned in my last entry, this is done to dilate your veins and to help make them easier to find and cannulate. The actual process of cannulation can take anything from a few minutes, to 1/2 hour if they struggle to find a vein, as they did with me last time around. So by this stage it’s usually between about 9:30-10am, and the process of being given the drugs hasn’t even started.Once the cannula is in you are hooked up to a pump, which the tube in your arm is fed through before being hooked up to the drugs at the other end. This is done so that the pump can control the flow of the drugs, and also so that the nurses can go away and leave you, because when the bag of the drug runs out the pump beeps and the nurses are alerted to the fact they need to change it. Then, before any drugs are run through, and also after each drug had finished, a bag of saline is flushed through the vein to keep it open, and to ensure none of the drugs remain clinging to the vein wall. After this initial saline flush, you receive your pre-meds. In my case these are two anti-sickness drugs, and two antihistamine drugs which are given to combat any allergic reation to the taxol. Once these have gone through it is finally time to be given the chemo drugs. First is taxol, which has to be given slowly and takes 3 hours to run through, then it’s the carboplatin, which in contrast has to be run through quickly and so only takes around an hour.So, the whole process of the chemo being administered, once the cannula is in, goes like this:SalineDexamethasone (a steroid anti-sickness)SalinePiriton (antihistamine)SalineTagamet (an antihistamine that controls acid reflux)SalineOndansetron (anti-sickness)SalineTaxolSalineCarboplatinSalinePre-meds: total time taken = 1 & 1/2 hoursTaxol: total time taken = 3 & 1/2 hoursCarboplatin: total time taken = 1+ hoursOnce all that is done it is around 4pm, and I finally get back home around 5pm, 9 hours after setting out. As you can imagine, even though I spend the whole day sitting in a chair, it is a really tiring process. The drugs themselves start to affect you quite quickly too and make you quite drowsy, particularly the piriton which often sends me to sleep for about 1/2 hour after I’ve had it. Still, the good thing is that I only have to go through it all another 3 times. I can certainly say I’m not going to miss it once it’s over!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728330 Tue, 13 Nov 2007 15:44:00 +0100 1728330 http://emilymcarthur.blogspot.com/2007/11/happiness-is-tablet-called-aprepitant.html Number of days since last chemo: 9Number of days until next chemo: 17Number of chemo treatments left: 3Mood: jubliant!Yes that’s right, it’s my first entry after a chemo treatment and I’m using words like ‘happiness’ and ‘jubilant’ rather than ‘nightmare’ and ‘horrendous’ - I can hardly believe it myself, but it’s true! And all because the promised wonder anti-sickness tablet really lived up to its reputation.The day of the chemo started well when Justin phoned the hospital and they confirmed there was a bed available for me, and that I should be at the ward by 10:30am ready to be admitted. Of course that never actually means that your bed is freshly made and empty ready for you to climb into, it just means that it’s going to be empty at some point during the day for you to have. So, after a 4 hour wait my bed finally became free and I got admitted onto the ward. Then came the greatly anticipated part - I was given a single tablet to take orally, the magic, and apparently quite expensive to the NHS, aprepitant. Once you have taken it, you wait for a hour and then have your chemo as nomal. It was quite a good job I did have to wait for an hour too, because it took them most of that time to find a vein and get a cannula in. My veins are not always very cooperative, which I guess I can’t blame them for really considering how much they have been used and abused over the last couple of years. According to almost every doctor or nurse who looks at them, they are very small and narrow, so I always have to wrap my arm in a heat pad for about 1/2 hour to dilate them and make it easier to find a viable one to use. Unfortunately this time they just weren’t having any of it, and a doctor made 2 very painful attempts at getting a cannula in (wikipedia ‘cannula’ to see just how torturous they are!), puncturing the side of one vein in the process, before I virtually screamed at him to stop! He then went to get a nurse to do it, who also got the cannula needle part way into a vein in my right wrist, before pushing it straight through the vein wall. By that stage I’d been at hospital for 5 hours, I was tense and nervous about how ill the chemo was going to make me, and had extremely painful and bleeding wrists and hands, along with the fear that they wouldn’t ever be able to find a vein, so I did something I have never done at a hospital before, I sat and cried. Fortunately they went off and found a specialist phlebotomy nurse who was really lovely, and spent about 20 minutes trying to find a vein before even attempting to cannulate. She also found a smaller needle kit and, because all the larger blue veins in my wrists and hands had been brutalised, managed to find and successfully cannulate a smaller vein halfway up my arm. It was a huge relief!By that point I was starting to think that maybe things weren’t boding quite so well for the chemo after all. But, at 4:00pm I finally started having the chemo and there was no going back. 6 & 1/2 hours later, and a full 12 hours after getting to the hospital, the chemo was over and all I could do was to try and sleep and just keep my fingers crossed that the sickness didn’t start. At about 2:00am I started to feel a bit worse for wear, so the doctor gave me a sleeping tablet to try and knock me out, which under any normal circumstances it might have done, but this was a hospital and therefore not an environment conducive to peaceful sleep! Not only are there lights on in the corridors, but patients ring their call bells so nurses are constantly moving around, there’s the noise of other people snoring/moaning/being sick, and worst of all, because on this ward there was some very ill people, there were cardiac arrest sirens with an accompanying automated voice alerting all the doctors and nurses to the cardiac arrest and telling them which bed it’s in. I think it is honestly one of the worst sounds I have ever heard because you know that not far from you someone is losing their battle with cancer. So, even with a sleeping tablet it’s pretty hard to actually nod off. But, I did manage to a bit, and at 8:00am when they come around with the drugs trolley I got another aprepitant tablet, along with a couple of the regular anti-sickness drugs I take after chemo, and by 11:00am I was feeling fine enough to actually start wondering what was for lunch. Yes that’s right, the day after chemo and I was eating and drinking! I’m not exactly talking 3 course meal, but considering after my last treatment I didn’t eat for 4 days, I was practically bouncing off the walls with excitement! I was still a bit anxious that the tablet was just delaying the sickness, but by Saturday night the nurses took my drip down, and on Sunday, after my third and final aprepitant tablet, I felt confident enough to discharge myself.Once I was back home the district nurses came in to check on me, and couldn’t believe their eyes. I was out of bed, dressed, and managing to eat and drink, it really was like I was a different person! However, with this silver lining there was a small cloud, in the form of an infection that I picked up while in hospital. So, just as I thought I was doing really well, on Wednesday Justin had to call out a doctor because my throat had swollen up - blasted hospital germs! To go along with that one of the side effects of Taxol, aching and painful joints, really kicked in and meant I could barely hobble, and Justin had to practically carry me around the house. Yesterday I finally managed the stairs on my own - it’s amazing how the smallest thing can suddenly seem like a huge achievement! My knees and ankles still feel like those of an 80 year old, and I’m still on antibiotics for my gammy throat, but I have managed a whole chemo treatment without being sick, and that brings a huge grin to my face. Not only that, but hopefully it means that for my remaining treatments I’ll be able to bring the tablet home and won’t have to stay in hospital. It may have taken 9 doses to get the right drug for me, but I’ve found it, and no matter how much it costs the NHS, I’m not letting it go!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728331 Sun, 04 Nov 2007 18:08:00 +0100 1728331 http://emilymcarthur.blogspot.com/2007/11/ready-steady-chemo-originally-posted-on.html Number of days since last chemo: 20Number of days until next chemo: 1Number of chemo treatments left: 4Mood: trepidacious!Yep, it’s come flying around but it is chemo time again, and tomorrow I will be heading back to hospital to be blasted with a whole heap of toxic drugs. After meeting with my oncologist last Friday though I have been told I now need to be admitted into hospital to have my chemo. Because I was so sick last time they have no option but to admit me onto the oncology ward so that I can be given fluids and be prevented from getting dehydrated again. They are also going to try me on some expensive, supposedly wonder tablet which will hopefully combat the sickness. I’m not entirely convinced by it, but I’m really hoping it works because if it does it means I can go back to having my remaining 3 treatments as a day patient, and just take the tablet home with me. If not, then there is one final drug they can try which will just knock me out, but which has to be administered intravenously, and so would mean all my future treatments would require a stay in hospital. So, it’s a bit trial and error again this time around, but at least I will be in the controlled environment of the hospital rather than left to manage at home. At least that’s how I’m trying to look at it. In all honesty I’m quite dreading going in just because it’s so horrible being ill outside of your own home. My oncologist wants me to stay in until at least Monday, but I’m already thinking I might self-discharge again on Sunday if I really hate it!Of course, all of this is working on the presumption that my cell counts are all high enough, and have recovered sufficiently from the last treatment to go ahead, and also that the ward has a bed for me. Anyone who’s been through the hospital system will know that beds cannot be guaranteed, so at 8:00am tomorrow I have got to phone the ward to check they have got room for me. Emergency admissions overnight may mean the answer is no and my treatment gets delayed over the weekend. Although I’m really not looking forward to going through another dose and its effects, I just want it over and done with now so I can cross another one off. So, keep your fingers crossed for me that it goes ahead tomorrow and also that it goes ok, and I’ll write again when I’m through the worst of it.Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728332 Thu, 25 Oct 2007 17:06:00 +0100 1728332 http://emilymcarthur.blogspot.com/2007/11/hair-today-gone-tomorrow-originally.html Amount of hair left: none (with the exception of eyebrows and eyelashes)Number of redundant items I now own: 33Number of items soon to be redundant: 2Number of hats bought: 12So, the time has finally come when I have no hair left at all, and, apart from being rather cold, I feel fine about it. Although it may be hard to believe, throughout the whole of the 2+ years this has been going on I have never really got upset about having cancer. I’m not sure why, it just isn’t a reaction I’ve had. When I found out I would be having chemo that would make me lose my hair though, I thought that the moment it started falling out and I had to get Justin to shave my head would be the moment I really cried. Not necessarily because I would be literally losing my hair, but because of what it meant. It’s hard to explain, but when you get diagnosed with cancer it completely takes over your life. Suddenly the hospital controls your life and makes all of your decisions for you. I have no control over choosing to go to work, going out and socialising any time I choose, making plans further than a week ahead, sometimes less etc. All of the things that I controlled in my life that made my life mine are suddenly in the hands of the hospital and the decisions they make about me. My life is dictated by their appointments, their choice of treatment for me, and so on. However, the one thing I had always retained control over was choosing who I wanted to tell about having cancer. The first time I had chemo I didn’t lose my hair, and no-one I walked past in the street could ever have guessed that I had cancer. Suddenly I don’t have that choice any more. By losing my hair then anyone who sees me will know I am ill. The final bit of control I had over the cancer has now gone, and that is what I thought would really upset me.At the moment I am feeling ok about it though, and for practical purposes it was a relief when my hair started falling out and Justin shaved my head. What they neglected to mention at the hospital is that for nearly a week before your hair starts falling out your scalp gets very painful, so that when you eventually have that morning where you wake up and there’s hair on your pillow, it’s almost good because you know it’s going to stop hurting. There’s not much point having hair if your scalp is so sore that you can’t touch your hair to wash it! So, once Justin had shaved my head then it was just a case of sweeping up behind me as I walked around the house malting, and using a clothes brush to clean my pillow every morning. Once it started coming out it came out very quickly too, which meant there were a couple of days when I had a shower and the bath looked like a hairdresser’s floor afterwards! We always had a laugh about it though, and it actually coincided with finding out I was pregnant with the twins, so I had more important things to think about than whether or not my hair, or lack of it, looked ok. Fortunately as my hair fell out no unsightly lumps or bumps appeared on my head (because you have no idea what your scalp looks like, I was worried before I lost my hair that mine might be a funny shape or something!) and I can report though that I seem to have quite a small tidy head, with no bumps on it, and some quite small ears to go along with it. For vanity purposes it is a great relief!However, my new bald status has meant that many things I now own are completely useless to me. Among them are: hairdryer; hair straighteners; hair bands and clips; razor blades and razor; epliator; shampoos; conditioners; hair brushes - and so the list goes on. Because of course, it isn’t just the hair on your head that you lose, but every bit of body hair you have. At the moment I still have my eyebrows and eyelashes, but eventually these too will go, and when they do I can add tweezers and mascara to the list of redundant items. Still, for every minus there’s a plus - I now get to shop for hats, a wardrobe item that I have never bought before. I now own 12 hats in a variety of styles and colours, and on top of that I can get ready to go out about 15 minutes quicker than normal because I don’t need to faff around with hair washing and drying etc, which means extra time in bed and no worries about a bad hair day. So, what do I really have to cry about, I’m actually pretty lucky! The only slight downside is that I’ve discovered it’s rather chilly in the cold weather with no hair, which does mean that I walk around the house in a beanie, but hey there’s no-one to see me so why should I care?!All in all losing my hair has been a problem-free experience, with no tears and no embarrassment. I did think before I lost my hair that I wouldn’t want people to see my bald head, that it would be a really personal thing, but actually I don’t care at all. Justin hasn’t recoiled from me in horror when he’s seen it, which, although I knew deep down he wouldn’t, I still worried about before the event. So, I’m just looking at it for what it is, something temporary that is simply a sign of fighting an illness I’m determined to beat.Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728333 Wed, 17 Oct 2007 17:04:00 +0100 1728333 http://emilymcarthur.blogspot.com/2007/11/another-one-bites-dust-originally.html Number of days since last chemo: 8Number of days until next chemo: 13Number of chemo treatments left: 4So one more down, but what a grim one it was. It involved, as the lesser known version of ‘The Twelve Days of Christmas’ goes: 8 district nurses, 6 hours of treatment, 5 days of being sick, 4 days of eating nothing, 3 days of drinking nothing, 2 palliative care nurses and 1 trip to hospital.One good thing, if you can call it that, was that treatment took a mere 6 hours this time, instead of the 7 & 1/2 it took the first time around. This was partly due to not having to do any paperwork, and partly due to my veins behaving much better this time and not collapsing part way through, which is always helpful! I was feeling quite upbeat when I got home, having escaped early for good vein behaviour, but unfortunately that feeling didn’t last long. At the time most people are tucking themselves up in bed for the night I was already being sick, and from that moment onwards the chemo symptoms took hold with a vengeance.My lovely district nurse came in on Saturday morning to check how I was doing, only to be greeted by the sight of me lying in bed and no doubt looking very sorry for myself. She immediately decided to set up what’s called a syringe driver to try and stop the sickness in it’s tracks. A syringe driver, for anyone who hasn’t heard of them before (and I certainly hadn’t before I had chemo) is a small pump that has a syringe locked into the top of it. The pump is set to push a certain measurement of drugs from the syringe into you, through a tube that comes out of one end of the syringe and is inserted at the other end under your skin via a needle. It means you have to be connected to a pump all the time and carry it around with you, but when you are unable to keep down anti-sickness tablets it’s the best way to get meds into you. So, with the syringe driver up and running it was hoped that the sickness would calm down and I could start to feel vaguely human. Unfortunately not though, the syringe driver drugs had no effect, and so on Saturday night 2 palliative care nurses came in and changed the drugs. By Sunday I was still being sick, so the drugs were changed again, along with the syringe driver site, as the place it was in (just under my collarbone, ouch!) became inflamed. Sunday lunchtime, and no change still. By this time it had been 2 days since I’d last had anything to drink and I was becoming badly dehydrated, so there was no option but to be admitted to hospital for fluids.Some flashing lights, an embarrassing stretcher into the ambulance infront of the neighbours, and what felt like an endless ambulance journey later, I was in A&E. I got moved onto a ward after 6 hours, and got another different drug in my syringe driver and a much needed drip, which was huge relief by that stage. I spent the night in hospital on the drip, and then by morning I decided that even if I carried on being sick, I’d had 3 litres of fluid via the drip and would just much rather to be sick in my own home than in hospital, so I discharged myself. Unfortunately the new syringe driver drugs didn’t work, and the site got inflamed again, so that afternoon the district nurses moved the driver from under my collarbone to the top of my arm, and I continued being sick. By this stage it had been 4 days since I’d last eaten and I was feeling rather wobbly. I was also starting to wonder if the sickness was ever going to end, but Tuesday proved to be the turning point, and although I still felt awful, I wasn’t sick and actually managed to eat a slice of toast, which seemed like a banquet at that time! I steadily improved each day from then onwards and now, 8 days on, I’m back eating more and drinking plenty of fluids. The simplest thing of being able to drink a glass of water still seems like the best thing on earth though!So, as you can see, this time around it was all a bit of a nightmare, and of course now I’m even more nervous about the remaining 4 treatments because I know I’m probably going to end up in hospital again each time. In terms of the anti-sickness medication there isn’t much else left they can try on me, so now I’m just waiting for my clinic appointment with my oncologist next Friday to see if there is anything else at all that can be done. Otherwise it may just be a case of being admitted into hospital for a few days on the day I have chemo to keep me on a drip, so that even though I’m sick, I’m not getting quite as dehydrated. I’ll just have to wait until next Friday to see if that is what they decide. I really really hope not! Still, I guess there’s not much I can do about it now, so I’m going to stop writing and head off to find the plainest food we’ve got in the cupboards to start trying to pile back on the 1/2 stone I’ve just lost, ready to lose it all over again in 2 weeks time!Em (Source: Diary of a Cancer Patient) Diary of a Cancer Patient blogs http://www.medworm.com/rss/comments.php?id=1728334 Sat, 13 Oct 2007 17:03:00 +0100 1728334