Update on cycle 6 (part ii)

This cycle seems to have passed in a complete blur. Some of that is because it’s the school holidays, and the kids are all at home, so there’s a lot going on around me in the times that I’m actually awake, and part of it is the fact that I’ve not been awake very much!

The pain from the IV line into my arm faded quite quickly, and by the end of the first week was basically gone. So I’d class that as a positive result. I’ll need to make sure that when I go in for my next IV (Tuesday, assuming I pass the white blood cell count) that I repeat the exercise, and get two piggy-back bags of glucose, in addition to regular heat pads to keep my veins open.

The peripheral neuropathy has continued right through the entire cycle, though it has faded in intensity. However, for the first time it seems like it isn’t going to wear off before the start of my next cycle. I’m still experiencing some pain in my fingers, though that’s pretty minor, and the “slush puppie” experience when eating or drinking anything cold, though this too has diminished considerably over the last fortnight. However, I am experiencing a lot more discomfort in my feet than ever before, and that has if anything, actually got worse through this cycle, not better. Although I can walk reasonable distances, it becomes very uncomfortable, and I can’t keep up any pace. I’m also experiencing a lot of blistering and peeling of the skin on the soles of my feel, which is rather unpleasant.

My sense of taste returned towards the end of the second week of the cycle, which again is much longer than previously. Interestingly I notice that even so, there is still a very slight metallic taste to things. It seems as though this may be another side effect that is persisting (albeit at a very low level) across the cycles now. I’m compensating by eating more strongly flavoured foods

The tiredness has been pretty all-consuming through the whole cycle. I could easily sleep pretty much all the time if I allowed myself to. However, that feels like a submission on my part, so I’m trying to limit how much I give in to it. I figure if I set myself a couple of goals a day and achieve them (even if they’re trivial) then at least I know that it’s still me in charge of my life, and not the drugs. I suspect that my tiredness during the next couple of cycles is going to be even more pronounced though, and that’s going to be really hard to overcome.

Still, I have quite a lot of things going on around me at the moment that all require attention, so with some careful scheduling I ought to be able to keep myself busy with tasks to achieve each day, while still allowing myself enough time to rest so that I don’t get too over-tired.

I must admit that I’m increasingly just counting the days (38!) to the end of the last cycle though. I can’t believe how quickly this illness and it’s treatment has eaten its way through the last 6 months, and I still have 6 more weeks of chemotherapy, a months recovery, an operation and then a further month or two of recovery from that to get through before I get my life back. It’s going to end up being nearly a year out of my life before I’m finally through with it. That reminds me how good IBM has been in helping me through this; for all their faults (and they do have their fair share of them) my employer has been superb over this; many lesser employers would have been far less helpful and caring.

Weight loss

Back in early March I was weighed as part of the pre-clerking process for my cancer operation. 108Kgs. Extremely overweight for my height, and largely responsible for my high blood pressure, incessant snoring and poor sleep regime. Possibly also a contributory factor in my getting the cancer too

Yesterday I weighed myself. 87Kgs. I’m still overweight, but it’s a huge improvement.

I’ve lost 21Kgs (46lbs), or 20% of my original body weight.

I now have a waist again, my blood pressure is significantly reduced, and I no longer snore. It’s hard to tell if my sleep patterns are improved at the moment since I’m somewhat stressed and my chemotherapy has me permanently exhausted, but I’m hopeful that when I complete my treatments, I’ll regularly be getting a better nights sleep too.

My long term goal is to lose around 5kg more, which will bring me down to 82Kg or so. I’m not a naturally slim build, but I figure I can do myself a world of good by managing my weight more carefully. The only concern I have at the moment is whether or not I’ll put some of the weight back on when I come off the chemotherapy drugs.

But at the end of the day, it’s in my own best interests to ensure I do not.

Update on cycle 6 (part i)

There really hasn’t been a great deal to report on during this cycle; my symptoms have largely followed the same course as previous cycles, with the main side-effects being the pain in my arm, peripheral neuropathy, loss of taste and tiredness.

As I mentioned in this post, I made sure I got a lot more glucose solution fed into me at the same time as the chemotherapy solution in the hope that this would minimise the problems I’d experienced in cycle 5 with swelling and tenderness of my arm. To a large degree this worked well. I still had a lot of pain around the site of the cannula itself, and my whole arm was slightly swollen and tender, but nothing like as bad as during cycle 5, and those affects wore off quite quickly. Certainly by the weekend (4 days or so) my arm was no longer painful to the touch, which was a significant improvement over cycle 5, and something to try to continue into cycles 7 and 8.

My peripheral neuropathy has increased in severity since cycle 5. The pain in my fingers has been present pretty much all the time, rather than just when exposed to “extreme” cold (fridge/freezer etc). In addition I’ve had much more extensive effects in the larynx, with me sounding much more “croaky” than in previous cycles, and being much more sensitive to the temperature of food and drink; cold drinks, yoghurts, ice creams etc have all been written off the menu as they provoke a most strange tightening sensation in the throat. The most “interesting” effect however has been the apparent spread of these effects to my feet, where I’ve experienced a lot of tenderness and “pins and needles”. It’s mostly just irritating of course, though walking any distance soon becomes positively uncomfortable, especially if I’m keeping up any sort of pace. Over the last couple of days I think I’m seeing all these effects starting to fade, which is good. There is a portion of ice cream waiting in the freezer with my name on it!

Loss of taste has been much more pronounced this cycle than before. I woke up on the morning after the IV infusion with a metallic taste in my mouth that has pretty much remained with my all the way through this cycle so far. Food and drink are all tainted by it to a greater or lesser extent; delicate flavours are completely swamped by it, and stronger flavours seem to be subtly altered. In short, nothing tastes as I’d expect it to, which has been most odd. The result for me has been that I’ve been largely uninterested in eating – it becomes something I do because it’s necessary rather than something pleasurable. This in itself is also interesting; I’ve become much more aware of when I’m really hungry, and need to eat something, rather than just eating something because it’s lunchtime, or I’m bored etc.

It will be interesting to see if (as the effects fade) I can continue to eat only what I need to, when I need to, rather than just falling back into “eating by habit” again. I suspect that if I can, I will end up a much more healthy individual.

Tiredness has been by far and away the worst I’ve experienced so far; it’s not unusual for me to find myself sleeping all through the day as well as the night, and yet still feeling exhausted. Added to the general apathy that comes with all the codeine I’m taking, and it’s probably unsurprising to hear that the days seem to fly past without me actually achieving very much. And to some degree that explains some of the long pauses between updates to this blog!

However, we have managed to get out as a family for a couple of days during this cycle, and it’s been great to put the treatment behind me for a while and do “normal things” for a time. But it’s a case of borrowing from Peter to pay Paul – 3 hours wandering around a country park with the kids on Sunday afternoon resulted in me sleeping in until the early afternoon on Monday to recover; but it’s worth it to get some normalcy back into life.

I still find the speed with which this phase of the treatment has come on surprising; the first few cycles really didn’t seem to have much affect on me, but these later cycles are much more severe, with big jumps in the intensity of the side-effects from one cycle to the next. Although I was warned that the effects of the chemotherapy would be cumulative, no-one really explained when I might start to see these effects, or when they would start to intrude into life. Perhaps they simply didn’t know – it’s clear that the reaction to all these drugs is very personal, and varies dramatically from person to person. But for me it would have been helpful to know the best and worst cases, simply to help me to set my expectations. I look back on some of my earlier posts on this blog and realise that I was being quite naive about what I was facing.

But then again, with that naivity came a lot of self-confidence, and that’s been worth a lot in continuing on through this treatment.

Contact lenses – the final decision

The various trials with contact lenses, trying to find the best solution for my aging eyes have all now finally come to a close. In the end I decided that the two mono-vision contact lenses gave me the best compromise for my typical daily use. So, my left eye has a “reading optimised” lens, and my right eye has a normal “distance optimised” lens. My brain then works out which eye to use for any given focal point.

Very close work is still quite severely constrained – so fiddling with tiny grub screws and gears from the insides of a clock (for example) is still a nightmare. But then I don’t tend to do that very often, and as the optician pointed out, there is nothing to stop me from using a set of cheap +1 reading glasses in addition to the contact lenses, which will bring close work into very sharp focus indeed.

So, with that decision made, it then becomes a matter of just buying the lenses & solutions. These lenses are monthly disposables, and the optician runs a scheme to pay monthly for them. The cost works out to be £11 a month to join their discount after-care scheme (which runs for a minimum period of a year), plus £12 a month for my lenses, plus £3 a month for solutions. Grand total over a year, £312.

Which was a heck of a lot more money than I was expecting. So I went off and price-checked on the internet.

Vision Direct offer a 6 month supply of exactly the same lenses for £59. A 6 month supply of their solutions are £16. So a years supply of lenses and solutions would be £150. To keep the comparison fair I would then need to allow another £50 for my next professional contact lens after-care appointment, making £200 in total.

The £112 extra for buying from the optician appears to get me a discounted price on further pairs of glasses, sunglasses, and any additional after-care appointments that I might need for free. Alternatively you could view it (as I do) as a healthy profit margin, as it’s offering facilities that the majority of customers are probably never going to use.

Initial impressions of cycle 6

Since having my blood tests the day before my scheduled IV infusion worked so well for cycle 5 we decided to do the same thing for cycle 6. It means my oncologist has the very latest blood results for my consultation (which always happens on the day prior to the IV) and means that I shave at least 2 hours off the time that I spend in the hospital, which is not the nicest of places to spend your time, especially while hooked up to an IV line.

Except Monday came around I just wasn’t feeling very well. Nothing specific… just very under the weather. And sadly, it showed, as I failed the bloodtest by a whisker – this was my absolute neutrophil count, which ideally needed to be 1,500 to continue with the treatment. I managed only 1,400, which my oncologist declared to be “good enough”, provided that a retest the following day showed that the count was either the same, or better.

So Tuesday morning I went into hospital with L. and the kids; they hung around keeping me company until the bloodtest results came back, before heading off to spend a few hours at a nearby animal sanctuary/petting zoo. As it turned out, my repeat bloodtest passed the cut-off, with a score of 1,600, so all systems go. Well, mostly. By this stage I’d reached the point where actually I’d rather have failed the test and been allowed to go home for another weeks rest and recovery – but it was not to be.

So L. and kids headed off for their day out, while I settled down to a good book and a more proactive session with the nurses, trying to ensure that I got enough piggybacked glucose and heatpads to mitigate the problems I have with the arm where they introduce the IV. As I mentioned in a previous post, I’d wondered why the oncologist couldn’t specify the IV treatment in a more dilute form (say in a litre of glucose, rather than the 500ml it seemed to always come as) removing the need for the piggybacking of more glucose fluids. When I asked him about this it turns out that there are technical reasons why this is done, revolving around a minimum concentration at which they are able to make up the medicine where it remains effective. Frankly I got lost in the explanation, but came away satisfied that I just needed to ask for higher flow rates in the piggyback solutions.

So in the end I had the nurses run 2 x 500ml piggyback glucose bags in to me rather than the previous 1, and kept regularly changing to fresh heat pads on my arm all through the 3 hour infusion. The result is that the back of the hand where the cannula was inserted is only mildly painful, I appear to have no swelling of the hand itself, but I still have considerable tenderness in the rest of the arm. After 24 hours it seems to be improving, but I suspect it’s going to take a few days. Time will tell.

Other symptoms are as with the previous cycles. The tiredness is as bad or worse as I’ve had before. I’m finding it hard to stay awake today, despite not wanting to go to sleep (if that makes sense).

Peripheral neuropathy is present in hands and throat, and I’ve been experiencing tingling in the feet and toes that seems similar, though nowhere near as bad as in the fingers. That seems to be wearing off quickly, though the throat and hands do not.

Hiccoughs are present, especially after eating or drinking anything. So far no major attacks, just a few isolated hiccoughs, which are easy to manage. However, from previous experience I suspect I’ll be seeing more of them, probably as extended attacks, which are less pleasant.

Food is now tasteless again, which is frustrating. We have fresh pasta and sauce with ciabatta planned for dinner tonight – something I really enjoy normally, and I just know it’s going to taste of metal and not much else. Still, I suspect it will mean I’ll eat less over the next few days, which always helps with the (stalled) weight loss programme!

Overall I can see I’m making progress with the chemotherapy, and I can now see why all the healthcare professionals were so sceptical when I kept asking them about going back to work, and working part time, etc etc. It’s now patently clear to me that I couldn’t work effectively to any kind of schedule while I’m going through this treatment – it’s just too debilitating.

Still, I only have another two cycles after this, and then the operation to reverse the ileostomy. By the end of the year, with the help of my Occupational Health department I ought to be starting to phase back into work again, which will be a huge relief.

American healthcare reform

I’ve been watching the discussions in the media and on the internet (such as this somewhat one-sided website) around President Obama’s attempts to reform the US medical system with considerable dismay. As many of you know, I’ve spent quite a lot of time in America over the years, and like any country there are aspects of it that I like, dislike, love, and hate. One of the things that falls squarely into the latter category is the disparity in quality of life between the haves and the have nots, and particularly how this affects the ability to get access to healthcare.

I’ve known people in the USA go through periods of their life where they were struggling to pay their basic living expenses, being forced to borrow money to take their sick child to see the doctor. The safety net appears to be set so low that to all intents and purposes it doesn’t exist.

And now we have right-wing American politicians and media drawing largely factless and unfavourable comparisons, based on carefully chosen examples from the UK healthcare system. Needless to say, as someone who has had their life saved by the UK healthcare system, I find this rather galling.

So let me state my view of the current American system; from what I’ve seen, if you have private healthcare, or are rich enough to self-fund, then you can have immediate access to the most expensive (usually perceived by Americans as “the best”) treatments that are available anywhere in the world. If you don’t have private healthcare or money then your chance of getting anything beyond the most basic emergency room cover is minimal.

Whereas in the UK, we all pay a proportion of our income towards central provision of healthcare, which is provided free of charge at the point of demand. If anyone in the UK is ill they can see a doctor free of additional charges. If their condition requires referral to a clinical specialist (as mine did) then that again is provided free of charge, as are any further treatments that are required.

If you want to access private medical care in the UK then you can; you can self-fund or take out private medical insurance. You still pay for the NHS, but you can “top it up” if you want. In general that means you get much faster access to non-critical medical procedures, you get to choose your care-team, and you get to stay in a private room rather than a general ward. You may or may not get to spend more time with your care-team.

Is it worth it? Depends on your perspective. In my case the radiotherapy, surgery, post-operative care, and chemotherapy, not to mention the many years of subsequent diagnostic follow-up work that are needed to ensure on going health would all have been provided to me free of charge on the NHS.

In my case I used my private medical cover to fund my radiotherapy, purely because it simplified the scheduling of the treatments. It didn’t provide the treatment any faster, or provide any different treatment. I had my surgery under the NHS because the complexity and length of surgery was such that I wanted the treatment carried out in a hospital with 24-hour access to surgical staff – not the case in a private hospital. My post-operative complications meant that had I chosen to undertake the surgery privately then the private hospital would have transferred me back to the NHS anyway – they don’t do long-term care, as it breaks their business model. I’m now doing my chemotherapy privately, purely for convenience – the treatment and timing is identical, but the scheduling of each of my IV sessions is much more flexible, and the surroundings for the 5 or 6 hours I spend undergoing the infusion are much more pleasant.

But perhaps most telling of all, back in 2000 (the last time a ranking was produced) the UK NHS was rated 18th in the world by the World Health Organisation, whereas the USA only managed to get to 37th place. The most recent 2009 data from the WHO Statistical Information System shows that healthy life expectancy is 72 in the UK, but only 70 in the USA. And life expectancy is 80 in the UK versus 78 in the USA. So you have a longer healthy life in the UK, and then our healthcare system keeps you going longer in infirmity. And that’s despite healthcare spending per capita in the USA being nearly 3 times that in the UK ($6714 vs $2784), and this not taking into account the skew of spending across the US population.

But it seems that fat cat politicians and media moguls the world over never like to let the facts get in the way of a good bit of spin…

Ready to start cycle 6?

Errr … maybe.

Today I failed the blood tests that determine if I’m healthy enough to cope with the next cycle of chemotherapy. My white blood cell count is marginally too low, which indicates that I’ve not fully recovered from the last cycle yet.

Since its marginal the doctors want me to turn up to hospital tomorrow anyway, and they’ll rerun the blood tests in the hope that I’ve recovered enough overnight to pass the test, and then have the next IV infusion.

The irritating thing about this is that it meant an unnecessary trip to the hospital today (to fail the blood test), and possibly another unnecessary trip tomorrow (if I fail it again), or at best a much longer time spent in the hospital than I’d been expecting, as it will take them a couple of hours minimum to rerun the blood work, on top of the three to four hours taken to run the infusion into me.

Which is all rather frustrating.

Update: Had a second bloodtest this morning, which was a borderline pass. Since the trend is upwards and I’m now over the threshold the hospital went ahead with the IV. I’m officially on cycle 6 of 8 now, which is three-quarters of the way there. Really, really looking forward to the end of this; each cycle gets harder to cope with. Feeling pretty dreadful right now, will post an update once I’m feeling a bit better.

Update on cycle 5 (part iv)

I’m nearing the end of the drug-taking part of cycle 5, with only a day to go before I have my “resting” week. Almost all my side-effects have gone now.

The sensitivity and pain in my arm has faded dramatically. There is still pain around the injection point, and although it’s not as bad as it was, it’s still painful. This has been as bad as any of the previous cycles, and something I’m going to have to mention to the oncologist. I really don’t want to have a PICC line put in, so it’s going to be a balancing act between the side-effects of keeping going as we are and the unpleasantness of going for the PICC line. At the moment neither seem ideal.

The peripheral neuropathy has now faded to the point where I only notice it if my fingers get noticably cold, which is largely avoidable, and easily bearable for the times that it’s not.

The hiccoughs have not returned after their initial showing early in the cycle. Hooray!

The metallic taste to everything has slowly faded away over the last week, so food is now more interesting again.

The tiredness has been worse than at any time previous to this, and seems to be continuing unabated. I’m permanently tired, and sleeping far more than I would have believed possible. I suspect this is something that I’m just going to have to get used to, as it’s likely to get worse over the remaining cycles, not better.

Finally, by being much more fussy about what I eat and what I avoid, I seem to have been able to manage my ileostomy much better this cycle. By heavily restricting my diet (helped in large part by my not particularly wanting to eat much, thanks to everything tasting metallic) I seem to have managed to keep my ileostomy output much lower. It has however, made preparing and eating food with others that much more difficult, as there are so many things that I need to avoid. Thank goodness I won’t have to continue like this for the rest of my life.

The sound of music

My elder daughters both play piano and flute, and have the shared use of a piano and a flute between them. So far that’s worked out really well, but contention for the flute has been getting difficult, and is getting worse now that they are both starting to talk about joining flute ensembles and the (same) school orchestra.

Meanwhile our youngest will start junior school this year, and will also be offered music lessons. Fortunately she wants to play something (anything?!) different to her sisters, but this means finding yet another instrument for her. We’d been starting to think about what we could do about this, when as though by magic, everything came together this weekend. My eldest daughters godmother mentioned that she had a flute that she no longer used, which she was happy to lend to “J” long-term, and a clarinet came up for sale through our local church at a very reasonable price.

So on Saturday I went to visit “J”s godmother to collect her flute. I had a great time too… Kirsty lives just far enough away that it’s difficult to just pop in, so I’d not seen her in several months. We spent a great morning quaffing coffee and chatting about everything and nothing, before going out and grabbing lunch together. It was just like the old times. It’s hard to do things like that now that we’re all so busy with work and families, but this convinced me that I need to make an effort to spend more time with my friends – it’s too easy to let it slide for too long.

Meanwhile my beloved wife had been persuading talking to our youngest about the clarinet, and playing her some clarinet music to see if she liked the sound of the instrument. Fortunately she did, so by the end of the day we became the proud owners of a rather beautiful Yamaha clarinet, for an extremely good price. Her school offers clarinet lessons, so with a little luck we’ll be able to get her enrolled in those when the autumn term commences. We’d like her to learn the piano too, but with three piano players in the house now I’m hoping that we can at least get her started on that with some informal lessons from within the family.

Saturday evening and much of Sunday the house was filled with the sound of flutes as my two eldest tried to play some pieces together. A job for this week is to find them a book of proper flute duets to play. Meanwhile our youngest has started learning the fingering on “her” clarinet, and can already extract a series of notes from it. It occurs to me that when the kids finally start leaving home, it’s going to be very much quieter around here. I’ll miss it.