THE JOYS OF SPRING

Time for a quick update I think - although it's only a fortnight since my last post, several people have contacted me wondering if I'm OK as I haven't written in a while. I very much appreciate the concern behind this, but in this case it stems from a very welcome week of rediscovering life outside of cancer and health concerns!

I'm very glad to say that I've been recovering well from the SIRT treatment, and the side-effects I worried about haven't really been an issue. If anything, it's been the long-familiar effects of the chemo which are the nuisance - I haven't really noticed anything extra from the radiation. But as it's now 4 weeks since the last chemo, those are gradually but systematically improving: I have more energy, the nosebleeds from low platelets have stopped, I no longer feel cold to the bones all the time regardless of the weather, and I spend less time fishing hair from the plughole after washing my hair; and all these things are brilliant for the morale. The neuropathy in my fingers is the one thing which hasn't improved, but my alternative doctor in Sussex has recommended a supplement (alpha lipoic acid, an antioxidant which is well-established as helping counteract nerve damage, not just for people on chemotherapy but also in type 2 diabetes) so I feel much less anxious about that than before. Of course I'll still have to wait and see whether it recovers, but I'm not focused on it and worrying like I was before.

The other thing which has made a difference is that, following the SIRT, I have to take steroids for a month (in a decreasing dose throughout that period). In many ways I hate steroids, as they give a kind of brittle, wired sensation which can make it hard to relax or sleep, but I think they've boosted my mood considerably, as well as giving me the energy to talk animatedly with the lovely friends and family who have come and visited me during this recuperation phase. They also stimulate the appetite, and although my sense of taste is pretty poor still from the chemo, which makes eating fairly unrewarding, it's been great to be able to eat decent portions and to have an incentive to eat. It sounds a small thing, but it's really broken that very negative association I'd been feeling with food over the past 4 months, which had made every meal time a chore, a struggle and a burden because of the discomfort and inflammation in my stomach and intestinal tract. And of course, eating more gives extra energy in itself.

So I'm feeling considerably better than I was a fortnight ago. I'm beginning to realise just how stressful March was, with the lack of information about the SIRT, the uncertainty about whether I'd make it to the States for the wedding, the physical toll of travelling, and the fears about how I'd cope with the radiation treatment when I was in such a depleted state after 10 cycles of chemo. It was very tough, and trying to prepare myself for up to 6 weeks of convalescence when I already felt exhausted was a pretty bleak prospect. Now that it's all over, and I've tolerated it so much better than I'd expected, and the chemo is working itself out of my system, I feel a huge sense of relief. 

I know at some point I'll have to face finding out whether SIRT has worked in stabilising the tumours, and to deal with there being no more medical options left - but that's not for another couple of months yet, so I've now got a window where I can actually enjoy life again. Now that I'm coming out of it, I can see how throughout the chemo my "normal" was feeling a bit rubbish, and when you're not feeling great physically it's almost impossible (in my view) not to feel a bit low mentally too. It's only now, when I've started to actually find myself thinking "ooh, sunny day, how lovely", or "maybe I'll do x y z that I've procrastinated over for so many weeks / months" that I can see how depleted I've been and what a struggle it's been. (Of course, my usual caveat: I know very well that many many people have a much harder time on chemo than I've had, with serious health complications and painful and / or distressing symptoms - all the same, that doesn't diminish what it's been like for me.) 

I can also see now to what extent my world had shrunk down to medical and health appointments, keeping up with close friends, and making it through orchestra rehearsals - but even within that, every day was an ongoing series of anxious decisions - what to eat; whether I could face another cup of green tea to get up to my required 2 litres of fluids a day; whether the positives of seeing a friend and feeling cheered up outweighed the negatives of being tired by the effort of socialising; whether I should distract myself with the easy options of reading or watching TV or do nurturing things like writing my journal or meditating. Running through everything there were endless "shoulds" and worries about choosing the right thing. I'll say more about all this in another post, as it's something I've been thinking about a lot. 

But for now, even though I still don't have a huge amount of energy, I'm aiming to lighten up and enjoy things in a way that I just couldn't during the chemo months. Of course I'm not the only person who's found this a long, dark, cold winter - but the metaphorical elements of new light, life and energy appearing with the spring has a particular resonance for me this year. I haven't been doing anything special, and nothing's dramatically different externally, I've simply been able to take  pleasure in normal activities, and be interested in life again. Of course there are still days when I'm weary, stressed, low or frustrated, but it's just fantastic also to have times when I find myself spontaneously feeling uplifted, or enthusiastic, or humorous, or optimistic, for no particular reason. I like it!

And even more precious new life....

Xavier, my friend Sheila's son, born in February

My cousin Amanda and her husband Jon's new baby, Freddy, born 3 weeks ago

TREATMENT COMPLETE!

I'm sorry that it's taken me a while to update this...

I'm glad to say that the SIRT treatment (Selective Internal Radiation Treatment) all went ahead smoothly last Tuesday. As far as I know it all went to plan, but they gave me a higher dose of sedatives this time and I was very sleepy and woozy throughout most of it (which I was quite happy about! - as with the first part four weeks ago, I spent around two hours on the operating table and then another hour having scans to check all was as it should be, so dozing my way through it was very welcome.)

I spent a further night in the Marsden and was discharged on Wednesday afternoon. I'm on some follow-up medication - steroids, to prevent inflammation in the liver, guard against any allergic reaction to the beads, and give the immune system a bit of a boost; antacids to protect the stomach and gut from any adverse effects; and a drug to prevent any irritation to the gall bladder (which can get inflamed if any of the radioactive beads get into it) - and will have regular blood tests over the next couple of months to monitor how things are going. There'll be a scan done in 3 months and from that they'll be able to see what the impact of the SIRT has been. It feels a big relief to have some time without as much intensive contact with hospitals as I've had recently.

In the meantime I'm feeling better than I'd expected (or feared) - tired, and not wanting to do much, but thankfully no nausea or pain. Over the first couple of days I felt some sensations of discomfort at times in my liver, but nothing major, and it was kind of reassuring to feel that the radioactive beads were doing something. The radiation wears off within a week or so, and I'm glad to say no-one treated me as if I was contagious!

Close friends and family have been wonderful in setting up a rota of daily visits, to help out with shopping and cooking, and to provide moral support and company while I'm recovering, and that's boosted my mood immeasurably. Resting and doing very little can be good physically but can also feel quite depressing and limiting, as I found out in the week before the procedure - there's definitely a balance to strike. So I feel lucky to have such good support around me, and very relieved that so far I seem to be tolerating it pretty well. 

The challenges of the last few weeks have forced me to question where I'm at and  how I go on from here, so there may be a couple of more reflective posts coming up at some stage, but I'll leave it here for now. Thank you all again for your messages of support and good wishes - it means a great deal to me.

YOU COULDN'T MAKE IT UP...

A bizarre and very unexpected twist in the story! I went into the Marsden on Monday early evening as planned; I had preliminary blood tests done to check that everything was OK for the next day's procedure; I was given antacids to protect my stomach, and intravenous fluids overnight, as I had to fast from midnight. On Monday morning I was given anti-sickness medication and steroids (to prevent an allergic reaction to the radioactive beads), then, with a nurse escort, I was taken in hospital transport down to Chelsea & Westminster, arriving feeling a little nervous but psyched up for the treatment...

...only to discover that in C&W's diary, I was booked in for next week, not this. 

... and seven days

Clearly there'd been a major breakdown of communication between C&W and the Marsden, and somehow the fact that they each had different dates for the procedure hadn't been picked up. Everyone was terribly nice and extremely apologetic (while we were waiting for transport back the nurse bought me breakfast!), but it still means that I have to come back next week. (The beads are specially ordered from manufacturers in Australia, and go via Germany to be activated with radioactivity, then are delivered - presumably in a well-sealed container - to the UK within hours of the insertion, so there was no way the procedure could be brought forward.)

I was fairly assertive with a Marsden SHO, and later on the phone with my specialist nurse (I think the problem arose as she'd just come back from sick leave but it wasn't clear what her colleague was still dealing with on her behalf and what she was assumed to have picked up), but in fact I was rather relieved not to have to face the treatment just yet, and to have more time to recover from jetlag and chemo. It was nice coming home early, and feeling relatively well and independent - a bit like an unexpected day off work when it snows! So, apart from having to rearrange kind friends and family who have set up a rota to look after me, I'm treating this week like a "bonus week" to relax and take things easy. For a control freak, this seems a remarkably sanguine reaction! yet it doesn't really make much difference - it's just one of those things. I guess we never know if things happening at a different time would have changed the outcome.

So thank you for the good wishes that many of you have sent me, and I hope you've still got some left over for next week! It'll be the same timetable: going in on Monday afternoon, the procedure done on Tuesday morning, and a night or two in the Marsden before coming home to my lovely team of helpers. Thoughts, prayers, healing vibes or whatever you believe in all gratefully accepted!

BACK INTO THE MEDICAL FRAY

After the relative respite of being in the States, it wasn't easy coming back into being confronted with all the medical issues again. I landed at Heathrow at 7 a.m. after barely any sleep, and by 10.30 that day was at the Marsden having blood tests. Demoralisingly, even after an extra week off chemo, the results aren't great: I'm quite anaemic, which explains (along with the trip away) how exhausted I am, and my platelets and immune system markers are still pretty low (the low platelets mean I have nosebleeds, which I find very trying), but they were OK enough to go ahead with chemo. However, over the past cycle I've noticed that the tingling and numbness in my fingertips has become constant, which is known as neuropathy and is a side-effect of one of the chemo drugs, oxaliplatin, which affects the nervous system. Mostly it wears off after chemo finishes, but in some case it can continue to get worse, and for some people the damage is irreversible and permanent. It's a very scary thought, and I've worried a lot about it: as well as making difficult things like fastening buttons and writing, it would jeopardise playing the violin, which would be gutting (at the moment I can feel it when I play but it doesn't get in the way). So the doctor cancelled the oxaliplatin for this last cycle, and instead I just had the other drug, fluorouracil. (That's the one administered over 24 hours, so sadly I still had to have the pump!)

It felt weird to be having my last cycle of chemo, probably ever - on the one hand I just could not wait to be finished with it (and counted down the hours till the pump was disconnected for the last time), but at the same time it's quite frightening to lose the routine and reassurance that something's being done to fight the cancer. Thank goodness for the radiation treatment - if that wasn't happening I think this would be a very bleak time.

Especially as it was decided, that same first day back, spaced-out with jetlag and exhaustion, that I should have a CT scan to evaluate the effect of the chemo before the radiation treatment. It meant a lot of extra waiting around but it makes sense to be able to differentiate between the effects of each of the treatments. Unfortunately the results (which I got 2 days later, when I was having the chemo) were disappointing: there's been further growth in all the tumours. This makes it fairly clear that the last four cycles of chemo haven't worked, and it's a huge blow that things have continued to get worse. I've struggled over the week with fear, anxiety and upset, and I've felt quite fragile and demoralised. Ironically a number of people have commented on how well I look at the moment, especially in the wedding photos, and while of course I don't at all want to look ill, it feels confusing and misleading to be congratulated on looking well when things inside my body are so very different. The one good thing is that the cancer hasn't spread outside the liver, so the SIRT treatment can still go ahead as planned. There's certainly a lot riding on it....

So I go into hospital today, Easter Monday, with the treatment taking place the following day, and I'll be in for two or three nights. I'm not sure how I'll feel afterwards - reactions seem to vary considerably across different people - but I'll update the blog when I feel up to it and in the mood to write. Side-effects can include abdominal pain, fever, nausea, and extreme tiredness, so don't worry if you don't hear anything for a bit - I'm planning to take things pretty easy for a couple of weeks.

In this rather downbeat, grim and nerve-racking time, it seems a good moment to share with you the story of someone who's been following my blog and who kindly sent me the story of his experiences caring for his wife while she had cancer. I've found it inspiring and encouraging to hear that recovery can happen, even against the odds, so at his request I'm copying it here, in his (and my) hope that it will be useful and uplifting for you as well.

Finding the Strength:  One Battle with Cancer

In November of 2005, my wife Heather was diagnosed with rare and deadly cancer called malignant pleural mesothelioma.  It was only 3 months earlier that we’d celebrated the birth of Lily, our first and only daughter, and we could not have been more devastated by the news.  

Among the options the doctor gave us for our next step was Dr. Sugarbaker, a mesothelioma specialist in Boston.  My wife and I decided that if she was going to have any chance of beating this terrible disease, she would need the best care possible, and we were prepared to do anything to get her just that.  We told our doctor that we would be going to Boston to meet with Dr. Sugarbaker.

Shortly after the diagnosis, my wife was unable to work.  I could only work part time, in order to be there to care for her and Lily.  The majority of my time was spent handling my wife’s medical arrangements and taking care of our daughter.  It wasn’t long before I found myself awash with fear of my wife dying and leaving me alone to raise our daughter by myself.  I saw myself as a broke, homeless, widower and single father.  More than once I sat on the floor bawling like a baby until I could push that feeling of hopelessness aside.  I knew I had to be stronger for Heather.  The last thing she needed was to see my fears.

Luckily, we were blessed with help from all corners.  We’ll never be able to truly thank everyone who extended a helping hand to us in our time of need.  If I had any advice to offer to those struggling like this, it is to accept every offer of help that comes your way, big or small.  Any offer of help can be a huge weight off your shoulders, and at the very least will serve as a reminder that you are not alone in the fight.

With the emotional and financial support of family, friends and even strangers, we fought the battle and weathered the worst of times.  Heather went through mesothelioma surgery, radiation and chemo.  Despite the odds against her, she managed to beat this disease.  Seven years later my wife is cancer free and healthy.

Not surprisingly, the entire ordeal has reminded me how precious time is.  How fortunate I am to have a good family and a support system that kept me going even when I thought I couldn’t.  Two years after Heather’s diagnose, I went back to school to study Information Technology full time, a dream I thought I might never accomplish.  I graduated with honors and was the class speaker at my graduation ceremony.  Considering my situation at home, I could never have imagined I’d have been on that stage, giving that speech.  I told my fellow graduates that within each of us, there is the strength to accomplish incredible, even impossible things, if we just believe in ourselves and never give up hope. Lily and her mother were in the audience to cheer me on, and that was the greatest reward of all. 

Cameron von St James

Thank you, Cameron, for this message of hope.