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.