Saturday, 13 October 2012

expectations, a reality check and putting things into perspective

Cycle 1, Day 6

First, the expectations...

When Steve was on the Velcade/cisplatin chemotherapy drug trial in 2009, it was a pretty grueling schedule; five doses of chemo over a 21 day period.  I won't pretend it was easy, but we managed to get out and about during most "rest weeks" and the worst of side effects didn't peak until the last few cycles.  I suppose we expected something similar this time round with the current regime of pemetexed (Alimta) and carboplatin.  Just possibly not quite as bad as before, as he only has two doses of chemo every 21 days and carboplatin is generally considered to have fewer and less severe side effects than cisplatin.

Now for the reality check....

Around 10.30 am on the morning of Cycle 1, Day 2, I wrote "No noticeable side effects so far."  That didn't last long. Shortly after I posted the blog, Steve said he felt weird - he was finding it difficult to settle down, concentrate and focus on things.  Fatigue began to set in and after lunch he took himself off the bed for a rest and was still asleep in the early evening, when I decided to wake him up for his next dose of anti-sickness tablets.  He stayed awake long enough to eat the evening meal but was back in bed not long after, bucket at the bedside just in case.....

Early morning on Day 3 and he was retching into the bucket - not bringing up stomach contents, but bile/gastric juices. As before, he experienced the strange combination of (on the one hand) feeling unsettled; wandering around the house wondering what to do next, but unable to focus on anything in particular and (on the other hand) too tired to do anything much but unable to simply relax.  However, he did manage to stay awake until 10 pm with only a short nap around teatime. Other side effects of chemo are becoming apparent (look away now if you are a sensitive soul) including constipation, burping and flatulence, and there's the beginning of a small sore at the corner of his mouth which may possibly be a reaction to Alimta.

After another interrupted night's sleep and early morning bilious retch, on Day 4 Steve made a great effort to write the menu/shopping list for the week.  We managed to get out of the house to do the food shop - although it was clearly hard work for him.  However, the fuzzy head feeling seems to be improving slowly - this has coincided with the reduced dose of dexamethasone steroids he took yesterday and today. He even managed to stay awake until quite late, drawn into a documentary on TV about scientists who deliberately crashed an unmanned plane to observe exactly what happened to the aircraft itself and the crash test dummies inside.  

After another interrupted night's sleep, Steve spent Day 5 at home taking it easy, while I went off to Grand Designs at the NEC.  Pity we couldn't both go as originally planned....He was still feeling rough when I returned home and he took an early night.

Today, Day 6, if anything Steve feels worse rather than better. In spite of taking a veritable arsenal of anti-sickness pills, he had his head in the bucket every few hours throughout the night, into daybreak.  There was a bit of a panic first thing this morning as he thought he was going to run out of metoclopramide anti-sickness pills which he can still take as required (he won't run out this weekend, but will need to ask for some more on Monday if this carries on...)

His temperature went up to 37.5 C, he's been coughing and complaining about a sore/tight chest.  Worried that it might be a chest infection, we checked the cancer patients "Red Book" and based on these symptoms, he was supposed to contact the hospital Triage Assessment Team at once for advice.  After a lot of talking and persuasion on my part, he finally called the 24/7 helpline number given for out-of-hours advice, only for no one to pick up......Not good. Something we need to raise with the hospital when the lines are staffed on Monday morning.  

As the day has worn on, to my relief his temperature has gone down and he is not coughing quite so much, although he still feels poorly and is loosing his appetite.  I can tell Steve is really fed up with this already and we're still in the first week of the first cycle. How will he feel after 2, 3, 4 or more cycles?  I just feel helpless.  He's been shuffling around the house looking glum with his shoulders hunched up and freely admits he's feeling sorry for himself. 

My suggestion that we go out for a short walk in the sunshine to get some fresh air went down like the proverbial lead balloon.  Instead, he's taken himself off to bed again, which is why I am taking this opportunity to write the blog now. I may have to change it when he wakes up and tells me I've got it all wrong.  He's a bit like a bear with a sore head at the moment, not surprisingly...

I think part of the problem is that we had certain expectations about how things would be, based on his experience of chemo in 2009.  These expectations have proved to be woefully wrong. Somehow, we have got to find ways to manage what is happening now and look for the positives.....if the chemo is strong enough to do this to healthy cells, surely it must be having the same effect on cancer cells.  Leo, I hope you are under heavy bombardment in there....

Time to stand back and put things into perspective...

Alimta is proven to be extremely successful in treating many forms of cancer.  It is the only approved mesothelioma drug in the USA and the most effective way of treating this cancer currently known.  If he can handle the side effects, that's got to be good. We know of others who have gone through this regime and had a positive response, which is very encouraging.  

If Steve still feels poorly on Monday, there are people we can call for help and advice. Otherwise, he can talk through his reaction to this first cycle of treatment at the next clinic appointment on 25 October and maybe the team can tweak his medication for cycle 2. In addition, Oxford is setting up its first ever support group for people with mesothelioma. The inaugural meeting takes on 14 November, with a talk "New Directions in Mesothelioma Treatment and Care" from Dr Rahman, a consultant and senior lecturer at the Oxford Centre for Respiratory Medicine.  Liz Darlison, Nurse Consultant with Mesothelioma UK is also giving a talk about her work.  Having missed the London Meso Conference last Saturday, that will be a good opportunity to catch up!

Out in the slightly wider world, Steve's mum though still in hospital is now making progress, which is a little bit of weight off our minds.  Daughter Katie and her partner have taken another step forward along the road to buying a small flat in London, with a mortgage now agreed in principle. And I have had another photograph published in today's Guardian Weekend Magazine (the big one No 1).  Life's not all bad, and I hope it will starter getting better for Steve very, very soon...Keep your fingers crossed.

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