Sunday, 3 February 2013

The psychology of chemo cycle 6

Now that Steve has had the sixth and final session of pemetrexed/Alimta and carboplatin, we have both fallen into the trap of thinking that for all intents and purposes, this regime of chemotherapy is over. 

Hopes have been high that things would return to "normal" now, especially as Steve also had three units of fresh blood to boost his haemoglobin level, and with it his energy, following chemotherapy.

After four months of living with the side effects of chemotherapy and associated medication, Steve has been looking forward to his mind and body reverting to its pre-chemo condition (other than the mesothelioma!) and I have been fantasizing about places to go and things to do after being largely homebound for what feels like a very long time.

The upshot of these great expectations is that we have felt a bit disappointed and rather let down by the way he has been feeling over last few days.  We need to manage our expectations more realistically.  

The reality is, of course, that the final cycle of this chemo regime is far from over.  In fact, it's less than a week since Steve had his last dose of drugs and the marathon blood transfusion session.  The poison is still in his system and will be for some time to come.  Not surprising therefore, that the side effects of treatment still loom large on a daily basis.  

Every chemo cycle has been subtly different in terms of how Steve's body has reacted. This time round, it's the problems with a bad taste in his mouth which have been getting him down.  It's happened every cycle, but cycle 6 seems to be noticeably worse, possibly because he was looking forward so much to it getting better.  Food tastes fine when he eats, but some flavours persist long after the meal has finished, eventually turning into "off" tastes which linger in the mouth.  Using a mouthwash simply replaces the bad taste with another strong flavour which quickly goes sour, leaving him back at square one.

Yesterday, in an effort to counteract these bad tastes, Steve munched his way through lots of sugar-free sweets which brought some periods of temporary relief before the problem returned with a vengeance, making him quite miserable and frustrated.  At times like this, I feel quite useless - unable to think of anything to do or say that will make it better.  We just have to keep reminding ourselves that things will improve, it's only a matter of time.  

In the meantime, fresh orange juice during the day and French cider in the evenings are Steve's current drinks of choice as they both seem to cut through the bad taste.  I am so looking forward to sharing a bottle of good wine with him again over a meal, but that will have to wait a while longer. I don't like to drink alone, so one consequence of Steve's taste problem is that my alcohol consumption has reduced noticeably, which has got to be a good thing. 

As the next hospital appointment is not until the end of the month, I'm raring to get out and about again - a strong case of winter cabin fever, I suspect.  However, Steve's immune system will be at its most vulnerable next week, so exposing him to places where large numbers of people are gathered together, such as galleries, museums, cinemas and even buses and trains would not be a good idea.  That doesn't have to stop us thinking ahead a little bit though!

Rather than dwell on unfulfilled expectations, I think the psychology of dealing with chemo cycle six - so close to finishing, but not there yet - is to remind ourselves about the things that have been achieved and what we know from experience is likely to happen.  

Steve has done brilliantly well to get through six cycles of chemotherapy. The last doses of chemo have been administered.  Yesterday, he finished the programme of anti-sickness medication so NO MORE PILLS on a daily basis, (other than folic acid tablets until the end of the cycle).  

The green medication bag which has lived on the kitchen work top for much of the time since last October has been put away, only to come out if needed in an emergency.  

As the side effects of the antiemetic drugs wear off, his fuzzy head will become clearer and the opposing pull of the steroids which make him buzz and the chemo which makes him tired will ease off. The benefits of the blood transfusion will become more noticeable, boosting his energy levels.  

Although we're not there yet, the end is in sight for this particular stretch of the journey and (as people keep telling me) from here we go up.  So...onwards and upwards!


  1. Hi both
    I hope that by now - just a few days after your last post - Steve might be beginning to feel a little better. You have been through so much together; your strength is admirable! But spring is on its way (I have all my veg seeds ready to sow!) and with some warmer weather you can look forward to getting out and about again. Oxford is on my list for a visit this year - so I hope to see you perhaps in the not too distant future. Much love Chris xx

    1. Thank Chris! It's a slow process, but there seem to be small improvements every day :-) Looking forward to seeing you in Oxford. Love L&S xxx