Tuesday, 13 September 2011

A week is a long time in politics and a flipping lifetime in oncology!

It's now a week since my last session of radiotherapy and it's only now that I have felt able to update the blog. I knew before I started the treatment that my side-effects would be severe, that they would kick in towards the end of the treatment and that they would worsen after the radiotherapy finished for about a week or two before gradually abating. Yes, yes, I knew all that - but for the first two weeks or so, I really didn't have too many problems with the treatment apart from the sore throat and tiredness. Then the nausea and dry retching kicked in, accompanied by their mate, loss of appetite. And then, in the final week, along it came - The Sore Neck. Horrible, blistered, red and bleeding - it's not pleasant! And boy, does it hurt! So, while there was some (muted) rejoicing at the end of radiotherapy last Tuesday - those six weeks felt like they were never going to end! - there was a fairly rapid descent into almost complete misery. Couldn't eat, couldn't drink, couldn't speak, couldn't do much at all and was at the stage where a sympathetic, friendly comment from a nurse at hospital (where I still have to go every Friday for clinic) is enough to reduce me to a snivelling wreck!

Of course, the main beneficiaries of my emotional behaviour have been my long-suffering husband and children. Lucky them! I have been draped around the house - along the sofa in the sitting-room, across the chairs in the conservatory, in my bed - moaning gently like some consumptive heroine from an historical novel (and not a very well-written one at that!).  Nothing has tempted my appetite, I couldn't even taste tea (horror! I love my tea!!) and I just felt as if I couldn't see it getting better. The consultant on Friday said I had had a very sudden bad reaction to it, and that I had actually been doing pretty well until fairly recently (I believe a lot of patients get worse symptoms much earlier, so I have really been lucky, even if it doesn't feel much like it at times!). In other words - it will get better and what can we do to help you through it? I am armed with strong painkillers on repeat prescription, nebuliser, anti-emetics, sleeping tablets, laxatives (oh yes, just in case!) and fortified drinks, which taste so foul I have been making myself eat! - there's method in their madness, obviously....

The weekend: and because my horizons for so long have been home-hospital-home and now I don't have the "hospital" part every day to look forward to (?), my horizons have shrunk even more. On Saturday, there was a show by our local horticultural society and open day at our parish church (yes, that's the kind of place we live in - and love), so Neil and I decided to toddle along to give me a bit of fresh air and a change of scenery. It was surprisingly tiring, even though it is literally at the foot of our road and round the corner.  We climbed to the top of the bell tower (not as challenging as it sounds - it's hardly the Duomo!) but by the time we stopped to watch the bellringers and then went down to have a cup of tea on terra firma, I was exhausted. Cue a bout of dry retching and tears on the way home, just because I felt so weak and inadequate at not being able to do such a simple thing.

On Sunday, I stayed in bed to get some rest and then in the afternoon, we drove to the next town along, where there was a Scarecrows and Soldiers Festival. That entailed another gentle amble and a cup of tea but this time I didn't get upset, I just accepted that I had to take it easy. I did have a wry smile at the thought that I used to run the hilly route to this town and back as one of my normal training runs (12  miles) only a couple of years ago and now I can scarcely walk from the car park to the centre of town but hey ho, it's early days.

I felt well enough on Sunday, after another rest, to cook dinner - something I haven't felt up to doing for a few weeks. I made a roast dinner and managed to eat a little bit of meat and cauliflower cheese, which was more than I'd managed for a week or so. Sadly, I was unable to avail myself of the (even if I say so myself) delicious roast potatoes, as they were just too crunchy on the outside for me - maybe next week???

Yesterday I had to return to the doctor for a blood pressure check. It was pretty high last week so he wanted to check it again. He's a new GP, with enviably white teeth and so young!! Or maybe I am just getting old :-) Anyway, we checked it yesterday and it was so good that we both looked at each other and said "No, surely not?" so we had to check it again and it was absolutely perfect, so that was a bit of good news.

In other news (goodness, I shouldn't leave it so long before updating) the day after my radiotherapy ended was my birthday and how lovely it was not to have to go to hospital that day! I was overwhelmed with birthday cards, gifts, wishes and thoughts and realised once more how very lucky I am with my family and friends. My wonderful husband bought me an iPad, which I had been hankering after for ages but couldn't justify buying. It is simply beautiful and I spend many happy hours just stroking it, with a dazed smile on my face because I can't quite believe I have one!! Wasn't able to eat much of the lovely birthday cake which our friend Sally baked for me, but the small amount I tasted was very yummy indeed :-). Certainly everyone else polished it off very quickly, put it that way!

This week, I do feel as if I am making a bit of progress. I am taking a bit of interest in what is happening around me, rather than being totally insular. I was able to make dinner last night - my choice - and managed to eat a reasonable amount, although the fact that I brought it up later suggests that I went two strands of spaghetti too far! But the fact that I have any appetite at all is progress. Today I fancied a chicken sandwich, so have been working my way through that for the last four hours, with a fair degree of success. I have to remember baby steps, eat little and often and don't expect too much.

Onwards and upwards. I need to remember not to expect too much of myself and to take it easy. One of our neighbours took a basket of laundry and returned it ironed and folded, bless her. Okay, so the world won't collapse if a shirt is creased, but one has standards, don't you know? :-)

Thank you all for accompanying me on my journey so far (actually, I hate that whole "journey" terminology - makes me think I am auditioning for Britain's Got Talent) - stay with me, there's a whole lot more to go! As always, my special thanks and love to Neil, Amy and Adam. Couldn't do it without you!


  1. Whenever people refer to cancer victims they totally underestimate the strength it takes to live as normally as possible. You write very eloquently and that strength is clear. And you can make roast potatoes. I am impressed!

  2. Thank you for blogging again, Ali. It must take so much out of you, but every single entry is totally awe-inspiring. You probably don't feel very awesome most of the time at the moment, but you are and we are all behind you.
    I hope you continue to make those baby steps, lovely :o)

  3. Thanks for letting us know how you're doing. It's tough but you're on the way up now :-)


  4. Reading from the sidelines, i've been waiting for your blog entry to get the latest update on how you are doing. You're taking everyday as it comes - and thats all you can do!

    Were the potatoes done in goose fat? i find they make a lovely roastie!

    Jacqueline x

  5. My post just got eaten (I think) or this may be duplicated ...but different because I can't remember what I put :D

    Glad to have an update. Sad to hear the bad bits. Hope things start to heal now x

  6. Ali
    Hope that the worst is now over and that you can look forward to better times ahead.

    PS Have you ever though of taking up writing as a career - you do it so well?

  7. What a c**p time, and what incredible energy, stamina, wisdom and sheer guts you've got to be dealing with it so positively, and sharing it with us so that we can be there with you.

    I feel incredibly lucky to have you as a friend and look forward to seeing you soon. You're an inspiration. Thank you to Neil, Amy and Adam for looking after you too!

    Big hugs. XX