Saturday, 27 August 2011

The glimmer of light gets do some of the side-effects!

A whole week since my last blog! I wish I could say the reason for this is that I've been living it up, on a fun-filled holiday sampling lots of local food and drink, swimming, walking and doing the usual slightly bonkers activities that Neil and I usually do on holidays but unfortunately the truth is much more mundane. I have spent the last seven days fighting the fatigue and sickness that accompany my radiotherapy and updating my blog has been pretty low down on the list of things I have to do. This is a shame, because I do find it cathartic to write my blog - it lets me set out my thoughts and feelings and it's a way to let you all know how things are going but this week it's just not happened.

Another 5 sessions of radiotherapy done so I only have 7 more to go - that's one full week and then Monday and Tuesday of the following week. It doesn't sound much but this last week and the forthcoming sessions felt/feel harder for me than when I was right back at Day 1. I am now producing hardly any saliva, so I have a permanently dry mouth and any saliva I do produce is horribly thick. This, in fact, is what is making me sick so much. It took me a while to work out, but it's not the food that makes me sick, it's the fact that chewing and swallowing are hard because my mouth is so dry. I have started taking painkillers half an hour before I sit down to eat and that helps a bit, and I sip iced water throughout the day to try and keep my mouth moist but I have brought up my food more often this week than I have kept it down. It's great for weight loss but I wouldn't recommend it as a diet!! The worst time (and I apologise for the detail) is when I clean my teeth. As soon as I brush the back molars on the left side of my face, because my cheek and mouth are inflamed and swollen, I start to retch. That's when dinner tends to come back up...oh, hello spaghetti! You didn't stay long, did you? Being sick when you have very little saliva is pretty gruesome. And of course, once I've been sick I have to clean my teeth again, which makes me retch and so the cycle goes on. I have to admit that teeth-cleaning at night is usually accompanied by tears. It's slightly better in the morning, but still usually accompanied by some retching. I have now moved from a small toothbrush, to a child's toothbrush to a swab on a stick, so that at least my teeth are getting some cleaning rather than none at all. It's not perfect but I can't cope with anything else.

I saw the consultant yesterday at Clinic and I told him about the retching and he prescribed me some saline mouthwash to gargle with. I took it home, tried it - and it made me retch! So I don't think that's the answer! It felt like having something with a really oily consistency in my mouth and it was deeply unpleasant. When he had a look at my mouth and throat, the consultant said that I am in very good condition considering the stage of treatment - well, all I can say is I really, really pity other people going through this because I feel like a great big pile of poo most of the time!

The tiredness is the other main side-effect - this morning I didn't waken up until 10 o'clock, which is practically unheard of for me - I think the last time I slept till that time was Before Children. To be fair, I didn't fall asleep for ages, despite having taken a sleeping tablet, so I think I will take my tablet a bit earlier tonight. I normally get up at half eight to get ready for hospital, get back from hospital usually around 11 and go back to bed for a couple of hours. Then get up, maybe put a load of washing on, read for a while, listen to Radio 4, snooze and then try to eat a little dinner when the rest of the family gets home, zap my eyebrow for an hour, stay awake till about 10 and then go to bed. It's not an exciting routine, by any means, and I am rubbish company at the moment.

Today, being Saturday, I didn't have to go to hospital - yippee! My friend Kirsten, whom I have known since we worked together at the National Audit Office in 1987, came over from Oxford to visit - she was going to come over a fortnight ago but she had a streaming cold - not the kind of thing to pass on to me at the moment! - so we postponed till today. It was lovely to see her as we hadn't seen each other for a couple of years. We had a good catch-up and we bored her with our photos of New Zealand :-D Then she and I wandered down into Oxted to be "ladies who lunch" and sat outside the Italian restaurant. I had a bit of pizza and took the rest home as there was no way I could eat it - huge, but lovely! My friend Celia from church came past and stopped to say hello (she phoned me yesterday and I had to end the phone call abruptly because I was about to be sick -sorry, Celia!) - that's the kind of place Oxted is; whenever you go out, you see someone you know and can stop and have a chat. I love the friendliness of living in a small town. Anyway, I was pretty tired after chatting and eating, so we came home and Kirsten set off back to Oxford, with promises of return visits etc - I shall hold you to that, Kirsten!

Nothing much else has happened during the week, apart from my friend Dianne calling in to visit on Tuesday after work. She brought some lovely Lindor chocolates, which under normal circumstances would have been demolished in an evening! I have managed to eat a few and the great thing is that it's on doctor's orders! I have to eat as many calories as I can so if I want chocolate, cream or cheese, I can have it. This week I really fancied a fish finger sandwich, on soggy white bread and it tasted like a gourmet meal! I do try to eat healthy foods, so try to have fruit smoothies, yoghurts etc and pasta with cheese sauce. I can't really chew vegetables very well at the moment but I look at it that in a few weeks' time I can start to eat as healthily as I used to and my body will survive till then. I would be surprised if I am consuming more than about 500 calories a day and probably not even getting the benefit of those calories because so often I am bringing it back up! Now you see why it's a drastic diet!!

 Sometimes the days just blend into each other and I have to remind myself what day of the week it is! I am sitting in the conservatory with my lovely husband, Radio 4 on, church bells outside, door open and a flock of parakeets just flew past, squawking merrily, Sybil the cat is grooming herself and I have my zappy thing going on - apart from that last item,  I could almost forget that there's anything going on. It just feels like a pleasant late summer evening. Monday will see a return to reality (yes, I do have to go on Bank Holiday Monday so they can keep the routine going), but I still have Sunday as a buffer before getting back to the hospital routine.

My house is bursting with flowers - my lovely husband bought me some glorious sunflowers and gladioli, Kirsten brought me some beautiful deep pink and red gladioli (I am looking at them now, as they are on the table in the conservatory) and I got a stunning bouquet yesterday from the 41 Club, of which Neil is a (non-attending!) member - a lovely surprise. Having flowers around, with the colours, scents and intricate structures, once more reminds me of the wonders of nature and how beautiful our world can be and reminds me too of how kind people are. I was saying to Kirsten today that the knowledge that so many people are thinking of me, or praying for me, is really comforting to me and it's true. Just to know that I, and my family, are being lifted up  in people's thoughts is hugely humbling and appreciated.

I'd better stop before I start to cry!! Have a lovely evening and make the most of your loved ones xx


  1. A wonderful and humbling post. Friends are to be treasured, and it seems that you have fantastic friends. What great luck you have, to have them and your family around you.

    Good luck for the last of the treatment.

  2. Yes, I am very lucky with my friends and my family. I couldn't get through this without them, especially my husband and children. Thank you for your good wishes.

  3. Ali I read your blog and I think of you and send you boobalicious hugs and rember the the fun we all had at Salisbury.

    I also remember your support when I was going through a tough time and I've tried to pass on and share what you gave to me to others in the same circumstances.

    Hope you feel up to a roast potato soon.

    love and hugs