I've made it through. My radiotherapy team were just lovely - professional and supportive and caring. So much love for our NHS! But I am so relieved not to be doing the journeys any more
So, how was it? I felt nauseous in the mornings and evenings almost immediately so I always took the anti sickness meds.Up to the end of week 2 and partway in to week 3 I was broadly OK though. I was having my long mornings walks, travelling in to the hospital on the train, and was eating full meals. Week 1 I had a worry when they said I had a lot of gas in my system 2 days running - they emphasised the low fibre diet and I have been eating beige food ever since - that didn't recur.
By the end of week 3 I was getting so tired and I had a very low white blood count. I had to have blood tests every other day for a week. Everything online said eat protein so I had lean chicken breast almost every day and by the following week it was back up again. After talking to the specialist nurse I bought Flamigel RT and started using that 2 or 3 times a day. It felt cool and calming on my skin.
End of week 4 was when the side effects of the radiotherapy really kicked in. I perfected the John Wayne swagger and continued with the Flamigel RT. The nurse gave me Instillagel mixed with Hydrogel with alginate to put on broken skin. The Instillagel is an anaesthetic and the hydrogel forms a protective barrier. It stings a bit when you put it on but definitely helps - especially in areas where skin is rubbing together. From this point on I started taking paracetamol and ibuprofen - alternating them - although I really didn't feel it was making a huge difference. I was eating though and maintaining my weight.
Week 5 was hard going and I could really have done without the last 3 week 6 sessions but just clawed my through. I think that somehow towards the beginning of week 5 was when the chemotherapy really kicked in - I developed a rash on my arms and legs and the knuckles on my hands, and I had so much difficulty pushing myself to eat anything at all. And the diarrhoea became more watery and more unpredictable. By the end I had lost 2 more kilos.
Day 28 was yesterday and I was pleased to have got through but it was a really difficult day, so now I've decided to take the codeine with paracetamol and I just have my fingers crossed that I don't get constipated. I am taking laxido every day. It has been a balancing act all the way through between constipation and diarrhoea. I'm hoping that as the chemotherapy leaves my system, the rash will go and some of the fatigue, and I'll feel more like eating.
So that's where I'm up to and it's a sunny morning. Much love to everyone on here. xx
Thanks so much for this Julie this is really helpful. I had pretty much stopped eating any kind of fibre because of the worry of too much gas for the radiotherapy but am now just reintroducing it and trying to work out what works and what causes problems. I wasn't at all knowledgeable about any of this but am just getting to grips with soluble/insoluble fibre. I am just nearly 3 weeks post treatment so still getting pain with bowel movements and frequency really varies.
So glad to hear that your recent surgery has finally taken away the pain - it is so difficult when you have that dread of needing to go!
All best wishes
A quick update now that I am almost 3 weeks post treatment. It took me a week and a bit more for the chemo effects to die down so it was only half way through the second week that I managed to eat much at all, and I continued to get the watery diarrhoea every day in the evening and sometimes into the night. Just to really confuse things I seemed to get constipation in the mornings as soon as I started the codeine which was very painful, so after a few days I stopped that and just took the paracetamol and ibuprofen - it really made the pain hard to cope with. Red skin and blisters persisted past week 2 and I had to request more flamazine from the GP. They were not helpful and the macmillan nurse had not replied to an earlier message so I contacted the secretary to my consultant who organised a prescription for me almost straightaway. My experience has been that the hospital has things well organised and their communication is very good but the community based services are hit and miss - which is no doubt about funding and overwhelming demand.
So now, finally I have begun to be able to sleep more consistently and I am eating really well. I have been out to the park and to the shop down the road. I think it was Irene75359 who said she could have cried the first day she made it out of the house and I completely identify, I felt really emotional just to be in the park surrounded by lovely trees. As long as I keep drinking enough water my bladder is now fine and I can have my morning coffee without any problems. Bowel movements are still really painful but not quite so bad as before, and I am starting to work out what I can eat and to get back to a more balanced diet. I'm still taking one Laxido every day which seems to work well.
Grateful thanks to everyone posting on here - as others have said, everyone's experience and information is really helpful and provides so much support. At times it felt like there would never be any improvement but slowly and slowly I am becoming myself again.
Hi Linda thank you for the update and it sounds like you are doing brilliant. You are still very early days post treatment and your progress is better than mine was. I recall it was about four weeks I was finding it a bit of a struggle with the bowels and I did have a bit of internal inflammation. When you manage to achieve progress it’s so satisfying and it comes bit by bit. The saga of the bowels is a challenge and when I went to the toilet I probably mentioned this several times over to other members but I would sing in my head waiting for the pain but this did help. You can also experience a roundabout of emotions but not knowing how to explain it. It does get better and for some you don’t get back to how you were before treatment but you adapt your life. I had my last scan at the nuclear medicine hospital last Friday and they said the results will take two weeks which is pretty good as I know my CT results could take weeks. Regarding your doctors I have a suspicion that when you are referred to a hospital for treatment and after wards you are under their budget and I think your GPs feel any prescribing should be from your treatment team. When I once rang my doctor to come out to me it was only because I was in a lot of pain and couldn’t get to the hospital. He said I don’t know what I should be looking at as you are under the specialist. That’s my theory. Keep up with the progress and keep us informed
This is such a positive post and I am so happy that things are looking up for you. I always think it is unfair (and disingenuous) to sugarcoat exactly what it is like, especially at the end of treatment, but you have just illustrated that it isn't forever, and that is what we need to keep reminding others who have just started this course of treatment. That the end IS in sight and things do get better. Thank you for posting this, and sending lots of good wishes for your ongoing healing.
Thanks so much for your update Linda (lindamae ), these posts are really important for others that are just starting out on this journey to read & especially for those that have had a particularly rough ride through treatment to show that there is light at the end of the tunnel.
I’m so pleased to hear that things are getting back on track for you & that you’re figuring things out such at diet etc., it’s a little different for us all but once you’ve a grasp on what works for you it’s definitely a game changer. I took one Laxido per day for 3.5 years post treatment & wondered if I’d ever be able to leave them behind but I’ve not needed them for over 18 months now which is great.
You'll find that gradually you’ll be able to do more & more, bit by bit & soon enough you’ll be back living your life again. Every now & again I found the fatigue would come back & bite me in the bum again (no pun intended!) & I would need a day doing absolutely nothing but the next day I’d be ready to go again, I think it’s all about listening to your body & giving it what it needs at that particular moment in time.
Once again I’m so pleased to hear you’re doing so well.
Linda, I'm so, so happy to hear that you've reached the point of measurable improvement. I remember when it felt as if it was just going on and on and on and that I'd never be free of it.
That moment of being back out in the beauty of the world, and how precious that is. Yes. Yes. Yes.