5 days out

Hi Beyond terrified,

Once again this varies, everyone it seems is a little different, my symptoms peaked at day 11 post treatment & between finishing treatment & symptoms peaking I felt pretty ropey! This is when the fatigue was at its worst, this was the only time that my appetite was affected throughout the whole period too, I didn’t eat a great deal, just grazed mostly, I slept a lot during those 11 days & spent a lot of time in warm salt baths. All of a sudden after that though I turned a corner & my recovery from there was much quicker than anticipated. I have suffered from sciatica on my right side to varying degrees since my treatment also! 

Nicola

Hi Rosie, I'm sorry that you are feeling the way you are but I am now 13 days post treatment and been where you are now. It's blinking horrible. The peeling skin is very painful and the fatigue just knocked me for six sleeping most of my days away. However there is an end to it and I'm almost there. Use every lotion and potion given to you, rest and sleep and be assured that there will be a day when you wake up thinking I feel a bit better today and those days get more and more. I'm still sore in those very sensitive areas (bum and girly bits) but every day is an improvement. If you're really worried about something phone the number you will have been given from the hospital even if it's just to put your mind at rest. I was given a 14 day timeline to getting over the side effects but we are all individuals and our bodies heal differently. If you have any questions about anything that we in the group can help you with just ask. There are some very knowledgeable and helpful people in this group who's experience and knowledge have definitely helped me through this and I know I have coped a lot better with there support and advice. Xxx Marie 

Hi Beyond terrified (Rosie), I think after about 10 days or so after finishing treatment I slowly began to improve, Until then I slept a lot and didn't have much energy but I did have anaemia. My skin wasn't badly damaged by the radiotherapy but I did need salt baths 2-3 times a day for a few weeks to help after I had been to the toilet. I then continued with one salt bath a day as I had soreness on and off. 5 days is a little too early to expect any huge improvement. I got frustrated as I just wanted to get back to 'normal' as soon as possible and am not a patient person. Unfortunately, the recovery does take time and patience is needed. I would perhaps give your colo-rectal nurse a call and mention the pain in your leg, it's always best best to check things out. I have had some hip pain and sciatica, unsure if that is due to the radiotherapy or not, I suspect it is. Bev x

Hi ladies

I am not sleeping much, I wish I could.  Usually when I lay down, the leg starts, and it doesn't seem to respond to the morphine, so the last 3 nights have been bad.  I wish I could sleep because I think sleeping is when the healing takes place :(   

Hi Beyond terrified  I did have some trouble sleeping occasionally on the odd night after treatment. My GP gave me some Zopiclone as a short term measure. Sleep does help with healing. Maybe give your GP a call and see if they can help. Bev x

I would definitely give your nurse a call. It might be just a matter of adjusting your medication. I had my morphine dosage altered on day 5 after calling my nursing team for help with pain and worries about what was normal and what wasn't. A few days later they called me to check on how I was doing. If you can get your sleep sorted out it will help you a lot. Xxx

I don't have a nurse, there's a helpline number, but then you get someone different every time.  I have been told I can take 5 ml up to 12 times a day, and if I get to 12, they will start me on slow release.  I took 9 on a couple of occasions, but on the 3rd day my tummy was hurting on the right side, just below my liver, and there was a problem with my blood enzyme, which they said wasn't related, but it makes me nervous to take as much now.  

I missed a telephone review today.  I hadn't been given the time, and slept until 11 this morning, after going to bed at 11, being up at 1, 3, 5 and 7 the night before.  At some point i had turned the volume off on my phone, so missed the calls.  I did ring to apologise but no one got back to me.

Beyond terrified  hi Rosie, I’ve never had a hospital phone call on time, usually it’s late, yesterday 45 minutes early as I was cooking lunch!  Frustrating isn’t it!

Hope you find pain meds that work.  None did for me so I used some tricks - not solutions but they helped a bit...

- counting slow breaths

- focusing on a bit of my body that didn’t hurt, by gently pinching or wriggling etc

Maybe others here have their own? x toni

Hi my dear, I'm sorry that you are having a terrible time with sorting things out! I missed 3 calls because the nurse had been ringing my house phone which had been left off the charger. I called the oncology ward at the hospital and they put me through to a nurse and she got hold of the right person who called me back. The morphine levels I was on was 2.5 - 5 ml  twice a day...morning and night with 2.5 2 hourly as I needed it. This was changed to 7ml morning and night with 2.5 - 5 during the day 2 hourly when I needed it.  It's just getting things to the point where we can cope with the pain which effects us just as much mentally as it does physically. The pain that you say is around the liver area could be wind, constipation or another side effect I worried about any new pain or niggle that popped up and still do. Call your hospital and keep calling until you get the right person to help if nothing else the task will give you something to focus on. We're all different with different pain thresholds and what pain relief works for one may not necessarily do so for others so it's important that you speak to someone to get the help you need. Xxx