Good days and bad days

Hi there Serena (Serena7),

I can’t speak for everyone but I think many of us have experienced what you’re dealing with right now. I think that once we’ve passed the point when our side effects from the treatment have peaked we’re all really eager to get back to some kind of normality & to resume the routine we had prior to diagnosis but our body’s have been ravaged by both the chemo & the radiotherapy which are both extremely toxic treatments & it left me with quite extreme fatigue for some time which exactly as you’ve described came & went as & when it pleased! At 5 weeks post treatment it is still pretty early days for you but you’ll get there, as time goes on your stamina will improve & I think you’re doing great if you’ve been out dancing, jogging etc., already it’s much more than many people manage for quite a while. My advice would be don’t push yourself too hard & just keep doing what you’re doing things will gradually improve & hopefully you’ll be back to your usual routine really soon. 

Nicola 

Hi Serena7  as Nikki65 has said it's still early days. I was the same at your stage although I wasn't up to jogging, although on good days I would do a small amount of walking. My bowels would be ok-ish one day then the following day I would be going multiple times. I also had a backwards slide about the 8 week post-treatment mark. I had been continuing to improve for the couple of weeks prior to this then ended up with extreme soreness after my bowels seemed to go a bit haywire.  For me, limiting the amount of fruit, veg and caffeine helps with reducing the amount of toilet trips and therefore soreness.   I was so impatient to get back to 'normal', but the treatment we've had is so intense, this does take some time. Just try not to overdue things, you do need plenty of rest which will help with your physical recovery. Bev 

Thank you so much for your very wise words Nicola and Bev. Yes I think I am being a bit impatient and focussing too much on my disappointment when I feel I'm not up to much rather than be pleased with what I am actually able to do. It is quite difficult for me to adjust as I have always been such an energetic and extremely busy person, working around the clock and multi tasking.I used to achieve so much in a day and it feels so strange now having so much time to myself where I need to rest. This can be quite negative for me as I find myself thinking too much about all those things I think I should be doing or missing out on.

I know I need to step up and be thankful for the this opportunity I have been given to carry on with life and stop feeling sorry for myself. Yesterday was not a great day which didn't help. Today however has been fabulous in comparison. Only four BM's so far which were manageable. I have been out shopping most of today and had lunch out. I bought fabrics to make some clothes which has given me something to think about and am even going to go dancing this evening as I feel so well and relaxed at the moment. It's almost as if yesterday didn't happen now!

I think the hard part is not really being able to plan anything in advance, but listening to your experiences i now feel that that is a small price to play as I seem to be doing so much better in other respects. I have not really experienced too much fatigue, only when I am constantly running to the toilet so i really do sympathise with what you had to go through, Nicola, That must have also been so difficult for you Bev, to reach 8 weeks post treatment only to start feeling so bad again. Also thanks for the tips regarding fruit and veg. I think I have been so worried about getting constipated that I do have too much. They are my favourite foods too, so hard to reduce. I have also been eating the same things for the last few months with no problems. It's really only been the last couple of weeks that things have really loosened up and I am not sure why this has changed as I have stopped taking stool softeners two weeks ago. It really is a roller coaster, full of ups and downs. 

So it's one day at a time for me and I plan to enjoy what I can when I can. Thank you again for your help

Serena

Hello Serena I am seven weeks post treatment and have been having painful bowel movements since treatment and have had days where I wish I could just have one or two and be done with it and give my poor bum a rest. I was told this is what to expect and will have to live with changes and will never be the same as before. Well that really upset me as you can imagine as we want to be the way we were before the cancer. I went to my GP Friday gone and he said I have a fissure which is the cause of the pain and gave me some cream to heal it. He said I must keep the stools soft so I am still taking movicol and you have done well to have come off it. I try to eat healthy with porridge a little fruit and whole meal bread and meat and veg. I don’t eat in between meals as I think to myself what goes in has to come out! I think you are doing really well if you go out dancing etc. I have managed short walks and manage to go into shops just to linger which is great. I get nervous if I have appointments I.e. dentist or opticians in the morning due to possibly needing the loo. My hair needs cutting and the thought of me needing the loo whilst there has put me off at the moment. This has an impact on our moods so you are bound to feel up and down as we are still getting used to changes in our bodies which behaves differently. As time goes by I am sure we will get better at managing the side effects we may be left with and learn how to adjust with diets and routines.

Hi Jaycee

I am so sorry you have a fissure to contend with as I know the pain with that on its own is excruciating, without all the other issues. Let's hope the cream does its magic and you start to feel better soon. It's good that you are venturing outside a little too and hopefully you will be able to gain confidence to get your hair sorted as well. Yes I know exactly how you feel as there is little or no warning when you need to go. When I go out or attend appointments i just tell people about my 'little problem' and everyone has been very sympathetic offering toilet facilities and help if I need it. It's really helped me feel more relaxed and less stressed about going out. I do wear protection and take wipes etc, just in case but everything has been ok so far. You just need to try not to be embarrassed as people really do understand. Easier said than done I know!

I am having a nightmare with diarrhoea at the moment as everything is passing through me really quickly, even when I take meds to try and stop it. My poor bottom feels like its on fire today. Over the last couple of days I have reduced fibre intake but it's actually got worse since then. It's hard to know what to do. I only just made it to my toilet in time yesterday after walking back from the train station.

As you say, hopefully in time these changes will become easier to manage and cope with. Its very frustrating but we are getting there bit by bit and need to just accept that things may be challenging at times. 

Serena x