When will I start to feel ok again?

Hi GreenNanny I finished my treatment in September 2021 and  can't help with the stomach or bowel pain as I didn't suffer with eny but the fatigue I must admit  I suffered  with that for a long time  dont no if it's to do with my age I'm 70 but it must have been a good 6 months before I started feelings  better enough to start getting out my only problem now is I suffer with really bad back which I'm having physio  for   and as for my  bowel problem  thy are not that bad now if I was you I would phone your colorectal nurse and tell her how week and unstable and dizzy u are feeling hopefully thy can help  it's not been that long finishing your treatment but it will get better   xx

Hello GreenNanny sorry to hear you are going through it. I know from reading some members experience they did suffer very high fatigue. I did get tired and had bowel issues early post treatment causing me to go to the toilet up to seven times a day.  The treatment is body battering and it’s not surprising we can feel fatigued. I did find my diet was a big issue with regards to stomach pains but I think you should always notify your medical team of any symptoms you are not sure about. I cannot tolerate lactose since treatment and wheat products and citrus fruits. If it’s food that is upsetting your stomach it might be worth looking at what you are eating and keeping a diary as to what foods trigger pain. I cannot eat chocolate unless it’s maybe just a couple of squares of dark real chocolate. I never eat after 6pm or I get an upset stomache around 2.30. As to the nurse saying it’s your new normal I think from where I was at three months and now at 18months my normal is great and I live a great life with a few hiccups now and then probably down to me eating something I know I shouldn’t. You watch your diet, drink only decaf and try and exercise and you will see an improvement. Don’t feel bad because someone bounced back earlier as you will too even if it takes a bit longer 

GreenNanny, it is so good to hear from you again but I am so sorry to hear of your problems.  I posted on here nine weeks after my treatment ended (mid-March 2022) about the awful pain I had after a bowel movement and that continued and very gradually eased off over months (although my bowel movements are still never totally without pain but bearable).  It took me a really long time to get back my strength and I don't think I am 100 percent there yet.  I think some of us take longer than others to recover, dare I say us older ones, so please don't be hard on yourself.  The world won't stop if you take the cup of tea you have made straight back to bed!  Any aches and pains should be mentioned to the team treating you but I can honestly say that I have had all sorts of twinges, pains and cramps from the day I finished treatment and my scans have come back clear.  But they don't lead to peaceful nights do they?  The oncologist told me at a check-up that they would be more concerned about a consistent ongoing pain in the same place over some time and that they had seen nothing to worry about in my scans.  Five months out from my treatment I was still having real urgency problems but now if I wait until I have had at least two to three bowel movements in the morning, I am good for a completely normal day.  I have only been almost caught out once and the supermarket let me use their loo and all was fine.

As to what your district nurse said, well it certainly didn't apply to me and many others on here.  I didn't have Oxycodone but Morphine syrup but had to stop that as I couldn't balance the constipation avoidance with the syrup and stopped a month after treatment ended.  If you aren't suffering extreme pain, it might be an idea to talk to the team treating you about gradually cutting your dose; I slept nonstop whilst on morphine.

Hang on in there GreenNanny, you will get there.  Sending a big healing hug.

Irene xxx

Hi thank you everyone. Hi Irene it’s nice to hear from you i hope you are well. I have cut right back with the liquid Oxycodone now just take adhoc when I have bad pain every other day one lot 10ml I’m wondering if I’ve cut too far back if you know what I mean, my family think I have. I do still have the slow release Oxycodone tablets am & pm. When I spoke to the registrar a few weeks ago she said to sleep and let the body rest as much as possible while I’m sleeping I’m healing she said. She said to be kind and rest not to rush things or move too quickly. I explained about different side effects she said it’s all normal and listen to my body and sleep/rest I’ll get there but it takes time. I’m frustrated with sled so much my legs ache feel sore feel heavy. I get up they feel weak! Ivy hi no it’s a case of just doing as advised it’s hard when you hear others are up some are able ti go out fir bits of shopping I’m lucky if I get to the loo before I wet myself. I’m 60 so thing that isn’t helping. I miss our grandchildren taking them out softplay parks food etc feel like shouting at my body some days!!! I think I’m also getting scared for the scan and mri coming soon then the wait game again for results! So scared I’ll have to have a stoma bag. Right now I’ve Said all this I feel bad it’s scary and crazy xx  

Hello GreenNanny5 ,I'm so so sorry you're having such a rough time.and I pray things will get better for you .The Registrar was right.Sleep is a great healer,I know in the early days after my treatment,I slept every afternoon,and Then when I got up,I felt better for a while. This cruel illness can sap all your enemy.But it will get better,I promise you.12months on,I am much better than I was back then,but I can relate to your toilet problems and I find it can rule I still have eating problems,and it can rule my life at times.But then other days are good..There's lots of help out there so don't hesitate to ask for it.I still have eating problems,and have lost 2 and a half stone, but always hopeful I'll put some weight on soon.Just try and stay as positive as you can,Because better days are ahead, Sending you lots of love,and Prayers.xxx

Hi Belzy thank you. I’ve looked up the side effects of the medication that I’m on , Oxycodone liquid and tablets…. I have almost ALL of them!!! It’s like they have just described me!! I think I’m going to slowly reduce my medication my husband is helping me but continue with the paracetamol and fingers crossed this helps me a lot…I really hope so! I know I have things that won’t be helped by the medication the I continence, prolapsed bowel swollen skin on inside of legs, urgency for toilet, fearing to go out etc. I’ll give it a go but rest too at the same time. Just ordered some wild bird food and feeders so hopefully they’ll be relaxing to watch soon, onwards and upwards as they say xx 

Hi Nanny, 

You're only 6 weeks out from treatment, so I'm not surprised that you're still tired. I'm 10 months out from finishing and while I'm much MUCH better, I'm still very tired a lot and try to schedule at least a day or two a week to just rest. I wish I were one of the ones back working full time and marathon training a couple of months out, but those are rarities. 

I think your chances of being energetic and feeling good again are excellent. Listen to your body, cut back on the Oxy when you can (but use it when you must!) and above all rest as much as your body says it needs.

Hugs

Suz

Hi thanks for the reply. I think I need to get used to what my new normal is going to be. I very nivably thought after a few months I’d be back to normal well the reality is that’s just not going to happen. No wonder none of this information is given when you are told of the treatment in the beginning it would be even more upsetting. I tried sitting probably on my bottom very slowly yesterday as I had some paperwork to do and I suffered all afternoon and evening with sharp shooting pains, back to laying in bed on my sides for now! I’m hoping this time next year it’ll be a very different story and much better. To be fair if I can live normally for 5 out of 7 days and have those 2 as rest days I’m more than happy with that. Thank you ridetbred, take care and look after yourself xx 

Hi GreenNanny ,

Recovery can be such a difficult period, I know as soon as my treatment finished I wanted to be healed & back to normal as quickly as possible but sometimes the reality is quite different. I really sympathise with your pain issues & it’s a fine line between controlling your pain & suffering side effects of the pain medication itself. If as you say you’re suffering many of the side effects associated with the Oxycodone I would speak with either your GP or treating team about weaning off & trying some other kind of pain meds, you may find that a lot of your symptoms improve & the fatigue lessens a bit which will make you feel much better psychologically. I found alternating paracetamol & ibuprofen 2 hourly a good mix, the ibuprofen helped with inflammation which can be an issue post treatment. If you decide on taking ibuprofen I would also ask for some lansoprazole or the like to protect your stomach especially if you’re taking it regularly like I was.

Just don’t write off your recovery yet, try not to compare with others either as we’re all very individual in our reactions to this treatment as well as in our recovery. 7 weeks post treatment is still pretty early days so rest when you need to rest it really is sometimes just a waiting game until your body says it’s ready to get up & go again. Ask your nurse if they can advise regarding a cushion that could help with sitting a little more comfortably a few people that have been through this forum previously have used them during & post treatment. I really hope you find some relief really soon. 

I hope your upcoming scans go well, this in itself causes an awful lot of stress doesn’t it?

Nicola 

Hi yes I agree with what you have said and maybe I need to just be a bit more patient. I’m going to need some serious physio I’m already weak. Take care x x