Does it get better?

I should have said brave souls

Hi Floofy please don’t be alarmed by the sleeping this is totally natural and the best thing for his recovery. I slept round the clock in the first two weeks after treatment and still after that would have about a 2-3 hour lie down in an afternoon. The toilet frequently is also very normal at this stage, this improves quickly for some for others it can take longer. The radiotherapy has a massive impact on bowel function. Scans are so frightening, it’s impossible not to feel stressed by them. I hope you don’t have a long wait for results. I was quite fortunate in that it took about 2 weeks to get the first scan results. Bev x

Thanks Bev. I’m very scared to be honest. The thought of the toilet function never returning to normal completely leaves me with fear. I’m frightened he will become a prisoner in the house. I know it’s ridiculous but I’m scared and feel so alone

Hi Floofy I understand it’s so isolating plus this is such a rare cancer, only one in 1500 people ( hence my username), are diagnosed each year in the UK with it although the numbers are rising. Support is always available to you on here. I would be surprised if his bowel function doesn’t improve, the side effects from the radiotherapy will lessen with time. Bev x 

Hi Floofy,

I’d just like to echo what 1in1500 has said about the sleeping, this is completely normal, your body is dealing with a lot of toxicity, the chemotherapy & radiation are so, so toxic so your body is working really hard whilst dealing with this, I slept a lot during the couple of weeks following treatment.

Does your husband use loperamide at all to help control his BM’s? It’s a fine line between easing the urgency & avoiding constipation but it’ll be worth giving the loperamide a go just to give him a break from the loo especially over night. In the early days I suffered crazy urgency as soon as I got up on my feet in the mornings but thankfully it was only once or twice a day, now the urgency has subsided although I still ‘go’ first thing on a morning. 

Scanxiety is REAL!!! Mine have always taken around 2 weeks to get the report as the scan results go around a few people before a final report is ready, surgical, oncology, radiology all review the scans prior to the report being finalised & that 2 weeks is always an edgy one regardless how far down the line you are. 

Nicola

Hi Floofy,

Don’t worry. It is a very early stage. I am 3 years on and had an awful time after my treatment, in fact it hasn’t gone completely. I still have some really bad ‘bum run’ days, but they are not what they used to be. It seems like a nightmare now. It hasn’t stopped me leading a full life. My Oncologist said some of her patients take Imodium every day, I do take it quite frequently. 
Your husband will be cancer free, and the occasional bum run will be worth it. Give it time & stay strong. I do feel for you. My hubby nearly died from his treatment for throat cancer, Hospice took over his care. Not long afterwards I got anal cancer. I can assure you it is worse being the carer! 

Best wishes to you both,

Pam 

Hello Floofy

I’m a bit ahead of your husband, now 15weeks post treatment. I can fully relate to your concerns and concur with the others who have responded and assure you it will improve. I did go through a phase where I thought it might never improve but whilst I still have the urgency it is more of a routine, twice first thing and once later normally, which makes it far easier to manage. Still have had the odd accident but getting more rare! The pain of BM does eventually go.... I got to the stage where I thought I’d got that for life!! I still wee a lot, little and often. I go out with a few supplies just in case which helps mentally!! The sleep need goes too.... I’m not getting tired during the day now unless I don’t  sleep at night!!
The scans..... My 3 month scans was MRI which was 45mins in machine and a CT scan which was over in 4 mins. The waiting for the result is the worst bit, think it was 10days! But I was told all clear, NED (No Evidence of Disease) Tomorrow I have an examination under general anaesthetic to double check MRI all clear result. I think I’m more anxious about this than anything.... but I have the result call on Friday so that’s not too long to wait. 
Being the carer must be soooo difficult as there is so little you can do except help the clear up.... I am just thankful fir the washing machine!!

Sadly we all just have all just got to go through it, but it does seem it’s worth it as the outcomes do seem positive. I did walk over 10,000 steps every day in March and I’m now back playing golf so evidence he will be able to be back out and about soon. Hang on in there..... it’s a bumpy journey but you will get there 

Ruth X 

Hi Bottom56 I had an examination under anaesthetic last year, this was to check the scar tissue was just that. I was in and out of hospital within about 4 hours, there was no additional discomfort afterwards as they are just taking samples of the cells, it wasn’t like a full blown biopsy. Hope all goes well tomorrow. Bev 

Thank you Bev 1in1500 that’s put my mind at rest! I was in agony after the biopsy!!!  I’m in the private hospital (but NHS) so I’m looking forward to the sandwiches and chocolates afterwards!! Fingers crossed....

Ruth X

Thanks Ruth. I feel bad saying I have bad days when I’m not the one going through it but there have been times when I’ve thought OMG will he ever have a normal life again. We’ve always travelled and whilst no one is at present the idea he may never lead that normal life again makes you panic. The thought of suddenly being on a plane or train and you can’t get into the loo. Sounds crazy doesn’t it?! Covid hasn’t helped because you can’t get out and so you think and over think. But your response is re-assuring and I’m grateful so thank you!