Some advice please

Hi there Birdie9132 ,

Congratulations on completing your treatment, that’s cause for celebration in itself isn’t it? 

I think regardless of the kind of cancer diagnosis we’ve had if we’ve had chemo or radiotherapy, or in our case both, these treatments in themselves are incredibly toxic & leave a bit of a legacy behind. 

Everyone is very individual in their recovery, some seem to bounce back pretty quickly others take a lot longer, just bare in mind that those that bounce back without many issues generally don’t require much support outside of their personal support network & their treating team so a lot of what you read on support groups etc., are people that have longer term issues, that doesn’t mean this is how it’ll be for you. 

I can only share my experience so here goes.… Following my treatment I had a few short-term side effects, fatigue, the fatigue gradually decreased over a period of a few weeks, I suffered constipation for which I took Laxido (stool softeners) I now suspect that a lot of that was possibly internal inflammation and not true constipation, I had coccyx pain, hip pain, bilateral sciatica & lower back pain, I was lucky not to suffer the chronic bowel disturbances that people often do with pelvic radiotherapy. Longer term (I’m now 5 years out & have recently been discharged) I’ve been left with some anal stenosis which providing I eat right isn’t generally an issue, I do still get some lower back pain if I spend long periods of time on my feet but I’ve had some intensive physio for that & the sciatica so I just refer back to my exercises & this seems to resolve I would say around 80%, so all in all I’ll take that. 

Considering the course of treatment you’ve had it’s still quite early days in your recovery but I completely understand your wanting to get back to normal, I felt exactly the same. Is there any specific side effects that you’re particularly struggling with? 

Nicola 

Hi Birdie,

I hadn't found this forum when I went through treatment, and had the same naive assumption that you did. I'm a year and a few months out of treatment now, and while 'normal' is readjusting itself to reality, it's still way better than it was. 

I still have pain at the site from time to time. I was recently very worried about an upsurge in pain, but it turned out that I've simply developed a new hemorrhoid, so whoopsie doo, lucky me, but at least that's treatable. Most of the time my butt is much better than it was.

Fatigue is another thing. By afternoon, even on relatively quiet days, I'm pretty knackered. I've always been a night owl, but not any more. This is the first summer that I can ever remember that I'm routinely in bed before full dark. I still have to curate my calendar pretty strictly and say no to a lot more things. If I push myself too hard, I pay.

But it's still good. Part of it may just be my age- I'm 64- and slower is better on many levels. I'm trying to look at it as living in whatever moment I'm in, and to try to let go of being upset that I can't ride my pony yet or manage a 5 mile run. It's good to have goals! And also to adjust 'em when it's called for.

You're still in early days. It's probably a lot better than you were in March and April, I hope?

Hugs

Suz

Hello Birdie

Well done in getting through it all!  I think a lot of us thought we would get back to to the way we were, but most of us are living with a new version of  'normal'.  I am 15 months out of treatment and am really fortunate in that I can now eat pretty much anything, but I still get fatigued and can often nap during the day.  But I am retired so that doesn't affect me too much either.  My biggest problem is aching hips and struggling with stairs and following advice here on the forum, I have had hip xrays which showed 'mild chondrocalcinosis in the pubic bones in the front of the pelvis' (what a mouthful!) but I am assured it is nothing serious.  I was then referred to a physiotherapist who said I had inflammation of the tendons and his aim is to strengthen the muscles around.  I so have some very mild exercises to do, I haven't seen any change, but I am really hoping to see some improvement as I am finding 'lead legs' the most debilitating side effect.  I push myself to walk my dog, covering at least three miles a day and can cope with that (just about!) but the stairs at each end!  Prior to treatment I could walk 12 miles a day no problem and enjoyed hiking, which I certainly couldn't attempt at the moment.  Small goals, I have to keep reminding myself.  Oh, and anal stenosis too, but a very helpful colorectal consultant is prepared to treat that.  I am really fortunate in that my doctor has referred me for further treatment for my issues and I have never felt 'written off' in any way. 

Is there anything in particular you are finding difficult?  Most of us have found very effective coping strategies that we are more than happy to pass on.

Irene xx

Hi Ladies,

thanks for your replies, which I found very informative and helpful.

My tumour was situated low in the anus & close to the vaginal opening. There was some initial doubt as to whether the tumour actually arose in the vagina......but no - definately anal! 

I initially had the feeling I was 'stting on something'. That's how I found it. 

Most of the time, I feel fine. And since getting over the immediate effects of treatment, I quite often 'struggle' to accept what has happened. I feel I've gone from someone who never saw a GP,  to having a potentially life - changing illness, needing regular meds, & carrying a change bag everywhere I go . 

I can relate to a number of the symptoms you all mention. 

My bowels have been an ongoing issue, and I now accept that I'm better off on regular Laxido. My diet alone hasn't done it.

I retired in December, and this whole 'thing' has been hard to get my head round at times. Wasn't part of my plans!!

I remember my 1st consultation, my oncologist said "how are you", "pissed off"......i think i'm more pissed off now, as the side-effects & their implications start to sink in. Don't get me wrong, I'm not feeling sorry for myself - just off loading to you.  

Anyways, I thought I was going nuts as I was finding it difficult to cross my legs. But Irene, you mention inflammation of the tendons, & lead legs. Hadn't even occurred to me that the radio would have such far reaching s/e!

I feel SOB at times, & can't walk as fast as I usually do ( or is that, used to do!). But could be old age!

There are various other 'little niggles'. But you have all helped to reassure me that they can be side-effects from treatment, & it is early days. 

Thankyou Irene, Suz & Nicola x

Hi Birdie9132

I totally get how you are feeling like probably everyone on the forum!  i am same as you retired and this wasn't part of my plans either what a life changer!  when you are going through the treatment i don't think it sinks in what is actually happening to you just have to accept you have no choice!  Horrible time when i think back.

i am now wishing i had taken part in a trial i was offered but was frightened as i could have been given more radiation or the same amount i wouldn't have known and the thought of any radiation was scary enough.  But if i had been part of the trial i would have had much better follow up appointments for five years and kept with the Oncology team.  I was referred back to my colectoral consultant who i have no faith in after misdiagnosing me twice with no examination.  I saw her in March after my 6 month MRI for a brief appointment she is always in a rush when she discussed me with a nurse saying she had missed my cancer twice last year and the nurse said Naughty tut tut! She never asked about any side effects i had she wasn't bothered. i had another MRI in May and had to keep ringing up her secretary to find out the result and eventually received good news after a 4 week wait.  She has not made an appointment to see me and the secretary said i will get another MRI next June 12 months time and an appointment after that.  I have been ringing up for two weeks now as I was told i would have follow up appointments every 3 months for two years then less often.  Secretary keeps leaving messages for the consultant but she hasn't replied. i do have a call from my radiotherapy nurse every 3 months and have one in two weeks so hoping she can help. its pretty exhausting having to keep ringing up i'll be on the phone again tomorrow won't give up but feel i shouldn't have to!

I am doing okay really except for bowel issues which is very common and much better than it was and also still using the vaginal dilators but still sore in that area. I was referred to a pelvic floor physiotherapist by my radiotherapy nurse second appointment this week she told me about an NHS app called Squeezy which i have downloaded and i am finding this useful it reminds you to do your exercises 3 times a day!

Still early days for you and you will get better promise! And remember you are not alone and its okay to have a moan on here!

Best wishes

Carole x

Birdie, your reaction sounds perfectly normal to me!  And I wouldn't blame you for occasionally feeling sorry for yourself, whilst I am really grateful and thankful to be out the other side, there are times when I am not best pleased with this new normal.  Four days ago I went off to a spa with my daughters for a birthday celebration and forgot my Laxido, it took me until today to get my bowels back to normal.  When I saw the physiotherapist, he tentatively said that some of my problems could be due to aging, and very quickly retracted when he saw the look on my face!  I considered myself really fit and all I could say was that if that was the case I have aged 10 years in one.

Please take heart though, a lot of the things we have mentioned DO improve over time.

Irene xx

PS The physiotherapist told me not to cross my legs, and to sleep with a pillow between my legs.  That last one has been difficult in this heat!