What’s normal post treatment?

Hi Angie,

YAY on finishing treatment and moving into recovery!!!!

My nails didn't lift, but have become slightly but weirdly warped. I keep my nails short anyway, but if they go past my fingertips they start to curl a little. I immediately thought it was from the radiation, the timing was just so. But you're the first person to corroborate (somewhat) my theory!

The Progress Pressure is the worst. My husband was a rock throughout the treatment, but at 2 years out he was starting to get impatient with my reluctance to do things like go to outdoor concerts with Portapotties, and my inabilty to hike as far as I used to. I don't want cancer to be my Get Out of Jail Free card, but there are still things I genuinely can't do, and still have occasional bouts of pain that keep me from doing everything I used to. I'm still working on the phraseology to let him and other beloveds in my life know that progress is not 100% forward and that I'm the only one who gets to decide how much I can do at any given moment. 

I know the impatience comes from love, and I've felt it myself in the past. Now I know better, but it's a tricky thing to get the concept through to someone who hasn't walked this road.

I'm still on the fence with how much info we *should* have prior to the treatment. I was pretty grumpy about it, but in retrospect (and after a couple of years here) I just don't know that 'full disclosure' SHOULD include all the hair-raising details. 

It's not like we have a nice array of other choices, do we?

Oh, and I weaned myself off Oxycodone just as you're doing- taking less and less as the symptoms began to give me occasional breaks, and use OTC medications for all but the worst. I was a little worried about addiction, but it was no problem at all. Actualy a relief to get off the heavy stuff.

Here's to more good days for you!

Hugs

Suz

Hi Angie SE ,

I don’t have any advice about your nails but have heard of a couple of people that have had issues with their nails following chemotherapy, although I didn’t lose my hair during treatment it thinned a little & went really dry, it looked a bit frazzled until I’d had a couple of good cuts on it, I attributed that to the chemo. 

Progress pressure is something you don’t think about until you’ve had something like a cancer diagnosis, I have some really close friends some of who stopped asking & just assumed all was good after I’d finished treatment, when I had to turn down invites to go out I don’t think those friends realised it was because I couldn’t go & assumed I didn’t want to go! I also completely sympathise with the the feeling you’re taking steps backwards some days, it was mainly the fatigue that made me feel this way I think. 

I couldn’t take any opiate based pain relief during or after treatment including oramorph because of the awful constipation it caused but it sounds as you’re doing the right thing by leaving it longer between doses, taking paracetamol  if you feel that you still need something. You’ll soon find the good days outweigh the more difficult ones. 

Wishing you the very best of luck with your recovery. 

Nicola 

Thanks for this Suz - the disclosure is tricky as some people may be scared from day one whereas less knowledge I smiled and welcomed the treatment without knowing the consequences and what they exolained really meant! 

And expectations will need to be managed by others as I/we have enough to do.  Hikes, concerts and events I will look at from a different angle now! 

I have just met Manager from work and said my lifestyle needs to change in terms of toilets, how much I can physically do. 

thank you xxxx 

Thanks Nicola!  I am amazed how so many ways of handling this are used in terms of drugs, rest, creams etc.  I assumed what I was given was normal!!! Now I know nothing is normal and how the medical teams handle us is so individual.

My family and most close friends have been so thoughtful and kind with time and love apart from a few I am shocked haven’t had any contact with except from me seeing how they are.

Moving forward we are normally very sociable so saying no will be a surprise top - but I am happy to stay home for the toilet comfort and fatigue as you have been x 

Thank you  again xx

Hi Angie congratulations on completing your treatment and on the road to a newish you. I didn’t suffer the nail thing but did lose some hair. As if it wasn’t thin enough and when I lost some more I was pretty depressed but decided to cut it super super short and said to my husband I am sorry but this is the only way I can manage it. He was supportive and I looked into wearing a wig for times we were on holiday. We found a lovely wig supplier and when I put it on I looked just like my mum when she was around my age. My mum had thicker wavy hair and I found the wig just not me. I felt a bit fake and then that upset me too and it cost me a fortune! I’m going to have it cut eventually. 
I wonder was you pre menopausal? as sometimes treatment forces you into the menopause and might be where the sweats are coming from.

i was still on morphine at four weeks as i was still dealing with pain but had no problems coming off it and basically stopped with no problems at all. My oncologist said it would be very unusual to become addicted if you were taking it for pain. 

I so relate to Suz regarding going back to the way I was regarding going out walking. I used to be in the Ramblers walking ten miles at a time which I could do but if I needed to go for more than a wee I just couldn’t do it! My husband doesn’t put pressure on me to make plans ahead as I pretty much go by how my gut is behaving. If I’m going to be home the next day I relax my diet to suit and can have maybe an ice cream but if we have plans I really watch what I eat the day before as I don’t want to worry about where the toilets are too much. I envy those that do get back to the way they were and can eat pretty much what they did before but I can’t but do know if I stick to making sure the diet always includes vegetables and protein. I go to my gym club with post cancer patients twice a week and none of them have had anal cancer! I don’t talk about it only on here where I know these lovely people understand. I still have good and bad days where the skin flares up but rarely experience pain which is good.

i hope you continue to make good progress 

Julie

Thanks Julie - regarding menopause I went through that as now 62 but it is just like this nasty sweats about 14 years ago! I met my husband just before it all changed so he’s had menopause and then this to support me through and has been fab.  

I have a girlfriend similar age to me who had this (a second had surgery) and they don’t like to talk about it much as was so traumatic - I get that now! 
Thanks for the 4 week pain relief match, I have spent today stretching the time between meds and have had a surprise with my bowels relaxing more was very unexpected and unplanned!! That’s what I need to think about now and not going to public loos for a while now x 

This changes are a cheap exchange for our life hey - feeling grateful no matter the hurt at the moment xx

thank you Angie x 

Hello Angie

I had completely forgotten that I lost my big toenail completely.  It wasn't painful at all, but looked peculiar and when I examined it closely it just lifted off and the new nail was growing underneath.

The sweats - yes, definitely, especially at the end of treatment but then gradually they stopped completely.  That's another thing I had forgotten about until you mentioned it!

I completely stopped opioid drugs three weeks after treatment ended as at the time I wasn't advised to take stool softeners alongside and suffered horrendous constipation which was far worse than the pain - my daughter had to give me an enema with me lying on the bathroom floor and my husband heard me roar with pain from the other side of the house!  The internal healing took longer than the external skin and bowel movements were painful for about three months after treatment.

I have been completely open about the limitations I have now, mainly fatigue, 'heavy' legs and aching hips.  And a very sensitive rear end, I have taken to carrying a cushion again as I start to ache if I am sitting on a hard chair.  What can be difficult for others is I look completely normal and back to my old self.  I have to make a conscious effort not to grunt as I get up and sit down.

I walk about three miles a day with my dog (it used to be 6 - 7) and have to rest when I get home.  But all that said, in the main, I really enjoy my life.  It is different (for me) but I have made adjustments.  My family, I think, sometimes forget and try to cajole me into doing a bit more but do understand that I have limitations.

I agree with Suz in that there is differing opinion about how much people should know prior to treatment.  I wanted to be cancer-free so much that even if I had known about the side effects I would still have gone ahead.  But I fall in the 'I would have rather known about this' category as I kept thinking at the time I was different and not coping at ALL.

Finally, a bit of a long read, but I found this article so accurate that I sent it to my immediate family https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf to help them understand a bit more.

Wishing you all the very best in your recovery!

Irene xx

Hi Angie , 

I’m 10 week post treatment , managed against all the odds to get to Cannes to ..catch up with family … have kept out of the sun and pool .. bum still sore , appetite not fully recovered , some of my finger nails still black !! … I haven’t seen anyone medical since my treatment ended June 19 so carrying on till October when I see oncologist 

I never had any pain relief so this forum has been my placebo … would love a pool swim at the moment but my skin is still dry , despite lashings of e45 !!!! 
Hope this helps ? 
take care

Chrissie xx 

Wow Christie everyone copes in different ways and Cannes sounds amazing xxx Toe and finger Nails do grow back x they are currently a reminder to me that inside is still healing xxx 

And I was just discussing with my friend that if anything happens or this comes back I will want full disclosure, timeline and exactly what’s planned!

Take care Angie x 

Great news the treatment has finished!!! Sorry you’re  4 weeks in to the recovery stage and feeling crappy!!

I can’t comment on your side effects as I’ve not had them as yet! I do suffer with flushes and sweats! My nails are fine though.  I haven’t taken any meds but paracetamol and the gel that I was given! 

i really do hope things start to change for you. And you can get off them meds!!  X