Freezing cold feet and hot sweats at night starting 3 months after end of Chemo for bowel cancer.

Thank you BlueBlue, ĺ have heard that this is a good pain killer,I think its Ibuprofen but very strong! Got to try anything to make my feet bearable.

Rita D

Dear Jane,

Thank you so much for all of your very helpful and informative insights in your last message.You really have helped me so much and I think you have answered all of my questions,the socks,the Amitripyline, the therapies,the B12 that I had considered taking.Jane I found some brilliant shoes for indoors and out although I keep one for slippers indoors to keep them clean and germfree.They are from M&S and are mesh uppers like a sneaker with a white rubber sole.I got them half a size bigger and they really cushion my feet and spread the toes out.I almost forget how abnormal my feet feel at the moment! They are called Goodmove and cost £35.

Am back in Moorfields now,waiting for eye tests.

Your last point about being grateful you are recovering from Cancer,which I gather was horrible and painful when you had it I totally understand.We want to clear our body of cancer cells and know we are free of it.I'm quite different to you as I didn't know anything was wrong with me and more or less sailed through the op and Chemo.I think that's why I'm making such a fuss about my neuropathy.

I slept well last night with only 1 Amitripyline.Do you take anything before you go to bed Jane? Like a sleeping pill or a paracetamol?

Just had a phone call from 

Macmillan nurses and got an appointment for Reflexology on my feet next Friday!I will let you know how it goes..

So I have seen the DV doctor and he has fitted a prism to my glasses which I wear a lot of the time.It gives me single vision so am happy about that.He doesn't th8nk the PN is causing my eyes to see double or the Amitripyline,just maybe stress and a weakness I have had for years in my right eye muscle.So may get better again over time.

OK Jane,thanks for being thereunder you really are a Community Champion.

Hope you feel much better soon,tummy,feet and hands!!!

Rita D

Hi Rita

Those are the kind of shoes that I now have several pairs of as I find they are the most comfortable thing to wear. I got some from Asda that are equally as comfortable as the more expensive ones I have tried. 

I don't think you are making a fuss about the neuropathy at all. It can be really unpleasant. My surgery was straightforward and I recovered well from it. For me the only part I didn't really like was the injections into my tummy afterwards as I bruise easily and found them quite painful by the end. I did have a few problems during chemo and it was hard at times - I had some problems with my blood and managed to get an infection and ended up in hospital. The neuropathy started from the first chemo but I did not realise at that point how it would effect me long term. I was more focussed on the nausea etc. I had 5 weeks of radiotherapy which started shortly after chemo finished and I did find that hard at the time as reacted quite badly to it before I had recovered from the chemo. Had to get a blood transfusion half way through radio which did actually perk me up a bit. For me in a way the treatment effects were worse than the cancer. But without the treatments who knows what would have happened.

I am glad you slept well. It does make a real difference. I don't take anything before I go to bed, but find if I have a bad nights sleep one night then the following one is better. When I did try the amitriptyline I did sleep better on it. 

Am glad that you have had some success at the eye doctor and the change to your glasses sounds promising. Hopefully it will get better with time. 

Let me know how the reflexology goes- I would be interested to know if it does help a bit. 

Take care

Jane

Hi Jane,I don't have an Asda near me but if I ever see one I will pop in and look at the sneakers! Is it me or is today really cold??? All of me is frozen!!

Jane,you sound to me as if you have had the most dreadfull reaction during some of your treatment to go through.You must be very strong and positive to have come through it all....Surgery,Injections into your tummy,Chemo,blood transfusion,radiotherapy with set backs and serious complications on the way and now neuropathy.Well done for coming so far and you deserve to survive your cancer and with luck resolve most of your NP side effects.My cancer journey has been straightforward until now.I suppose that's why I'm grumpy!!Thought I had got through it easily...

I think you're right about one night good,next night bad! Keeping a record of my night time trials.

My prism is stuck onto my lens and double image has gone but don't wear my glasses more than I have to.Will be good for watching TV.

Thank you  Jane for all of your help again!

Rita D

Dear Jane,

On re-reading your proceeding message I note that you say that you have had a couple of check ups since your treat ment finished.Couls you tell me if these check ups were face to face or telephone calls? I have had no face to face check ups.I have had 2 phone checkups with my Macmillan nurse.She has arranged a telephone meeting with one of my Oncologists which I am grateful for.This takes place this week so I will let this discussion know what I am told about my CIPN.

Regards.Hope you are enjoying this lovely day here if you have one where you are..

Rita

Hi Rita- a sunny day here in the South West.

My 12 weekly appointments are always face to face and include physical examination and questions. They are due to continue face to face until Nov 2024 when I believe I would get discharged back to GP care- if I have no problems. Although I have one coming up next week and don't like them- I wouldn't be able to have the thorough check without being seen. 

Hi Jane in my favourite part of England! Thanks for your speedy answer and just one thing to clarify...who do you have the check up with ,a member of your nursing team,a surgical consultant or an Oncologist?

I stopped taking my 10gm Amitripyline drug last night  to see if my Double Vision will improve over the next week or so.I am really finding it hard to stay positive with my vision affected like this.I have done this because my Double Vision only began 7 days after beginning to take Amitripyline.I just thought that there could be a link between the 2 ?? 

Hope you're doing well and good luck with your check up next week.

Rita D

Hi Rita- it is a special gynae- oncology clinic. It is run by two specialist oncology nurses under the direction of the oncologist. I saw the oncologist herself for the post treatment check and then the next three have been with the nurse specialists. 

Am not sure about the amitriptyline- could give the Support Line a quick call and check with the nurses? 

Jane

Thanks Jane for your reply.Obviously for your type of cancer you have  your follow up treatment will be different to mine.It seems very good compared with my telephone call even if it is every month.

I am not taking my Amitripyline pill tonight  for the second night running.I will see if my double vision improves,although it was no different today.

Keep well and I hope your PN improves.

Rita

Hi Becky,

I am just following up on the people who replied to my post about my Chemo hot burning feet and cold feel also Unfortunately  am no better in fact my feet feel worse in the toes all buckled up and at times painful.I wonder how you are getting on now?

It would be good to hear if you are getting any better as this would give me hope that I too might improve.