Life after getting the all clear

I finished my treatment in June and my only contact with the hospital has been at my check up appointments. I was a bit surprised there was no other contact, but they were very busy and the strikes were happening.

My last chemo was early April 2023 and I have had problems with peripheral neuropathy in my feet. I found I needed shoes with thicker soles. However, a few weeks ago I suddenly realised that it had improved, I can walk further comfortably and can stand up for longer. Don't give up, it should get better - but I was told it could take 2 years!

Hi Penny55 

I can relate to this. I'm also two months post end of adjunct therapy and I have an appt with the Consultant this week. I'm thinking about the "what ifs" and wonder what will be said at my appt too. 

I do think about the possibility of recurrence a lot. I know that adjunct treatment gives you a better chance, but nothing is guaranteed. I think it is normal and natural to think about these things.

But what helps me most is acknowledging these fears, but not dwelling on them. I prefer to focus on each day in a more intense way than before. I pause more to look at things. I listen more, to friends, family and beautiful birdsong. I try to be kinder to myself (still working on that).

As @Marmite wisely says: focus on the what is - not the what ifs. It's a work in progress.

Best wishes

Kxx

Hi Penny55, well done for completing your treatment. It’s understandable and quite usual to feel a bit odd afterwards, after the weeks/months of attention, scans, treatment etc, and all of a sudden then cut adrift. Most if not all hospitals do a “life after cancer” course, either as a full day thing or as a weekly thing, and I’d suggest asking your CNS if yours does. I didn’t expect any contact from my CNS post treatment but I knew they were there if I needed them or just wanted a chat. 

Hi Penny

Finishing treatment also bought up a range of emotions for me. This is a blog that explains how I felt when mine finished.

(+) Life One Year Later- Jane’s story - Macmillan Online Community

I was also left with peripheral neuropathy in my lower legs and hands. I was prescribed amitriptyline but for me the side effects put me off. I got some of those squeezy little balls (like people use for arthritis) and find that they help my hands. I think that anything that gets the blood flowing to the area helps. Walking and moving around generally does help with my legs/feet. But its also being aware that because the sensations can be different that safety is a factor. Get a bath mat, a handle for when you get out of the bath. Wear shoes. Protect your feet as I found I can potentially injure them eg by standing on something sharp and not realise. 

For skin I found tamanu cream (from Tropic) worked for me and using lots of it regularly. This is something I already used for eczema so there may be other ones that work for you. I used aveeno during radiotherapy and that was good too. 

As there is also itchiness it may be worth speaking to your CNS/doctor about an emollient to put in your bath as I have used these with eczema and they can help stop the itch scratch cycle. Any creams etc after chemo I found the natural unscented ones the best. I would say it probably took around 12 months for my skin to feel normal again but within 6 months it felt a lot better.

With neuropathy - it can be a common side effect. It can improve with time but mine is now considered permanent. However I just work around it most of the time. 

Worrying at night sounds familiar as well. Some hospitals can do a Life after Cancer course that some people find helpful. There is some counselling available through Macmillan/BUPA that you can find out about by calling the Support Line. For me the best thing was to talk to friends and family and to express those fears. I also write things down- so something like "I am worried about recurrence" "I am dealing with this by regular checks" etc. I think also sometimes it helps to see the anxiety as something that is helping keep us safe. I think I am more aware now of any changes in my body so would likely seek help straight away.

Hope this helps a bit. I thought I would feel over the moon once treatment finished but looking back I actually felt quite flat for a while. I think during treatment we are so caught up day to day with everything that once it all stops all the processing begins- and that all takes time. 

Jane

Good morning Penny55 

I am sorry to hear what you have been going through.

I hope your GP listens to your concerns and has a plan of action for you.

Best wishes

Kxx

Hi Jane  

Just read your blog. Ooh I can relate to some of it and it immensely reassuring too. I agree with your thoughts on explaining things honestly but sensitively. It validates the reality of the experiences we go through. 

Kxx

Hi Penny55 

My apologies this post was meant for another chat - I had already replied to you.

What am I like! I would delete it but not sure how.

Sorry again

Kxx

Click on more at the bottom of your post and there is an edit/delete option

I only see react or reply xx

It should says Reply, then React, then Flag to moderator, then More. Click on More!