Cancer Coaching

Do call the Macmillan Support Line open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 as they may well have information with regards to cancer coaching in your area.

As for Maggie’s, I know that our local centre is doing one on one - zoom support sessions as there are many people out in the western isles can’t get onto the mainland ((hugs))

It certainly is a weird one isn't it Carolyn321.  I differ slightly because as a nurse I've worked mostly in palliative care so I was aware of recurrence and as I like facts I quickly Googled stage 3c melanoma. Mmm, ever realistic I've plodded on trying to absorb the emotional pain and distress.  I live alone and although my daughter had a year off university (2 suicide attempts) there has been no one to off load onto.  As a patient I had no idea how I would feel.  I do feel it's important to help our family and friends to learn more about how we feel now after treatment so if you can find a way to share with them I would.  Leave the paper by Peter Harvey-- lying around maybe?  Keep in touch, this part of the journey is as difficult as the diagnosis and treatment in its own way so be kind to you xx

Hi Carolyn321, I am sorry to hear how you have been feeling since your treatment ended. Unfortunately I hear this all too often. I am a cancer coach and find that many of my clients 'get through' the diagnosis and treatment stages by just keeping on going. It's after the treatment has finished that they struggle to find their own way in their "new normal".  People around you may think everything has gone back to the way it was before. This is their way of coping with your news and it takes them to a place that they are familiar with. For you, everything may be different. 

There is no right or wrong way to do this. You will find your own way in your own time. This community is a great support for many people and I hope you find your path forward. Sam

Hi Carolyn,

I feel exactly the same. Last year I had 2 major ops, radio and chemo and I am stage 4 incurable. I've had a couple of short courses of counselling, which helped but I got a lot from Dame Deborah James' latest book - How to live when you could be dead. She talks about having goals and aims and from that I made my own system, which is basically an appraisal but never mind. I have 4 goals and I keep a diary to log what I've done each day to meet each goal - the aims. This helps me feel that I'm not just drifting. It also helps me see that I am making some small progress. I do crafts as well and find that it is a form of mindfulness, for me anyway.

I just wanted you to know that you are definitely not alone in the way you feel. Keep going and take care.

A x

Hi Highlander

I read your cancer story. I too was diagnosed with CTCL in october 2019 ( having had years of skin problems just as you described) and have had an allo SCT in oct 2020. It's been a long road. Now I'm trying to work out who and what I am. The back pack analogy resonated with me. Thank you for this. Kate

Hi Kate Kateanne and I see it's you first post on the community so welcome and welcome to the very small exclusive club that not only have a CTCL diagnosis but also have had an Allo Stem Cell Transplant (SCT).

The Allo SCT journey is as you know a rather unique experience and process....... and 'life after' is at times hard to navigate. This group title is Life After Cancer....... but in reality when it comes to CTCL it's not gone..... it's just sleeping. but the longer you go post Allo SCT the more chance it's going to be a long remission.

You are only the second person I have talked with who has followed the same path for CTCL as me but from what I see the process does a good job....... but of course we have to deal with the post treatment 'left-overs'.

You will see from my story I have had to navigate a few bumps in the road pst SCT but I am doing great and getting on with life.

What conditioning did you have to get you into the position of eventually getting your donor Stem Cells? As you see, as I had to do the process twice I had two completely different conditioning treatments.

We do actually have a dedicated Stem cell transplant support group and the following thread may be helpful Life after a SCT - A Survivor's Guide

We also have a dedicated T-cell lymphomas support group but as you would imagine there is not many with CTCL post in the group (there are a number of different types of T-Cell Lymphomas) and so far I am the only one with CTCL to have had an Allo SCT.

Happy to chat this all through more but it's always better not to totally hijack other people's threads so do consider putting your own thread up in this group, the SCT Group or the T-Cell group....((hugs))

 Carolyn321 how you getting on now? Xx

I'm 7 months on after treatment finished and feel much better now thank you. I still get tired but good apart from that.

Kind regards 

Carolyn x

Hi that's sounds interesting how does one get involved in this

Hi Grtful and welcome to this forum, which bit of this thread are you interested in finding out more about?

There's so many lovely people on here only too happy to help you so please continue to ask whatever you want.  X