Struggling adapting back to a normal life

That sounds very familiar. I went through something similar. You’ve finished treatment & have been in a really dark place. That has taken a lot out of you. You need to give yourself time to process what you’ve been through & to recuperate. When my treatment finished, I thought ‘now what? Close friends and family were saying great, it’s over. Only for me it wasn’t. I found this article really helpful: 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Thank you for replying and the article. If you don’t mind me asking how do u manage to almost put everything to the back of your mind and get on with normal life. Not really sure what answers I’m looking for just kind of feels like want reassuring that getting back to normal is ok without forgetting what’s happened, if that makes sense. 

Hi Bobs20 the After Treatment Finishes - Then What? paper is great tool.

I have been on my incurable cancer journey for over 25 years and am now 8.5 years out from my last treatment. The journey forward is what you make it…… you have to make a choice between allowing your cancer journey to continue to define you or you take control and define how you live.

The post treatment journey is like driving a car........ the future is open for you to see through the big wide front windscreen...... the past is only visible in the little mirrors........ if we concentrate on the little mirrors we miss the future and more importantly be crash.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Mike,

I've read your story several times...incredible.  I like your slogan of always asking "what's next?"  I've been on my journey since March 2023 with AML. Was in remission briefly after standard 7+3 induction and was on my way to an SCT. But in July, my biopsy revealed I was no longer in remission.  So I've been going the clinical trial route, trying to get back to remission and onto SCT. Just trying to find the "silver bullet" that will work.  I'm grateful that I still feel good with relatively few side effects.  Anyway, I use your story for inspiration! Thank you. 

Hi Nancy M I see you are from across the the Big Pond so an extra special welcome..  please do remember that a very high percentage of people on this community are from the UK….. as Macmillan is a UK based charity.

The blood cancer journey is unusual and full of twists and turns……. especially when you are striving for SCT….. but you need to trust in the medical system to do the job.

You may want to check our our dedicated…. Acute myeloid  leukaemia support group…. abd we also have dedicated Stem Cell Transplant support group.

Lets look for you to find the right track and get this done.

I am always around in the dedicated support groups to help out or just to chat.

On reflection, I used the wrong word when I described the article as helpful. I meant that it really resonated with me. I was diagnosed with breast cancer in July 2023 and the first time I read the article was in January this year. Treatment had ended, Christmas had happened and I wasn’t feeling what I’d expected to feel ie ‘new year, all ok now’. I was emotionally wrung out, confused and bewildered. That’s when I came across the article. I read it and felt understood and validated and I shed some tears, well quite a lot.  

As for putting everything behind you, I don’t see how you can. Something huge happened. For me it’s about somehow incorporating it into my life. I’m less than a year from diagnosis so I have to tell myself that it’s early days. I’m constantly reminded of what I went through as I’m in pain every day from lack of oestrogen and my breast is permanently changed. 

You asked about ‘getting back to normal’. Much of my ‘normal’ has changed because I’m not the same person as I was and because I’m still in recovery. However, there are positive parts to my week. I started learning German at the beginning of this year and love it. Once a week, I go to a class of six people and for two hours I experience a lightness. No-one in the class knows what I’ve been through and that’s liberating. I’ll write  again later as I’m going to Parkrun soon- another highlight of my week. 

Hi Piano

I had jaw cancer which started in 2013 and since then have had 2 more occurrences resulting in  removal of my upper jaw and part of one side of my lower jaw. I had reconstruction for my upper jaw last year and am now waiting on a lip graft. I have a new normal as you do and have found as you that becoming involved in outside activities really helps. It takes my mind away from things and helps me focus on something where I can contribute and be like everyone else. I find volunteering at my local library has really helped. I also enjoy pottering in the garden. The Peter Harvey article really resonated with me too when I first read it and helped validate my feelings. A really helpful read.

I have also found that time helps put some distance between the ops and treatment and makes things easier.

Lyn

Hey Mike,

I realize you had a different diagnosis, not aml. But I'm curious about your transplant.  You said you had one even though you hadn't reached remission? I've often asked my doctors if they'd do one without remission but the answer is typically no.  Too risky, the existing cancer cells would overwhelm the new stem cells.  I've always been fortunate enough to have a perfect match unrelated donor but haven't been in remission since my original induction chemo in March 2023. I'm just wondering under what circumstances do they go ahead with a transplant when the patient is not in remission? I've seen a couple cases on a few different forums but it's definitely not the norm. 

Thanks, 

Nancy 

Hi again Nancy M …… yes I was never in full remission going into both my Allo SCTs….. it was just not possible…… 

But as I was given a few years on the clock and without treatment I would go straight onto palliative care…… we had a long discussion with the SCT team and we agreed that there was a ‘chance’ that my brothers cells (my donor) could fight their corner and do the job…… and if it did not work I would go out fighting.

The cells lost the first round but some strong conditioning (radiotherapy and chemo) before the second sufficiently cleared out my lymphatic system and bone marrow and gave the new cells a platform to do the job….. it took 23 months post my second Allo SCT for my Whole Blood Lymphoid and Myeloid Lineages to be 100% Donor…… but we made it.

Good Evening since I last posted on this group page been writing to people starting thir journey. That it can positive with the right mind set. 
yes my life has changed drastically, little things like not be able to drive or walk with feeling I’ve had a few two many.

Since I last wrote on here, my wife left me for a x she had. When she with her new boyfriend she was not allowed to speak to me. Because of memory loss at times just need her to remind be of things. She has now left him and back talking to me. Yes it was hard but she and family went through five years of hell. I can’t remember anything, so have moved to a new flat, so starting a new journey, cleaning, cooking etc for myself. Only thing to remind of cancer is walking stick, wobbly, pills.

Yes I have days and some bad days. But I am still alive can do things for myself. Having online shopping is brilliant.My three children and six grandchildren keep me on my toes.   
I can’t remember the name of my tumour, after spending apparently three months in hospital The consultant called all family to tell us that the chemo was not doing its job. But they could try another stronger with tablets etc. But it will come with cost, so I said what if I say I’ve had enough so stop now. So they all said that would be fine, and life expectancy was 3 months. So five years later still here and manage my new life. That’s what is say this is a new start for Graham/ granddad mk2.

I have carers come in twice a day , now I just want them to make a drink and sit with me and have a chat. I can cook and look after flat and myself. 

It might be a long and hard journey but keep reaching for the light at end of tunnel.

All the best to everyone on this journey.