16 years post diagnosis

Hi kirstie1982 I see it’s your first post so welcome to the community and welcome to our little corner of the community.

What the body and mind can endure during a cancer journey is astonishing. I am 22 years into my journey (hit Thehighlander to see my long story) but the short version is diagnosed in 1999 with a rather rare and difficult to treat incurable Stage 4a Low Grade Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma.

I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... but after 16 years, 900+ Dermatology treatments/clinics my condition became very aggressive so between Sep 2013 and Oct 2015 I had 6 cycles of chemo (750hrs), 45 radiotherapy zaps and two Allo (donor) Stem Cell Transplants (June 2014 and October 2015) and was eventually told I was in remission in September 2016 for the first time in 17 years...... and living the dream.

The challenge is all down to how we define our lives living along with our cancer or post cancer memories and not allowing it define us.

We can’t escape the cancer thoughts, cancer has changed our lives and many people will say that the change was not a positive change. I however look at my journey as one that changed me for the good, I appreciate life, appreciate what I have and who surrounds me day in and day out. 

Getting into that position did take some work and commitment both on my part but also my family. They totally understood the mental and physical trauma I went through so no assumptions are ever made with regards to life being back to normal……. what is normal? Indeed was life before cancer normal?

I found it helpful to sit with others who were post treatment and unpack our journeys. It’s remarkable that we actually are not the only ones on this journey.

The availability of opportunities to talk with people face to face during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie’s Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support. Also check this link  to the Macmillan Buddies Telephone Service

You may see that I suggest folks may find it helpful to make a cuppa and have a look at this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones.

Like you this may all sound like I have waffled but in all honesty there is no one size fits all in this.

Very happy to talk more ((hugs))

Hi Mike, 

Thank you so much for taking the time to read my post and send such a helpful response. 

I will definitely look in to Maggies in my area and also the other things you have mentioned and I will have a read of that article. 

Thanks again

Always around to help out

Hi, kirstie1982, we can all relate to this, even me just 2 yrs down the line, with a brother just treated for prostate cancer. I guess it never goes away. Please read the paper, that is very much my go to article as it is so helpful. 

Just vent if you need to, I do on here, as people 'get' you, so you don't have to come up with excuses why you are down today, but bright as a button yesterday.

Stay safe

Thank you Gemmary, you are so right, it's one very long roller-coaster of emotions! Aren't we lucky though that we have such a great support network at the click of a button, it's a lifesaver

Hey kirstie1982 I've just noticed you had the same chemo regime as me!! My 30 weeks, lasted for 33 weeks as it got stopped a couple of times, and holiday for one. This doesn't seem that common somehow. 

Thinking about your comment "My family and friends etc all assume that I am 'over it' so to speak because of the amount of time that's passed, but I don't feel like that's even possible after a cancer diagnosis." I think I agree, as even after just 2 years I get this. Only my brother gets it , not surprisingly!! But just because the last scan was clear I'm "cured". But your brain has changed, and the outlook on life is different. 

Yes this network is a lifesaver!! Stay safe.

Hi Kirstie

I'm 12 year since diagnosis & start of treatment for stage 3 bowel cancer, so I think I can empathise with how you feel. 

It's a funny one isn't it. What I find is that as I'm determined to do stuff and be "normal" that every now and again I do reflect on how harder it is to achieve things sometimes. Not least as I have health issues to manage from the surgery/treatment, but as these are "hidden", there's nothing to see in terms of health issues / disability. 

We're in that unchartered territory aren't we! The one we clearly hoped we'd get to when we were diagnosed/treated, and the one that more and more people are getting to - i.e. cancer free and surviving 5, 10 + years! 

However, especially with younger people (I was 38 when diagnosed) there's loads of emotional & physical baggage that we carry to varying degrees at varying times. 

I returned to work in 2012 and found I really struggled cognitively. I eventually got checked out and got an ADHD diagnosis! Now my theory is that have maybe always had mild ADHD, but that the additional chemo has pushed this a bit worse. So managing that has been weird (& made impossible by the NHS, thanks ..) but it does have certain benefits in that I think it might have helped me forget traumatic stuff from my treatment. 

I've found over the years talking to others in a similar position has been really helpful for me, as well as the people I've spoken to. Though this long after, you feel a little odd as in many ways it's left behind you. 

I hope your brother is OK. You've done really well, most people won't really realise how hard it's been. You do & most people on here will as well. 16 years is amazing and I hope the ups always outnumber the bads.

Regards, Mark

Hi Kirstie,

I have just joined this forum because, like you I am feeling exactly the same and I have been struggling to find someone who is at the same stage as myself. I was also diagnosed with cancer in 2005 and I have tried so hard to Live a so-called normal life after cancer. I am beginning to really notice that I am much weaker and get more tired than those around me and I believe that it is from the diagnosis and treatment I had for leukaemia and the after affects that it has caused to me both physically and possibly emotionally. I just wondered if this is something that you struggle with too? I completely understand how everyone around you thinks that because the diagnosis was such a long time ago that you are now okay but I think this can sometimes make it harder for us as people expect us to be completely fine and back to normal but the lasting effects of going through cancer doesn’t  have a time limit and like you, I am really noticing this more and more. I think it’s really important that we look after ourselves and be kind to ourselves as we really have been through such a lot and it doesn’t matter how much time has passed, self care is key!