Hi everyone, first time posting. I’m currently writing this sat in my car in a garden centre car park sobbing after just walking out of my house and not knowing where I was going. I had non Hodgkin’s lymphoma and I’m now in remission, I was told I was in remission on the 5th June.
Since then I think I’ve just buried all my emotions & tried to get back into life as I feel that everyone has moved on and just assumes I should be okay now that I’m cancer free. I’m walking round knowing I should feel lucky but I just feel so lost & empty. No one wants to talk about it anymore so I just bottle it all up inside. I’m visiting a counsellor but can only afford a session once every 2 weeks.
I feel like I’ve just been a pressure cooker waiting to burst and the lid has now come off & I don’t know what to do. I have no clue what I’m trying to say here really but I just feel so so alone even though I have people around me if that makes sense. I have no one who really wants to listen to the nitty gritty or understands that even though treatment is done & im in remission I’m not okay.
Hi BlossomBug and warm very welcome to thus corner of the Macmillan Community although I am sorry that you had to find us.
I am Mike and I help out around our Lymphoma groups as well as on this group.
For some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable, but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma)……. eventually reaching Stage 4a in late 2013 when my second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting……. so although my Lymphoma ‘type’ my be different I most definitely appreciate the challenges of this journey rather well.
More so as I was also diagnosed in 2012 with incurable Asbestosis (no treatment required at the moment) and just in April past I was diagnosed with Prostate Cancer (no treatment required at the moment)……. but I am now 10 years 10 months out from my last Lymphoma treatment, I turned 70 last Nov and I am living life to the full just as any fit and healthy 70 year old can live.
Achieving remission is a huge step…… for the first 16 years of my journey I only ever achieved partial-remission the longest being about 9 months before I had to go back on treatments……
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated See my story.
It’s good you have looked into counselling…… are you in the UK BlossomBug ?
I have a very simple view on this….. I am still here living a great life… yes I had to sort out some of the noise between my ears at times but the one thing I and my family won’t allow……. is for my cancer journeys to define who I/we am/are… I/we define the way forward.
Navigating the post treatment world requires us to navigate various stepping stones.
You 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.
Do come back to me with your thoughts about the paper
I am always around to chat.
