The lid has come off the pot…(buried emotions, trying to moving on)

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.

Hi, I know this was posted a while ago but I have just recently finished treatment myself and really resonated with this. I am sorry you feel alone and like there is a pressure to be okay so soon after your remission.

At various points in my cancer journey I felt isolated because people around me, even those who I know care for me, didn't understand the gravity of what I was facing or weren't equipped to offer me what I needed. I tried to remind myself that this doesn't mean I am alone or unloved, it just means that people are imperfect and don't always have the skills or the strength to show up in the right way.

Most of us as cancer survivors also don't have the skills or the strength to deal with something so life-altering, but the difference is we can't opt out or distance ourselves or wave it away. We have to face what has happened and deal with the nitty gritty reality, whether we feel equipped to or not. And that can be a lonely journey- we are the only ones who really know what we've been through and what it has taken for us to just survive each day.

I think it's important that you recognise your own achievements in this journey, even if no one else does. You keep going, you get out of bed in the morning, you try to make sense of the feelings you've been left to grapple with and you try to rebuild your life. Even though you have had no other choice, all of this still takes incredible bravery and is something you should be very proud of. You are surviving on a depth of resilience and strength that some people may never have to reach within themselves for. 

I think it is most important to remember this in the post-remission period. I finished chemotherapy with no evidence of disease almost two months ago and I am only just now beginning to feel like the cancer is something I can think about as being in the past tense. While going through treatment I was just in constant survival mode; one earth-shattering challenge after another and no time or space to work through my emotions. Now that the relentless physical and emotional onslaught has ceased, I am only just catching my breath, beginning to process what happened, understand how it changed me and make sense of the experience as part of my life story. I need to talk about it all the time and I need a lot of support.

Like you, I sometimes feel pressure to be 'over it' but I know that is unrealistic - this is just the beginning of a long journey towards making peace and finding myself again and I cannot rush that. Now more than ever I need to be kind and forgiving to myself and recognise how well I am doing even in the smallest of ways. 

I don't think you "should feel lucky". Facing and overcoming illness like this can bring up moments of gratitude, but you should never have to force that. It is okay to feel angry at what happened, sad for yourself, confused or lost. There is so much we lose during the cancer journey and it takes a long time to grieve that. It's okay to feel like a mess and it's okay to ask for help even if others might not understand why at first. Trust in your own experience and advocate for yourself - you deserve so much grace. 

Lastly, I think that as humans, our bodies and minds know how to process difficult experiences, just like the body knows how to form a scab and heal a wound. This healing is not always pretty and it doesn't always make sense to us and it isn't linear, but if we give ourselves the space and trust in the process, time will work its magic. This grief and confusion and pain will move through you and you will feel okay again. In the meantime, I think your only job is to try to be kind and gentle with yourself (and if possible try to show others how to be kind to you too!) 

Hi,

Im new to the group and joined for the exact reasons from these posts. I had surgery end of April to remove my GIST (tumour in stomach) all went well. Stayed on targeted therapy for a couple of months and was told I’m now low risk of reoccurrence so I can stop the targeted therapy and just have ct scans every 3 months. I felt amazing straight after surgery and then I started feeling lower and lower and now feel so alone ( even though I’m surrounded by caring family) I get so tearful and then feel guilty as I should be happy after nearly 2 years of successful shrinking the 10cm tumour amd then surgery to remove it. I try and tell my close family how I feel and they say oh well you will be back to normal soon! But this is my new normal. I feel different , my priorities have changed.I just feel so alone but then feel silly as I should be celebrating beating this. Any advice or hope would be massively appreciated. 

Hi Normality and welcome to the Community.

I won’t put up the same information I put up at the start of this thread. 

I live in the beautiful Highlabds of Scotland and I see the cancer journey to be like a climb up a high craggy Scottish Mountain.

These Mountains have well trodden paths with little cairns (stones on stones) put up by the many folks who have walked these paths before us.

At each cairn the path divides in two - these are the points of decision, like..... How we deal with side effects.....? The mental and physical challenges.....!! The picking our selves up 'again' times......!! It’s scan time again....!! How can we move on...?

We do have to look very carefully at where each track will take us. Do we knuckle down and tough it out and keep climbing up or do we take the low path, the easy path and keep going round the hill and not reaching the summit...... not seeing that view for the first time.

When you look at the cairns they are always just on the tracks that will lead to the top. So each stone that is put on the cairns is a "yes, we can do this" decision......... keep putting the stones on the 'yes' cairns....... and every now and then have a look back down the hill and see the starting point and all the little cairns on the paths you have taken. The further you move on, the past looks very small and fuzzy at the edges.

If you keep walking the low paths you will see stones left abandoned at the side of the track where that hopes and dreams was lost.

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

Thankyou for your kind words.