I'm really new to this idea support groups. I have been in remission since 2001, I came out of hospital the day before my third birthday. I had Non Hodgkin's lymphoma B Cell. It wasn't until recently that I realised I suffered from survivors guilt. My therapist pointed it out to me. When I was young I asked my mum if I could try to contact some of the children that were on my ward. Sadly, I found out that only me and one other girl survived. Ever since then I have felt the need to be perfect to make up for the fact I survived. After all if I'm not perfect then why did I survive and the others didn't. It's something I'm trying to overcome and I feel that talking to others could help.
Thank you if you managed to read all of that
Morning Liv / Livt98
Warm welcome to the Mac Community, pleased to see you found us but not so pleased you have survivor guilt issues :-/
This is very common amongst ex cancer patients, like a form of PTSD. Typing it out and chatting about it should be cathartic; another way of gradually putting this issue to bed is by helping others: That's why you see so many self help groups set up by those with various forms of survivor guilt.
As you have been through treatment and coping with the 'baggage' that can leave in it's wake do you think helping others would be of benefit to you ? After all you have survived for a good reason right
By sheer coincidence another new member has just joined this group by the name of hodgkinsSurvivor who is a year from diagnosis (6 months post treatment) you could chat with ? Clicking this link will take you to their intro message and is looking for a survivor who has been through this and can share experiences.
I'll also give the Hodgkins Champ Mike Thehighlander a shout he has been having treatment on and off for around 17 years for NHL.
Hope this is of some help Liv - Take Care, Stay Safe, Eat Cake G n' J
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Hi Livt98 and a second welcome to this corner of the Community and you have found a supportive place to talk.
My friend Dreamthief gave me a tag so pleased to come along and help as best as I can.
My story is rather long, I see it’s wet today, is it wet with you? if so hit my Community name Thehighlander and you can see my Lymphoma story.
So I am now just over 21 years into my Lymphoma journey, after a shed load of treatment I did eventually get into remission for a rare type of Skin NHL.
I was actually told back in 1999 it was treatable but incurable and I would never see remission but back in September 2016 I was told the word remission - It took a long time to sink in but yes I was happy, very happy.
But at that same time I was told I was in remission three very good friends develop their type of cancer and yes the three of them all died within a few years. I was eventually struck down with survivors guilt, they had only survived a few years and me, I had been on my journey for 17 years by then - it was unfair especially as one friend, she had left her 3 and 2 year old boys behind.
The survivors guilt only kicked in when I was attending a 7 week post cancer support group course at our local Maggie’s Centre. I eventually sat with the support worker a few times and we slowly unpacked my invisible rucksack of stuff that we all insist on carrying around with us.
We emptied the ‘stuff’ on the floor and sifted through it all, yes talked through some of the ‘stuff‘ and slowly binned a lot.
Then we picked up the survivors guilt. We agreed that it was grief, I had lost good friends and I felt guilty, guilty for living.
We eventually agreed that I did not control the cycle of life. I did not have control over life or death, we agreed that blood cancer is very unpredictable and not everyone gets through and indeed I fully understood this.
I went through two Stem Cell Transplants and the risks doing the treatment are great and yes, people who I meet during these long periods of time in hospital unfortunately did not make it.
But we did agree that we all had some measure of control over how we lived this life. This triggered a memory that just when my three friends were diagnosed we all meet for a coffee.
We all agreed that we could not control how this would all turn out but we did agree that we would all live as best as we can and also die a good death with no regrets.
We also agreed that the last person standing had to commit to live a full and happy life in memory of those who had passed on.
Not a perfect life...... but one full of positiveness and always looking for the good that is out there - even in these challenging times. I often lift a drink to those friends and those who I meet in hospital and on the Community who are no longer with us.
Oh I have said a lot and not much at all. Happy to talk more.
We do have a dedicated Diffuse large B-cell lymphoma group where long term survivors hang around and talk.
One of these friends used the term ‘live your life and go make a difference’ so that is exactly what I strive to do each day.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Thank you, I really needed to hear all this. Especially that last bit, 'live your life and go make a difference'.
Good morning, thank you for the warm welcome. I'd really like to help others. I think it's a great idea and I'll message them now.
Yes Livt98, I see having come through treatment and come out the other end empowers me to 'live life' not to 'suffer life'
You will see that on the other thread I posted this great paper. Do have a look and come back and tell me what you think x
Thank you, I'll have a read of it now.
your post really struck home to me,i had burketts lymphoma in 2016 in remission now,i spent 9 mths on a cancer ward and watched people die all around me ,after coming home I have felt like a empty shell ,my oncologist said last time she saw me that it sounds like survivours guilt ,I have been very low cos now I have a rare skin disorder called bullous pemphigoid, and high dose steriods have made me diabetic almost feels as if it a punishment to me for surviving, nice to know others feel the same
I am currently battling survivor guilt myself, I got lucky with my cancer and had an operation in which they removed the whole tumour and surrounding tissue and the tumour was a grade 1 and it hadn't spread so I didn't need any further treatment. I then found out a month later that one of my friends had been diagnosed whilst pregnant with stage 2 breast cancer and was having too deal with being a new mum and starting chemotherapy.
Just bumped into your post and I'm glad you have had some responses to give you reassurance. I am two years post treatment for bowel cancer and like one of the other respondents I was so, so lucky. It was an unsuspected advanced tumour and as large as it could get without perforating the bowel. My surgeon told me he had performed a life-saving operation when I saw him the following day which was scary. But the cancer was localized, lymphs all clear and he wasn't keen on chemo as a follow-up but Oncology said it would be best to be on the safe side. Haha, thanks Oncology.....
At the same time a dear, dear friend was battling pancreatic cancer and I didn't know how to look her in the face given her treatment was absolutely brutal at the time. She died during lockdown having fought every step for eight years and amazed everyone in the process. But at a chemo treatment I bumped into a colleague from work who had been having treatment for a return of breast cancer. She is incurable but maintaining her health with weekly chemo. We stay in touch and some days I hardly know what to say to her.
I know I have felt so guilty at times for the 'ease' of my journey so far. But my friend said that it was the being in it together that made things alright and I think of her whenever I feel down. The point is that no experience of cancer is easy and we have a right to live every day of the rest of our lives whether that is eight days, eight years or eighty years. My friend would say - get out there, be grateful and do the things she would be doing if she could. You hold your head up. You came through this and you have the rest of our life ahead of you. What do you want next?
All the very best
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