I am always described as a strong person but when the consultant said, I'm sorry you have Lymphoma (i had no clue what that was but assumed it was bad by his face, tone and leaflet!) it literally felt like I was in the Macmillan advert where the man is standing there alone in a white corridor in a white gown, the world being wooshed away. I've never felt so scared and alone (even though hubby was there) All I could think was am I going to die then how will I tell my children. I just walked out in a daze crying.
By the time we had completed the 30 minute drive home I had 'got a grip of myself' and was practically apologising and telling everyone it would be fine. And that's how it's been throughout. I've kept a lid firmly on my feelings as a coping mechanism but in all aspects of life it now seems not just the cancer. Throughout treatment I couldn't let my brain acknowledge anything that was happening. I didn't even know what was in the radiotherapy treatment room because I just focused on the immediate.
Yesterday I got the all clear. I am in fact cured. Completely wonderful!
Trouble is I now need to take that lid off if I am to be able to start feeling things again. Such great news that I know many would love to have so why am I still feeling like this. I know I need to process the events of the last year but I don't know how.
Great news but now you have lost your treatment safety net you are having some wobbles - this is so normal...
I posted this earlier to a few others in the group with similar feelings, so perhaps reading through this may help you as it helped us.
2275.after the treatment finishes-then what.pdf
Take care, G n' J
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Hi LadyLoo and welcome to this corner of the Community.
I was diagnosed with a rare Non Hodgkins Lymphoma back in 1999 so I do understand the journey you have been on. I was told in 1999 there was no cure and indeed no remission....... fast forward 17 years I heard the word remission and the longer I am in remission the less chance my condition could come back.
The fact that you are on the Community will help you a lot - we do have some specific Lymphoma groups and these would be good places to connect with others.
General Non Hodgkin's Lymphoma
Diffuse Large B-Cell Lymphoma
Mantel Cell Lymphoma
I have done the full face mask thing a few times and it’s not a great experience, my journey also had a lot of chemo and two Stem Cell Transplant (hit my name for the story).......... but I am still around doing great.
You are early in the post treatment journey and this part can take far longer than you would hope but you will get there.
Do have a look at this great paper as it helps understand the post treatment milestones.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
Always around to help you walk this part of the journey ((hugs))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Thanks for the article. Wow, it is exactly me. I'm rubbish at sharing how I feel so this article is something I can share with family to explain. I'm going to keep reading it to reassure myself while I adjust to this next phase.
Hi again LadyLoo, great that you found the paper helpful and yes “that is just me!!”....... and it is a great tool for those around you to have a look at and for you to move life forward...... there is also more great conversations to be found through the group Discussions tab.
Well done in getting info in your profile, you don’t say what type of Lymphoma you ‘had’ but I do know that a lot of the treatments used are very hard work.
So now a challenge, a challenge to become proactive after reading through the paper a few times and using it as a vehicle for change and life improvement.
So get a note book or some sheets of paper and put pen to paper - it is a good way forward...... and helps unpack the stuff you have collected during your treatment.
So a page per subject heading. Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards.
When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list.
By doing this you can actually see your progress and celebrate achievements.
When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.
The headings would be:
What steps am I taking to regain trusts in my body?
What steps am I taking to regain trust in myself?
What steps am I taking to overcome living with uncertainty?
What steps am I taking to deal with the world?
What steps am I taking to regain mastery and control of my life?
Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.
The article really helped me to talk with my hubby about how we both feel
Follicular Lymphoma and so far so good but I now know that 50% of 'cured' patients get a recurrence so I now realise that it is a much longer journey than I was kidding myself it would be and that even though I am currently clear I am effectively now on watch and wait.
So 'what steps am I taking to overcome living with uncertainty' is definitely where I'm at right now but at least we are now recognising that thanks to the article.
Good morning LadyLoo, even although I highlighted our Follicular Lymphoma group it did not register with me in my last posts so now the penny has dropped it brings a new dimension to our discussions......I broke my golden rule and did not review all the post so sorry for missing this completely.
You will see from my story Thehighlander that I was diagnosed back in 1999 with a very rare skin Cutaneous T -Cell Lymphoma.
I was told that there was no cure and not even remission so lived and worked through 14 years of treatment before we had to use the ‘big guns’ starting mid 2013........ it’s a long traumatic story but what I can say is that I was told on 19th September 2016 that I was in Remission and NED (No Evident Disease)......... you get my ........ this should never have happened, but things move on in the area of treatments.
So I now see your challenges in a new light. I was told that I had to see my type of Lymphoma to be the same as a chronic illness like diabetes - treatable but not curable - but that mindset has changed.
I am 4 years 4 months and 6 days (not that I am counting) post my second Stem Cell Transplant and the further I get away from that date 21 Oct 2015 the more chance I will die of old age...... well that’s what my Haematology keeps telling me
Our very supportive Follicular lymphoma group is worth looking in and if you can add to any posts just hit the reply button at the bottom of the posts, or even set up your own post......... I do help out in this group as well.
There are over 80 types of NHL, it is a challenging type of cancer that a lot of people just do not understand and with so many rare types one treatment size does not fit all.
Now that we have all this information on the table you are going to have a lot of other questions as ‘Life after Cancer’ now takes on a completely different meaning now.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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