Im new!

Good morning Eviee- Pete here - in bed - having a mug of tea - glorying that the Tories lost 2 seats in yesterday's by-elections. They should have lost the third.

You and I have a lot in common - except I'm 78 (and lovely with it) and diagnosed with Stage 4 HL (we larf at Stage 3) and being treated since 2019. I had a review last week and am in remission but still receiving immunology teratment and will do so for another 6 months.

It is a strange situation this remission thing. I do have what I call PBS (Pimple on the Bum Syndrome).Everytime I get a mark, bruise etc, on me I think that HL is spreading. Suppose it is something I have to live with. But after I lost my lovely wife some years ago due to a brain tumour - and she taught me to panic when we had to instead of over any little thing - what I  am going through is relatively easy to cope with. And I recommend a treatment of laughs and hugs.

You generous offer of support is kind.

Oops - dunno what happened - reply sent but I hadn't finished- I blame my complete incompetence.

Anyway as I was saying - Your generous offer of support is kind. I can't imagine what it would be like to be diagnosed at 14  - presumably having treatment which, if anything like mine, was debilitating and would have disrupted schooling etc. But you are still here! Hooray.

Lymphoma Action Charity offers support and has a section for younger people. As well as tons of information- I'm sure you know all this.

So all the best and have (long distance) hug from me

Pete

Hi Eviee and a warm welcome to this corner of the Community although I am always sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Moving on with life can be challenging and especially as your teenage years were focused on treatment and getting out the other end of the tunnel.

Group members come and go, this often happens in our various lymphoma groups as folks just want to move on with life post treatment but a few of us stuck around to help out.

Struggling with getting back into the ‘real world’ and still dealing with everything you have been through can be a different process for everyone, I am over 7 years out from my last treatment - I had 2 Allo (donor) Stem Cell Transplants so the post treatment rebuild took some time but I am well on my way.

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.

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms with one group specifically for folks just your age. I know the 2 girls who run the group so you would find a sage place to ‘talk’ with folks who have walked the walk.

It’s great that you want to help others on their journeys, using your lived experience to help others is a great way to move your life on and helps you focus on putting your hard fought for new life into a position that has a positive impact on others ((hugs))

Hi Eviee, I have only just been diagnosed a week and a half ago.  I can't imagine being diagnosed at 14, I am not surprised you are struggling to get back into the real world.  I can image the real world many of you peers are in, is interpreted and looks really different from your view point of experiencing cancer.  I was busy partying away at 21 feeling invincible never having to look at life through such a traumatic life changing experience.  I am looking forward to being in remission one day, but I feel like it will always be there in your mind as well. 

hi there! I’m so sorry to hear about your diagnosis, it’s such a tough time right?!

yeah it’s been a struggle indeed. I missed out on house parties, making friends, and school life which is such a massive part to a 14 year old!

since being in remission, just like you said, your how look on life changes and if never really goes away (in my opinion anyway). But since seeing this group, it’s great to see your not alone in these situations which is so lovely

the biggest thing for me while in treatment was to take one step at a time. It’s the best not too look too far forward

A big hug from me x

Hi Kiwi91 and welcome to the group, good that Eviee has picked up on your post. If you look back through my initial reply on this thread you will see some useful information  that you can follow up on.

A massive well done you for being so brave to put your story on here and offering your help to people… you are an inspiration.

My advice to you would use what you have been through to make you stronger and live your best life. I am 41 and currently going through chemo for lymphoma. Dealing with having cancer gives you a whole new perspective on life. I now realise I have spent a lot of my adult life worrying over little things that really don’t matter. At 21 you have been through this already and know that life is a gift to be enjoyed.

My question to you and those who are in remission is how to you get over the worry of it returning? I worry that I will constantly be looking for symptoms. Does it get easier with time? You must have been so brave to deal with it as a teenager. Teenage years are hard enough as it is!!