New to cancer

Hi Hope6388cc8a2d and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. 

Hope6388cc8a2d said:

am half way through RCHOP and am over the moon to recently learn from my mid way scan the cancer has reduced by 88%.

This is great news and you need to expect that once your treatment is complete and you have your post treatment scan 4-6 weeks after you last treatment you will be told the magic words remission…… in my complicated case it took 17 years before I heard the word remission.

I don’t have primary mediastinal large B-cell lymphoma but for some context about me.

I was officially diagnosed way back in 1999 at 44…… although I now realise I had most likely been living with with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. for much longer.

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

So the future?…… the future is most certainly out there for you to plan towards.

All through my many years of treatments my wife and I kept notes books for taking to appointments and detailing everything that was said. Contact names and numbers, results, the questions we wanted answers for and indeed the answers we received…… basically a diary of my 25 years journey…… but at the back of the books were our hopes and dreams pages…. Over the years I have had a total of 130 days/nights in hospital so we would fill up our post treatment hopes and dreams pages….. we now look at these pages and we many of them achieved with new ones being added ….. so yes, there is most certainly a future out there.

Over my years volunteering on this platform and more regularly with Lymphoma Action I have had discussions with 1000s of people….. a good number with your exact NHL type who went through treatment and are now living full and normal lives.

Some encouragement from my journey - I was first diagnosed way back in 1999 age 44 when our 2 daughters were 14 and 18…… it took 14 years before I needed full on treatments due to me having to be treated for 2 rare T-Cell NHLs at the same time - my main treatment journey was between late 2013 to late 2015 and was rather complicated (See my story)……. 

But we went on to see our 2 daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I am 9 years 10 months out from my last treatment. I turn 70 at the end of this year and we have most certainly been living as normal a life as any other people.

A small number of people do have long term post treatment side effects…… I have, but I was much older than you when I had my main treatment.

My great CNS always said “Mike, don’t stress about the stuff that ‘may’ happen, put all your energy into living life to the full”

That’s enough from me…… are you in the UK?

Always around to chat.

Thanks Mike,

I think due to my age, fitness and not having any experience of anyone around me having cancer I am now finding it quite difficult not to worry about my future health (aswell as the current treatment). I had taken my health for granted and now I realise it is out of my control it is causing anxiety.

I am focusing on the positives and have a new appreciation for life every day. I practice gratitude with my boys every day. The lead up to my diagnosis was overwhelming and upsetting, it was such a bulky tumour to go unnoticed and the range of possibilities of what it could have been were terrifying. 

I live in the UK and think I would really benefit from meeting other people in real life who have similar diagnosis at all stages. Is there any support groups you know of I can look in to?

Thanks again!

Hi again Hope6388cc8a2d ….. it is very easy to go down uncontrollable rabbit trails on this journey that take us away from the positives…..

If we were talking about say breast, lung, colon cancer….. (with Lymphoma being the 5th most common type of cancer in the UK) we would most likely be having a very different conversation about the future.

You will see from my story that by the time I started my first chemo in late 2013 it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film.

My jaw had seized, my gums had swollen and were coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was being restricted and the pain was off the scale.

I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner….. the rest of the journey is history.

Before you know it….. this unwanted journey will be over and in your past….. and you will be able to move on with life.

As you will see, this group is on the slow side and this may well be down to the high profile of Lymphoma Action.

Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

All the links I use are taken directly from their website and I have volunteered with them as long as I have with Macmillan…… you may want to widen your support and information base by checking them out

They run various Support Platforms…

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey……

Their Closed FB group alone has over 5900 members and unfortunately you would most likely bump into me on there also ;)

They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment and post treatment journey.

When you are finished treatment look at their very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

Also check to see if you have a local Maggie's Centre in your area as these folks are amazing and most centres run a Heamatology Support Group.

Always around to chat and be frustratingly positive and supportive ;)