Terrified

Hi Claire Dalemac 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. 

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 when my NHL was then presenting as a more aggressive type of NHL so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well……. 

The first thing ‘to get’ with NHL is that regardless where your NHL is showing up and how big it gets this is very very treatable…… When I reached stage 4 in late 2013 my skin was 70% covered with tumours, it was in my Bone Marrow and 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 we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial 15min blast of chemo 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!!!!

Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. My stage 4a made no difference to my outcomes.…

Staging in Lymphomas identifies

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

Waiting for results can be hard but it is essential to get your ‘type’ as there are over 60 types and sub-types of Lymphoma.

My advise is take a big breath….. then another….. and trust the NHS system…….. don’t relentlessly search Google stick to the Lymphoma Action website. 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.

Always around to chat, answer questions and give support…… although my type of NHL is 8 in a million rare I am 8.5 years out from my last treatment, turned 68 last Nov and living a great life ((hugs))

Thankyou for responding so quickly.   I’ve been out of my mind with worry - but hearing what you’ve been through and survived gives me some hope moving forward.  
I’m 50 and I’ve been down the dark path of ‘this is the end’.  I’ll do what you say and put my faith in the NHS.  A friend had breast cancer and said “they know what they’re doing!” 
Again Thankyou for just responding and making me feel less alone.

claire B 

Hi again Claire…… I am not saying that treatment is a walk in the park, but it is all a means to an end and all very do-able.

Over my 25 years….. (See my story complicated story > See my story)……. I had to have many treatments…… but that is life with a rare type of. NHL……

So between Sep 2013 and Oct 2015 I had 45 sessions of Radiotherapy, over 800 hrs of chemo and 2 Stem Cell Transplants….. and here I am sitting in my back garden having a cuppa halfway through doing the garden.

Some Consultants will say (rightly or wrongly)…… “if you are going to get cancer Lymohoma is the one!!!!!…..”

That simple statement demonstrates how different Lymphoma is from solid tumour cancers.

A lot of people have never heard of Lymphoma but is is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available.

When I as first diagnosed our daughters were 14 and 18…… we seen them graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. and we continue to look forward to what else is to come. 

Over the next few weeks you are going to hear lots if information so these 2 links below will help you get ready for these appoitments.

Top tips for getting the best from your appointments

Questions to ask your medical team about Lymphoma

Always around to chat ((hugs))

Oh Mike … Thankyou so much for everything x 

Hi Claire, I have not been on here for a while but wanted to add a little more positiveness! 5 years ago (age 55) I was in your position and 'terrified' at what lay ahead. Mike and others here were a great help, especially when the nerves set in or the mind was thinking 'what does that mean'.

I was first ill in November 2018. RCHOP which was effective but then relapsed in Jan 2020. Then I was convinced that was it especially as Covid hit and all stem transplants halted. 24 June 2020 SCT (one of first when they resumed  as docs said couldnt wait any longer). That is tough and recovery hard work!  

First 2 years very hard with the battle between the ears and lots of panics when my body didn't feel 'right'. Nurses at Guys were great and this site a great help. Just had 4 year check-up and so far so good. I 'think about it much less and still working because I enjoy it. Run 5k a few times a week and hike.

So...hang in there and take one day at a time and rely on the docs. Take care of your 'head' and drink lots of water!!

Take care x

Mike

Thankyou.  It helps so much to know someone else has already been through this and understands the utter devastation and panic that it brings.  I see everyone else getting on with life and mines just stopped.  And yes I’m dwelling on what the end of life will be like!    But to hear that people the same age as me are fighting and surviving gives me hope.  This has helped me more than you’ll ever know and I’m so grateful for your reply.

thanks again … don’t be a stranger

Claire x 

So sorry to hear this. Lymphoma is a "liquid" cancer and so where it spreads to is far less of a concern than with "solid" tumour cancers. In fact, most lymphoma is diagnosed at late stage. Even though I am in the States, Mike and I have traveled similar paths, both of us with rare T-Cell Lymphomas.

  I have had almost 100 tumours total, as well as lymphoma in my marrow, small intestine and spleen. I have been stage IV at least twice, and 23% of my marrow was taken over by Myelodysplastic cancer cells. Now, as to lymphoma, it flows in the lymphatic system, thus it cannot hide from treatment. Tumours are often reported to melt away like ice cubes once treatment is applied. 

   In truth, I had one lymphoma three times, another twice, as well as the marrow cancer. In 2014-2015, I had all three simultaneously. My prognosis began at poor, dropped to extremely poor, and dropped from there three additional times. No prognosis was even possible. And yet...

   This all began at 55 years of age and if I am around in three weeks, I will turn 72. So, there is incredible hope! Chin up! As to your psychological state, do you have a world view or other coping method? Therapy, meditation, prayer, familial or cultural practices, etc? 

My Goodness - what a journey you’ve been on.  And you’re still standing.   I’m still waiting on biopsy results - it’s so hard waiting and worrying about what might happen.  I have moments when I’m calm and then moments when I just sob.

reading these life stories really helps and gives me hope that it’s not necessarily the end.  Thankyou for reaching out and sharing your journey.  I pray that you will continue on your journey for many more years and that I can show as much strength and grit as you and Mike when fighting this battle.   I will try but inside I’m so scared!

thankyou again

Claire B xx 

i am no one special, but I was surrounded with special family friends and professionals. I would offer that, rather than being frightened, please consider keeping as busy as possible through this. Finish uncompleted work. Do those things which have been put off. Go back to your hobby. Take up a new hobby.

I have a different take on things than many. I refuse to give cancer more power than it has. I resolved to fight it each time. I had no idea if I would be victorious, but I fought. And, it was in that resolve, as well as other factors, that I found hope. And in that hope, i/ also found the love of those around me as well as of life itself.

As you are able, you could consider helping others - that is a brilliant method of getting outside of oneself and avoiding lapsing into maudlin. I think we are at our best when we are focused. Once diagnosed, we share a split focus: that of striving against the diagnosis, and that of getting outside of our personal world which has become confining.  

Hi Claire

It is not unusual for lymphoma to sneak up on people.

Forty four days before I started treatment (RCHOP) I had no idea anything was wrong. Turned out I had a substantial mass on one lung.  Most of that time it was suspected I had a different cancer and when it was identified as lymphoma I was advised that my prognoses had improved dramatically.

It is all very scary to start with and takes a lot of time to get the head noise under control. Once you know the treatment and have been through a couple of treatments you start to learn what to expect. In my case I then found things were very tedious. This was in 2020 and all now ok.

I would never say the treatment is easy but it is doable and four years on it is just something that happened.

Not sure anything I have said is any help for you but good luck 

Regards Ken (Garfields)