After 5 weeks in hospital and two full blood transfusions, numerous tests, being poked, prodded, jabbed with too many needles and a then a bone marrow biopsy, I was diagnosed with stage 4 mantle cell lymphoma - a rare and very aggressive blood cancer - on 21st September 2024.
I was told that my cancer was so aggressive it was bordering on terminal. Nevertheless, chemotherapy started the very next day. I was having meeting after meeting with the haematology experts at the Royal Free in Hampstead - to be honest, I cannot remember a word of what was said to me.
To say that my life changed forever on this day last year is a huge understatement. The emotional roller-coaster was, at times, so hard to deal with. It's just impossible to say just how challenging the first few days, weeks and months were - I have no idea to this day how in Earth I got through it. Plus, the chemo was taking it's toll - total hair loss, fatique, nausea.
When told that I was brave and strong, I literally have no idea what that meant because I certainly felt that I was neither. I was a bloody wreck.
After 8 treatments of R-CHOP chemotherapy, I had PET scan in March '24 with a "complete metabolic response" outcome. Essentially, my cancer had been beaten back. Remission!
However, mantle cell lymphoma is, of all of the lymphomas, the most aggressive and the most deadly. It often returns after successful first-round chemotherapy. So, I now receive a drug called Ritixumab every 8 weeks and will do for at least 2-years. My veins are so hard to find now that having the needle in my arm so the Ritixumab can be adminstered is so damn painful!
So, I am living with an aggressive, incurable but treatable cancer - mantle cell lymphoma. So, what now for me? Well, I am really frightened by the possibility of my cancer returning. But, in the past 3-4 months I have begun to feel like me again.
And I am now doing quite a lot of voluntary work and that is keeping me active - physically and mentally - which is so very important when you are battling cancer
For all those out there with cancer, you are not alone. I share your despair, fear, pain and loneliness. There is hope and there is a lot of support out there that I urge you to grab with both hands (Personally, I find Maggies an incredible charity).
Finally, talk about your cancer openly with anyone who will listen - you will be amazed at just how supportive the unlikliest of people can be.
My heartfelt best wishes to any of you that are or know of someone battling cancer. Andy
Hi again Andy1967 ……. It’s only when you put your complete journey down that you see the road you have navigated…. well done and it’s good that you have found Maggie’s helpful…… our centre in Inverness is amazing.
You may want to consider putting the text from this post into your profile as this helps others when replying to you and when folks are looking for someone on a similar journey…. you also don't have to keep repeating yourself. You can find your ‘Profile’ section by clicking on your username and as always you can click on any member to see their story….. although my story is rather long.
Hi Andy…… if you click on ‘your’ community name > Andy1967 this brings up ‘your’ area in the community….. this is where you will find the ‘Profile’ tool.
You can copy and paste into the profile area or insert text directly in…… just remember to say once you have finished….. you can go back at any time and put in updates as I have done over the years.
Well done 
