I was diagnosed with Stage 3, grade 3 Follicular Non Hodgkins Lymphoma in April 2016. I was 49 at the time, a single mum of two teenage boys (which I still am, although now turned 50!). The eldest of my sons was about to sit his GCSE's which started three weeks after my diagnosis. When I was diagnosed it was a bomb shell, much like others. I was well aware of the disease as my mother had the same condition and had died of it 5 years after her initial diagnosis after 2 relapses some 13 years before. That was a scary benchmark and my boys and brothers found that difficult to deal with and we keep reminding ourselves that treatment has come on a long way since then.
I delayed the start of my treatment until after my eldest son's GCSE's had finished. My consultant was fine with this although made it clear I needed to start treatment within 6 months. I know 'watch and wait' is a common approach for those with FNHL, but in my case this was not an option for too long due to it being grade 3, advanced and I was experiencing all the symptoms.
I commenced 6 months of chemo on the B-R regime in July 2016 with my last chemo session in December 2016. I was grateful that I kept my hair, although suffered significantly with sickness and nausea throughout my treatment, even on the maximum anti sickness drugs they could give me. Extreme fatigue also was a challenge, as was being thrown into menopause. All of this prevented me from working, with maintaining the house and being a mum being enough for me to manage during that time. I got through it though and am now in remission and on Rituximab maintenance treatment and went back to work on a phased return 2 months post chemo and now working towards full time work 4 months post chemo.. I understand that the B-R regime can be kinder than others and I am grateful for that. I know the lymphoma is likely to relapse one day due to the type I have, however for now I hope the Rituximab does it's job and extends my remission time for as long as possible and that I can enjoy many years before facing full chemo treatment again.
Unfortunately some activity showed up on my PET CT scan in my colon so I am undergoing further tests for that having been referred for a full colonoscopy under sedation due in 2 weeks. However am hopeful this is just chemo damage and my body will repair. I have had my second round of Rituximab today which prompted me to reflect how far I had come and share my story. A full year on and my youngest is now about to take his GCSE's starting in May. What a year it has been. Despite everything my eldest achieved tremendous GCSE results getting 4 'A*'s, 6 'A's' and 2 'B's' and is now in studying his 'A' levels. I am proud of how both my boys have coped but never under estimate the impact my diagnosis and treatment has had on them. I am so conscious this disease does not just affect those diagnosed but also affects the whole family and friends around you.
My message to anyone reading this is that whilst I recognise there are so many different types of NHL and everyone has different experiences, different treatment plans and different responses to the treatment, I want to pass HOPE to you all. Whether you be a relative or friend worried about some-one who has been diagnosed or you have been diagnosed yourself or are in the middle of treatment, on 'watch and wait', in maintentance treatment, in remission or relapsed, there is so much they can do now. We can all but try and face this chronic disease with as much strength and positivity as we can. There are times when you may be scared, times when you may feel weak, times when you wonder 'why me?', times when you just feel so ill, times of never ending tears and fear, and all of this is absolutely normal, no matter how strong a person you are or what ever age you are, male of female. You are not alone - I would do anything to just provide some words of comfort, reassurance or just a listening ear to anyone that needs it. I have been there, am still there and will be there for the rest of my life - this disease is here to stay but I will not let it beat me and will do what I can to support others who have been touched by this disease. I have heard of so many stories of people who have lived for years and decades with this disease, that's a heck of a long time to enjoy life and have the best fun you can when the disease is quiet and dormant.
Take care all - sending my strength and love to everyone who has reason to be on this site and reading my blog.
xxx
