Hello,
It is coming up to 2 years since I completed by treatment for follicular lymphoma and thought that I was handling everything ok until now. I have 2 lumps on my chest again which I have had scanned, and they say it is a cyst, however I constantly doubt everyone as the first time round I was misdiagnosed and was told it was a benign tumor and after going back and forth with the doctors for 3 years I eventually had another biopsy on the lump, and it was cancer.
I also don’t think I processed the fact that I had cancer and how it affected me, I just went through the process at the time.
Having just recently got engaged I feel like it has triggered something in me to start panicking about what the future may look like and also whether to have children or not.
Hopefully this all makes sense as this is the first time I have posted in an online chat.
Thanks
Hi and welcome to this corner of the Community although always sorry to see folks joining us.
I am Mike Thehighlander and I help out around our Lymphoma groups.
I don’t have FL but was diagnosed way back in 1999 with another type of low grade incurable but treatable NHL Stage 4a and although my Lymphoma ‘type’ is different I understand this journey rather well unfortunately.
Your time to diagnosis is actually rather normal for many, I would say I was 21 months before we actually found the truth. Lymphoma can be very hard to diagnose at times so although I understand you may not trust you are being diagnosed properly, I am sure that as you have an FL diagnosis and had treatment this helps your medical professionals look for these specific signs.
When we are diagnosed with cancer we unknowingly have a dirty big rucksack put on our backs….. we put all our life into this, our ambitions, hopes and dreams then it all gets lost by your FL diagnosis and treatment…… information, chemo, appointments, fatigue….. all the things that a cancer diagnosis brings crowds your life.
Living with an incurable condition is a mindset. My journey is rather complicated, long and harrowing (hit my community name to see my story) but to this day I do not let my cancer define me or how I live…….. I define how I live.
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.
Talking to people face to face can indeed help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support.
Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.
I have said enough, have a look at the paper then come back to me with your thoughts and questions ((hugs))
Hi
Thank you for your reply, I will have a read of the article you have recommend. Anything to try get rid of this anxiety
I think the best way to deal with it, is to speak to others that are going through it or have been through it. I was diagnosed last August, officially in remission in March of this year but had a few medical issues that caused the consultant to order fresh CAT scans, just had my 2nd since March.
I find that rather than being anxious for me its that I'm now always angry and verbally lashing out at my wife and daughter when I lose control. The paper that Mike linked to does help to explain that the physical process or putting the cancer in to remission is only part of the battle and the psychological side can take a lot longer to get over.
Hi Bizzle87,
I agree with Thehighlander, FL isn't easy to diagnose. I was diagnosed with FL in 2016, Stage 2B at 50. My night sweats started in 2014 and after an x-ray found nothing, I was treated with Gabapentin, which got rid of them and I just increased the dose if they returned. My stomach started to swell in April 2016 and in May my GP they referred me to a gynaecologist for suspected ovarian cancer as they felt a large mass in my abdomen. I received 8 rounds of RVCP and finished maintenance Rituximab in Oct 2018. 3 years now in very good partial remission.
I am glad to say that I have now accepted my situation and am carrying on with my life and making lots of plans to move back to Ireland, travel etc. I had a wonderful holiday in Malawi and South Africa in 2019.
I expect FL to come back and when it does I will be ready and able for the treatment! I exercise every day and eat really well. Exercise is the most important thing you can do to help yourself. There's loads of research proving this.
Covid is a bummer but there's good drugs coming on line to give us back our freedom. I have started volunteering as I have wound down work a bit. Due to the immune system issues, some days I feel unwell because I get a little tired or pick up a bug, but generally I'm grand.
What you say makes complete sense. You are just on an earlier part of the change/acceptance curve than I am. Things will get better and you will acclimatise to having this illness. Enjoy the time you have in remission, keep well and trust you will make it through the next relapse - which may never come, anyway. There are plenty of people who never relapse but we always hear the sad stories.
Get yourself married, have kids and enjoy your life!
Whatever cancer throws your way, we’re right there with you.
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