Hi all,
I'm new to the forums, so thought I'd introduce myself. In July my husband who is 48 was diagnosed with Stage 2, Low Grade B Cell Lymphoma. It was March when he first felt the lump in his neck, our diagnosis at the end of July seemed to take forever. Now that we know, we are both better equipped to mainly carry on as before, no treatment is needed yet, we are doing the "watch and wait" as a PET scan revealed lymphoma in his armpit too. If we'd caught it in only 1 place, they may have considered radio therapy or chemo, but we didn't!
The first few months he read every single thing on the internet about cancer, even though I tried to stop him, he's that sort of person who needs to know facts and figures. We paid for a private scan after the first appointment at Ear Nose and Throat, as the specialist was convinced it was a blocked saliva gland. The other half was convinced it wasn't! Luckily they did the biopsy on the scan day, but this is where the waiting really started, I'm sure as others will have found, it's so difficult that 6 week wait.
I've only just started looking at forums, maybe as we've got over the worst of the shock, I kept telling him not to be paranoid, and to trust the doctor!
The next appointment is November, but we were told last time they probably won't scan again unless there's any changes or symptoms, luckily so far so good. Other than a positive covid test today unfortunately, he did such a good job of not getting it until now. I work at home, so am keeping a good eye on him this week, supplying the paracetamol and cups of tea.
I came to the forums to ask about travel insurance, and me trying to get cover for my upcoming ski holiday whilst he remains at home (not a skiier!). I've joined the travel insurance group too.
Hi again Whipperty and well done navigating across to this group. First good to see you may have found some Travel Insurance.
As I said I have a totally different type of NHL first diagnosed in 1999 when I was 44 and like your husbands Follicular lymphoma it’s classed as Low Grade (although grade 3B follicular lymphoma can behave, and is treated, more like a high-grade lymphoma)
The journey to diagnosis your husband has had is actually not that unusual, for my it took me a year, 6 biopsies and 2 CTs to find the truth and this was with me clinical team having a good idea as to what I had.
Active Monitoring (Watch and Wait) is a mind set, but it’s a good way to look to treat only once a condition gets to the stage that the treatment will be most effective….. in fact that was me for the first 14 years of my journey (Although I was having maintenance skin treatments)
The important thing is when treatment is required it will be very effective.
Always around to chat and answer questions as best as I can ((hugs))
With regards to his positive COVID test he needs to talk with his clinical team as he may well get the fancy Antivirals that are available.
Good morning Whipperty, do call his positive Covid test in.
I tested positive back in April….. 2 years to the day when I had received the call from my CNS (Cancer Nurse Specialist) telling me that I was now back into my post Stem Cell Transplant in that I was basically in isolation for a good 6 months (hit my community name to see my story) but I did ok with covid and I actually have had worse cold so I do hope he is the same.
It takes time to get the brain round having cancer and nothing being done but the more you understand the condition and talk with others the more the noise between the ears calms down and you can navigate a way through this with confidence.
Good to hear that he is getting some normality, I worked a full teaching timetable for the first 12 years of my diagnosis until I took early retirement just a few years before my condition became aggressive.
I agree, I also think there are far more people worse off than me….. I have good friends with MS and Parkinson’s and they have no light in their tunnel.
We do actually have a specific Follicular lymphoma group so click on the link and have a look at all the posts.
FL is the most common type of Low Grade NHL so this brings the advantage of lots of research and treatments.
Do check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
Always around to chat ((hugs))
