Posted by: Lois Lindemann on: January 9th, 2020 
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I’m making 2020 a year of 52 mini-adventures. These might be new experiences, fun things to do or challenges to complete. Will I reach my goal of 52? I hope so, but the most important thing is to have an interesting time trying new things.
To be honest, this wasn’t on my bucket list. This wouldn’t be on anyone’s bucket list. But it is undeniably an adventure.
A few weeks ago, I went to see my GP because my neck was sore and swollen. I thought I had overdone the gardening. I certainly didn’t think it was anything serious, because apart from having a literal pain in the neck, I felt really well, better than I’ve felt for ages.
It turns out that my GP is astoundingly good. Unfortunately he did not subscribe to the Overdid the Gardening Theory of Sore Necks, instead he explained that the rather large swelling on my neck was a lymph node. Various possible causes were considered, including the need to check for – and hopefully rule out – lymphoma, which is a form of cancer. I left the appointment with the forms for a raft of blood tests, an urgent appointment at the haematology clinic, a small knot of fear in my stomach and a reminder to call the surgery straight away if things got worse.
The NHS worked amazingly fast, but that wait, wondering whether or not I had cancer, was one of the worst things I have ever endured. I kept busy and kept working. I hoped for the best. Actually, I hoped for glandular fever, or mumps, because they really were the best-case scenarios. After the first set of blood tests ruled out a lot of possibilities but didn’t show up anything definite, more blood tests, a CT scan and a biopsy followed. Then – huzzah! – the swelling on my neck started to reduce visibly. We slowly stopped worrying as we realised it was probably just a virus.
Except it wasn’t. I now know that lymphoma does that – and in fact the swelling is growing again. Just before Christmas, I got a call from the hospital asking me to come in. Bugger. Diagnosis day had arrived.
Just 3 weeks after that first GP appointment I was told that I have follicular lymphoma. It’s a low grade lymphoma, so it is slow-growing and in many cases immediate treatment isn’t necessary. However, I’m definitely at the stage where treatment is needed. Chemotherapy, antibody treatment and lots of steroids await. Damn, that’ll mess up my chances of running in the Olympics! There is no cure for follicular lymphoma, but this treatment should put it into remission, hopefully for the next 6 years or so. After that, the uninvited guest is likely to return, at which point I will undergo a new round of treatment, but life expectancy is good.
This is not the news I wanted, but it isn’t a disaster either. Initially, I felt completely taken aback by all of this, but to be honest it’s not that bad, because the NHS is taking amazingly good care of me and my prognosis is good. I’m taking the attitude that I’ll worry about the aspects of my health that I can do something about (that’ll be sleep, diet and exercise) and I’ll leave the medical staff to worry about the rest. Mr TLC seems calm, but I suspect he is taking the attitude that he will quietly panic when no one is looking. I’m more worried about him than me.
In fact, I’ve probably had follicular lymphoma for a while. Over the last couple of years I’ve been experiencing night sweats and itchy skin. Of course, these are also classic symptoms of peri-menopause, so I wasn’t worried by them. Other symptoms include tiredness – well yes, I’ve had overwhelming tiredness but I thought that was down to teaching – and a tendency to succumb to infections. I think I have almost a full house of lymphoma symptoms – the only one I didn’t experience was loss of weight.
The NHS are undertaking a clinical trial investigating the treatment for follicular lymphoma, so I’ve agreed to sign up. I get the same initial treatment (chemotherapy, antibody therapy and steroids) as if I wasn’t part of the trial, but the maintenance treatment that follows will either be exactly the same, or somewhat different, depending on which half of the randomised selection I land in.
Trials want data, which means more scans and tests for me over the next week to give a baseline before I start treatment. After years of obsessively guarding my privacy and opting out of data sharing, I sat signing a form agreeing to share all of my data, because I really think this trial is the right thing to do.
The first treat was a PET-CT scan, which sounded very dramatic, but basically involved being injected with a sugar that contains a radio-tracer before doing a great deal of lying down. I lay down waiting for the injection, I lay down for an hour whilst the sugar was absorbed, then I lay down for another 20 minutes in a blooming great tube whilst a scanner took pictures of my insides. Then I came home, still somewhat radioactive and advised to keep away from children and pregnant women. Radioactive, but not a spider or mystery insect in sight. No superpower for me then. Oh well.
Image based on the NHS logo © National Health Service
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Gosh. Well done for getting your head around all this and being so matter of fact. I am sure that PMA (positive Mental Attitude) is the key to the most successful treatment.
And yes, I agree that anything that gives you the maximum amount of follow up, such as a trial, is worth the privacy sacrifice. Hard though that is!
From what I’ve gathered from people who have been through similar experiences, others wanting to tell you their own personal stories (good or bad) – or those of everyone else they’ve ever known who’ve had any sort of cancer – is one of the things they’ve found hardest to handle. Good luck with working out a strategy to use.
Hope all goes well. Will be thinking of you. Do please update us on progress, if it feels the right thing to do.
Thanks BW! I haven’t had the stories yet, mainly becuase I only told close family and one friend before Christmas. I shall certainly need a strategy for that!
I look perfectly healthy (as long as don’t tie my hair back to reveal the swelling), so only Mr TLC, my hairdresser and my next door neighbour have noticed anything wrong. I am going to have to tell more people though, especially once I start chemo. So far telling people is the worst bit, because as soon as you say ‘cancer’ they are horrified and the next question is whether it is curable. No, but that doesn’t mean my demise is imminent. Perhaps I should call it ‘chronic lymphoma’, sounds more manageable that way.
The second worst bit has been NHS tissues, which I was offered when I had a bit of a cry on diagnosis. They were … interesting. I’m thinking of asking for a few to sand down some woodwork with! Tissues aside, the NHS staff have been superb.
Tissues – dreadful – it’s the little things that matter, isn’t it? I bet they pay 10 times what a nice box would cost from a cheap supermarket, just because of their daft purchasing agreements.
If you think up a good strategy to stop all the well-meaning but unhelpful stories that will be trotted out, before they’re trotted out, or mid-flow, do share it. I’m still pondering on how that is tactfully done…
And I’d agree that ‘chronic lymphoma’ would seem a good phrase to use, and maybe, ‘chronic lymphoma that is treatable but not curable’ all in one breath might save the awkward questions?
Hope you’ve been given info on what you can claim in this situation, as IIRC, you’re not emplyed now?
You must have so much to think about. If I can help at all, just drop me an email, won’t you? Not sure what I could do in practical terms, not being very near, but sometimes just having an unmet person, but one who knows a bit of background from past times, on the end of an email can help (well, it sometimes has for me!). All good wishes, hope everything goes on as well as it possibly can.
Thank you so much. Will work on that strategy…
For a while I had a three legged black cat. Now I’ve only got her brother – a black cat with no tail!
3 years ago, after 2 emergency A&E visits in 48 hrs, I was scanned and a massive (roll of sellotape size) brain tumour was found. Since then, I’ve had 6 weeks radiotherapy for it and 6 weeks for a second brain tumour they forgot to tell me about for a year. Last week, I was told that both were now in effect sterile and no new growth had been detected. So for now, I’m in the clear. I will finally be returning to teach in about 10 days. I can’t wait!
I haven’t had chemo, neither did dad when cancer cells were discovered in his lymph nodes but a brain tumour friend is on a year of chemo tablets. I wish you a stress free treatment, a calm mind and allow you to have a laugh along the way. I did – I actually had a fab adventure! There again, I am weird 😀
Hello Vikki! Good to hear you’ve got the all clear – that’s great news. Enjoy going back to teach 🙂
I’m actually looking forward to getting started on the chemo now. Think I just want to get on with it.
My three-legged cat also lost most of his tail. I think he found adapting to almost no tail harder than getting used to life on three legs, I hadn’t realised how vital it was for balance. On one occasion I had to take my three legged cat to the vet because he was limping. He really was, but explaining this to the vet made me feel extremely daft. Gave the vet a laugh though!
Oh bless him. Clyde has never had a tail – complete rumpy – so has not had to adapt. He still struggles with balance though! Bonnie needed her leg amputating due to cancer. Just after I started radio, she was euthanised- aggressive tumours that had spread to stomach and rectum. I was stuck in Liverpool for 6 weeks 😭 For a while I joked I had 2 cats with 7 legs and 1 tail between them – they were true Manx cats!
Anyway, good luck. I’ve got to say, I’ve smiled and laughed all through but that’s cos I was hours from death and after a flipping long op, she left me in (nearly!) full working order. Dunno if it’ll grow again, it could yet kill me but life is on the up. Have a blast (of radio!) x
There are some spectacular results with some of the trials and real breakthroughs in treatment. As you say, it’s something to be lived with rather than cured and I’m so sorry to hear the news. Best wishes and I hope the present world situation isn’t raising your anxiety levels too much.
Thank you! Everything is a little strange at the moment. I am currently on of the 1.5 million who have been asked to stay at home, no going out at all except for hospital appointments. I am also supposed to stay 2m from Mr TLC, which is a tad impractical in a fairly small terraced house, so he’s keeping me safe by also staying confined to barracks.
It has rather chuffed up my plans for adventures, but we’re both healthy and my treatment is working and still on schedule, which is what really matters. I was stressing about shopping, but this morning one of my friends rang up, having realised that there was no way Mr TLC could go in and out of the house to fetch shopping, and announced her intention to do our shopping each week. I am being fantastically well looked after, for which I am very grateful.
Hoping your family are all safe. Best wishes, Lois