Here is a lovely update from JP Clark, ten years post Lymphoma diagnosis.
TEN YEARS. An incurable diagnosis.
A happy reminder that ‘incurable’ does not mean ‘terminal’. The words chosen by the doctor, at the point of diagnosis need to be explained fully. When you are diagnosed, you might be given a pamphlet that you can take home and read. JP was given the wrong pamphlet and the prognosis for that particular type of blood cancer made for grim reading. I know how that feels. We were handed a ‘What To Do When You Have a Life Limiting Disease’ leaflet and it was AWFUL.
To be handed the WRONG leaflet – absolutely horrendous.
So here is JP’s update, ten years after diagnosis ! Cheers JP! Hope the lockdown fizz is flowing!
Ten years and going strong!
Ten years ago this month I was diagnosed with Non Hodgkins marginal zone B cell Lymphoma, a form of blood cancer. It’s a cancer that can never be cured, but with timely treatment and a regular check-ups it can be kept at bay. I am currently in remission, a word I don’t like much. I prefer to say that it’s on holiday, a very long one hopefully! To be honest I barely think about it day to day. In light of recent world events with Coronavirus, it has reared its ugly head again in my mind. The UK government said that people with blood cancer needed to be more careful. I also only have one kidney, a defect from birth, so its important that I follow all the guidance there is to offer. I’m not scared though. I believe in being calm and sensible – don’t panic Mr Mainwaring!
I also feel a need to celebrate this year. There was a time when I wasn’t sure I would be here ten years later, but here I am! That’s something to be thankful for, right? I have a feeling it might now be a mini celebration as we’re all in lockdown, but copious amounts of champers will be consumed I assure you! Here’s my story:
I was standing behind a new client when I got the call. I was examining her hair and chatting with her through the dappled reflection in the mirror. My partner, Mr C had picked the call up: “Baby, the hospital is on the phone for you and they need to speak to you right now.” He knew never to interrupt me when I was with a client, but these were exceptional circumstances. I made my excuses to the kind lady, told her I would be back shortly and made my way from my salon (glorified summer house) in the garden back to the house to take the call.
“Mr Clark, I have your results, can you talk?”, the oncologist said. “You have cancer I’m afraid. We don’t know what stage yet, but the biopsy confirms that you have a form of Lymphoma.” I didn’t say anything, I couldn’t. It was as if someone had stolen my voice and restricted my airway. “Mr Clark? Are you ok? Mr Clark?” It took me another few seconds, but then: “Um, yeah, I’m…ok, I…think. I need to go now, I’m working.” With that I put the phone down. Mr C asked me what they said. “I have cancer. We need to talk later. I need to get back,” I replied as I began walking back to the salon in disbelief. I feel so guilty looking back as I didn’t think about how he must have felt being given that news and then left to worry his poor sweet mind while I cut someone’s hair!
That client turned out to be a good friend of mine in the end. I was going to remain professional and just get on with the job at hand as I pinned the smile back on my face and entered the salon, but she knew. She must have felt the sudden emptiness I felt, the abhorrent stomach-churning sickness that had overcome my body. She asked me if I was ok. All I could muster was an almost inaudible mumble: “I have lymphoma.”
It was April 2010, three months before we were due to be married after twelve years together. We’d put so much effort into the planning of the day. It was going to be an English country fete-themed wedding. We wanted it to be a small affair with family and friends celebrating at our home in Surrey. The idea was for everyone to be involved.
Honestly, finding out about my lymphoma at this time was probably a blessing. I had very little time to think about it, what with all the organising. Bunting had to be made (100 meters of it), ice cream vans had to be ordered, the local school were loaning us all their fete paraphernalia; hook a boat, a tombola, hoopla, you name it! So, the small fact that I had cancer kind of went by the wayside. I know that sounds bizarre, but actually, in times of high stress I tend to throw myself into a project. Life has to carry on, right?
I noticed a lump on my shoulder in October of 2009. I went to visit my local GP, who informed me I had a fungal infection and gave me some cream to rub on it. Of course, it didn’t go away. Luckily, I’m not your typical man who shies away from anything medical, so I did go back, but it still took me four months. By that point though, I had two more lumps, one on my chest and another on the other shoulder.
I’d heard about a doctor who specialised in dermatology at our local surgery, her name was Emma. “That’s not a fungal infection. I’m calling the hospital.” Within a week I had had a biopsy and full bloods done.
The next few months leading up to our wedding were a whirlwind of highs and lows. I was under 40 at the time and apparently “young” people were considered higher priority, so I was sent to Guy’s Hospital in London for further tests. These included a CT scan (where the nurse couldn’t find a vein to put the cannula in, so eventually it went in my neck) and a bone marrow aspiration. This is often done for blood cancers such as Lymphoma and Leukaemia. Whilst a blood test can give a great deal of information, sometimes its better to go straight to the source of where the platelets, red blood cells and white blood cells are made within the bone marrow itself. The male nurse that carried out the procedure seemed to be in a hurry. He gave me a local anaesthetic then he started to insert an aspirate needle through my outer thigh using manual force. Once the needle abuts the bone, the clinician then uses a twisting motion to advance through the bony cortex (hard outer layer of bone).
“God, you have tough bones!” He cried. I could see he was having to use quite a lot of manual force. The anaesthetic didn’t seem to have worked all that well, because it was extremely painful, made worse by him shouting: “Crikey, this is hard work!” He then attached a syringe to suck out liquid bone marrow, again using the twisting motion to avoid excess content of blood in the sample. Finally, a large Trephine needle was attached, this has a cylindrical blade which collects a solid sample of marrow. I have to say, this particular harrowing day stayed with me for a very long time. The nurses were only doing what they had to, but I did feel slightly violated, not to mention very sore.
Everyone at Guy’s and St Thomas’s was amazing. I believe all the staff work extremely hard and they all care a great deal. However, there were a few blunders. I believe these happened just due to the immense amount of people that pass through their doors each day, sometimes mistakes happen. After my “results” consultation, I was given a leaflet about my type of Lymphoma. I was told I had Non-Hodgkins primary cutaneous marginal zone B-cell lymphoma. It’s a form of skin lymphoma.
However, I went home with information about a different type of B-cell lymphoma, where the prognosis was not at all good. I remember reading it on the train home and feeling the tears forming in my eyes. I wiped them dry and told myself I had to get a grip. That night we watched an episode of Grey’s Anatomy (not the wisest choice), in which a cancer patient died. I ended up in floods of tears and Mr C found it very hard to console me. “I don’t want to die. I’ve got too much to do!”
The next morning I called my dedicated nurse at St Thomas’s to ask him more about the leaflet I had been given. “You don’t have that form of lymphoma J.P. Your type is much more treatable and you will be fine, who gave you this leaflet?” I cant tell you the relief I felt. Just to know that I most probably would survive was the greatest news I had ever heard. I wanted to shout it from the rooftops!
Non Hodgkins marginal zone B cell Lymphoma is a type of blood cancer that affects the B cells – clue’s in the name! It affects the marginal zones of the spleen and lymph nodes. The marginal zone is at the edge of the area of lymphoid tissue and is where B cells are normally found. Marginal zone lymphomas are slow growing and constitute about 12 % of all B cell NHL (Non- Hodgkins Lymphoma). Cutaneous B-cell lymphomas often first appear as small, raised, solid areas of skin that can look like small pimples. These are papules. They may develop into nodules or tumours, which are often deep red or purplish. Papules or nodules appear most commonly on the head, neck, back or legs.
One of the things I kept thinking about when I was first diagnosed is was it something I had done? Was it my fault? It’s important to note that Lymphoma isn’t caused by anything you’ve done. It isn’t passed down through families and you cant catch it or pass it on.
In most cases, skin Lymphomas are chronic (long-term) conditions that are not generally life-threatening. Your prognosis depends on your age and general health and on how much of your skin is affected. Skin lymphomas are considered to be incurable but most never develop beyond early stages.
Slow-growing B-cell Skin Lymphomas can occasionally change into a faster-growing type, although this happens very rarely. This is called ‘transformation’ and it is something that I am checked for every time I go back to Guy’s Hospital. It is something that I do worry about sometimes though. Every time I have any stomach or intestinal problems it’s the first thing that comes into my head. I tell myself that it’s extraordinarily rare, but it doesn’t stop me worrying silently.
In May of 2010 I started radiotherapy. I had it every day for five days. It doesn’t hurt at all. It made me quite tired, but apart from that it was fine. However, the overall experience wasn’t pleasant. Mr C asked me if I wanted him to come with me, he’s so sweet like that, but it was something I felt I needed to do alone. I travelled on the train to London each day. The waiting room was interesting. I remembered something my consultant had said to me. She was quite abrupt, but a kind of liked it, I knew where I stood and she didn’t mince her words: “You’ll do one of two things now. You’ll either become quite militant about it and be positive or you’ll sink like a stone.” Harsh words, but so true! As I surveyed the waiting room I could see it in peoples eyes, in their body language. People exude positivity just as they emanate hopelessness. I was determined I would shine forth with militant exuberance. I would be a beacon of light saying: “Fuck you, Cancer!” I truly believe that spirit helped me through. To this day, I barely ever talk about my Lymphoma. It does not define me, it does not limit me and I will not, under any circumstances be beholden to it! Writing this little story has been the first time I have really thought about it in great depth. It’s just something I have, like a dodgy knee or allergy. It’s always there and I need to to keep an eye on it, but it doesn’t affect my daily life, I wont let it. I’m not in any way downplaying Lymphoma. I’m very lucky in that my form is probably something I will die “with” not “of”. I’m sure, if I had a much more aggressive form I would see things differently, but I still believe that positivity is the best way forward.
July 10th, 2010. Our wedding day. It was a perfect baby blue sky. The temperature would hit thirty-one degrees Celsius that day. I was alone with a glass of champagne in our room. I’d just showered and I had half an hour or so to get ready to go to the registry office. I was staring in the mirror at my little scars from the biopsies. I touched them, rubbing my fingers over the tiny indents in my skin. “War scars”, I thought to myself. I had made it! I didn’t die. I didn’t let it get to me and I’m in remission. “Go J.P!” It was the most perfect day. Friends and family from all over the world came to share our day with us. We were so lucky.
Lucky, that’s not a word you hear very often associated with cancer is it? You know what though? I truly believe I am lucky. Of course, I would much rather not have lymphoma, but it has made me so much stronger as a person, so much kinder, so much more appreciative of life, of love and of joy! I’m not only alive, I feel very alive! I notice every flower in the grass, every ice crystal in the frost on a window pane. Of course, life carries on and from time to time you forget yourself. Mr C and I still argue, we still have ups and downs. Somehow though, having been through such adversity, I always manage to remind myself that I’m lucky. I will never be cured. It will always be within me. They found another lump a year after the wedding. I had more radiotherapy and eventually went back into remission. In my 2018 check-up they found another very small lump on my forearm. It was monitored and eventually it disappeared. In my November 2019 check-up they didn’t find anything, everything seemed to be dormant. I can’t tell you how happy I was that day, I had a celebratory egg-nog latte on the way home, really pushed the boat out there!
I was told I didn’t need to come back for a whole year, it’s been six-monthly check-ups up until that point. So, now I don’t need to go back till near the end of 2020! Seeing the consultant less doesn’t concern me either, I know the symptoms so well now. If I see a raised lump and it grows or gets itchy then I will call my dedicated nurse, no question. If I get night sweats, raised lymph nodes in my neck or lose weight unintentionally (I wish!) then I know to call immediately. But, just the fact that I get checked out once a year now by the wonderfully supportive people at Guy’s Hospital makes me feel fortunate. It’s got to be better than not knowing and finding out its too late? There is so much to look forward to and I intend to make sure my life continues to be as full as it can be. What happened cant be helped and could have happened to anybody, none of us are immune. For now though, I’m going to crack open that champers and a raise a glass to a decade! JP xxx