How did it all start

Coming to terms with writing the story of my diagnosis and treatment has taken some time. Some days you really want to sit down and write it, other days you just want to forget everything and kick the ball forward.

Without making this too personal, I will try to give a few details here and there which I hope can help people who are going or have gone through the same or a similar journey. I didn’t get a diagnosis after a very long time and so giving extra details might help people understand that this can happen to everybody.

I was 30 in the Summer of 2023. At the time I had been living in the UK for about 7 years, working full time as a scientist working in the development and production of traditional and novel cancer drugs / therapeutics. I thought I knew quite a bit about cancer, in a way my job was to try and get people the drugs they needed to get cured. Lymphoma wasn’t really something I was familiar with as most therapies we worked on were for solid tumors immunotherapies (so the 2^nd line of action for lymphoma for example, but not the 1^st one). Anyway, a bit irrelevant, or not. I was a relatively fit person, I would cycle 2-3 times per week, play football another day, kept myself active. I didn’t have any relevant health condition and apart from the usual drinks at the pub on a Saturday, I had a ‘very healthy lifestyle’.

• Last week of June (2023) I went for drinks with some work colleagues and the next morning I woke up with some fever and very tired. This continued for 3 days and since the fever was low (37.5 max) I just thought it was the start of a tonsillitis or just one of these things that you catch a cold because you don’t wear a jumper when it gets chilly in the evening. After a few days it went away.
• Fast forward 2 weeks, I had it again and since it was lasting for 3 days, I called the GP (I don’t say MY GP, as every time I called the appointments were with someone different) and I was given 7 days of amoxicillin in case it was an ongoing infection. After a day of pills it went away but obvs I continued the medication.
• Another 10 days later, the fever returns a bit higher, going to 38C. was really tired when I had the fever and I would sweat a lot after taking the paracetamol. Any time I had fever before I would just take a pill and the temperature would drop, but I wouldn’t sweat to cool down, if that makes sense. This was a bit suspicious to me tbh but it was summer time so I thought the heat would play a part. I was back home for some summer holidays and I went to the local doctor to ask about this -> blood and urine tests to discard infection and once I got the results back I was given 10 days amox again just in case it was a persistent infection. What stood out on the blood test was the high level of reactive protein C and the erythrocyte sedimentation rate. The other stuff was normal. The fever went away again after 1 day of pills but again I completed the whole course. When not with fever I was cycling outside for >1 hour easily without getting tired and I was honestly thinking I had not been as fit for a while… Another thought I had was whether the exercise was somehow triggering the fevers, but this was just ackward.
• Back to the UK I had fevers again and rang the clinic again. Did the bloods to check for the reactive protein C levels and this was super high again (>>100 whatever units this is). I was told to just stay on paracetamol and let it ‘heal’.
• Another 2 weeks and same story, but since the Protein C was lowering the doctor was unbothered. All these were telephone appointments by the way. Will come to that later.
• We are in early October now and I’ve had like 5 cycles of fever which lasted for 4 days and then stayed away for 10-14. I didn’t have any other symptom for the rest of the month. I was being a bit less active sports wise due to the constant interruptions -> I had to stop any activity during the fever periods and recovering the fitness was taking ages after each fever episode.
• I spend 5-6 weeks free of symptoms and was happy again thinking this ‘infection’ had gone away. But end of November the fevers return with higher temperatures -> GP again for bloods, nothing is wrong apart from Prot C, urine and blood samples tested for infection. We start the questions of where have you travelled to, etc. to discard that it wasn’t a weird virus which is not UK borne. Paracetamol and awful sweats after 2 hours of paracetamol to put my temperature down. This was also the first time after 8 telephone appointments when I was told I should be seen face to face (!!). We will come to this later on another post, the constant phone calls and asking for appointments etc.
• At this point the story was that I would start trembling a lot, feeling very cold, then after 1 hour I would start getting hot, then I would take paracetamol and after an hour I would start sweating loads. It was difficult to sleep because of these symptoms. The cycles became more frequent.
• I had another fever cycle (obvs!) first week of December and another GP just told me to go to A&E and ask for a scan ‘to discard any internal abscess due to an infection’. In hindsight this really pissed me off, how doctors are so unaware of the lymphoma symptoms and only if you tick the box of losing weight + sweat + tiredness you qualify to be looked at seriously. In A&E I was told Scan would be unnecessary and blood samples and urine samples to check for infection would suffice (!!!)… I tend to empathize with doctors somehow so I didn’t get mad but I said I had done this 3 times in the last 4 months and all had been negative. Still, no scan, back home. GP said he would refer me to infectious diseases (2 months expected waiting time just for an appointment, mad!)
• Going home for Christmas I was super mad with the inactivity in the UK and so I paid 350 euro to get a scan done privately, to then read a report saying I should have my lymph nodes checked because I had a lot of them swollen around the groin area. I couldn’t go private in the UK because I was made redundant end of the summer and I didn’t have health insurance while I was looking for a job.
• Back in the UK after Christmas, I hand the report to the GP after speaking on the phone. Urgent referral to haematology, finally. Bad news was that GP forgot to attach both the images and the report to the referral, so this was rejected. Another GP picks this up 10 days later and re starts the referral.
• I got a call from the haematologist around 25 Jan (4 weeks after scan, 6 months after symptoms started), saying the obvious, that I need to get my nodes checked but with my symptoms there is likelihood of malignancy and it is quite obvious this is lymphoma, but we need to see which type.
• Biopsy happened 2 weeks later. Anyone going through this knows how long those weeks are. And then you have to wait another 2 weeks to get the results…
• So I got Hodgkin diagnosis last week of Feb. Next step do PET scan to determine extent. I was ‘chilled’ (all things considered) as I knew this lymphoma was treatable and had a lot of reassurance from an amazing haematologist. BUT, another 2 week wait for scan and 1 week wait for results.

No more bullet points as we are coming to the start of diagnosis and treatment. Couple of days later after leaving hospital I go to the consultant appointment to find out I had Stage 4b. What was very very striking to me was when the consultant said I had cancer cells in the bone marrow, this really scared me like big time. Still, the consultant was very reassuring that I would have an 85% chance of success doing escalated BEACOPP and 70% with ABVD (but 30% of AVBD patients have to change to BEACOPP anyway). To me the choice was obvious, if my body could take it I wanted to do the strongest one. I don’t have kids and live with my girlfriend, I could afford to be off work (I was on a new job but during probation there are limited sick days cover) and my parents could come to UK to help during treatment.

Funny at the time was that the first thing the consultant asked was about if I had kids and how urgent it was to freeze my sperm. Back then I was like wtf man I don’t even care about this, just want to survive!! I cried a lot once I left the haematology wing. I sat in a bench with my girlfriend and cried my eyes out for a good 10 minutes. I was mentally prepared for the cancer bit but sh*t broke loose when I heard the bone marrow thing and I realised how serious this was.

Anyway, the main thing was to start asap because I was with the fevers at a point where it was disrupting my day to day. I should also say that for the prev 6 weeks I was feeling really tired. But I was also under so much stress and anxiety waiting for this, that I didn’t even know what the cause was. I mean, I know it was the lymphoma, but the lack of sleep due to fever and the stress were also affecting obviously.

Sadly I had to wait another 10-11 days for treatment to start. During those days I had to go to A&E because 1g of paracetamol would only keep my temperature within normal range for 4 hours. Then I would get fever to 39 degrees and wait to take another pill. I was admitted to hospital because I had the cancer diagnosis already and the protocol is that any suspicion of infection means you get antibiotics and observation…

Will come to this first cycle and the rollercoaster on another post. I have been writing for an hour and my arms are hurting!