During 2015 I was working full time as a web developer at a local creative agency. Life was good. We had just booked a holiday abroad to Greece (the first one in about a decade), organised the kids passports, and were gritting our teeth through the end of winter, waiting for the clocks to go back, spring to happen etc. I’d come home from work and just feel a bit shite. Take a couple of paracetamols. Have a quick snooze on the sofa before dinner. Very unlike me in hindsight. I’m always active, doing stuff. Never enough time in the day. You sleep when you die. That kind of thing.
Hopefully this info will help others to spot the signs of Hodgkin’s Lymphoma …and act without delay! I think it would have saved me a lot of suffering.
Next thing is noticed the glands in my neck were a bit swollen. I thought probably a virus. Do what us blokes do, ignore it and it’ll go away. Then I noticed there was a swollen gland on my groin on the right side. What the? Not had this before. Maybe from a cut in my leg or a bite or something?
I had had swollen glands in the neck before. Just to rewind a bit, around 2012 I was just about to start a new job when I came down with what turned out to be glandular fever caused by Epstein Barr virus. Had to delay the start of the new job and spent about 2 weeks lying around in bed with swollen glands and no energy. I recovered from this okay and got on with life. About a month after recovery I woke up with aching joints and muscles, feeling like I had just run a marathon. Backwards and forwards to the GP and after referral to a rheumatoid specialist it was given a name and I was put on a steroid injection, initially every couple of months, and as things improved, less regularly. It was a really debilitating condition. I lived on ibuprofen gel, tablets and heat rub. I couldn’t exercise. I couldn’t even carry my daughter around. It was rubbish. But it did slowly get better. I wont go into any more detail on this condition here as this is all about the Hodgkin’s Lymphoma. BUT – there is a link. I have read it in quite a few places online. There is a link. Medics are not sure what the link is. It’s not known to cause Hodgkin’s but it seems that people that have had Epstein Barr virus are more at risk of going on to contract Hodgkin’s Lymphoma. Especially blokes of my age (apparently Hodgkin’s mainly affects adolescents and the elderly??!)
There is a link. Medics are not sure what the link is. It’s not known to cause Hodgkin’s but it seems that people that have had Epstein Barr virus go on to contract Hodgkin’s Lymphoma.
Anyway when I finally decided that the lump in the groin wasn’t going away on it’s own, and more that one person looking at me and saying they didn’t think I was looking very well and that I had lost weight. I went to the GP. She initially said it was probably a virus. She asked me some questions: Have I had night sweats? (Um, yes acutally I have come to think of it.) Have I lost any weight? (Um, bloody hell, yes actually. I hadn’t noticed ’cause I dont check my weight that often – about 7kgs!!!) Tiredness? Yep. Itchy skin? Um, a bit on my arms, but Ive had that before (hang on, that was summer and it was a heat rash!) Doc sent me for blood tests. Went home, continued to feel crap but got on with things as best as I could. Got a call thorugh a few days later and the blood tests had come back normal. Nothing obvious. But she said that doesn’t mean anything, there could still be something going on.
Doc said to see how I got on over the next 2 weeks and to come back if things didn’t improve. Things didn’t improve and if anything the glands came up a bit more. A week later I was back at the GP. She took one look at me, prescribed some stronger pain releif and referred me to and ENT specialist. I think it took about 2 weeks until the appointment came through. We’d been doing a lot of reading online about the possible causes in the mean time. My better half Emily had found a lot of info online about Lymphoma and had talked to me about it. I pooh poohed it and said I was still sure it was a virus and that she was being negative and dramatic.
Emily and I went to the appointment at LGI in Leeds together. The doc took a look up my nose with a camera, had a feel of my glands and asked me what I thought it could be that was causing this. I looked at him and said “um, some kind of lymphoma..?” at which point he said yes. That was a big moment.
ENT specilaist sent me off for a biopsy of the neck node. I went back about a week later for a ‘needle biopsy’ – basically they gave me some local anasthetic and using a very large needle (and quite a bit of force, I’m not going to sugar coat it!) took 3 chunks out of the gland. I remember clearly that a week later I was waiting for a phone call with the results and I had a call from the ENT’s secretary. She asked if I could come into LGI for a biopsy the next day. A slot had come up. I said I thought there must be some mistake as I’d already had the biospy and was just wating for the results. She wasn’t sure why the surgeon had asked me to go in the next day, and he wasn’t available to explain why. I agreed to go. The next morning, bright and early after fasting and not drinking since the previous night, the ENT surgeon was there and explained that the needle biopsies had come back inconclusive and they needed to do an excision biopsy. Wow. So I went under the knife for the first time.
When I came round I remember Emily looking at my neck a bit shocked and saying the cut was a bit bigger than what she was expecting. The surgeon came round and said the procedure had gone well and my gland was in a taxi on it’s was over to St James hospital across town (I remember picturing a taxi with a polystyrene box on the back seat with my node in it, travelling across Leeds, and thinking I hope they don’t lose it!). The surgeon then said that the Haematology team at St James wanted to see me that day and could I get myself over there? Yes, barely 4 hours post op, gash in neck, of course, gotta be done!
St James is a modern hospital and has a whole wing dedicated to oncology. The Haematology team (who I all know so well now) were absolutely amazing from the get go. I remember people in the waiting room looked a bit shocked at thge sight of me. I realised why after I got home and had a proper look in the mirror! Large gash on the neck. No dressing, stitched together with some of that iodine antiseptic wash around it. Mad hair. White T-Shirt with blood on it from the operation. Looking dazed and confused. Surprised people didn’t run away! Anyway the consultant told me that between the ENT surgeon and the Haem Team it had been decided that they needed to see me ASAP and get me on some steroids. She said that from the needle biopsy they knew it was lymphoma, but that it was unclear as to which type. She said they thought it was a Non-Hodgkin’s lymphoma but that they needed to wait for the results of today’s biopsy to know for sure and to sub-type it. Wow! Went home to recover with a prescription for Prednislerone steroids which did wonders within 24 hours – swollen glands went down, and I actually had a bit of energy.
About a week later I went back for a clinic appointment with the Haematology consultant and to get the results. They were very surprised – it was Hodgkin’s and not Non Hodgkin’s! Apparently this was a good thing as outcomes were even better. I was to start chemo the following day on the 10th July 2015 at St James. 6 cycles of ABVD.
The fight was on!