One of the main motivations for writing this blog is to raise awareness amongst friends and people who may stumble across this during the course of my treatment. It's a bit cheesy to 'raise awareness' but lymphoma is quite a common cancer and in the vast majority of cases is curable, but I've never heard of it, my GP didn't even suspect it and the first consultant who dealt with me couldn't even explain to me the likely prognosis.
I want to be clear that this is not about making people pronoid about having cancer, it's still unusual amongst young people, but because of that very few people will look for it in a young person.
If you want to read the medical explanation for lymphoma the lymphoma association has been recommended to me by my consultant, but I want to explain how it occurred in me because a lot of people have asked me how I knew and what was it like?
Firstly the lymph nodes in your neck, chest, arm pits and groin are meant to expand and contract as part of your immune system. From what I can gather, if they turn cancerous they still need a trigger infection of some kind to expand, the only thing is they keep expanding and stop responding in the usual way.
Sometime in February, March or April - its hard to figure out after the event-I first noticed two hard and painless lumps in my neck, I told the GP about them but was told they are lymph nodes, they will go down don't worry about them. They didn't and I told him again some time later and was given the same response. In late July I woke up one morning and couldn't do my shirt collar up because my neck had swollen so much on one side. I didn't know what to make of it but thought it would go down so waited a few days, then I felt so weak two days later that I couldn't go to work, I went back to the doctor and explained the situation. I had read online, painless lumps that don't go down after six weeks are serious and you should see your doctor. The GP wanted to brush me off again but this time I persisted and said I expected him to do something to get an answer, eventually he agreed to do a blood test.
The blood test didn't show anything, he did another one which still didn't show anything. I was becoming really concerned, I thought the GP was likely to know what it was if it was a common problem but wasn't very confident when he didn't know what to do. He wanted to leave it another month and get me to come back but eventually decided that he would refer me to a neck specialist - I could see them within two weeks.
The specialist said straightaway that there was two possible outcomes, it could be caused by an infection or it could be lymphoma. He did a minor biopsies that day but arranged for me to have a tissue biopsies a week later. Both of these showed positively that I had lymphoma, it took 3 weeks to get the results though - the worst 3 weeks ever for my wife and I. It's the lack of certainty and knowledge that's the worst thing to deal with. I'm going to write about how it feels to wait and find out separately.
From the point at which I was told of the diagnosis things moved very quickly. I met the specialist haematology (blood) consultant the next day, he explained that lymphoma is
something which can be cured. In young people the success rate is almost 100% and I will make a full recovery, reoccurrence rates are very low and I should reach full health after treatment without any limitations on what I can do. It will probably take six months of chemotherapy, that means six cycles. Each cycle involves two application of the drugs, so that means treatment every two weeks.
This is where I am now. From my first post you can see I'm getting to grips with the side effects, my life is split into good weeks and bad weeks now. Starting from the treatment day (wednesday) I usually feel sick and rough that evening, then the Thursday and Friday are bareable but I can feel bad in the mornings and often don't sleep well - or at all- because of the steroids I have to take. Then as the steroids wear off I get a crushing headache for two to three days. I never realise how debilitating a sever head ace can be, I cant converse with people, read or watch tv. Sometimes I just want to lay in a dark and quiet room. By Tuesday I'm starting to feel human again and can think about doing some work, light exercise and socialising again. That's the start of my good week. The only thing
with the good week is my immune system is at its lowest.
From the treatment day my immune system starts to reduce to a low at some point in my good week. Then it improves, leading to its peak sometime around the next treatment day. The frustrating thing is that when I'm feeling at my best I have to think about who I'm meeting, are they Ill? Could I catch anything? I am more open to catching things, but the biggest worry is if I catch anything It could develop into an infection which my body can't fight, then I'm into overnighting at the hospital which I'm particularly keen on avoiding.
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