On my first post for this blog I talked about the most pressing symptoms (a cough and shortness of breath) that triggered my diagnosis, but they were by no means the only symptoms I had been experiencing.
For about 12 months prior to diagnosis I had suffered with terrible itchy skin. It started off with a few sensitive patches of skin, and escalated over time until such a point where every part of my body itched.
I used to sit and scratch all the time – so much that friends and family used to comment about it. I tried to resist, but the urge to scratch was just too great.
I’d also have very broken sleep, as I’d wake up several times during the night needing to scratch my skin.
It got so bad that I’d have to visit a toilet cubicle a couple of times a day at work, strip off all my clothing, and scratch my skin – my legs, my arms, my face, my chest, my back, everywhere! Even the palms of my hands and souls of my feet itched!
I did eventually get referred to a dermatologist, and was put on a number of medications to try and calm my skin down, and eventually after several months one drug – Dapsone (usually used for treatment of leprosy) – did start to work. But at this point my skin had got so bad that I had open sores on my legs and arms that have left behind permanent scars.
The itching finally stopped on my first day of chemotherapy. It was like a switch had been flicked, and since that day the itching completely disappeared!
I used to complain at work that the office was really hot. I even got the building management people to adjust the air conditioning to reduce the temperature in the room.
Little did I realise at the time that I was suffering from a persistent mild fever, which made me feel hot all the time.
I used to get relief from sitting in a cold room, and the cold also helped with my itching skin.
It got so bad that it would affect my sleep. When I went to bed I would feel really hot, and it would take an hour or two of lying still in a cool bedroom for me to feel cool enough to fall asleep.
The itching skin and the mild fever obviously impacted upon my sleep. But as well as that, I was suffering from Middle-of-the-night Insomnia – that is, I would wake up in the small hours of the morning, and be totally wired, and not able to go back to sleep for 2 hours or more.
To try and help with the sleeping, my GP had me on sleeping tablets, but they didn’t really do anything for me.
At the time I had put my insomnia down to stress. I was busy at work, and when I would lie awake at night I would obsess about work problems.
My lack of sleep also affected my days, and I always used to feel tired and run-down.
Cough and Shortness of Breath
The cough first appeared about 8-10 weeks prior to my cancer diagnosis. I didn’t think much of it, and for the first week or so I assumed it was a cold. I eventually did go to the GP, and I was treated for a chest infection.
However the cough didn’t go away with treatment, and was joined after a while by breathing difficulties.
It got so bad that I would feel dizzy standing up – from the lack of oxygen getting into my system – meaning that I couldn’t exert myself very much without feeling I would faint. Even walking 100 metres was a struggle, and I would constantly need to sit down and catch my breath.
In the final couple of months before diagnosis, my appetite was suppressed. I just didn’t want to eat much. Where before I would empty the plate during meals, I found that I was only eating about half of my dinner. And I wasn’t snacking as much as I used to.
During these months I lost maybe a couple of stone in weight, which could have been viewed as a blessing, because I’m an obese man. But it’s also a classic symptom of Hodgkins.
You might have thought that all of these different medical problems might have been an indication that something more serious was going on. And with the benefit of hindsight, it seems obvious to me that they were all connected with the Hodgkins.
However, all of these symptoms only came on quite slowly, and seemed at the time to be unrelated. And as such they were treated in isolation.
In addition, the Hodgkins Lymphoma can’t be diagnosed from standard medical tests such as taking bloods. The only definitive way to diagnose it is with a biopsy of a lymph node.
And so, it was only when the cancer spread to my lungs that it was eventually identified.