I have known for a year that there's something badly wrong with me despite reassurances from doctors - and the inclination on my part as well to put the exhaustion, sweats, temperatures, pains down to a post-viral syndrome. Last Thursday I looked at myself in the mirror and thought bloody hell Jos, you look seriously ill. Then on Saturday, I was completely shattered by a trip up to Nine Ladies to see how the anti-quarrying protest was going. Cooking an evening meal felt like a slow-motion nightmare.
So, when I woke up 14th November with a sense of constriction around my chest worse than anything I'd yet experienced, I thought right, this is it. A Sunday, so if I ring the out-of-hours NHS and complain of chest pains they'll send an ambulance and take me to hospital. And for better or worse, I'll be diagnosed at last.
All goes according to plan. The ECG shows a blip in my heartbeat which gets me sent straight into the rescuscitation unit. With much humming and haa-ing on the part of the docs they decide I have something called pericarditis - fluid in the sac around the heart. They tell me this should rapidly resolve itself. "But you haven't looked at the x-ray yet", I wail (this having been quickly taken on the spot two hours before) - "are you sure there's nothing there?" ... They then get round to displaying it - Oh yes, there appears to be a large shadow... I must stay in hospital for further investigation.
I am allowed home five days later. Knowing by then that I have a "mass", vaguely described as "5-7 cm in diameter" sitting in my chest cavity. I have had countless blood tests, grim experiences with unnecessary cannulas, a CT scan, and a harsh introduction to the horrors of life on an NHS hospital ward. But I have also appreciated the enormous interest which other patients can offer to a nosy person.
I feel that I should flag to the doctors that I have a fondness for cannabis, and an inclination to take advantage of the effects which research has suggested are positively beneficial in the context of cancer and chemo. I have a thing or two I want to say about the slap-happy attitude to cannulas which I have experienced in hospital and don't want repeated. And I think it will be useful when I see the consultant next week if I've explained my understanding of where we're at. I feel a letter coming on. I phone the consultant's secretary who agrees that if I email her my letter she'll circulate this to the relevant doctors in time for them to read before the meeting on Tuesday when they'll discuss my case. So that's what I do. Most relieved I can use email as my printer isn't working.
I have a "mass" 5-7 cm diameter in front of and above my heart and a C-Reactive Protein count of 279 where normal is 6. This makes lymphoma the most likely diagnosis, and combined with the recurrent flu-like bouts of the past year and other symptoms Hodgkins is best fit. People often recover from this and may have 10-20 years of life in them thereafter, although at a reduced level of energy. But of course you have to join the headscarf brigade en route. Good job I'm not vain.
I'm going back into hospital Wednesday 24th for a biopsy on Thursday to establish what kind of lymphoma (there are around 30 different types) or the unlikely event that it's something different - there really isn't much else to explain this, as the doctors have to admit.
My initial feelings were - why bother with the biopsy? Why not go straight into chemotherapy while my body is still pretty fit and strong, and mount an aggressive attack before that mass gets any bigger? Why risk serious loss of fitness from a biopsy simply to convert a diagnosis with 90% certainty into a 100% certainty? But a little bit of Internet sleuthing quickly made me realise that it might not be as simple as that. The Lymphoma Information network at http://www.lymphomainfo.net responded immediately to an email request for advice, with a very definite statement that the biopsy had to be endured to provide the necessary information upon which to base treatment decisions. I decide I can buy that, and email the doctors again to tell them to ignore my previous reservations.
My morale is high - this was not a shock to me. So pity the poor old doctors
- fortunately those encountered so far have had a
sense
of
humour
and
have
been fantastic so let's hope for his sake that the smart young Irish
consultant who
I haven't yet met doesn't think that he's God!!
Never has my mailbox been so active, or my letterbox so full of cards. This gives me a great deal of pleasure. Perhaps after all I'm not generally considered quite such an appalling person as the low-level management boys' club which runs and ruins my working life would have me believe. Am much too gratified when Important and Respected friends come out with comments such as "I am very impressed with the way you are handling this".
I specially like to hear about other people overcoming serious illnesses through arming themselves with a positive spirit, and many a heartwarming tale arrives in my mailbox to tell of friends and families - mothers in particular - doing just this thing.
The most difficult issue is siblings who want to pussyfoot around it and tell me that everything is going to be all right. This is irritating and unhelpful, when what I'm trying to do is to get myself into a mental state where I can face up to the fact that it's all very serious.
In particular it's very difficult and stressful to deal with a sister's decision - implemented without any briefing to me - to try to keep the seriousness of the news from my 93-year old mother who lives with her. My mother is desperate to talk to me. But how can I possibly have any conversation at all with her if I have to pander to a decision, completely counter to how I operate, to be dishonest with her? I'm hammering away to get siblings in line with how I want to do it, which I consider to be a non-negotiable approach.
I'm already appreciating the extent to which not having to go to work is a great plus of the situation. The scenario which I'm expecting is Hodgkins disease diagnosis - whammed with chemo - mass disappears - and me then in the happy position of being able to take early retirement on health grounds.
I find myself talking to friends and family as if the diagnosis has already been made. I say such things as "Lots of people recover from Hodgkins and have gone on without relapses for 10-20 years although with a reduced level of energy and a tendency to want to live on an ultra-healthy vegetarian organic diet. Which suits me fine. It's not hard to get my head around because I've known for a year that I was far from well. In fact having finally got a diagnosis on the basis of which treatment can move forward is an enormous relief."
Self-conscious while in hospital about how straggly my hair was especially when drenched with sweat. I pour with sweat from my head at night. Getting my hair cut a way of telling the world I'm not letting myself go. Oh no. Not shaven-headed yet though, just a short bob.
I'm listening very respectfully to my body telling me when it wants to rest, when it wants to eat and what it wants to eat. It's being emphatic that it wants alcohol nowhere near, which is no loss to me. One amongst the very many interesting things about this experience is how much I'm enjoying the food that my body wants and how emphatically I'm turning my nose up at things that aren't very healthy (e.g. hospital food).
