Hello all, thank you again for the kind messages. Just for the record I feel my choice to blog about my condition and spread the news widely has been a good one. There has been less of me having to sit down with people and when they say ‘How are you?’ put on that sad face as if I’d accidentally backed over their dog with my car and drop in the ‘lymphoma’ bomb. Now the news is out there I get brought drinks by people who are trying to cheer me up without having to repeat all the sordid details. Incidentally I am pretty cheerful anyway, but who wants to turn down free drinks? The other reason it has worked well is that there isn’t this shocked silence and stilted conversation after I tell them, it’s more, ‘how’s it all going?’ and I can either take that as an invitation to talk about it, or ignore it as I choose.
So really the blog has been a bit of a win.
I’m still keen on people sharing this blog far and wide as I have had a few people now who have contacted me to express solidarity and I think some few find comfort in it as well.
Anyway there is no real news to speak of. I am still waiting for the professor to contact me back with the details of another hospital for my second opinion. I am also watching and waiting, the question is, what do you watch exactly? I’m pretty good at watching TV…
More seriously it is interesting how knowing you have a condition changes your outlook. Its small things that you might not even notice at first. One of these was aches and pains.
Normally when you have a bruise of a day or you feel tired you just shrug it off. We all know it will get better in the end, so why worry about it? I still think that but lately there’s also a small part of me wondering is this because of my mutated blob of a spleen? It’s almost certainly not in a lot of cases but it’s tough to tell.
An example of this was the weekend just gone. I had intended to go for a boy’s weekend to Ukraine and was really looking forward to it. Then I woke up on Thursday and felt pretty rum (not in a drinking way, more of the morning after way). I had an important meeting so I went in for that and struggled not to throw up on the prospect. I then went back to the office, sat there for 10 minutes and gave it up as a bad deal. I proceeded to go home and slept all that day.
The next morning I was due to fly out to the Ukraine.. For anyone who doesn’t know me I LOVE travelling. Ukraine would have been country number 42. Sadly though I woke up at 5am and still felt crap. A fever, sickness, the trots and all the lovely stuff you don’t want to be suffering just before a holiday. I called the new NHS 111 out of hours service and spoke to a doctor (I must admit the service was very good, a little surprised, but then the papers aren’t often/ever right). He recommend that if I was going to the Ukraine I should get a blood test to check for white cells as I would be high and dry if I got there and the illness was related to my Splenic Lymphoma.
As it turned out I didn’t go to the Ukraine and this was a good move. I finally recovered on Sunday, and the boys were due back on the Monday, so it wouldn’t have been worth going. It did make me think though, if I didn’t have my condition I would have probably just tried to go anyway. Also I wouldn’t have been quite so worried.
Now I knew that the sick bug was one of those things. I hadn’t had anything wrong with me (present spleen excluded) for about a year so it was clearly due an illness. That said the whole time I was feverish and shaking (or tossing and turning as the older gramaticians would find more acceptable) I was a little bit worried it was something more. Not enough to check it out but still. The only reason I called up the doctor was to see if it was wise to travel, not about my sick bug. I’m pretty confident it wouldn’t be anything else but it preys on your mind.
That’s the problem I am discovering with watch and wait. I know the doctor will check me every three months and check me over, and really the blood work from this will form the basis of my watch and wait, but even so I am now conscious of my body and its little niggles and aches and pains. It turns out that watching and waiting changes the way you perceive things and even though I don’t have a very active condition at the moment it has changed my life anyway.
A lot of sites talk about a ‘new normal.’ This is how when you find out about your condition you are at first shocked and need some getting used to the idea. After a while you get back to normal, but it’s not the same as before you found out. It’s a new normal where you think about your condition and worry about sick bugs and tiredness.
I know someone else who is in the same boat. She had some cancer removed and is now waiting to see if it spread. It’s much harder than it sounds. Not because you think about it all the time but because when you do get a twinge, you REALLY can worry about it.
It’s still early doors so it’s probable that with time this will dissipate somewhat but it’s also very interesting.
I also haven’t decided on the whole spleen ‘in or out’ issue. I still intend to poll you all. Watch this space 🙂