Today I met with my oncologist, not my radiologist, so now I have 3 'ologists' if you count my haematologist too. Do you get a prize when you get to a certain number?
Last night I discovered Hairy still up and about at 2am, clearly not coping with everything that's going on. I urged him to come to bed but I didn't hear him slide in next to me until about 4. Unsurprisingly this meant that when I tried to shift his back side out of bed and off to my appointment this morning he was in no hurry and I more or less had to shoehorn him out of his pit. He wasn't ready to go on time.
He still had a face like I'd recently told him I was going to sell his XBox to fund my hair dye habit and decided that the best way to de-stress me on our way to the hospital was to drive right up on someone beeping his horn and practically banging into the back of them because they wouldn't move over. I was furious! I asked him to slow down, to stop doing that, told him I was frightened. When that didn't work, I believe my exact words were 'will you stop driving like a f***ing a***hole before I f***ing lose it'. Yeah, the thing is shouting at someone who is in control of a car rarely encourages them to chill out so that just made it worse. He got angry and was shouting at me about his right of way and the silly bint in front and I just couldn't help myself. I said the words I really would never want to say 'This is happening to me. This isn't always about you!'
I felt guilty as soon as I said it but of course it didn't solve anything. I stopped myself, took a deep breath and resolved to be quiet for the rest of the journey. Of course, when we got there I got lost. The appointment itself was in the Centre for Cancer but since I'd never been there except to visit his mum while she was ill, a flustered ginger and a grumpy Hairy had no chance. He shouted at me again because he thought I was dawdling despite being late. In my defence I've got the lungs of a 60 a day smoking dirty old man thanks to asthma and you'll not get much speed out of me when I'm ill unless you expect me to remove one of my lungs and carry it with me.
I know he's really struggling. I found out he was 3 hours late for work yesterday because he overslept - not surprising since I'd left the house before 7am and he'd still been up complaining he couldn't sleep until at least 4am. Thankfully, his manager, who happens to be a friend of mine, is far more forgiving than I am and said it's to be expected that he's struggling so it doesn't matter. I caught her up on his latest behaviour and told her I wanted to reach over and bang his head against the car window when he was getting wound up with me. We don't really fight most of the time because we get on well and we're nice enough to one another not to want an argument. The trouble is we both deal with stress in completely different ways. I'm all practicalities and planning which has resulted in me making plans with my friends well in advance, making sure work is getting sorted out, covering off things, organising my many letters and information and trying to stay focused on the things I can do. It all goes tits up occasionally and I cry my eyes out for a couple of hours, get very annoyed that I did so and carry on. All pretty underwhelming stuff. Hairy on the other hand will more or less try to ignore the problem, refuse to acknowledge any of it or make any plans and will implode at some point. He's far more sensitive than I am and when only one of us is stressed it works pretty well because we tend to react differently and can help the other. Unfortunately, when we're both stressed it's less of an ideal situation and I find myself wondering if I could get away with kicking him up the back side next time he annoys me or sticking forks in his ears so he can't hear the string of profanity I'd really like to push his way.
Anyhoo, in the end I let it slide. There's no point falling out for the sake of it and I know he's behaving like this because he's worried so why on earth would I want to make it worse?
When I did finally find the cancer centre I think it's safe to say this was the first time I understood that maybe there might be something wrong with me as opposed to just being scared witless that there might be something wrong with me in the future. Maybe wrong is not the appropriate word but at least, something that should be dealt with rather than just peering at it and wondering how a few lumps could cause so much hassle. You'd think the weeks of constant appointments would have driven this fact home to me earlier but apparently going there was what I needed to perhaps take this particular incident more seriously.
The centre is immaculate and completely dedicated to cancer care which is excellent but for a first timer is a little overwhelming. First you're passing the brightly lit shops full of hats and head scarves that have been arranged on bodiless torsos - all very colourful and happy until you look at the books accompanying them in the shop about tips for making the best of your looks when you feel like you've just had half a nuclear power plant pumped into you...nice.
Then you pass the huge collection of Macmillan leaflets and books. This is followed by the Macmillan information centre itself - useful to know. Then you get to look at the corridors filled with cancer posters, various departments for chemotherapy, radiotherapy, scanning, wards, the pharmacy. Finally, if you're there for the reason I was, you find yourself in line in the Oncology Outpatients Department. I felt stupid for being surprised that I was the healthiest looking and youngest person there by a merry mile but I don't think I'd appreciated how I'd feel when I was joining the gang either. It was a little like I finally realised that OK so if I'm here and so are all of you, this probably isn't the sort of thing you can ignore. Just as well we're getting it sorted then.
I had wrongly assumed today I'd be measured up and marked and radiotherapy would start after that but instead it seemed to be a bit more of a meet and greet, this is what you've won kind of appointment. It lasted an hour but I'm still yet to fathom how. The oncologist was lovely and very funny. I'd have hugged her but I think that's inappropriate with someone you've only just met, though she did decide she wanted to be the one to meet me on my next appointment since she felt like we were friends now. Maybe I could have hugged her after all?!
She asked plenty of questions about what had happened in the lead up and any symptoms I'd had. We discussed my concerns and she cheerfully showed me a picture of the machine to explain what would happen. We had a bit of a posing session and she said I had a very awkward place to get to but they'd never let one get away yet - all very reassuring. She also told me she specialises in brain tumours so it was fabulous to have a patient she had good news for - I guess that's a nice thing to hear, even if it is a little bizarre.
She asked if I had commitments and I commented that I was supposed to meet my family in the peak district in about a week so she helpfully agreed to postpone the start of treatment until afterwards. It now will permanently say on my notes 'Reason for delay in treatment - Long wished for camping trip!!!' because apparently the system irritates my oncologist and she doesn't appreciate having to explain to the government why treatment is being put off even if everyone agrees it's for the best.
I've got a plan of action though. I get to meet my radiologist and my oncologist again on the 15th so she can 'play about with me', scan, photograph, put dots on me and the such. I then start radiotherapy on the 17th.
She talked me through possible side effects - tiredness, angry red skin and discharge - well isn't the third just a delightful thought! Apparently if you're in cancer land they don't even refer to lymphomas as cancer because they behave and respond to treatment very differently (good to know). We call it a liquid disease she told me with a big grin! 'Yummy' I think was my reply. She said unlike lots of other cancers, when you're getting radiotherapy if you've got any little tumours you'll find they 'discharge'. And that means what? Oh she says, they pop like a spot. Wow, I can't wait for that...especially since I have 2 of those little spots growing in the area of my scar already. Like cancer wasn't sexy enough with the CT scans, blood taking and fetching bum shot gowns, now I have accidental arm leakage to look forward to. I can just see Hairy being overcome with passion when he sees that! Still, small pain for large gain. What's worse, a leaking arm or a disease spreading? I think I'll vote for watching the cancer popping every time.
We're getting there my wobbly celled friends! I finally know the what, the where and the when! I am bloody thrilled! I'm going in for 12 sessions which is just a tad higher than my hoped for 1 session but apparently because it's over a large area (3cm out from the middle of the furthest tumour), more likely to return because it's on the skin, likely to have hidden lymphomas under the skin it's much better to thoroughly fry it. Fine with me!
Sadly, my dreams of becoming a human dot to dot were also thwarted today when she quite sensibly pointed out that since it was on my skin they could very easily see what they were aiming at so my marks are going on in marker pen. I did suggest the book of radiotherapy tattoos and she seemed amused but I don't think you'll see it added to a radiology department near you any time soon - gutting!
I skipped (not literally) into work after I finished up with the oncologist back to work and shared the news with my managers. One who is my manager for the team I manage and the other for the project I'm working on. Manager 1, who is the same man who likened cancer to athlete's foot, looked a little shifty and uncomfortable, especially when he saw the delicious list of side effects. He looked like he was going to say something stupid, thought better of it and then after a long pause, he said to me 'So just for my own understanding, is it chemotherapy that turns you into a different person?' I looked at him like he was crazy, quite understandably so then he asked 'You know is that the one where you can really tell someone's ill and they look completely different and everyone can tell that's what's happening? You know, they get skinny and their skin looks baggy?'
Any of you had chemotherapy and developed 'baggy skin' or woke to discover you'd become an entirely new person? Somehow I seriously doubt it.
I told him that if he meant did chemotherapy make you sick and meant you would lose your hair then yes it was more common with some types of chemotherapy and that radiotherapy would only possibly give you sickness, hair loss etc. if you happened to be having treatment to that part of your body. Hmmm says he 'So no one will know what's happening to you then?'
No. I hope they don't to be honest! I know I rant and ramble and over share here on the internet but I would hardly announce my various ailments to people I know. I've tried to protect the number of people who know and aside from perhaps a couple, I've not told them anything like how freaked out I've been because I have no desire to share that with them. Personally I don't think that's the best way to keep your friends positive about your ability to cope with something that's a little bit pants.
Unfortunately, I'm having to miss a business trip since I'll be signed up to the hospital for the duration but I called my deputy and asked her to take my place and she happily accepted so this is really a great thing for her - that definitely made me feel better.
All in all I'm feeling really positive about the whole thing. So much so, I called my mum and she was actually lovely. No hint of stress or over reaction - it was really good to have a chat with her. I'm hoping this means she's in a place where she's less likely to be suggesting I freeze my eggs to prevent becoming infertile in my arm again any time soon. She's going to the peak district too and now I'm thoroughly looking forward to seeing her.
It seems like my plan to have more good days than bad is coming together and whilst I don't feel on top of the world or full of the joys, I am much more content with the state of things and given the developments of the last 3 months I think that's more than you could hope for. I don't expect never to have a bit of a moment again but with each new thing to focus on I feel like we're conquering it one battle at a time. I might not win every battle but I reckon I'll still win the war :)
