Last morning I woke up with a husky voice, today none at all. I could make gruff noises, whisper quite coherently but not talk, at least not in human. I think this gives an idea how aggressive this thing is. No small change every few days. The radiotherapy doc noticed that the tumour has increased significantly from the scan he saw barely a week ago, so have moved the radiotherapy forward to this Monday. I'm quite happy with that as I want it zapped. He is worried about the amount of radiation its going to take to have a chance to clear the left lung (I think it is the left one). There isn't any choice really. Unless the main mass shrinks, it'll have burst out my chest aliens style before there'd be any chance of being ready for the stem cell procedure. My current set of doctors/consultants at Wexham just seem to want to keep me down. I had to go in today and give blood. I was hoping to see my normal consultant, who the consultant/doctor dude from Hammersmith, who we saw yesterday, would have got in touch with and brought up to speed and set on the task of coordinating donors. Anyway, he wasn't there and I got to see another doctor, she was okay until she started talking about all the different things that could go wrong before even getting to the stem cell transplant and that it was very low chance statistical that I'd get there. Bloody marvellous. I think I'm only going to listen to the Hammersmith doc. So far this week I've spoken to three doctors. Two from Wexham (first of whom depressed me so much I broke down in tears in their office), the Hammersmith doc who filled me again with hope yet tempered by the possibilities, risks and dangers and a final Wexham one who pissed me off again. Just tell me the path is fraught with potential issues and dangers and leave it at that. I don't want "very low chance statistically". One sounds hard but worthwhile, the other sounds like "give up, you're wasting your time". Argh! They make it so hard to remain positive and focused.
Friday, 28 November 2008
Thursday, 27 November 2008
We had an appointment today with a doctor in Hammersmith hospital. I hassled my consultant that I'd like to see him, based on the fact that he suggest my last chemo when everyone else was out of ideas. My consultant contacted him with my details and I made an appointment for 10.30 today.
I was nervy all night in case my voice was going to disappear forever and slept elevated and anything else I could think of (it was when I was not elevated at all that it happened. So, clutching at straws, but you never know!). Strangely, I woke up feeling pretty good despite a 38.6 temperature.
Things were manic, just as they are most mornings in our house, what with kids to get ready and drop off at appropriate places. Time was ticking and it looked like we would be late and then Harry caught his foot and fell on the step as we were heading to the car (he was okay and more worried about the toy he dropped, I almost filled my pants when I saw him go). We dropped him off, then entrusted ourselves to the mighty SAT-NAV. According to the ETA, we would arrive bang on time for the appointment, so if parking was easy and we were right next to the clinic we'd be a couple of minutes late, so all good so far. We hit some traffic and my heart fell, but there wasn't much and my wifes majestic driving (eek!) got us ahead of schedule without triggering traffic cameras or getting traffic police on our tail, so all good. We got there and to reception bang on time, then were kept sat waiting for half an hour. Typical.
The doctor came out. He was smartly dressed, i.e. shirt and tie, but somehow managed to make it look a tad dishevelled, but hey, I was more interested in what he had to say and whether it was just the same of rubbish.
He went through my story so far and sympathised (I started to think he was going to say, nothing we can do). He then went through the various options normally used. He said because RCHOP, RICE and ESHAP chemo have failed, it is highly unlikely any other regimes would work, so chemo was not really a viable option. He said the radiotherapy was a good idea and that media stinal tumour usually respond very well (much more positive). He said the only other option was a stem cell transplant. This would involve high strength chemo, then adding back in stem cells to rebuild the now battered immune system. He then said that it was highly unlikely that would have an effect. I thought this was where he was going to offer to do it, but just for the sake of doing something and maybe, slim slim chance, might work a bit. I felt my heart start to dislodge it self and get ready to drop, but then there was a "but". I like "buts" in there situations. He then went on to say that in this situation, the option with the best, real chance of eradicating (I liked the use of this word) the tumour was to do stem cell transplant, but not use my cells. So, it go as before, but instead giving me back my immune system, I'd get someone elses (how romantic). The idea being that the new immune system sees the Lymphoma as foreign, something mine hasn't done, and lays into the bleeder. The chances of success are not amazingly high, I think 35% was guesstimated, but that's better than what was on offer (0%).
First step is to find a matching donor. The best and most compatible are siblings, with a 1 in 4 chance of matching (so sisters I'll be asking you soon if you fancy throwing any stem cells my way). If not then they will search for a match in the UK database and I am told it is usuaully easy to get one. The thing with a sibling donor is that there is less chance of nasty things happening at the beginning, which is slightly riskier with a non-sibling donor. So the risks for me are very real but not as bad as the 100% risk otherwise. So I'm excited. There is a new plan and it is progressing. The only danger is that the new little nodules will be left to there own devices, so the hope is they do not become troublesome!
Wednesday, 26 November 2008
Today was bad. In fact I think I hit rock bottom. Not a good place to be. Let me explain a little...
During the night / early morning, (I guess the opposite of twilight, but can't think of a name for it, if it has one. (I could call it norning or might, but that is just silly)) I woke up and it felt like my throat was clagged up with phlegm. I tried to talk but couldn't which freaked me a bit. I coughed and growled and tried to clear it but to no avail. My voice came back but very quiet and husky. My actual cough was not normal either, it sounded like a hobo giving his last splutter just before falling into the dumpster for the last time. It was weird, unpleasant and bloody frightening. I tried water and gargling but nothing would shift it and my normal voice wouldn't return, just this quiet husky alter ego. Next morning my ears were still not right and the right one was deciding whether to ring or sound like the sea. My temperature was high and I felt washed out and tired. It just seemed like it was lots of little things piling up, trying to kill me off in a kind of death of a thousand cuts or something equally dramatic. I was pretty low. My wife rang the Eden centre and they said for me to come in and they'll see what they can do for my throat. That made me a bit happier but my mood was down after so many days high temperature, feeling tired, worried about what's going to happen and the steroids I had recently had had made my legs as bad as they were yonks ago etc.
Sam had to go to London for work so she rang her mum, to see if she could drop me off and she could (my mother-in-law is great). They said they wanted me to come in quickly, so we rushed in and then I was just sat there waiting for about an hour or so. A bloke next to me kept trying to talk to me, but he kept using my ringing/sea ear so I couldn't hear him, just occasionally catch his lips moving. I tried to explain the situation but I don't think he could understand me with my quiet huskiness. That was just awkward. Anyway, finally the doc sees me. I'm expecting to get straight to business and get my throat checked and maybe my sinuses or something for my ears, but no, she just starts asking me a raft of depressing questions about my worse fears about dying. She asked me what I thought the throat problem was and I said it was either mucus/fluid or the lymphoma had done something. She said most likely the lymphoma had invaded part of the larynx or one of the nerves and that was why. I asked if during radiotherapy, if the tumour regressed, could I get my voice back? Answer: The radiotherapy may do nothing (nothing like building up a bit of positiveness). ME: But if it does? Answer: Maybe ME: Could I lose the ability to speak altogether? (scared now) Answer: Maybe ME: Would that be permanent, even if this thing was cured etc Answer: Maybe. Then she went on to highly emphasise how unlikely any type of cure was and there may not be any response from the radiotherapy (what has she got against hope? and radiotherapy for that matter). Anyway my pile of depression was being added to by the second. I so wished I hadn't come. At some point I broke down in tears. It may have been during some of the questioning or at some other point, just because I felt so low. I don't know if this was registered as a point on the "help come to terms with things" ledger (good work everyone, the patient cried, they can go to their graves easier now!).
Anyway, I finally escaped. I went back to ma-in-laws had some food and then had to rush home, as Sandra (who comments here regularly) was coming to visit. Got home as she was arriving, so good timing. Spent a nice afternoon and felt a lot more perked up by the end, which was cool.
What really perked me right back up was when my wife got home. She was all smiles and wonderful and just lifted my spirits. Thanks wifey!
Tuesday, 25 November 2008
I had my first planning appointment for Radiotherapy. Sam drove me over and Harry came too. The appointment was at 7pm, which was unusual, but left plenty of time, or would have for normal people, we got there in the nick of time. We managed to get lost in some deserted corridors before finally a friendly cleaner told us we were on the wrong level. So off we went Harry in the lead, Sam setting quite a pace and me at the back, my feeble pin legs struggling to keep up. We got there and they were waiting for us. I took my top off and was positioned on the CT scanner and some lines and dots were drawn on me. Then I was fed in and out of the machine a couple of times. When they were happy, three of the dots were turned into tattoos. Sadly dot was the only tattoo going, there was no catalogue or anything. That was that. The idea is that they can use the scan for planning where the beams go, which is then all computer controlled. It felt good that something was happening.
Monday, 24 November 2008
Yesterday, I woke up with a temperature of 39.3, which is pretty high, but the hospital aren't too concerned now, as this close to chemo day it is pretty normal for me (as long as my infection markers are low and I'm not neutrapenic). Anyway, it leaves you feeling washed out and crap, so I spent most of the day dozing. My wife had loads of work to do and was beavering away and the kids were playing. We were actually at the in-laws and they have a stair lift for great grandma, but she never uses it. Because it is there, some of the stair banisters had to be removed so it could travel okay. Well, I was lying there and Sam was tapping away on the keyboard when a loud bang was heard followed by Harry, our little boy, crying. Sam moved like lightning, I told somewhat longer unfortunately. Harry had fell off the stairs where some banister was missing and took quite a fall. He was in shock and had hurt his little hand. Sam had already got her sister to call an ambulance by the time I had got down. The paramedics checked him over and he seemed pretty much unhurt, but he was in shock and not himself. His mum went with him to hospital to be checked out and he livened up when he saw the toys to play with. He had an xray and a thorough check by a nurse and a doctor and seemed fine. By the time he got home he was his usual crazy self!
Well, I'm back and focussed again. After the shock of the previous news, especially when my consultant had said there were plenty of back up plans, things are settling. I will not lose to this thing. It is not an option.
Thursday, 20 November 2008
So I had the scan. No problems. There was no queue and it went like clockwork. The next day I had an appointment to go through the results.
Monday, 17 November 2008
Well, I was in the hospital on Friday for a blood test and line redressing. I also wanted to find out the details for my scan which was meant to be scheduled for today. Did the blood stuff and that but when they checked their system for my scan appointment, there was nowt, nothing, zilch.
Monday, 10 November 2008
I've not written a post for a while again, I know, I'm a very bad person. I'm finding it hard to get motivated to do things, pretty much anything, including getting out of bed. I just feel tired, tired and then a bit tired. It hasn't helped that I've had a cold on the go too, which has left me with that annoying ear thing, where whenever you speak it sounds really loud in your head. I keep saying, "what?" or "pardon?" to anything said to me, as I can't hear a sausage!
Tuesday, 4 November 2008
A few of us went to see the new James Bond film, Quantum of Solace, on Sunday evening. I did my injection for the day, whoo, got to love the injections and I was ready to go.