Friday, 29 February 2008

Day 14 - Hair today gone tomorrow

I was reading a blog the other day, written by a guy with Lymphoma, who said something like "yep, day 14 is here and my hair is coming out in clumps". I thought my hair had been holding its own pretty well but thought I'd test it out. I reached up, grabbed a clump and out it came. Great! I'm going bald after all. I shot into town, went to the local barbers shop and a crazy east european women with a meagre grasp of English cut it for me. I had it cut to grade 2 around the sides and back and then 3 on top. As I watched it in the mirror, I began to feel like a marine. Still, it looked ok and I reckon it buys me a bit more time with hair. yay!

Monday, 25 February 2008

Post chemo blood test

I had a good weekend. I felt pretty much my old self. My two sisters, Chris and Jane, came to visit on saturday, along with my brother in law Peter.
We had a good catch up and then went for lunch at a pub down the road. My appetite is good and my weight seems to be holding around the 14 stone point.
We had a good lunch and chat.
Chris stayed over and it was a good job too. On sunday we needed to nip to A&E as my wife was having a few problems following an operation she had had recently. My sister took the kids into town and to the park whilst we sat on the nasty plastic A&E seats, waiting (expected waiting time 3 hours, great). Luckily Sam was given priority and we didn't have to wait for too long, but it wasn't quite the sunday afternoon we had planned.
Today (Monday 25th), I needed to go in and get a blood test done. I didn't have to return to the hospital where I was getting treatment but could nip to the local hospital (5 minutes walk away). You turn up, get a number and when you're called go and have some blood taken. A bit like the supermarket's bacon counter (appart from the blood letting bit).
The nurse doing the blood letting was not in the chirpiest of moods, so I made it my mission to get her laughing. Okay, perhaps she has heard it all before, but I reckon it must be hard work for her to take blood from miserable person after miserable person (pretty much everyone waiting for their blood testing looked like they were waiting for execution). Anyway, we had a laugh with each other. She promised to use a new sharp needle with me (rather than the same old blunt one I accused her of using to save money) if I promised not to recommend her to my friends if they ever need blood taking (so she didn't get too busy).
Chris walked to the hospital with me and after we wandered back and got some lunch. She had intended to stay over and look after me, but as I was feeling so good, she decided to go and visit a friend who was in a bad way with cancer of the spine. I dropped her at the train station and later she called me to say that within an hour of getting there, he had passed away. He was in his 80s, but a really nice guy and his family were mainly out the country as it was his son's wedding that weekend. How worse could the timing be.

Friday, 22 February 2008


So, I've finished the course of steroids (a couple of days ago, in fact) and the manic wired feeling seems to be starting to subside, although not gone yet. I've heard that people can get mood swings and a whole cacophany of symptoms from these things but so far all I've had is a dry mouth, some extra trips to the toilet, the need to feed and feeling a bit wired. Not too bad really.
My weight is still just hanging around the bottom end of 14 stone, which is somewhere I've not been for a while. I've been between 14 and a half and just over 15 for a good few years. Despite the fact that I'm eating loads, its still sat down there. Worries me a little, although the doc wasn't concerned about my weight when I went in. I guess muscle could be getting burnt, due to the 'roids which could be some of it. I don't know. I'll see how it goes.

Thursday, 21 February 2008

Into work

I went into work today. The first time for a couple of weeks really. I felt kinda strange. Wired. I don't know if its the remnants of the steroid effect or what but I felt somewhat high and slightly out of it. I think my blood sugar is cruising at 20,000ft right now. I'm wanting to eat a lot, my mouth is pretty dry and I feel somewhat manic. Made for some good conversations though.
My team were all interested (at least I think they were!) in the ins and outs of the treatment and what things did and how, etc, and we had a good catch up, which was cool.

I had a good talk with my boss regarding my current role and how things might work whilst I'm in the land of the sick. There are still a few bits to iron out but they're be a plan in place by end of play tomorrow. On the plus side, work have committed to do all they can for me, including keeping me on full pay, etc for the next 6 months, regardless of whether I am in or out, which has really taken the pressure off.

Anyway, it felt a bit more like life was almost normal again, having been back in. It was weird in a way, as it also highlighted the different place I was in now.

Wednesday, 20 February 2008

People are great!

People are great! I have been receiving loads of well wishing from people I din't really know, via my other blog on bet trading ( and today I got a message from a friend who I used to work with a year ago. he said that the guys at the company I used to work at had heard about my condition (my wife had been sending round email updates of the story so far) and they had had a collection and bought me a Nintendo DS to keep me entertained whilst going through chemo etc. What a cool gesture. You guys rock! I was really touched. They popped round today and we had a good catch up and I took possession of my new toy. Yay! See, cancer is good for something!
Anyway, I woke up this morning, feeling pretty good again. Obviously, I don't feel like normal, but pretty good considering. I took my last dose of steroids, so tomorrow morning may be the test of energy levels moving forward until the next steroid pulse.
I've noticed some stinging from the lymph nodes on my neck, where the unwanted house guests are living (eviction time boys!), which I'm treating as a good sign. The nodes feel a bit softer, but that could be my imagination. The cough that had been bugging me so much is gone appart from a few light weight normal coughs occasionally, so that's pretty good.

As a brief aside, I have been taking a few supplements that I did some research on and discussed with my consultant, who gave it the okay. I don't know if these may be part of the reason for my current "easy ride" but I'll mention them anyway.
Basically, I'm taking coenzyme Q10's, with the intention of protecting my heart against some of the doxorubicin effects and it is also a powerful anti-oxidant and energy giver to normal cells.
I'm also taking a maintenance dose of Beta Glucan, with the hope that the macrophages it should be stirring up can go to work munching on those dying Lymphoma B-cells. I'm going to move the dose up when I get my next chemo session, as I'll then be getting Rituximab and I have read a fair amount about Beta Glucan enhancing the cancer killing effect of it. My consultant seems pretty happy with what I'm doing and has only mention a couple of supplements to avoid, so I'm happy.

Tuesday, 19 February 2008

Morning sickness - keep eating!

I thought there might have been a mis-diagnosis and I was actually pregnant. I woke up this morning, feeling pretty okay, but a bit nauseous and then my empty stomach decided to try and empty itself even more. It only lasted for a few minutes but reminded me that there may yet be some side effects waiting for me. I had finished my course of anti-sickness drugs, but had some extra "use as needed" ones, so I took a couple of those and they did the trick, only downside was they left me feeling like a bit of a zombie. I have since discovered that the only time I have really felt sicky has been when I've let my stomach get empty, so now I don't! Something weird too, I've suddenly fallen completely in love with tomato soup. Never used to rate it that much but now, I can go through tin after tin. Perhaps its the steroids talking, but hey, I can't get enough of it!
Actually, when I think about it, I was quite energised this morning. I was able to get the kids up and ready and then logged into work from my laptop and got some emails sent and got caught up and felt pretty good. I'm guessing the steroids are doing their thing. I've got one days dose of them left, be interesting to see how I feel when they are finished.
So, today I was on a bit of a manic one, getting stuff done and feeling pretty energetic considering. Hopefully my energy will stay reasonably up, we'll see when the steroids are done (fingers crossed).

Monday, 18 February 2008


I had in my head that I would go into work on monday, as judging by how I felt on sunday (not too bad, still tired but better than saturday), I'd probably be up to it. I wasn't. I just felt tired and not ready for much more than helping get the kids up and then going to sleep again. Again, not a very productive day, but I still didn't feel too bad. I felt a bit out-of-it and lethargic, but hearing some other peoples chemo horror stories, I think I have got off lightly, perhaps I am on chemo-lite or junior chemo. Hey, as long as it is still working, I don't mind.

Saturday, 16 February 2008

First day after first chemo

I woke up and felt tired. Well, not so much tired, more lethargic. I could get up and about but really couldn't get myself to. My little boy, Harry (aged 2), didn't agree with this plan and so I helped get him up (changed his nappy, etc) but then crashed for a few hours. I ended up spending a chunk of the day in bed, but got up and did a few chores, e.g. a bit of washing up etc. Not a very productive day, but over all I didn't feel too bad. No real nausea or anything. So, all in all, I was pretty pleased.

Friday, 15 February 2008

Chemo day

Friday is Lymphoma day apparently. At the Eden unit, at Wexham park hospital, where I'm going, the Lymphoma chemo is given on fridays.
So, I turned up, had a good long chat to the consultant, where he went into the intimate detail that I wanted. I wanted to know what each of the chemo agents were, how they worked on a cellular level (I'm just a bit of a propeller head), what the side effects were short term and long term, especially for any alkylating agents used (ones that smash DNA about and can lead to secondary cancers in later life). It was a good session and one that let me see that my consultant knew what he was talking about and gave me a good level of trust in him. His name is Simon Moule and so far I rate the guy!
So, I was taken back into the ward, given a big fat arm chair to sit in. My arm was heated up, using a wheat filled head sleeve. This was to make sure all the veins are nice and dilated. Then a line was put into my hand and a saline flow attached. After this the first of the bad boys was brought out. Doxorubicin, a red coloured liquid, arriving in two syringes (that can cause heart damage, nice). My nurse, Becky, took it real slow, making sure that there was no pain and that the drug fed into the vein okay and there was no leakage, as apparently even though they pour this stuff in your vein, if you get it on your skin it can do so much damage that plastic surgery is required. Crazy!
Anyway, after one syringe of the lovely stuff had gone in, they didn't like the look of the line and put another one in on the other hand (and apologised profusely as they did). So, in goes syringe 2 and all was fine.
Some lunch then arrived, which I snacked on whilst the Vincristine (sounds like a dutch monk to me) fed in. This sucker can cause nerve damage, which you notice initially as tingling/pins and needles in your fingers and toes. In it went anyway.
Then, finally, the one I wanted the least, the Cyclophosphamide, was plugged into the drip. This is the monkey that can cause secondary cancers later on. Didn't like that much, but I need it now to kick some Lymphoma ass, so that'll have to do.
So, the drugs were in, which took a couple of hours and then I was waiting around for about 4 more. I had signed up to a clinical trial of CHOP14 V CHOP21 and needed to know which group I would be in (ended up in the control group, CHOP21, boo!) and then needed to wait for my medications to be prepared.
I ended up leaving with a big ol' carrier bag full of meds. I'm normally the sort of person who won't even take a pain killer for a headache unless it is really bad and now here I am with a handful of drugs to take each morning. Still, most of them are protective, e.g. anti-sickness, anti-viral, stomach acid reducing (to protect against the steroids, etc) and also one to help mop up all the dead Lymhoma crap that should start being shed as the drugs do their thing. So, all in all, it went pretty well. I left the ward feeling a bit tired and just wanted to get home, but felt that things were moving forward.

Monday, 11 February 2008

The Beginning

So, cancer sucks, as I'm sure you're aware. I just never thought I'd have to deal with it, at least not for a long time.

So, here's the story. Around Christmas (2007), I had a cold and it turned into a sinus infection. Nothing too unusual there, but I noticed that the glands in my neck were up. Again, nothing big, but after a week or so they were still up, so I checked on google, I wondered if they might be involved with draining the sinuses or something. I freaked myself out, as the word cancer kept showing up, during my searches. Ok, that's not so bad, but when I checked the conditions that tended to imply cancer, it was when the lymph nodes were: hard and unmoveable, which mine were.
I went to see my doctor and he had a check. He ummed and arred a bit and said they felt suspicious but not to panic as I had just had an infection and the nodes could be hard to move due to their position, etc. I felt a bit better but still a part of me was nervous. I was given some anti-biotics to deal with the sinus infection and told to pop back in a couple of weeks if the nodes were still not down. My heart rate was also quite high (although I was rather anxious), so my doc arranged a thyroid check, just to make sure.
The sinuses cleared up but no sooner had they got better than I started to get a crazy cough. This was a cough like no other cough I had had. My ribs ached and were bruised and sleeping was difficult. The cough was uncontrollable and at night I could see bright white halos around my vision when I coughed. I checked back into my doctors surgery to get my blood taken for the thyroid check and as my normal doctor was away went to see one of the others about my cough. They checked the lymph nodes, checked my chest and said it was just a virus and not to worry about it. I felt a bit relieved but still not sure. The cough hung on and got worse, sometimes to the point on making me sick through coughing so hard. I went back to see my original doctor to get the blood test results, which were all okay but he wanted to refer me to an ENT specialist to check out the lymph nodes.
I checked my works medical insurance, through good old Axa PPP and got a quick appointment. I turned up and got proded, palpated, x-rayed, x-rayed again, ultra-sounded and then a tissue sample taken. I turned up back in the consultants office and he told me it looked very likely that I had Lymphoma.
This wasn't a complete surprise, as I had got a list in my mind of what the problem could be. It ranged from nothing, to something exotic I had picked up whilst out the country, to a nasty cancer to lymphoma. My hopes were on it being nothing special, but I would take Lymphoma in preference to some of the other nasty options I had dug up. He told me that they had seen a mass in my chest, which was causing the coughing and the nodes in my neck. He said they need to do a CT scan to see if it had spread any further.
Another consultation was lined up, as was a CT scan and a biopsy. From 0 to 100 mph in no seconds flat. I had just crossed over from the land of the healthy to the land of the ill, with little or no warning. The transition is smooth.
I had the CT scan on monday (consulatation was on friday), the biopsy on tuesday and by the following tuesday I was in the consultants office again for the results. He said it was definitely Lymphoma but they didn't yet know if it was Hodgkins or Non Hodgkins and had some more staining and testing to do with the biopsy tissue, but the good news was that they could only find any nasty stuff in the neck and chest.
I was then handed directly over to the consultant hemotolgist who specialised in Lymphoma and we sat down in his office to go through next steps.
Rolling back a bit, I forgot to mention, after that first meeting when I was told Lymphoma was the most likely option, I rang my wife and told her and she was in complete shock. She had been berating me for considering I had Lymphoma or anything else and insisted that I was letting my imagination go wild, but I like to consider all options and then eliminate them, knowing that I'm not going to get a nasty surprise. I guess it worked this time, although it involved me being a pain in the ass for a while doing self diagnosis!
Anyway, back to the story. We were sat in his office and he showed me the CT scan and there was this huge mass (10cm) sat in my chest. My previous consultant had said the chest mass had been "unsubtle", now I know what unsubtle means! They put me on some steroids to relieve the symptoms I was getting. Over the last few days, I had started to get swelling in my face, that won me the nickname "Mr Inflated Head" with my wife and friends. I was also having difficulty sleeping, unless I propped myself up vertically. Otherwise, I'd wake up with a nasty gurgling noise in my throat and chest.
So, I was pleased to get the steroids and I was lined up to have a bone marrow sample taken and then it was chemo time. I was a bit knocked sideways. A few days ago, I was wondering what was going on with some lymph nodes, now I was getting ready for chemo, something that had always scared me stupid.