Round 2 of the Merry-go-round

Hi everyone,

I managed to find myself in hospital again, the night before I was meant to start chemo.

My platelet count was 50, which is apparently not good, and after being discharged at 6 in the morning, we dragged ourselves to the Marsden for my appointment. They took my blood and I passed out for the first time ever, so the pholobotomist panicked and wheeled me to my appointment. It was an ignominious entrance. My arm is black and blue, as a low platelet count basically means your blood is too thin and you bleed and bruise easily.

All of this meant that the Doctors couldn't safely give me my chemo. This meant a holiday from the poison last week. By last Thursday it was in the 200's and now it is back to normal.

My reward was starting chemo yesterday.

Thankfully I am on a smaller dose, but missing a week means I will now be on chemo over Christmas which is good news for turkeys and other edible Chrismas animals.

I have decided to see as many of friends as possible so have been a real socialite. We have portable ramps so if I know you, be prepared for a home invasion sometime soon.

Taking steroids again has at least given me some motivation and studying and doing a bit of work here and there is keeping me busy.

Pub lunch with the homies

The Ladies of South London

30th Birthday with Cuz Ross

Darling Wife and Candy

Sam giving it some blue steel

Sam & Candy's kids, Isla and Faye, being cute

So all in all, despite the medical sh**storm, we are trying to make the most of it and get out and about.

The next thing we have planned apart from enless socialising, is going to watch Bill Bailey live, which should be fun. At least I know I can't be called up on to the stage as their are no ramps. Result.

Until next time, have a great Christmas and a Happy New Year.

Infection time

That was quick.

Four days after finishing Chemo Round One I found myself in hospital.

I was feeling a bit rougher than normal at the beginning of the week but I am used to feeling rough so paid no attention to it. I thought it was a dose of the blues after watching a lifeless Springbok semi-final defeat, but when I started passing blood I realised it wasn't a sport related malady.

After calling an ambulance and being picked up by a paramedic duo called Ben and Jerry I was admitted to St. Georges on Tuesday and given IV antibiotics. I have a bad Urinary Tract Infection so had to spend a couple of days in hospital. I am such a frequent flyer that I knew at least three of the nurses and doctors so they kept me entertained. The Emergency Room is used for a TV programme called '24 hours in A & E' and is busier than any train station I have ever been to.

The worst part of it all is that there was no internet access or phone signal. So apart from getting IV three times a day, I was also forced into a digital detox with no internet and email. That was brutal. I feel very detached from the world when I can't get online. At least it forces me to write the blog when I have been incommunicado for a couple of days.

I also learnt a valuable life lesson. Junior doctors all need to go on more training when it comes to taking blood and inserting canulas. The first doctor who treated me tried four times to insert a canula into my hand without sucess. I always maintain a very stoic attitude to pain, but considering my hands are the only part of my body that actually work this was a bit much. I was relieved when I spotted a specialist nurse I knew walking past. I asked her do it instead and 30 seconds later it was sorted.

They lost my initial urine sample so they aren't totally sure exactly what specific infection I have. Needless to say after a couple of litres of IV antibiotics, the infection isn't identifiable anymore. When I was speaking to the consultant, some guy came up and told us they couldn't isolate the infection from a later urine test. The consulant and I both started laughing as I had taken enough anti-biotics to cure a herd of cattle.

So I stayed on the acurte ward until last night. I convinced them to release me early and we literally bolted for the exit. The staff are always amazing and try really hard, but I can't manage my own drugs when I'm an in-patient and need an air mattress and to be turned at night because of my skin, and these things invariably never happen as planned. So, being at home is actually safer once I have the antibiotics I need. So I have pretty strong meds for the next week or so and feel like I have overcome a hurdle for the next couple of days. Plus, the amount of money we were spending at the Marks & Spencer food shop at St. Georges was becoming a bit ridiculous so we needed to get out of there.

Jay and I finally made it out to the car from the ward at about 8pm last night and were parked in by an ambulance for an hour which seemed like an ignominious exit after negotiating an early release. My sister-in-law Gaylee has come to visit from Spain, after spending the year working on a yacht on the Mediterranean, so it is great to have her here entertaining us, feeding us and keeping my wife on her toes. It is a pity she has tonsilitis which hasn't been fun for her. They have gone shopping on Oxford Street on a Friday evening which requires a level of committment and rash conviction I don't possess.

Hopefully the rugby final between the Aussies and Kiwis will be an exciting competitive match. For me, as a Springbok fan, I feel like I've won tickets to see Kings of Leon but they've been replaced by Chumbawamba at the last minute.

I'll watch it, but only just. Lots of love, Bruce

Back to square one

Hello All,

I decided to take a break from writing my blog this year. Not because I was emotionally drained or depressed, but for a more positive reason: I was finally turning a small but significant corner.

By early this year, my pressure sore had finally healed and I could get out of bed and go outside. I don't live in an area of outstanding natural beauty by any means, but it was great to go outside or to go to the movies and see friends. The slog of being bedridden for about a year and a half was finally over, and the combination of a serious pressure sore and being on life-support for septicemia hadn't killed me, so I was feeling pretty good.

I managed to get off all the drugs that made me sleepy, sloppy and unfocused. I also reduced my steroids right down so I felt lighter and less bats**t crazy. I also got to bid the flesh eating maggots and vacuum pump adeiu from my thigh and generally felt a lot better.

It is amazing how being ill and bedridden simply makes time vanish, and before you know it many years have slipped away. So I basically got out of bed and thought I'd better do something. After a few weeks of not being able to sit up straight and being dizzy from lying down for so long, I could finally move myself around fairly well. Kind of like having to learn how to walk again, just with wheels. Anyway it took some getting used to.

Then reality hit me as it does.  I haven't worked full time for a long time and have a terminal illness, which isn't great for borrowing money or job prospects. I can imagine some sharp-suited Bank Manager or HR person asking me in an interview where I see myself in two years.... I don't think saying "um, in an urn, on the mantelpiece," is appropriate. So it has been hard to know what to do next and make plans for the future. 

Anyway I managed to get a bit of work copy editing and doing some technical writing for friends which helped alleviate the boredom because, with new found freedom, comes an immense level of boredom and restlessness. Plus I think I have watched every decent box set ever made. Thank you Mad Men, Top of the Lake, Bloodlines and Friday Night Lights for keeping me sane.

I have since resumed my post-grad diploma with the London School of Journalism for the third time. I have been there for longer than some of the staff it seems. Anyway they have kindly let me attempt to finish the course that I started, maybe 8 years ago. It is a bit of a monkey on my back and I really would like to get it finished sometime this century.

My lovely wife is well and still teaching in the afternoons at her school in South London. She enjoys her tutoring sessions with the kids and I think the school really values what she does. She has just started doing a part-time course at her old university in Roehampton, which is focused on how to help kids with dyslexia. It is really quite technical and apart from diagnosing everyone she meets with a mild form of dyslexia, she is well and manages to work and look after me somehow.

Of course as soon as it was all looking rosy, I started getting a lot of pain at the base of my neck and in my shoulders last week. So it was off to get some morphine and a MRI. The last scan in April 2015 had shown tumour stability and even some improvement, but the scan I had last Tuesday now shows some damage further up my spine and the cancer has spread in both directions up and down my spine. This is not good news obviously.

When I met with the oncologists yesterday we agreed to start on chemotherapy so I am back on Temozolomide immediately. I will take a course of the drug every month for the forseeable future, however long that may be. I haven't lost any more mobility yet, but obviously the chemo and pain aren't much fun. Onwards and upwards I say. At least this is all happening in the middle of a great Rugby World Cup.

Thanks for the messages and support. I am lucky to have so many good friends. It has been a difficult time over the last 6 years. I have had people set up fundraisers in the UK, SA and Zimbabwe and even as far away as Australia over the last few years, which really helped us. People have sent me miracles cures, prayers, spiritual interventions, fishpaste and many other things which we appreciate. For now all I need is a bit of divine intervention.  Take care and I'll be in touch.