Brain Man

Days out

My treatment has been Monday to Friday for the radiotherapy, (fellow down hill competitors will go yes so are we doh!!!!!!), well mine started on a Tuesday as it was a Bank Holiday Monday, so I did have one Saturday appointment.

However now back on track, so last Saturday I went to Boscobel House, another refuge of Charles II during the English Civil War, (there’s a song by The Clash of the same title – check it out, brilliant song).

I mentioned previously about visiting Moseley Old Hall and King Charles having to hide in a tree, well it appears the tree was actually at Boscobel House not Moseley Old Hall so off we went to Boscobel to check it out.

The actual tree had been destroyed in a storm, an offshoot from the original tree is reported to be its daughter, (the plaque said the gender not me I assure you). I thought, ‘if the plaque is there then the Round Heads must have been daft not to have seen the sign saying Charles II hiding here.’

Reminds me of visiting HMS Victory years ago and there was a brass plaque on the floor saying ‘Lord Nelson fell here.’ I wasn’t surprised as I saw lots of the public tripping over it. In this day of Health and Safety either remove the offending trip hazard or fence it off lol, unless the Ministry of Defence has collected more money than Midas through the revenue of charging people to visit an historic monument and have a large compensation chest.

Anyway I digress as normal I hear you say haha I blame Brian and me being a bloody Yorkshireman. It was a ggreat day out and nice to have a weeknd free of hospital appointments.

On a totally different thought, I’d like to shout out to Hull Kingston Rovers, I know you lost to Salford on Friday night but still managed to stay up at the expense of London. Jeez lads are you trying to kill me or what?! We should be beating those black and whites, we are the best team in the city. How can a team who dress the same colours as that fishing port across the river be above us in the league??!!

Treatment

Hi fellow crew of the GB bobsled team and family supporters.

Well yesterday was interesting, had two appointments for two separate issues – had my radio/chemo treatment in the morning so was there for 0830, but my typical luck the machine was playing up so was lying on the bed with my mask on for 20 minutes whilst they powered down and then back up again.

Then I had to be at QE hospital in Birmingham in the afternoon for a heart CT scan due to my episode the night after my operation back in July.

So I arrived at the QE and sat around for an hour whilst medical staff were unaware of what I was going through at the other hospital. NHS I salute you. The nurse asked what meds I was on and said ‘I cant spell them!’ What?! At that point I nearly went private!

So I had to put the hospital gown on and was told I needed a canulla to run the dye through. I bruise easily now due to my drugs, so they decided to go through my bruises on my arm but lo and behold they say ‘oh sorry that’s not working’ ☹ quelle surprise! So they go through the other arm then find it wont clot!!

Upshot is my arm looks like Tutankhamun’s physician has come down out of retirement and dressed it. I finally got home at just before 6pm.

My family kept saying I looked tired but really I was just pissed off after a long day of hospitals.

Apart from that, inbetween the appointments I had a lovely time doing a bit of retail therapy with our lass and her mom. Thank you girls. Xx

As an added part, when I got home I had a letter from the DVLA to say my licence was revoked from 11th September for 2 years! Shit I have not been driving for over 2 months based on medical advice, I could have steered us down the course in the bobsleigh up to this point if I had known! Why couldn’t they have waited till tomorrow Friday 13th to deliver that news?!

Rant over, appointments done for the day, onto the next one please.

Tiger tiger burning bright

I am giving a shout out to another warrior who has been randomly picked on by cancer. You may hae read, Angus McDonald, a Hull City player, has recently been diagnosed with early stages of bowel cancer.

I was born in Hull so there is a tiger always in my heart. Even though I have lived in Wolverhampton for a number of years amongst the Wolves, I am a big cat follower and always will be.

As someone said recently, cancer does not support a team, it attacks anyone, any age, both male and female. It is invasive and affects those who love us the most even more.

As warriors we go through the various treatments and potential side effects, but our loved ones have it worse, worrying about us whilst trying to maintain some sense of normality and routine.

Angus you may not have been born in Hull but playing for City makes you a Hullesian and that’s more than enough for me. Chin up mate, fight this, surround yourself with your loved ones and stay positive, you will soon be playing in the amber and black strip once again (but please, not the one which was labelled amongst the 10 worst strips ever, tiger fans will know which one that was!!)

I feel UNESCO missed an opportunity to make city’s old ground Boothferry Park a world heritage site as this was a pantheon to me watching gods like Chris Chilton and Ken Wagstaff weave there magic and the legend that is Deano (surname not required for tiger afficiendo followers) when he first started.

Then we moved to the KCOM yes still one of the wonders of the world in my eyes and a new era of gods i.e Nick (long boy made good) Barmby and the return of the legend again Deano ( yes i know hero worship), but what the hell. Angus I am putting you on the podium with those other heroes of mine because anyone going through our shit is a hero.

I will finish with this football plea, please Robin’s beat the Broncos and stay up. Yes I was born in Gypsyville but I am a red and white fan as I moved to the villages east of the city when I was a baby and my allegiance is Craven Park. Sorry Arlie bird fans but will just say 1980. Wembley and “the red red Robin goes bob bob bobbing along”

Still kicking

I know it has been a few days since I last posted and I apologise for the failure to keep you updated as to my current situation.

Im now on chemo/radiotherapy session number 8 and how am I feeling? Like the rest of the GB Bobsled Team (bored shitless I believe). I still have the restless nights and the lethargic days.

Mood swings, frigadoon I had a bad one on Saturday, toys out of the pram grand scale, because my wife said I was dressed inappropriate for the hospital. I did not see it that way, it was a real Kevin and Perry moment.

I shouted that I was not going, cancel my appointment, I raged. I’d had enough. Whilst I was shouting this I was changing my clothing as our lass was right, I looked a twonk! Haha.

Yes I went but hell I was a bloody tyrant and was totally irrational. I bloody hate it but once I get on my soapbox, it’s hard to step down. Maybe I should run the Brexit campaign, may not get the deal we want but the EU would be very wary of me, because I wouldn’t know what I want myself!

**Here’s what the scar is looking like now**

My appointments are changing on a daily basis so I only find out what time I need to attend he day before, but at least it keeps me on my toes.

Yesterday’s session was 08:30 so my wife and I went to cinema afterwards to celebrate her birthday to watch Toy Story 4 (we were the inly people in there with no bairns to justify watching it lol). We also went to the garden centre and had a KFC and had a really nice day together.

Today’s session is at 17:40 so I’ve had to come here an hour before to take my chemo drug. I’m currently sat in the waiting room as I write this.

So once more into the chamber and another notch mark on the countdown clock.

Treatment begins

So I started the radio/chemo treatment 2 days ago and don’t I feel any different ccurrentky but I know it’s stikkearly days with many more sessions to go.

My treatment started on Tuesday by receiving the wrong information as to where to go for my anti-sickness tablet. Turns out too many chefs not enough on the front line haha.

As soon as I arrived at the hospital for my appointment I as sent back to the other side!! (I’ll get my sponsorship form filled in for the walking).

When I found the right place I had the tablet then sat down for an hour to wait, jeez it was boring! Anyone else find the waiting tedious?

I was then given the chemo drug and had to wait another hour…another hour of my life I will not get back! It was then time to head to my radiotherapy for the zapping element, all told I was there for 4 hours. Do you like my radiotherapy mask? Haha.

I’ve been given anti-sickness tablets for the week so I’m now able to take them earlier so that when I arrive at the radiotherapy department, I can have my chemo drug straight away and only have to wait an hour.

The appointments are all afternoons (my choice due to transportation from family) but yesterday’s was 18:15 – that’s nearly an evening!

Today was bloods (yuck! Plus I hate plasters!) and then radiotherapy so appointment was 14:15 (woohoo). So I’ve just finished session number three and counting down. What have I learnt this week? There’s lots of waiting around for 6 minutes of lying on ones back whilst having your head locked down. Not my idea of fun! And because its sods law and I was due to sat my treatment on the Bank Holiday (department was closed) I have to go tomorrow on Saturday for another round! Let’s hope the waiting room isn’t as quiet as it was yesterday!

Those of you further down the line you have my praise and any insights and tips you can give me about the journey would be gratefully appreciated.

My nights are still crap with the waking up numerous times and the fatigue during the day. Does that change?!

I’m already looking forward to a day of respite on Sunday before continuing treatment on Monday.

Day out

Had a fantastic day out on Saturday at Lichfield Food Festival. Amazing sights, sounds and smells. I was salivating as soon as I got out of the car (and no I was not driving before you ask lol).

It was crowded and intoxicating but hey it was brilliant, the sun was shining and I loved it. My thoughts were on other things rather than my looming radio/chemo start date.

Yes, I’m still experiencing the lack of sleep during the night and then this catches up with me during the day. I am definitely 57 and not a bloody student Haha.

Will post about the start of my treatment tomorrow, I’m currently on Day 2 but I’m ok!

Treatment

Firstly I would like to thank those people who have communicated with me via Twitter and you are right, the questions asked defy logic and my patience time and time again.

This enemy within us effects not just the target host but the support network we have around us and it is ongoing, so every day my response is the same “I fecking hate it.”

I had my pre-assessment with the chemotherapy nurse the other day.

For the spectators amongst you I am a member of GB4 (glioblastoma level 4) and I like to think of this as being part of an elite downhill bobsled team.

The nurse went through some of the possible side effects of the treatment and I would like to voice why I think we are going to hell in a handbag.

1. Driver. If you are the same as me you cannot drive as your licence will have been suspended so we are going down a track with no-one behind the wheel. So that makes us all passengers.

2. Nausea and vomiting. Got my paper bag at the ready but cannot see the benefit of this as hurtling down and unable to deploy and so I am sorry for fellow passengers for the smell of sick in advance, should it happen.

3. Constipation. Got my spare underpants but may not need them with this, but stood at the top of the track I am losing traction as this hasnt kicked in yet. However I could use them as a wind assisted sail because I am producing as much methane as your local bovine, thus not helping global warming. (Guess my trip to the Amazon rainforest is off as I would only fan the flames).

4. Dementia and short term memory loss. Cant do brakeman as may forget to stop and have enough shit without fractures in A&E to add to.

5. I have been told I have to drink 3 to 4 litres of water per day, jeez just ask me to drain the Atlantic every 24 hours. Sounds like a Harry Pòtter horcrux challenge to me. J.K Rowling fans you know what scene I am talking about so come out from under the stairs.

I had this scenario in hospital where I was told to drink copious amounts of water and ended up with a stomach like a camels hump and the bladder of a gnat as I could not pee. I was offered a fashion accessory (a catheter) all the rage on the catwalks I hear. My wife does crochet so should you require a unique one-off matching ensemble I can ask her to make one rather than the carrier bag normally swinging off ones hip.

So our sled in going to be crowded but so cosy.

While I will not be setting the fastest time, and I know I am extremely unlikely to make a podium finish, 99.9% of the time I am a safe driver or at least I was until Brian came into my head. What I do know is I will make the finish line.

Come on, who obeys the speed limit all the time? Coming off a dual carriageway onto a single lane do you hit the brake immediately? Well bully for you if you do.

So as I stand at the top of the track I would like to thank all my fellow combatants and the spectators cheering me on at the finish line and please remember to wrap up warm as another potential side effect is chills and illness and I would hate for any of us to get down and be unable to be greeted and hugged at the finish line.

For those of you who have read through the whole of this saga I thank you for your patience.

Those of you in the sled along with me who started reading this then skimmed through and read the end your treatment can do this to you.

I was going to finish with a few words from my sponsors, the pharmaceutical companies, but hearing some of the possible side effects listed above and others that may require that second set of underpants I will reserve judgement until I am safely down the track.

I look forward to hearing your journeys down the course and cancer, as always, Futue te ipsum.

Still here

Apologies I have not been on here for a while, I have been using utilising local tradesmen to change our bedroom around. The power behind the throne (my wife) has decided that our loft conversion is a base camp too high (too many flights of stairs), so as our bairns have both now moved out, she has decided to convert our daughter’s old bedroom into our boudoir.

We are going French chateau chic, and we a bought a wrought iron fireplace which will be a focal point in the room.

I am well impressed with her ideas! She has also revamped our living room, dining room and created a snug for me to have quiet moments in.

In terms of my health, I have my meeting with the chemo team this afternoon to discuss the treatment. Will keep you posted on this.

Sleep wise, still in the hospital mode of waking around 3ish, but luckily going back to sleep and am trying to combat the fatigue during the day, but it’s so bloody hard if I lay my head back on the sofa, I just doze off. Anyone else finding this?

The mood swings I am fighting by thinking before uttering any words and I appear to be winning on that front but radio/chemo starts next week so that may change.

Overall, I’m doing okay and for the ghouls amongst you I apologise if you thought that ouija board you got 5 Christmases ago would be useful to communicate with brainman as you hadn’t heard from me for a while, however you are being far too premature haha.

Meeting with oncologist

Well, had my meeting yesterday with the oncologist and my radio/chemo treatment starts on 29th August.

I have a pre-assessment with the chemo team on 22nd August to discuss my treatment.

For those going through what I am going through I salute you and wish you all the best.

The question asked by people in my situation is, is my tumour methylated or non-methylated glioblastoma? Of course I am treading the non-methylated path. So my path of treatment is through the woods to grandma’s house and a meeting with the big bad wolf instead of the drive to the stately home with its formal gardens. Bloody typical.

Yes I did google about the non path, hands up who wouldn’t? And yes it is shit. I know knowledge is dangerous and Google is pure nitroglycerin.

I also had the briefing about the side effects of the radiotherapy and chemotherapy treatment from the oncologist – they really sell it to you dont they.

I had my Jason (Halloween) mask made up and fitted yesterday and a CT scan carried out.

So let’s roll on the good times and step forward on my crazy path.

Latest update

I have a CT scan for my heart booked for the middle of September and an appointment with the oncologist on 14 August at 2 separate hospitals.

My nights are still punctuated by waking at 3-3:30am. Are others going through this? Please let me know.

I am finding myself becoming irrational and angry whereas before I let things wash over me. Small niggly things become escalated in my mind to the point of obsession. My loving wife says the medication I am on causes these side effects. I am currently on, amongst others, Dexamethasone and Levetiracetam. Is anyone else experiencing these side effects?

I am trying to focus my mind on other things and not dwell on small insignificant matters that are not important.

Keep you posted on my next step.