Brain Man

Rest Period

Hello fellow GB downhillers. firstly I’d like to thank those of you who have contributed towards my amazing daughter’s birthday fundraiser which is raising money for a UK glioblastoma charity which specifically funds research into our shit cancer.

Please consider donating here: https://tinyurl.com/yx8u99zb the charity is called Headcase Cancer Trust and their website is headscase.org

After some reading, it appears only one per cent of money collected for cancer research in the UK is spent on brain cancer.

At the current rate of national spend, it could take 100 years for brain cancer to catch up with developments in other diseases and find a cure.

On a personal level I met my doctor last Monday and my platelets have risen to 50, however the doctor initially said they had gone down to 28, jeez scared the crap out of me. She finally gave me the good news though that they had in fact risen.

Said doctor then reduced my Dexamethasone from 2mg down to 1mg, however they do not do a 1mg tablet only 0.5mg so have to have two tablets, genius who thought of this!

The other downside is instead of my next meeting being on the 6th November it has now been put back until 20th November, giving me more time to rest. The upside is no bloods will be taken until then (back of the net).

Today I received a letter in the post telling me my scan will be on 19th November. We’re trying to park that date and not think about it until the day before.

So what new? Well I started decorating the spare bedroom. The walls have been painted and the floor is being laid on Saturday. The bed has arrived so I’ve got to put that together next. It looks like a warehouse here with items for the room arriving daily lol.

Overall I have been keeping myself active with the decorating but as soon as I sit down I turn into Rip Van Winkle and want to sleep.

I nearly forgot I have a meeting with my boss at work today to see how I am. I will keep you updated on this, I personally think they are fishing to see when I am returning to work. They have two hopes and Bob has left the building, lol.

Ongoing saga

Hi people. Had my bloods taken on thursday just gone, guess what? Yep they had dropped again, I am now reading 37 on my platelets, so have another vampire day tomorrow at 9 am UK time.

The doctor has said there is nothing to worry about at the moment,(easy for him to say he has not got a bloody needle stuck in his arm one a week, taking my blood,). So much for the month of R&R.

Away from the medical side, I have started painting the spare room, the tin says duck egg blue on it but looks more greyish green, nice though.

Have run out of paint so ordered another tin to finish off, hopefully arriving soon then after that I have to rub down the picture rail and gloss. Rembrandt eat your heart out, classing myself as a painter now ha ha.

Had my bloods taken yesterday they have risen by 4 to 41, oh the joy of hearing that news. Got to go again next monday for another blood test and yes have bruised from where it was taken.

Bit of an active day today, artist talent coming to the forefront with a paintbrush in hand did the picture rails and bedroom. The tin says cream gloss but looks more golden honey, will let you decide when the room is finished and will post photos. Having the flooring down next and the electrician arranged to fit the new chandelier and then the carpenter to fit new skirting boards.

Sounds like more skilled workmen then Noah had helping him build his ark.

Will update you on my progress in my next blog so to my fellow downhillers as Napoleon said in Russia (Moscow).

Latest news

Well Oxford is back on after having my bloods taken yesterday to check my platelets after they had dropped from 100 which is the normal to 77 last Thursday, then a subsequent blood test showed a further decrease to 43, luckily a further test revealed they had stabilized at 43, otherwise if they had dropped further the hospital said I may have possibly required a blood transfusion.

However, and there is always a bloody however, they have now said a check on my Alanine Aminotransferase readings on my liver are high, so no alcohol allowed, jeez as ex military that is just a kick in the teeth, they say it is due to the statin medicine, so rang my GP who immediately told me to come off the simvastatin, (always obey medical advice), and he emphasized no alcohol.

As I haven’t heard from the consultant at Queen Elizabeth hospital our lass rang them to find out if there was any news, and they hadn’t a clue.

We have emailed them to see if I still need to be on the steroids. No response yet.

Arrived in Oxford on Sunday and have loved this beautiful City. It has been just our lass and me. Time to chill out together (no disrespect to my bairns love you both). But enjoyed just being the two of us.

Yesterday was total biblical rainfall, it was a relentless deluge, but did not stop us mooching.

This is the Bodleian library (HP fans will know it as one of the settings for Hogwarts infirmary and in the Philosophers Stone, Harry and his invisibility cloak looks for clues in the Hogwarts library.

The middle picture is of the bridge of sighs (this is where the students walk over the bridge to take their exams, hence the moans of despair).

Upto date news

Hi fellow GB downhillers, I know I am supposed to be on my month of R&R, however I had a call from the radiotherapy department yesterday and the on-call doctor there said my platelets were low so need monitoring so could I arrange an appointment with my GP to have my bloods taken on a daily basis, (what the cluck).

So our lass rang the dr’s surgery and surprise surprise despite emphasising the urgent requirement was told there was nothing available.

We rang the hospital back and they agreed it was excessive to have it done on a daily basis so I have to go into hospital on Thursday to have them taken. No idea if this is weekly going forward or what. Update: urgent call this morning to say platelets are low, come in now for bloods and possible transfusion. So here I am, sat in the waiting room…waiting. Waited and been told my platelets are low so got to go to the hospital on friday for another blood test. ☹

On a different note the bed arrives today so the room will be ready for tonight, so I will post photo’s of the boudoir, lol.

My son and his girlfriend have landed in South Korea for their two week holiday, typical lad gave us no itinerary about their travel plans only that it would be a seven hour flight to Dubai and then a two hour stop over then a further seven hours to Seoul (oh yes and they were flying with Emirates from Birmingham). Correction here they did say they were spending 4 days in Seoul then heading south, but with Brian that was all the information I could process.

They departed Birmingham at 2.45pm on 8th October and he sent a message as he was boarding the plane. I calculated what time I thought he would arrive in Seoul and checked on flight tracker but couldn’t see anything. We tried messaging and whatsapp to see if he had landed as it was now 8.30am the following day and they are 8 hours ahead of us, and I thought they would be there by then.

Nothing. As parents you go into panic mode, worrying where the hell are they, he is bloody 33 years of age and has been to Thailand on his own before now, and his girlfriend works for a bespoke travel agency so knows about travelling, but you cannot help worrying can you? Then at about 9.30am our time we got a message from the prodigal son to say ‘just landed’ and that they were on their way to their hotel. Phewwwwweew!!!!!! Can’t rest that easy as I dont know the name of their accommodation lol, but he did message to say they were there so thank heavens for that.

Last day of first phase

Friday 5th Oct

Day 30 and appointment is 4pm this afternoon UK time, woowee!!!!!

They have said I can have my mask if I would like it, Hell yes!!!! Wearing it for Halloween, but declining to ring the bell (don’t want to tempt fate, after all this is the first phase).

After the scan I will tug the bell rope either with a peal of bells that will make a camponlogist wet their kegs (sorry northern for pee their pants) due to rejoicing or a death knell lament as the news may be more sombre.

There are many reasons for living

And one has just entered my head

If you can’t celebrate when alive

How the hell do you do it when dead?

———————————————————

Saturday 6th Oct

Last session finished in the first phase of treatment and I have taken my mask home (see below) and I walked past the bell without ringing it with a bit of decorum, well as much as you can carrying a luminous green Jason Halloween mask lol

The bible says suffer little children to come unto me. If anyone had carved Jesus wearing the mask I defy anyone young or old not to be traumatised after seeing it.

It is now rest and relaxation time for the next month so I will be chilling.m and I will post my photographs from Oxford when I return.

Almost forgot to say, our bedroom is nearly finished awaiting the bed to arrive on Tuesday so I will post the finished design, (our lass has got good taste I’ve got to admit, well she did marry me ha ha).

Fellow GB downhillers it has been a pleasure as always to cast a little light into my world and I wish you all the greatest love and support as always my brave companion warriors.

Day 29

Morning/evening/night (delete as appropriate for your time zone) fellow GB sledders.

I have 2 sessions left and today is Thursday so that means Vampire day (yes bloods to be taken), God I hate this bit, roll on my month off.

How am I feeling? I have been having a bit of pain on the left-hand side of my head over the last week, not constant but every now and again. The medical staff say the treatment is more intensive over this last week so will be inflamed and causing the irritation.

I have paid for our trip to Oxford, so looking forward to that, views from the hotel are over the river running through Oxford. Quintessentially English and historic I understand. I will take photographs and post when I get back.

I am looking forward to the last one tomorrow.

This GIF is how I am feeling, as everyone who has reached that milestone can testify too. But I’m not ringing that bloody bell.

As this first phase is coming to an end, our lass has said I should do some poetry, this is my attempt so don’t think I will be taking it up as a hobby.

Cancer comes in many forms

Mine is my head

It causes me sleepless nights

When I’m trying to nod off in bed

One week to go

Five weeks down and one week to go for my radio/chemo treatment. It seems to have gone by quickly so far.

Appointment slots have been up and down like a fiddlers elbow, with some early and I mean early (6.30 in a morning and the opposite end of the spectrum with the same time on an evening) and only being told the day before makes it harder to schedule.

Overall how have I been, a mixture of tired days, active days and in between which is frustrating.

The bedroom is nearly finished just waiting for the bed, (the previous one we ordered and had delivered, we discovered the headboard was too big to get up the stairs. Who the hell measures the stairwell when ordering a bed!!!!!

Nights are still interrupted but not to the degree it was before so a bonus.

My radio/chemo treatment finishes this Friday, so have a month off for recuperation so me and our lass have decided to go away for a weekend mid way through the rest period to explore Oxford. Looking forward to it and not having to go to the hospital every day.

GB downhillers I salute you all where ever you are on the course and will meet you at the bottom because we are all winners.

Week 5

I hope everyone had a nice weekend, mine was perfect as my appointment on the Friday for my radio/chemo treatment was 12.30 leaving us time to just do what we wanted, so my wife and I went into town as they have a French style bar/restaurant called ‘The Parisian’ (tres chic). We sat there drinking Kir Royale cocktails and eating brunch. It was the perfect start to the weekend.

My wife enjoying her cocktail in the bar.

Saturday me and some of my inner circle we went to Belbroughton Scarecrow Festival (the village put scarecrows in their gardens and visitors pay to walk around viewing them. It was rammed!!! But so quintessentially English, the weather was glorious but the waiting for food and drink was so mind numbingly long.

I took a few photographs of some of the scarecrows as we were walking along.

Sunday was just a case of chilling out, the perfect weekend before the start of another week of treatment.

I’d like to shout out to one of my fellow warriors and her husband from across the pond. I hope you had a lovely time in the mountains in South Carolina aafter finishing your first stage of chemo and radiotherapy and if the atmospheric conditions were right I hope you I did an expletive yodel for me!

Living in the West Midlands we are limited in the backdrop for the acoustics and it is frowned upon to use churches, libraries and stately homes for profanity rants, even if you use the lame excuse ‘I have tourette’s’ lol.

Day 20

Well nearly 4 weeks down and 2 to go. Thursday I had my bloods done again, (I know, it comes round so quickly every Thursday).

So same nurse as last time and I explained to her I do not like plasters, so what does she try and do? Put a plaster on it!! When I reminded her of our conversation last week she remembered and said ‘I’ll put some tape over it.’ Eh No! Please, no flaming sticky substances on my arms after taking bloods, I will apply pressure to stem the flow myself.

After bloods I went for the radiotherapy treatment and after taking the chemo tablets I sat around for an hour. The nurse eventually came out with a gown and says ‘get changed.’ I replied ‘what, for my head?’ He looked non plussed to say the least. He asks me to follow him so I did. Then he says ‘no, go through to the changing room and I will meet you on the other side of the door.’ Talk about confusing.

I have been told I sound like a British comedian called Jonny Vegas, (I was born first so technically he sounds like me. Is there any copyright for impersonation of my voice? Anyway for non-UK citizens, here’s a breakdown of my Northern terminology for what words I use to describe relatives and friends:

1) My wife is our lass

2) My children (son and daughter) are the bairns

3) My mother in law is the outlaw (respect to her love her to bits).

4) My siblings I.e sister, brother and sister in laws are sis, bro, bruv.

5) My friends are mate, mucka and oppo.

It is a fallacy we all speak like the Queen on this sceptered isle. I like to think that Her Majesty only speaks like that on the TV and in Windsor to fit in with the twin set and pearl society. I hear in Buckingham Palace she speaks Cockney like all Londoners and has a lovely Lincolnshire brogue when at Sandringham and rumour has it Glaswegian when at Balmoral.

She has been known to pass off as coming from Penzance when ordering an oggie visiting Charles down in Cornwall. Lol, I believe it keeps her real with her subjects.

On a different train of thought, I’ve been thinking, who would like to invite to a dinner party? You plus 7 others from any point in history discussing anything and everything.

My choices are our lass (without whom I would have thrown my cards in ages ago thank you Ali). My muse and inspiration always.

Kate Bush, our lass loves her music so would be interested to know where she gets her musical influence from.

Owney Madden (English Godfather of the Mafia) ran the Cotton Club in the early part of the 20 century. Fascinating man.

Leonardo Da Vinci (genius) enough said.

Niccolo Machiavelli (mover and shaker of Renaissance politics also born same day as me but slightly before my time.

Sandra Bullock (actress) I like her films, she appears to be down to earth so it would be nice to gain understanding of the film industry from the inside.

Sandie Toksvig (comedian, intelligentsia and mercurial), questions everything or so it appears so it would be nice to chat with her.

Please let me know your party guests, it would be interesting to read some of them and your reasons why.

I did want to include my inner support network but that would have ended up with more than the last supper and we know how that finished.

Anyway, yesterday I went to a Scarecrow Festival so I’ll be sure to write about this on my next blog post.

Hope you’re having a good weekend fellow warriors and support crew.

Day 18

Another session of treatment today, been given stupid ‘o’clock (6:10pm). I suppose it’s my own fault for requesting afternoon appointments, but when does that time equate to an afternoon?

My hair has started to fall out where the radiotherapy is targeting so I have shaved the more hirsute side and gone a bit Peaky Blinders, I know vanity at my age but what the hell.

My head bloody itches but I’ve been told it’s the treatment and been given some cream to put on it to soothe it, but it stinks and leaves an oily slick on my scalp. Yuck! 🤮

Somebody recently asked does cussing help? Oh it bloody does and if it upsets strangers I dont give a flying fox, the only ones who matter are those you love and support you totally and I have those in my inner circle. So to my inner circle I apologise in advance if you believe I develop tourette’s every now and then. To anyone offended by bad language, futue te ipsum.

I still get the restless nights and am experiencing weight gain – 9lbs in 3 months jeez I feel lardy, but I’ve been told it’s the meds and once I’m off them the weight will go. How come Weight Watchers and Slimming World dont know about this?!

Apart from the above I appear to have got away with the potential side effects relatively unscathed. Tempting fate now I know.

To my fellow warriors and your support network I once more salute you all and wish you luck in your onward journey.