Brain Man

Happy Star Wars Day

No I haven’t taken leave of my senses. Today is 4th of May, hence May the 4th be with you. I know lame but what the heck.

Last few weeks have been up and down like a roller coaster in terms of Brian and the NHS. I had my bloods taken on 20th of last month prior to resuming my chemotherapy treatment two days later. Straight after bloods I had a face to face appointment with oncologist. Bloods 0930 and consultant 1100. I thought slight delay but what the heck just sit around. I got to see my consultant at 1230 as he was running behind schedule. Normal questions about how I was doing, you know the drill. I then enquired if he had the results of my blood tests carried out 3 hours earlier. His words “they are above the requirement for me to commence my chemo two days later”. Away I go happy as Larry.

Following day went out with family members and on the way back I received a phone 📱 call from the hospital to say “the consultant was wrong in his comments”. In fact all my levels were low and I needed a blood transfusion, appears Dr Genius had read my previous results. He did ring me later to apologise. So my chemo appointment was cancelled until I had my blood transfusion.

I then received a phone from a nurse on 22nd April saying an appointment had been scheduled for Saturday 30th for my blood transfusion. I explained this was impossible for me to attend as I was going away with my family for the Bank Holiday weekend as I would be 60. I know my youthful looks belay my condition. The nurses response was “do you how dangerous this is as my levels were very low”. They were 77 I have been down to 18 before so really not that low in my thought process.

Our lass took over the call and explained in grammatical Anglo Saxon why I would not be attending the Saturday appointment and if it was that bad why havent they brought it forward. My transfusion was then arranged for Monday 25th April (2 units and there for 8.5 hours), however prior to that I had to have a cross match blood test carried out. This was carried out on 23rd. Both missions carried out successfully.

I am then thinking my chemo can now commence but NO. My consultant has now said I need an MRI first. A letter arrived confirming date but again it was unacceptable as it was Bank Holiday Monday just gone and we were travelling back and unless I was in a Delorean (Back to the Future car) there was no way I could have made the time. One more call to hospital to explain and was informed another appointment will be arranged. So far I have heard nothing. After the MRI I will still need another blood test to check if able to proceed to the golden prize.

Had a brilliant time away though and the bonus was I was able to drink on my birthday as on chemo its total abstinence. Sorry if I have bored you with my story, just remember it’s only every blue moon you have to contend with reading it.

Latest update

Good morning/afternoon/evening depending where on this planet you are reading this. I hope everyone is OK.

It was awful to hear of the passing of Tom Parker from the band The Wanted with our shit condition. He was far too young (33) to be taken and his drive to try and make people more aware of glioblastoma was outstanding. He was very eloquent and vocal in his comments about the lack of funding for research into our cancer and tried to lobby MPs to take action. He will be the lead vocal in the heavenly choir. Thoughts to your family and friends Tom!

I’ve seen there is a petition doing the rounds to try get optune available here in the UK for brain cancer patients.

A little bit of info about optune: Optune treatment uses a novel “tumour treatment” electromagnetic field to treat cancer. It has been shown to be effective in brain tumours and is widely available in the US and Germany. This treatment is currently not available from the NHS.

Sign the petition here https://petition.parliament.uk/petitions/610898

On a personal note. I had my 4th covid jab last week, knocked me about a bit for 24 hours. I now have a telephone consultation on 4th April with my oncology nurse and a Reiki treatment in the middle of the month. My next MRI is scheduled for either the end of April or end of May confirmed date to be decided by my consultant. I currently feel OK but as we know things change rapidly with this foreign invader. At the moment I feel so good I am going to see Simple Minds in concert shortly. It will not mean anything to those born after the 1980’s. Check out their New Gold Dream album. Absolutely fantastic.

I hope everyone is taking care and protecting themselves and your loved ones.

Latest news

I have just had a routine call call from my oncology nurse to catch up (you know the “how are you feeling questions”). I explained I was having my bloods taken today and if OK will start my chemo on Friday. I then enquired if she had the results of my last MRI as I hadn’t been told what they were, after checking ✔ she said there was no difference from my September MRI scan. So basically it was stable once more. Yippee the best news. 👌

I have had three postponements for chemo due to my blood readings being up and down recently but fingers crossed 🤞🏾 the light is green. I will keep you all updated. Going to the hospital to have my bloods taken now.

I have just got back from the medical facility and have had my bloods extracted. Awaiting the results possibly tomorrow, as urgent must mean take your time in medical terminology. Even though as I said my chemo is supposed to commence on Friday so knowing the results would be a bonus if going ahead or not. I will keep you posted.

Saga

Hi fellow downhillers. How am I feeling I hear you say. Well if you haven’t posed the question I will tell you anyway. What a week.

Last Monday I had my bloods taken once again, prior to my chemo yesterday. Unfortunately due to my levels chemo was postponed. I was told I required a blood transfusion and our lass had to push me in a wheelchair to the other side of the hospital as I was suffering from lack of breath. I was given (2 units) and 4 hours later felt great. I had another blood appointment yesterday and was told chemo would commence.

I am then thinking great I can start my chemo, how foolish am I. The hospital rang before my chemo appointment to say despite my levels risen they are not high enough, they are having another conversation to decide what next and will let me know today.

Prior to the transfusion I was struggling with my breathing as I believe I previously said. Now I feel like a duracell bunny . I think the blood transfusions (6 units) over the years to me, equates to the number of blood tests I have undergone over the years where they have debited.

I hope you are all well and keeping safe. On another note the Tessa Jowell Foundation has been making people aware of our condition. This is Brain Tumour Awareness Month. Spread the word please. I know people reading my blog are aware of the devastation it bring to families and friends.

More news went to the hospital for another blood test and still not high enough levels for chemo. So bloods next Wednesday and if OK then chemo commences on the following Friday. Fingers crossed 🤞🏾. Keep you posted 📫

Still unable to have Chemo

Hi everyone. More news on the will he, won’t he chemo front. The headline gives it away. Had my bloods taken last Friday, pantomime there. Went to the chemo unit to collect my blood form to be told it wasn’t ready and they would have to print one off. Our lass was asked to wait in the main reception and I was asked to sit down and wait. Frustrated our lass went to the main reception and they printed it off there, 30 seconds later I was given the exact same form from the chemo unit.

Bloods extracted returned home. Yesterday call from the hospital to say unfortunately although my platelets and HB had risen they were still too low for chemotherapy treatment. Platelets are now 75 and my HB is up 3 to middle 50’s. I feel like a human stock exchange. Next stage is more bloods this week and hopefully chemo next week. Fingers crossed 🤞

On a different vein we had an earthquake last night. 3.2 on the ritcher scale. I know those who have encountered them before will say piffle, seen jelly wobble harder, so that’s nothing you need a 6 plus for a proper tremor, I slept through it so you are probably right.

Apart from that and the out of breath I feel OK. Everyone stay safe.

Minor Set Back

Good morning fellow downhillers. As you maybe aware if you have been following my trials and tribulations I had my chemo a few weeks ago and was told to rest, which I duly did as per medical instructions.

Fast forward to last Friday and I had my bloods taken again prior to my next session of chemotherapy commencing. Our lass and me requested the blood results to be fast tracked as I was due to recommencing my chemo yesterday. If you are speed reading and good at solving Boogle will have already worked out the response. “The people who carry out the testing were off and don’t work weekends”.

Last Monday came and went with no communication from the hospital in regards to bloods. So yesterday our lass rang them up at 10 am to be told someone would ring us back. My appointment was booked for 1400 UK time, (work out where you are in the world and add or subtract accordingly). We received a call an hour later to be told (da da da), trying to build up suspense that my bloods were low, 58 on platelets, HB was in 50’s too, so treatment was postponed. Result I have another blood test on this coming Friday and chemo rescheduled for next Tuesday. For those of you going through this crap you will know the targets for recommense of treatment is minimum 100. Mind you had lower in the past.

I knew it was low as I was struggling with shortage of breath, (and that was just opening a bag of crisps), not really it was going up stairs or uphill. Downhill doddle.

Had a bit of a scare last night, I lost the power of speech for approx an hour, I couldn’t enunciate words even simple simple ones. My train of thought totally derailed, I thought shoot another seizure luckily it reset itself. I was running words through my head trying to say them. Peter Piper picked a peck of pickled pepper was beyond me, I sounded like I was wearing my grandads teeth, which is a bit gruesome as he passed away over 50 years ago. This, then, there and those were OK but I didn’t see that coming.

So in summary I am now OK, got my reflexology tomorrow, bloods Friday and hopefully chemo on Tuesday. So everyone please take care.

Still breathing

Good morning/afternoon or evening depending on when you are reading this and where in the world 🌎 you are.

I have completed my most recent course of chemotherapy, complete with adverse effects and am now just recuperating. For recuperating read doing nowt, (northern for doing nothing).

I had my MRI last Thursday at Cannock hospital, no results yet. Then two hours later I had my complimentary therapy, courtesy of macmillan, reiki this time at Wolverhampton hospital. Yes I did nod off. I defy anyone not to. 💤

All in all I feel OK, occasional headaches and stabbing pains but nothing untoward. I know I shouldn’t jinx anything.

My daughter went to a conference meeting recently and this bloke sounded like me she said, so she explained to him that I was from Hull and how his accent sounded like mine. His response “oh no your dad is from East Yorkshire and I am from Huddersfield in West Yorkshire”, and then he walked off. Cheeky wassock, Huddersfield is just a suburb of Leeds, and West Yorkshire was only created to stop Lancashire invading. I say how I feel and I make no excuses for it. East Yorkshire plus Taurean makes me who I am.

If any Huddersfield or West Yorkshire people are upset by my comments. Please reply to my complaints department at ‘my dad’s bigger than yours’.com

To my fellow downhillers I wish you all the best and keep fighting this insidious thing.

Happy 2022

I hope you all had a lovely Christmas and a happy new year under current covid rules.

Mine was jolly, our lasses was more hectic as we had family round Christmas eve and Christmas day and she did all the cooking. The gastronomic repást was excellent. For Christmas I received books (which I love), other associated presents which I treasure from family and friends and the most brilliant football shirt ever made.

I also had my bloods taken on new years eve, prior to recommencing my chemotherapy, which I had yesterday. Needle in my right forearm as they could not find a vein in the back of my hand. Does anyone else hate the sentence ” just a sharp scratch?” My next bloods are middle of February and chemo shortly after that. Before that though I have my second reflexology session middle of this month through macmillan. It is heaven on earth. Thank you Harminder for your angel fingers.

On a sour note I purchased a smart watch from an advertised company on Instagram. Xwatchprro.com. Be on the lookout for them they are scammers they took my money and confirmed the order number and apart from one response on 2nd December when they said they had problems with suppliers and despite me emailing them on numerous occasions they have not the courtesy to reply. The home page up until yesterday was still advising delivery before Xmas. (Unless they mean Christmas Island only deliveries), and explained our customer service advisor will respond within 24 hours, by what means snail post!!! In fact the home page was in French and the contact number was in America. Talk about United Nations and calamity.

So i am sat here in my E17 top relaxing as per medical instructions. I hope you are all chilling and looking to the year ahead. Stay safe and look after yourselves fellow downhillers.

Up’s and downs’s

Hello everyone. Last week was like being in a non rehearsed panto. Basically my chemo is on hold for time being. We didn’t make the Christmas Market in Beverley and I had two visits to A&E.

I had a blood transfusion and then I was notified I needed another set of bloods taken as my iron count was high. All duly carried out. However a week last Sunday I developed a sore throat and painful mouth ulcers so I had trouble eating. A visit to the hospital was arranged. Luckily the emergency department was quiet so the waiting time was not that long. I was sent home with antibiotics and mouth wash.

Fast forward to Friday past 5 days later and I was once more in A&E with a high temperature, this time reception was jam packed with individuals, coughing and spluttering. I was told I was a priority case 45 minutes later still sat amongst the masses before my name was called. I was taken to a cubicle with no bed but food on the floor. Our lass wasn’t allowed in but was on the Sunday occasion so she went home and I kept her updated.

Eventually a bed was brought in and I was able to lie down. I then had a canulla inserted in my right forearm this time for antibiotics and fluids then a second stab in the back of my right hand for more bloods. Bloods were taken and my temperature had slightly decreased. Luckily after a few hours I was told I could go home with some antibiotics and to monitor as my temperature had fallen to a reasonable level doctor came and said he had read my notes and then asked what was happening. Really!!!

An oncology nurse then came in and said she had spoken to my consultant and he had decided I could go home as initially A&E wanted to keep me in for a few days to monitor. The doctor said he would give me one tablet that evening but I would need to come into the hospital pharmacy the next day with the prescription he had wrote as it was now closed.

Canulla was removed and cotton wool was taped over. Stood in the corridor awaiting my drug when looked down and my hand was dripping blood, prescription covered in my blood. I took my coat off and my arm was bleeding profusely, the nurse said oh dear not enough pressure had been applied, hence the blood no shit sherlock. All in all was there for 6.5 hours. The Dr in A&E said he noticed I was on a lot of drugs and didn’t need some of them in his professional medical opinion. He would contact my GP to discuss this and to contact me. Lo and behold my doctor rang this morning and her first words “how can I help you”. Our lass took over and explained and my Dr said “Dr in A&E obviously hasn’t read my medical history”. Er has she read his notes????? Summary is I am supposed to see my consultant in hospital on Wednesday but would rather have a phone consultation.

Plus side is I have reflexology through macmillan and wow is it good. Had one session and next one is Thursday. If you get the chance offered take it. My levels have risen but not to the required ones but they were happy with that.

As you can see never a dull day. So becareful and look after yourselves.

Latest news

Apologies for not posting for a while fellow downhillers. Been busy recently planning for Christmas and beyond hopefully. All presents purchased so tick that one off.

How am I feeling I hear you ask. Well I feel good in myself, however news is mixed. I completed my second round of chemotherapy 3 weeks respite and commenced exercising again.

I had a blood test middle of last week thinking brilliant start my next session of chemo next Tuesday. However that lasted all of 2 hours as hospital rang shortly after having my bloods taken to say my white cells were low and I needed to have 5 days of self injections 💉 to boost them up. Er no chance am I doing that so our lass has been doing it in my abdomen9. Same time every day, I have had 2 so far. Bloods are to be taken again on Monday and I have a meeting with my oncology nurse straight after. Chemo has been postponed for 2 weeks, which means it now starts 15th December and is a 10 day session which for all you budding Einstein’s out there have already deduced means I am on it christmas day. Ho ho no.

I am speaking to my nurse tomorrow because I was looking forwards to Beverley Christmas Market but now this new covid has arrived unsure if we can go. I have to self isolate. One step forward two back it seems to me.

It snowed yesterday and as a tribute to E17 I wore my “stay another day” hoodie. For those of you not old enough to know them. Google them and let me know your reaction.

I hope everyone is OK. Please wrap up warm and take care.