Brain Man

November and still going

Hi everyone. I hope everyone is feeling 👍. Is it me or is it bloody cold, (unless you are reading this in the South Pacific or somewhere else as hot). In which case I am jealous.

I have just finished my second course of chemo, injection followed by tablets for 10 days, no drinking of any form of alcohol allowed. Ex sailor here so hurt like hades. Side effect of the chemo, lack of bowel movement. Felt like Santa’s sack on Christmas Eve. Senna, prune juice, and loads of water have eventually started flushing the obstacle away. I know graphic. Lol. Also caused a rash being treated with cream. Oh deep joy.

Me and our lass have booked to go to Beverley Christmas Fair in December. For those of you who do “where”? It’s a town just north of my beloved Hull, the town is walled with a minster, imagine a miniature York. It has this this market on for one day only, bit like Brigadoon, film with Gene Kelly, no clans or music though. Really looking forward to being in God’s country.

I have even started buying Christmas presents, ex boy scout so always prepared. Mind you didn’t last in that organisation long, I threw the flag over a hedge on the way back from church to go down to the river with my mates. I know irresponsible behaviour especially as I was the scout master NOT. I never made scout master I had badges though earned, not purchased off Amazon. I was a sixer, or was that in conkers if anyone can remember them.

Currently I am feeling OK, i have my covid booster tomorrow, then phone consultation with my nurse later on in the month and then hopefully chemo again. Won’t know if working on slowing the tumour down until next MRI which isn’t scheduled yet, so just plodding on.

My family raised over £1500 with their fundraising half marathon for the Brain Tumour Charity, absolutely brilliant 👏

Sorry if your have abandoned reading this as too long winded. This is the end of this saga. I wish you all the best wishes and hopefully you will hear from me soon.

Carry on Regardless

Hi fellow downhillers. I hope you are all well. I want to start on a positive note and send out my massive appreciation to our my family and friends. They completed a half marathon yesterday for the Brain Tumour Charity. Amazing achievement 👏 you are all super heroes in my eyes. I also want to thank the back room staff (further members of the family) for their organisational skills on providing sustenance at the completion of the walk. A huge thank you to all the people who have sponsored them on this endeavour. Without people contributing the research into this cancer 🧠 could not continue. 💥💥

Last Wednesday my daughter and I had a video chat with Jude from the Brain Tumour Charity who had read my daughters article in the paper. It was very insightful (if talking about cancer can be classed as that). To hear other people’s stories was an inspiration to focus on the positives each day.

In regards to my treatment, well different story. I had further bloods taken last Monday and was advised I required another unit of blood on Thursday, (sorry if repeating myself). This one was at New Cross hospital. I was told to be at the blood transfusion unit at 1250, I wasn’t informed the unit had moved so after wheezing up three flights of stairs I had to descend and go to the department in another area of the hospital.

Our lass wasn’t allowed in with us and I was instructed to wait in the waiting room (corridor more appropriate) for an hour, whilst sitting through two chorus of “Happy Birthday”, appears first one hadn’t recorded. Finally moving onto the unit I was informed I would not be having the blood transfusion that day as my blood wasn’t in the fridge, (probably removed to provide space for the birthday cake).

The nurse then said I needed a blood cross match despite the fact I had this taken on the previous Monday. Explained my chemo was supposed to start this Tuesday, nurse said we will rearrange before that. I said I had all my bloods taken already. Whilst all this banter was going on I had the drip fitted into my arm. If I wasn’t going to have the transfusion why connect the drip.

She then rang the blood bank to be told the blood was in but a form was required to release it. This was subsequently done but I had already been sat there for nearly 2 hours. Transfusion started at 3pm for 2.5 hours duration according to the ward sister. Three times the alarm on my machine went off, on first two occasions no one attended until I pressed the emergency button, on the third occasion I reset it myself.

Finally at 5.40pm the transfusion was finished, then came the fun part. The canulla may as well been glued to my arm. I had the canulla plaster, micropore tape and a chest drain patch over the top. Removing it all and the epidermis beneath was painful to say the least. This being done the nurse left me with just my bedside light on and the rest of the unit in darkness. I then thought is that it, so jumped off the bed and walked out. Honestly I did not use a Carry On script to write that.

How am I feeling now, invigorating and part piebald 😆. I have my bloods again tomorrow and hopefully, hopefully chemo starts Tuesday. I hope I have whittled away some time for you reading this and take care.

Update

Morning fellow downhillers. Today was supposed to be the start of my chemotherapy treatment unfortunately the hospital rang to say the results of my blood test showed my HB and neutrophils are slightly low so they cannot proceed.

As you are aware I had my bloods last Monday and also a blood match for my last transfusion. Ouch !!! The nurse was like digging for gold with a blunt antler. She had to get a colleague to do it.

I went to Cannock hospital on the following day to have my blood transfusion, (one unit), 4 hours. Problems again accessing my veins, I sat there with a hot water bottle against my wrists until the found one to access. I am O positive group. Never knew that.

Wednesday was a phone consultation with my nurse. It was confirmed my chemo was starting today. As I have already noted this has been cancelled. I now have another blood test and blood match on Tuesday (do blood groups change)? I now have a further blood transfusion on Thursday (another one unit). The hospital rang again another blood test on the following Monday and then hopefully I came start my second course of treatment. On a plus side my cortisol levels are good so I can continue with my hydrocortisone.

I am not worrying about it, going to sit back, feet up and indulge in some vino and find a good/mediocre film to watch. Have a great weekend and I will let you know how this human pincushion gets on next week.

Return of the Crap

Hi fellow downhills. I hope everyone is well. Latest update, I had my MRI last Friday and my bloods were taken on the Monday just gone and I saw my consultant yesterday. The news is the tumour has spread. My chemo hasn’t worked so they are preparing a new course of treatment of chemotherapy through one intravenous dose and then oral tablets over a 10 day period then 3 weeks off before a further blood test.

However prior to that I need a blood transfusion as my platelets and HB have both decreased. The hospital have confirmed blood test next Monday at local hospital and following day blood transfusion at Cannock hospital. I am getting breathless just going up only slight gradient. If this new chemotherapy treatment does not work I have been told there are no further alternatives and have been given a timescale of 6 to 18 months. Not something anybody wants to hear.

On a positive note me and one of my brother in laws went to Bristol on a Only Fools and Horses tour. It was brilliant. We visited the street where the Batman and Robin scene was filmed and the outside of Delboy and Rodders flat (as shown in photo below).

I have a family outing to Portsmouth the end of October and am looking forward to that.

We are still sorting out my pensions feels like they are dragging their feet. I hope everyone else is OK and remaining positive.

Ongoing issues

Confused.com

2 weeks ago I was clear in my mind what was going on regarding my ongoing treatment. Now I am befuddled. The consultant has taken me off dexamethazone and put me on hydrocortisone, one tablet in the morning and half a tablet on an evening. I have been on it for about a week. He had mentioned he was letting my doctor know a while ago but no timescale, so was a bit of a kick when he rang to say they were changing my meds over. I had not heard from the doctor so put it to back of head. I had to go to the hospital chemist to collect.

I was also supposed to have my MRI yesterday but on the 9th September I was contacted by the hospital 🏥 to be informed the scan was going to be rescheduled due to staffing shortages and it would be at a Nuffield hospital instead, no estimate of when only that I would receive a letter confirming the new appointment date. So far no news.

The consultant then rang 2 days ago to enquire how I was getting on with the new medication 💊 and to also say I needed a blood test which is booked for next Monday. Deep joy. I have a telephone consultation with my nurse on 22nd of this month and a phone consultation with my consultant on 29th of this month also. Quite a busy month.

On the plus side our lass, myself and my sister in law and her husband are going to Bristol at the end of this month to do the Only Fools and Horses tour. Lovely Jubilee. If you haven’t seen it, I recommend you do.

I would like to thank our lasses family as they are doing a half marathon in aid of the brain tumour charity for further research. One of my sister in laws is organising it. Check it out if you can please. http://Justgiving.com/fundraising/christina-kelly9

I hope everyone is OK and not letting the negativity in the world getting them down. Life is a roller coaster you just have to ride it, as they say.

Exciting and busy week

Out and about

I know you’re asking where is my vlog. I thought I would type this one instead of bleeding your earholes with my northern twang.

I had a couple of tattoos last Saturday, I got Niccolo machiavelli signature on my side, some will ask why? He was born the same day as me, not the same year of course. Nearly 500 years between us. I read his books “the Prince and The Art of War”, both brilliant. I also got the French phrase ” avec toi je suis moi” on my right bicep.

So Monday me and our lass went to Birmingham on the train for a bit of mooching (skegging if reading this North of Doncaster), or if South of this metropolis walking round the shops.

It was lovely to be out, I did wear my mask in the shops, my choice to do so. It was ram packed with people. Purchase wise bought a few books and that was it. I know the last of big spenders. On the train back home, someone decided to purge the contents of the stomach by being sick 🤮.

My nurse rang me yesterday to ask how I was feeling, I feel OK in myself so fingers crossed my platelets be alright as I have my bloods booked in for 23rd of this month and phone consultation with my consultant on the following Wednesday. If all OK start second round of chemotherapy treatment.

We have booked to go to Bath later on this month so looking forward to that. Will take some photos 📷 whilst there.

I hope everyone is being careful and safe.