Blog 2

3rd August 2014

Saturday and I was in a bad way but due to the recent crap I have to take with my head. On Friday my good Doctor Cope came and spoke to us and told me to take drugs. Great, I hoped the damn things, Dexamethasone (2mg), seems to be OK? It seems to be getting slightly better over the Saturday so hope fully it will be better.

So, let me move back with a few days.....

Jim and Alison managed to get to our house at lunch time, Thursday 31st July, as the people that were staying with them didn't do an early breakfast. This was OK as we managed to get to the Hunting Lodge at Cadleigh Lane (between Ivybridge and Lee Mill). Lunch was good and we had a great chat with them as well as getting measurements that I will need in the future. Jim and Alison were great and it was a great day for me.

Follwing day......Oooppss! Yes, this was what I spoke to Doctor Cope and sorted it out...nearly!

This sort of helped a bit better on Sat and today, Sunday 3rd Aug, I feel slightly better. I'm hoping the weird feeling I had since Friday will be better as I'm looking forward to seeing out Cousin, Nick Carter, and 3 Swiss visitors on Thursday this week.

 

12th August 2014

Hahaha, a long 9 day gap to bring up.

The illness, from having the Dexamethasone (2mg) and looking forward to have 400mgs of Temozolomide (400mg) from Saturday next (16th Aug) for 5 days, is a bit crap as far as I think it is! After the last lot of chemotherapy - started on the 19th Aug '14 for 5 days at 300mgs per day - this managed to boot my dexamethasone up to 4mgs then 6mgs and now 8mgs!

Sometimes I feel OK, sometimes I feel knackered. I think we may have a few answers on Friday!

 

17th August 2014

OK, news from the Medical Review. I have to take 400mgs of Chemotherapy for 5 days (Sat 16th to Weds 20th) and reduce the Steroids to 6mg for 4 days and then 4mg from then on. It's going to be crap I reckon.

 

21st September 2014

Big update as I've ignored my Blog due to feeling bad!

After the Medical Review where Dr Kelly put me on 400mgs of Chemo drug, my life seemed to get worse and worse and worse. This gave us a bad Aug/Sept and involved us in buying me a Medical Scooter as my ability to walk seemed to have vanished!

So, the 4mph scooter will allow me to run around Ivybridge and take slightly longer "rides" so I can enjoy other time instead of sitting at home.

We bough new tyres and a waterproof cover as the unit has to live outside of the house whether on charge or not. 20 miles is it's distance it should cover. I'm pleased with the unit (£240) as it is in good nick and comes apart enough to throw in the boot of the car.

So, what else....the chemo drug is horrible but I have to take it for 5 days. Then I don't take it for 23 days until the next Medical Review says what to do.The last one (12th Sept) said that the Chemo Drug was too strong for me at 400mgs so they dropped it to 300mgs for the last 5 day hit (13th to 17th). This is slightly better for me, but within the last day I discovered that at 5am I feel much fitter, I can run up and down the stairs with zero problem and I think straight. This is because the Dexamthasone has been dropped to 350mgs per day but at 5am in the morning it's a bit run out. To this end I will be taking it at 10pm tonight and then 6pm tomorrow night so that it wears itself out more so when I'm alseep. It will be interested to see if it works and doesn't make me want to sleep all day?

What's going to happen???? I don't know but I do know that on Monday 29th Sept we will be going away from the 29th to 3rd Oct and stay in the Plough Pub in Bicester. This will allow us to see family and friends quite easily with the downside that Dibble - Dibble Motors and a great motorcyclist - will be in Hospital in Banbury due to the accident he was involved in in Austria. I really hope he is OK and wins a good Insurance win.

22nd September 2014

A great day. Taking the poxy steroid drug last night meant that I had a poor night's sleep but a great morning and early afternoon. I am very pleased with the different time for the drug and it means that I can actually move more strongly. YES! Tired this evening but that's acceptable and allows me to plan doing more things. Tomorrow we should be able to get, from GT Motorcycles, the new mudguards for the Valkyrie and I've ordered the Dinitrol which will seal underneath the mudguards. This stuff is what 98% of the car/van builders use on their new models. It's the best!

 

10th November 2014

Oh Ha Ha Ha! I haven't been writing on the Blog because nothing much has happened. So, now is the time to annoy/bore you....

So, the two meetings with Oncology, in Derriford Hospital, was 13:10 on Friday 10th Oct and 11:30 7th Nov. No change and keep taking the Chemotherapy. This is washing me out. I have lost an awful lot of power and find sitting down and hoping I can walk up the stairs more easily.....that hasn't worked as I am weaker.

Very little has been done but we have improved the front room and the bathroom at home. The front room has had a set of 3 nesting tables so we all have somewhere, other than the floor, to put a drink. Plus Brenda has had a lovely, wooden, 2 drawer, filing cabin which is on wheels between her seat and the sofa. This has allowed her to put all the knitting stuff in there and her own gear in the top drawer.

We purchased an LED, twin lights, reading light to go next to where Brenda used to sit. This uses virtually zero electricity and is very bright. If Brenda needs to see what she is doing it will burn her eyes out! Hahaha.

The 400 day clock I bought, cheaply, is on a corner shelf and I've nearly got it running to correct speed. 2 mins fast today but I will adjust it in a minute and it'll be better.

I've had the fence that I need to replace, quoted for by Travis Perkins. Cheaper than anyone else! They'll win as I told them a couple of weeks will pass before I need the parts. I need to get Esteban to give me a hand.

So that's it....little energy whilst in the 5th month of chemotherapy so just repairing punctured wheels seems to be the main thing to do for me at the moment.

 

16th November 2014

Nothing much happening but some crap where it would be good if I could sue a couple of companies! First off....O2 the crap mobile phone company. Before we even received the new SiM cards, they e-mailed and started to bill us. I refused to start paying until we'd logged in with their SiM cards and as they didn't arrive for nearly a week...I left them all sealed and posted them back. The fight has carried on for the £2.47 (Brenda and I presume) but T-Mobile stuck Brenda and I onto EE. The deal is fabulous for Brenda and me....500mins, unlimited texts plus 250mg for the internet (which we do not use on our phones) for £7.49, per person, per month! Fabulous, no Cashback to recover every 2 months.

My cousin, Nick, came to our house for 3 days and it was a great time to have him with us. When he left on Sat I was off for an MRi Scan where the Contrast Injection fires up my head for the MRi. However, last time (July) the injection fired me up so high that I had an amazing, fired up Saturday. Unfortunately it did the exact opposite for the following Sunday and I nearly slept all day. This time, because of the extra tiredness that has hit me in the 5th Chemo Month, I have not had a fired up feeling!

The most interesting things to do today was some cleaning of the Yamaha Fazer 1000 which I'm still trying to sell, and fitting of a new bulb in the rear OS light on the Renault Megane 2 Estate we drive and finally, I ordered a new set of verifocal glasses as I have given up with the poor made, frameless pair of glasses. The reason why they are poor is that Boots did a prescription which was wrong. I had the glasses made by www.spex4less.com who built them to suit Boots.....no good for me. I had Specsavers in Plymstock to test my eyes, shortly after Boots, at NO cost to me, and I had Spex4less to re-hash the glasses. The problem was not good. The close look was good, the far look was good, but the middle look, in the two lenses, was out of focus with each other! I have given up and, very kindly, Specsavers are discounting a pair of glasses that I am pleased with. They are the same as the glasses I had before the frameless ones.

So, tomorrow the Renault gets washed (MOT on Tuesday) along with the Mobility Scooter so I can pop up to John Babb's to get the battery off the motorbike and charge it up.

Wow...isn't life fun! NOT when it rains all day!

5th December 2014

Interesting News.....Unfortunately the problem in my head is getting not just bigger but it has doubled! They are giving me a new Chemotherapy starting a week on Monday and is lasted for several 6 week sections. The overall "LIFE" may be 6 to 12 months. Please remember.....12 months of life for me...at maximum!

Sorry, that's all I'm writing at the moment.