Brain Man

MRI

Good morning fellow downhillers. Well I had my MRI scan yesterday and it went rather smoothly, well by standards it did, they listened to me when I said left arm please, even though one of the staff was looking at the back of my right hand, (perhaps his idea of mental torture). Anyway it was my left arm and the needle ⁷went in first time no rooting around to locate the vein. 50 minutes in the scanner then back out into the normal world.

Just got my bloods to look forward to at my doctors surgery next Thursday, oh deep joy. NOT. I did ask if they could keep in the canulla in to prevent having another butcher trying to locate a vein, answer was we wish but sadly no.

I have just got to wait until the end of July to speak to my consultant over the phone to get the update. Can see many restless nights coming up. I know I should not think about it but who wouldn’t. I am not that laissez-faire. More uptight if truth to be told.

I hope everyone is OK and keeping safe. Me and our lass are arranging short weekend breaks with family members. Got Bristol, Bath and Portsmouth booked and are looking at Brighton too, give us something to look forward to, and hopefully get my driving license back in September as been nearly 2 years since I had to hand it in, (medical not criminal reasons I assure you). I leave you with this thought how deep would the oceans really be if there were no sponges in it.

Another day in paradise

Good morning fellow downhillers. I know it’s been a while time since you have heard from me. I hope is everyone is keeping well?

We have all had our second dose of vaccines so are tickety boo. Restrictions are slowly lifting so normality appears to be reappearing slowly. Yippee

I have my MRI 2nd week in June, but then was advised need fasting blood test doing also, however cannot go blood tests until week after MRI. My consultant appointment is not until the end week of July. Not a happy bunny.

Consultant wants to move me from Dexamethasone to another steroid, so he said he will write to my doctor who will contact me. Having heard nothing for weeks rang the surgery to be told need to see an endocrinologist first but no timescale on that. So still on Dexamethasone.

Apart from that feel OK. Looking forward to hopefully getting my driving licence in September (nearly 2 years since voluntarily surrendering it). How is everyone else doing? Please let me know.

Vaccine 2

Hello everyone. I have just had my 2and vaccine and am now sat in the doctors surgery for 15 minutes awaiting to see if I had any form of reaction. Only reaction is I am bored.

Public houses and restaurants are now open in the second phase of easing lockdown yippee!!!! Shops are now open so you are now able to purchase all the tat you wished you had been able to purchase during the lockdown and will never use.

Garden is coming on so chuffed with that, new lights have been fitted so on a night looks like a cross between Las Vegas and a Blackpool tram.

How am I? Well I fell over twice in the past week, once when I missed the kerb and fell on the path (pavement/sidewalk if you are European or American). I managed to regain my feet with a stuntman aplomb. 2nd time was alcohol induced (3) whiskies and I was trying to remove my footwear and through into the hallway from the porch. I couldnt stop laughing, one member of my family was not amused.

There was an article from a university in England talking about GBM4 research, so I contacted them with help from my daughter. I explained i had the condition and would like to be considered for the trial. There response was not carrying out the clinical trial as not enough research done. Why publish it then if you are not doing it.

On that rant I will sign off and I hope everyone is doing ok, and we will soon be out and about.

NHS departments to each other

Good morning from the island with the highest vaccine rate in Europe. I am no longer requiring shielding 🙂 so can now go out, but only supervised. Lol.

I received a message from my local NHS trust 3 days ago advising me that they would be in touch to arrange my next telephone consultation or I could do it on line after registering. I thought save the environment and go on line, so duely did. A message was returned confirming my next appointment. Lo and behold a letter arrived yesterday confirming the appointment. Unbelievable.

On a different note the view from our daybed is awesome. Almost Mediterranean.

I spent yesterday just chilling in the sunshine on the daybed. Today colder so indoors and weather is saying could have even lower temperatures. Its Spring so step up sun. We are just coming out of lockdown slowly so the northern hemisphere needs some warmth bringing to us.

I hope you are all well and still abiding by the rules. If not tut tut!!! no wonder we are ill.

Consultation

Hi everyone. I hope you are all ok? Yesterday I had my phone conversation with my consultant, he said Brian is stable. 😃😃😃. He asked how long I had been on Dexamethasone and i said that is nearly 2 years since I was put on it and the consultant advised he would like to swap me over to hydrocortisone. I agreed as he is the professional. He would contact my GP by letter to let him know. I also will be scheduled for a call with a endocrinologist to discuss this.

How am I feeling I hear you ask? Either that or voices in my head. I am feeling ok. I was asked if I wanted my MRI scans every 3 months as per now or every 6 months, I said leave them as they are, I couldnt handle it I had them every 6 months and I was advised the tumour had returned weeks before. The original tumour was 2 months old when discovered. On a different subject I have fitted a swing on our pergola

It’s for our lass to relive her childhood lol.

We are slowly working our way up the garden, we have started a clover meadow and scattered wild meadow grass. It isn’t Capability Brown I confess but we love how it is progressing.we have also purchased an outdoor daybed, (photo to follow later).

I have been told I no longer need to isolate from 1st April, unsure if April fools joke or not. I dont know what I will do in this green and pleasant land come the day. Any suggestions?

I hope everyone has obeyed the lockdown rules and is enjoying each day as it comes.

MRI scan

Hello fellow downhillers. I hope you are all keeping well. As it states above I had my MRI scan today at New Cross Hospital I experienced problems with the nurse inserting the canulla.

First attempt was in the back of my right hand, that came as a bloody shock as I specified it would be easier to insert the needle in my left arm. As you can guess my suggestion was not auctioned and inserting the needle failed.

Second attempt was in my right arm and guess what that failed also. During these two disasters I went grey and felt hot the nurse admitted I did not look well, so this resulted in another nurse entering who said they would start the scan and try and take it whilst I was lying down in the scanner.

I ended up having a drink of water and having to remain where I was for a while as I was pespiring. They even offered me a chair to the scanner, no chance. I walked nay marched round the corner

Luckily once the scan started they were able to insert the canulla in my left arm (didnt I say that to the nurse when I was asked which arm to I want stabbing).

On a different note both my bairns and our lass have had their vaccines so I am pleased about that. My daughter and myself had the Pfizer vaccine and my son and my wife have had the astra zenica one. Our lass and son said she felt like they had a really bad 24 hour cold the day following their vaccine. My daughter and myself felt like we had a dead arm the next day but no cold symptoms.

So please have the vaccine when offered keep safe and carry on regardless.

And so it goes

Good afternoon fellow downhillers. Thank you to those who suggested tv box sets I should watch during this lockdown, very much appreciated. I will try and catch up with as many as possible.

Someone commented that my scar looked really good compared to how it was. It must have been a winner of the Great British Sewing Bee (medical section) or B for brain. Heaven knows how they got my head under the sewing machine to stitch the seams together. For those who do not know Sewing Bee is a programme on terrestrial British television.

I am feeling good, I have just received my vaccine date 30th January at 2.50 pm. Has any one in our situation received the vaccine yet?

Life goes on a endless repeat loop. I hope everyone is ok. Keep safe people.

No New News on Vaccine

Good morning/evening or whatever time it is in your area. Another day of tedium for everyone I guess. I have not yet received any notification of my vaccine jab to date. My daughter, one of my sister’s in law and mother in law have had their jabs.

I did get a letter from the hospital today advising me I have an MRI scan booked for 1 March (deep joy), with my telephone consultation on 16th March. At least it’s a journey outside.

I hope everyone is well and taking care. My daughter helped me set up an Instagram account, but am struggling to understand it, any help gratefully appreciated folks, just search out my name, or reply on this site.

Has anyone got any recommendations for tv series that will have me engrossed, have seen the bridge and Downtown Abbey and COBR. I know eclectic, but all were worth watching.

Please keep me updated on how you are doing.

NHS

Good morning fellow downhillers. I hope you are all keeping safe. Sorry if ranting but yesterday was a Trump day. Our lass received a message from NHSgov saying I should ring this dedicated phone number, which incidentally was only available between 9am and 12 mid day UK time, on Tuesday and Wednesday only to book book my vaccine jab appointment.

We received the message at just after 11am. So I immediately rang it and it was engaged.

I tried 183 times on redial but it was still constantly engaged. The voicemail answer machine message said it was only available to call on Monday and Tuesday between those set hours. How come our lass did not receive the message till nearly midway through Tuesday then.

The message received also advised it was Tuesday and Wednesday to book appointment, there was no mention of Monday. Further comments stated it was actually contactable during the Tuesday afternoon between 3pm and 6pm to arrange a vaccine appointment.

Armed with this further information I started ringing again yesterday afternoon. I started ringing at 2pm and after 10 minutes am told I am in a queue but they are excessively busy, so I hold on.

I eventually get through at just after 3pm and explained about the message received. The person on the other end of the line doesn’t even ask for my name he just says are you over 70, to which I reply NO. He then says I cannot have it. I explained everything and his supervisor came and explained the rules changed just after lunch yesterday and so I could not receive the vaccine jab at this time.

I have just tried ringing the line again this morning (Wednesday) but it is now closed, (so much for the dates). To say this is a keystone cops episode is complimenting it.

I hope no one else is going through this form of torture in trying to get their vaccine appointment. Keep me posted please how you are all feeling.

Happy New Year

Well its 2021 and a new year, yet it feels and looks like 2020 is still trundling along. I hope you are all safe and well.

I have got a phone call with my consultant in the middle of March. I have also booked my bloods for this Thursday. Deep joy. Cannot wait.

How was everyone’s Christmas day? We had a quiet one but it was enjoyable. I got presents from Santa that I wanted lol. I am learning sign language swearing, it’s different I grant you but enjoyable as I can have a rude mouth without actually saying the words, just glad I dont have stammer hands.

I also received 6 bottles of whiskey, I am drinking in moderation. I also got books, (love reading), one about my home town team Hull City and another about the Somme. I know bit eclectic.

I have put my journey on cancer chat forum. Has anyone else posted on there? It covers loads of different cancers with people asking and replying to various topics. Check it out if you wish.

We are awaiting the Prime Minister to tell us what measures the country is going to take as covid cases are rising throughout the UK.

Everybody take care and stay safe, these are unprecedented times, and we are vulnerable, but covid wont defeat us. We are the downhillers and we are strong.