Brain Man

Continued chemo

Good day everyone. I had my bloods taken Monday (I know so unusual having that done). Yesterday I met my nurse who checked my latest platelets readings. It was exactly the same 153, as my previous readings the week before so I was able to recommence my chemo treatment last night. I am on reduced dosage 180mg.

Health wise I have had a cold last week but am ok now, but may have passed it on to our lass, she is coughing badly. Poor girl.

I explained to the nurse I get bored and she said take up a hobby, problem is I dont know what, any ideas people? Nurse said she could see me doing photography or drawing, with all due respect I don’t think so. I cannot draw for toffee and photography does not float my boat.

I prefer something little more frenetic, but know I cannot do anything too strenuous. So as I said any ideas gratefully accepted. I thought about origami or yoga.

Does anything suffer from the boredom aspect? And how do you get round it.

I’m going to see my sister in laws chickens tomorrow, genuinely looking forward to it. She has three ex battery hens, who still lay eggs, they now they have a garden to run around in. Well done to her for re-homing them.

My next MRI is March and no more bloods until the middle of March so bonus for me. Please let me know any ideas for hobbies.

Ongoing treatment

Hi people

Had my bloods taken yesterday and platelets are now at 153 (highest score to date). The nurse said my recent MRI is stable no change so all in all on upside.

I start my chemo treatment next Wednesday is all goes well, I have another blood test on either Monday or Tuesday and it depends on these results.

Our lass has now got a cold, she feels I passed it on to her. Talk about hitting the ill when they are down.

Has anyone else had this where you dont want to do anything but you know you have to, dilemma. I want to go down my gym but get told to rest how the hell are you supposed to do both at once. Medical staff say I should relax but also I need to keep moving. What is this some form of chairobics????

If anyone has mobility ideas please send them to me. The idea of vegetating is doing my fruit in.

Please keep me posted how you are all doing, it’s good to hear how others are dealing with this invasive crap.

February

Hi fellow downhillers, hope you are all well. I have had a cough for past couple of days but apart from that have felt ok, so fingers crossed it stays like that.

I have a hospital appointment on either Monday or Tuesday (my choice nurse has told me) for my bloods, then have a meeting with my nurse on Wednesday, deep joy.

I will let you know my blood results and hopefully they are above 100 so I can continue my chemo treatment.

My doctor has signed me off for a further 6 months, bit monotonous as our lass not letting me do anything but rest and I know how boring that can be.

We are going to the theatre to see Joseph at the end of the month, so looking forward to that.

I wish you all the best and let’s kick C’s arse.

Update

Morning/afternoon/evening depending on what time you are reading this my fellow downhillers.

I had my hospital appointment yesterday for a catch up to see how I was feeling with my nurse and she said would I like to know the results of my last MRI scan (I know it is that scary time), well she said they were the same as the last one in November so no change and therefore had remained stable.

She then said due to my platelets being up and down she wanted me to have another blood test test there and then. So trooped off to the vampire bank, and more good news my platelets had risen to 126. 😀 chuffed to bits with that.

All in all pretty good news. I hope everyone is ok. Steve we received your Van Gogh card, love it.

My hair is not growing on the left hand side of my head (tumour removal side), so may have to compensate by growing right hand side to extra length and having a comb over.

I will keep you all updated as how things are going.

2020

Sorry haven’t posted since the end of last year been hectic as you can imagine.

News wise, I haven’t started my next course of chemo yet as my platelets are low so having blood tests on a weekly basis. In fact I have another blood test tomorrow.

Had my MRI scan yesterday, still waiting for my last scan in November, all I have been told is that appears ok.

Feel better not having any treatment, have even started doing gym work to keep myself fit. I know as soon as I start chemo it will knock me ten left.

Went to the theatre last Saturday to see play called Ghost Stories (victorian melodrama), it was atmospheric with dimmed lights and people screaming lol. Got Joseph in February so looking forward to that too.

I hope everyone is ok and is positive and upbeat as we can be about our shit status.

Happy festive greetings

I hope everyone had a fantastic christmas with lots of rest and not to much trauma in between.

Apologies for not writing earlier it’s been manic with blood tests (in fact at hospital now to have bloods taken), more bruising I bet.

We had a fantastic time in York cold but amazing 5 Christmas markets. We visited the Yorvik viking museum, amazing sights, sounds and smells. We also went the train museum, and the minster and finally the castle museum with a full Victorian street.

Had bloods taken again today, first arm could not get bloods out, so used other arm, ouch!!!!!! I have another appointment on 13 January for MRI.

Lucky for me as my platelets were still slightly low my chemo didnt start on 23 December as originally plotted but was put back to 30 December.

My hair has grown back on the none operation side, but the other side is still bald lol.

We have got multiple events coming up bought for us as Christmas presents. We have Joseph and his Amazing Technicolor Coat, Simple Minds (80’s band) in concert, the Woman in Black, a Victorian horror story and paraphysic Sally. Will let you know my reviews on them.

I wish you all a wonderful 2020 and carrying on fighting fellow my warriors

Unbelievable

You could not write this fellow warriors.

A letter arrived from the QE hospital on Monday. My angiogram was done in September if you remember, and yet only now are they advising of an appointment for 9th December (the day before we go to York)…which only came about as our lass has been calling and leaving messages for the past month!!

They wrote, and I quote: “I gather you have been in contact about the results of your recent CT heart scan. It shows diffuse but mainly mild furring up of your coronary arteries. There is an area in the mid part of one your vessels which might be causing some restriction to blood flow, which requires further investigation. We are arranging for you to be seen in one of the cardiology outpatient departments.

“For the moment you are on effective treatment with your Simvastatin and Ramipril.”

Erm…My GP took me off the statin over a month ago as there was a problem with my liver so clearly records haven’t been updated. The hospital has also suggested I start taking aspirin.

Our lass then decided to contact our GP to explain the situation and mentioned I had recently had a blood test to check my platelet levels and still hadn’t received the results, hence why I hadn’t started the next round of chemo yet. My platelets need to increase before starting on a stronger dose. The doctor checked the system and said there was no trace of my latest blood test results and as a result I couldnt begin to take aspirin as it can thin the blood and be dangerous with low platelet levels. Because of this she also said no to taking the statin. Had we not mentioned this I may have began taking the aspirin and faced serious consequences later down the line!

The GP requested I had another blood test on wednesday before meeting with my consultant that morning. What a to do. Seems like there’s been a lot of miscommunication and lack of communication between hospitals and GP’s…not helpful when you’ve got a lot on your plate.

So, that morning I had my meeting with a consultant but not my usual one as she is retiring. I started my chemo treatment the next day and the consultant is going to write to the QE to say they are not putting me on the statin.

My chemo dosage has been doubled so 5 days on and 3 weeks off with sickness tablets twice a day.

I have been feeling sleepy the last couple of days and out of sorts and cannot put my finger on why. My knees have started trembling after I get up after sitting down for a period of time, but overall apart from that I feel ok.

I will keep you all updated.

Meeting with doctor

Yesterday was my meeting with my doctor regarding my MRI scan the day before. I took our lass, my son and mother in law as hospital buddies.

I had to have my bloods taken first to check my platelets. Both arms are bruised once more as the nurse struggled to get a vein. Luckily she achieved it.

A hour and a half later still waiting for the doctor when a nurse called me to have my bloods taken, I explained I had already had them taken which was confirmed by two other nurses, but it appeared they had misplaced the results, hence the delay in seeing the doctor.

The doctor said without the bloods she was working a bit in the dark, however looking at the scan it looked very good as she could see no trace of any tumour. Yesssss.

My steroid dosage has been decreased to 0.5mg and another appointment has been arranged for next wednesday for the next stage. Hopefully results of blood tests will show my platelets has risen. If all goes well Ì will be able to start my chemotherapy treatment.

I am looking at relaxing in York, cannot wait to view the city and immerse myself in history and Christmas culture.

MRI Scan

I had my meeting with my boss, it was short and sweet but dont you get pissed off when people say you look really well lol.

Yesterday was my MRI scan and yes I was nervous about it, didnt help when I had a canulla inserted for the dye check and it left a bruise, and then found need my bloods taking to check my platelets, can it get any better. Postponed that till today.

Today is my appointment with the doctor to get the results of yesterday’s scan, (why cant they tell you straight away), as you can imagine I experienced a bit of a restless night.

Health wise I have had active days and inactive days. Last couple of days appetite has diminished slightly but that may due to scanxiety.

The spare bedroom is nearly finished, only got the shelves to fit in the armoire. It is looking amazing thanks to our lasses vision.

Our lass hasnt been able to wear a wedding ring for a while now as her old one was a bit damaged, so we journeyed to the jewellers so she can choose one, (we have been married 35 years in December).

She tried on 3 rings and left me to make the decision on which one was best as she liked them all, me the brain tumour kid, luckily our daughter was with us so me and her agreed on one whilst our lass went and sat down so she isn’t aware which one we have chosen. Trying to decide when to give it to her, either our anniversary (8th December) or Christmas day.

I hope everyone is doing ok and taking it easy.

Apologies for delay in blogging

Sorry for the delay in not writing sooner, it has been a case of manic times decorating the guest room followed by pure fatigue the following day.

As you read in my previous blog my daughter was raising money for a small charity researching our medical condition and she raised over £800 amazing so thank you to all those who gave.

It was my daughter’s birthday last week so we took her shopping and whilst there her mom saw a ring in a jeweller’s she loved, (her last wedding ring she is now unable to get on) so I bought it. Our lass said initially she would love it on Christmas day, but as our 35th wedding anniversary is the first week in December would prefer it then.

We are going to York for the Christmas markets, and museums and is famous for becoming a viking settlement in 866 and they ruled it for 200 years. It also has the minster (a very posh church) which is amazing. I will post photo’s when I return.

Health wise no further bruising, possibly as had no bloods taken. Trying not to think of the scan coming up. Our lass has been trying to find out the results of my angiogram, unsuccessfully until yesterday as no one returned her calls or answered her calls.

She managed to speak to one of the oncology team who said there were notes in my record but he didn’t understand them, but if it was serious they would have contacted us before now. Amazing!!!!!!

I will close now and post my results of my scan a week today and yes I am experiencing scanxiety.