06 W/C Monday 13th July
Monday, yet another blood test in preparation for the Immunotherapy tomorrow, I have lost count of the amount of blood tests I have had this year. Talking of blood, we are testing twice a day for my blood sugars, I have virtually cut sugar out of my diet so the readings now range between 5 to 8, good progress then.
Tuesday is Immunotherapy day so at the hospital for 07:00, I have no idea what to expect, this is all so new to me. After a bit of prep and discussions about what to expect I am ready to go at 08.30 after some vein issues. Fours hours, and a few bag changes later, we are complete with no dramas but I have been forewarned of the many side effects to possibly expect.
The next few days are normal, no major side effects to speak of but slowly getting more tired by the day. On Thursday the following week I had to contact the Hospital as I got to the point that I was so tired I barely wanted to get up in the mornings also I now have an incredibly itchy rash on my torso. They asked me to come in for a check up and blood tests. No issues and got some meds but I am impressed as to how thorough they were. Any issues with Immunotherapy patients and they call you straight in to check you over.
Next date is Tuesday 28th July and I'm off to Bristol Royal Infirmary for proposed Gamma Knife treatment. As I had to be at the hospital for 07.00 on Tuesday we decided to book a Bristol hotel for two nights which was a great plan until we got to the town centre one-way system which we went around about four times looking for the Hotel, we made it eventually!
Reported at 07.00 on Tuesday morning, MRI scan at 08.00 then waited for the results.
Not good news though. They discovered even more tumours in the MRI, thirty five in all, way too many for Gamma Knife to deal with. I have no idea how thirty five can fit in there! So the treatment did not go ahead and they referred me back to the Oncology team in Southampton. I was discharged by 09:00, instead we spent a lovely summers day wandering around Bristol. On Wednesday we went to see the Clifton Suspension Bridge (very impressive) then back home. I guess this was a wasted journey but we did have a very nice few days in the West Country.
After my next Immunotherapy session I really must keep a better daily log to track how I feel and any issues.
Things that I am noticing are, very light headed and dizzy, getting more and more unsure on my feet, I am very unsteady and I use a walking stick when we go out. My walking is also getting very slow. I have also noticed my left eye playing up again and the perception issues are back and causing minor problems. Working carefully in the gym it is obvious to me that I have lost strength and stamina as well, more work required.
My next date is a VC with the Consultant on August 6th followed by my 2nd dose of Immunotherapy the day after.
Blood sugars are still low, we take readings every morning and they are between 5 and 7. Sugar in my diet is virtually a thing of the past, no chocolate, cakes or biscuits...My GP will be so happy with me.
Met with the Consultant on the 6th. The advice is to let the Immunotherapy do its work and we will assess with a MRI before cycle 3 in three weeks time. I'll trust his judgement, these guys are the experts.
It would be fair to say though that I'm rather scared at present, a few dark days creep in, It is very hard to process thirty five brain tumours and what the future holds. On the brightside no one is telling me that this is serious and I only have a short time left, all the information is positive and Immunotherapy is regarded as a positive solution. I wont let the dark days get me down.
I really could do with some good, positive news.You do get tired of all consultants and doctors looking at you with big sad eyes, I'm looking forward the seeing them all smile at me for a change. Hopefully next time, you never know eh.
Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up
Current default position: Working out in the Gym everyday
Current Favourite CD: Rolling Stones - Goats Head Soup
Another favourite album from 1973, I've gone all retro since finding out I have cancer, looking back..
From the days when I was an apprentice earning £16 a week, I could afford an album once a month. This was played to death for ages and yes, I still know every lick, chord change and lyric. The Stones at the absolute top of their game!