04 W/C Sunday 14th June 2020
Almost there then, last day before the Operation. I will be doing nothing today, rest and listen to music and probably drink too much tea.
The only thing that is impacting me is still sleep, I can't sleep and consequently I am so tired. I went to bed at 22.30 last night, I had tried to stay awake as late as possible but gave up, I knew it was way too early. So I woke at 01.40 and have been awake since, I'll have a doze later. Night thoughts are weird when you can't sleep but want to. Last night I was listing what I cannot do at the moment and want to ensure that I can in the future as part of my recovery. Not sure about the first one though, looks like I won't be doing this again.
Give Blood- I notified them that I have cancer and was told that I can no longer give blood. I am O-neg so I was always in demand for blood donations and I am so disappointed that I can no longer do this. I was somewhere in the region of 35+ pints given and nothing you can do makes you feel more useful that giving blood. Especially now that they text you when they use yours.
Drive- Temporary I hope. I was told that I will be unable to drive until I am clear and in remission for two years, is that really the case?
Cycle on public roads- advised not to as a matter of safety to myself and others. I get this and not my main priority but one of my favourite hobbies. In reality I do not have the stamina for this at present anyway.
Gym- We have a small Gym in a summer house in our Garden, I use it every day but again stamina is now an issue. 20 minutes easy workouts is all I can manage now and not looking to push it until after the op. I do need to lose weight though, I have just hit 16 stone (old school) for the first time in my life. My median weight for most of my adult life was 14 stone so there's my target! The steroids are not helping with this and I feel permanently hungry, I must be eating twice my own body weight each day!
Concentrate- I tried to carry on working after the diagnosis, I only work three days a week now. I found that I struggle to concentrate and process. I needed to have regular breaks just to keep going, in the end I decided I was not contributing effectively so stopped working. In fairness I needed a break and time to prepare for the operation so probably the best thing to do. Now, I am not sure that I will go back, I guess this will be determined for me over the coming weeks anyway so may not be my choice.
Play Golf- Another hobby and unfortunately my left side issues with vision and perception make it impossible to even hit the ball. I'll be back hopefully. Playing golf in the New Forest is special and I miss it. If my cancer is confirmed as Melanoma I may need to rethink this totally as walking around in blazing sunshine usually in polo shirts and shorts with melanoma are not sensible partners. We'll see.
Appointment for the hospital is 07.30 in the morning so I'll call it a day for now, be back next Wednesday 17th June for an update
It's Thursday I'm late on the update. Tuesday and Wednesday just passed me by.
Back to Monday then, if I could have planned a successful day it would not have been any better than it was. Hospital for 07.30, prep and ready, I'm first so 08.30 for op, wake in recovery around 11.30, feeling OK but takes an age to come round properly. I wake with the Boomtown Rats "Looking after No.1" playing in my head, not heard that in years, what's it doing here now? It takes time and the staff are supportive and gentle. I get offered lunch, cheese omelette and cup of tea, perfect as I am starving now. I'm told that I have a MRI booked for 15.30 so just rest. There's good music on the radio in the recovery room so no rush. MRI goes well, but no headphones as they will irritate the scar on my head but I find the whole experience strangely calming as I must be getting used to them and it doesn't seem to take as long either. Taken back to recovery again. My Surgeon drops by later to confirm that the MRI is good, no bleeding or reactions from the op and the tumour appears to have been fully removed. So back to my ward then. Get fed again, Mac and cheese - perfect. Then phone calls and messages for almost the rest of the night. The highlight of course was with the girls. I worked it out that it was 26 days since the awful call when we told them the bad news, three pairs of eyes trying to process the horrible message I struggled to get over. The contrast was fantastic, eyes light up this time and a call full of laughter and fun. so much better this time around. Loads of messages to reply to and no chance of sleep so read and listened to music, the night flew by.
Full procedure was - IGS right parietal craniotomy for resection of metastasis
Discharged on Tuesday afternoon so back home and sleepy. Yesterday's energy has gone so a lazy evening but I still cannot do a full nights sleep, manage about three hours maximum, get up for a drink then back again for another snooze if possible.
Wednesday is pretty much the same, snooze then eat then snooze. I'm back on different steroids, I know they are helping with the inflammation and healing process but they do seem to make me feel sick and wobbly. Just take it easy, no rush.
I impress myself on Wednesday evening as I have been struggling to concentrate on anything especially watching the television. We started watching the 'Salisbury Poisonings' on BBC iPlayer and managed to watch the whole three episodes in one sitting. It was very good but surprised me that I made it through in one evening.
Father's day is always a treat with my three ladies, this year they really do lay it on. I get a box of rather expensive chocolate brownies spelling DADDY, they are enormous and will take ages to munch through (little did I know what the next fork in the road had in store for me). My Father's Day favourite, Amazon Vouchers and a very 'posh' lunchbox arrives as well which will also take a few days to munch through. What an exciting day that was but I fear that my top weight of 16 stone may well be behind me now (no pun intended). We spent the late afternoon in the company of Reg Meuross performing a two hour live concert on Zoom, the day just kept getting better.
So now a week after the operation, Monday 22 June and how do I feel? I feel OK. Sleep is still the same but I catnap throughout the day, lay on the settee and put on a CD and doze off, it's easy during the day just the night I have trouble with. It gets light around 03.45ish so the night doesn't seem too long in midsummer I do hope I get over this soon then! Oddly my body is having a reaction to something and I appear to be breaking out with Thrush. This is my sixth week on Steroids so guessing it's all a bit mixed up now, I will be finished with them on Thursday so only a few more days. However due to my blood sugar levels there is a concern around diabetes, I have to see the nurse at my local GP and I've been asked to monitor my blood sugar for the evening.
I feel really good since the op. My head is sore along the scar line and I'm still having the dizzy spells with walking into things but these are small steps along the recovery route I guess. The emotional side has dried up at last, I'll assume that the new experience with the scary op to come can scramble anyones emotions but the reality of the op is not too bad at all. I had a sinus op four years ago which was far more painful, intrusive and took ages to get over, this one seemed like a breeze in comparison.
We seem to have been shielding forever now but in reality I make it three weeks today (seems so much longer), I'm craving to go out....anywhere just out somewhere. My days are filled with little excitements. Today I received a late Father's Day card and a Get Well Soon card, they made my morning, two cards made my morning. The weather is so nice and we have a heatwave this week, I want to go to Lymington Market on Saturday, just to walk around, maybe even buy something, I cannot remember the last time I bought something that wasn't on-line. Only one more week to go, I can do this I know, it's funny what you crave for when you can't have it.
We use our Gym every morning, first thing before breakfast, perfect. My Consultant advised NOT to overdo exercise during the healing process (light walking), fully understand and I need to keep in check as I can train hard. Normally I cycle whenever I can, lots of walking, golf and kayaking. Now I do 20 minutes resistance free cycling just to keep my legs turning over, somedays including today that blows me out for the morning but I enjoy it everyday and hopefully I can start working on my 16 stone shortly ( I need to).
Our next milestone is a video meeting with the Neuro Oncology Consultant to discuss the findings from the op along with the biopsy results which will plan my route forward. 15:10 on 23rd June.
In the back of my mind I kept thinking "I've got cancer with two brain tumours, have I got away with this far too easily?" You know what, I was right all along. I went into this meeting feeling confident and expecting a firm plan through for radiotherapy on the remaining tumour and any residual.
So firstly it was confirmed from the biopsy that it is Melanoma so I have secondary stage 4 melanoma, incurable but treatable! OK I expected that what I didn't expect is for the post op MRI to confirm that I have eleven further small tumours in my brain. I thought I had one! Didn't set my expectations too well there did I?
Eleven small tumours, how do I even process that never mind deal with it?
Apparently Gamma Knife is the way forward.
Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up
Default position: Laying on Settee listening to CDs
Current Favourite Album: John Lee Hooker The Healer, one of the coolest albums ever made, the opening track with Carlos Santana is a killer! This was playing on the radio in the recovery room after the operation and I realised that I had not heard this in over 25 years, shocking so resolved straight away