How do I start?
Tuesday I went to St Barts and was given the low down on the gamma knife treatment that I was having the following day, Wednesday. I was given in full details of what to expect. I think it is to ensure you prepare for the worst. All it did for me was make me cry and want to run for the hills!
The extremes of how bad things were going to feel, such as injections, the head frame and so on. Seeing the machine and where my head would be screwed to the bed did nothing but fill me with fear. Fear of what? They weren’t going to hurt me.. Well this is typical ‘me’. Fear of not being able to move for up to two hours! Argh!
I did my usual of coming home and off loading onto Pete and spent the whole evening in bits. We were going to be getting up at 4am because they wanted to start treatment at hospital at 7.30am. Ok we don’t live that far away but if we aren’t sleeping and we are worried about getting there on time then it’s best just to get on with it. Well we both woke up at about 2am… standard worrying time.
Pete had prepared a bag of things I would need for the day plus some food and drink and a sick bag in the car… I am not sure if he thought I would need it for the journey home because the aftercare advice mentioned nausea and vomiting. Well it didn’t get used on the way home. It got used on the way there. So much anxiety meant that last night’s dinner came up (weird that it hadn’t digested after ten hours but that’s another discussion) I was fine after I had relieved myself of all the wretching.
On arriving at St Barts we met the lovely clinical nurse Liz, who had been taking care of me from the start. I think in a very clever tactic they got me straight in at 7.30am. I was first, between me and one other lady. I walked into a room with five other people all waiting for me and a chair. Gulp. I sat down and was introduced. I have no idea of their names… I was too busy having a quiet nervous breakdown. One lady put the head frame on my head and stood and held it there whilst a doctor went round and gave me four injections of local anaesthetic of where the ‘pins’ were going to enter my head to keep the frame still and secure.
I was warned the injections would feel like bee stings. Yes they hurt but only for a few seconds. I didn’t expect them to bleed but I was being dabbed all the while. Then came the screw drivers! Yes screw drivers.. Pins, my foot.. They screwed the head frame on and what I felt was pressure as they got tighter. Liz, the nurse held my hand and stroked me the whole time. Apparently that was the worst bit over I was asked continually if I was ok. I think it was because I physically shaking and my jaw was chattering. Not a good look. ..Then they took me straight in for the MRI scan to get really clear images so that they could plan the gamma knife treatment. I was given 3 batches of contrast dye. This is so they could see absolutely everything, so if there was any other tumour trying to make its way they would notice it. Luckily, they advised me there was only one tiny tumour in the left frontal lobe. No extra surprises… that’s what I like.
I hate MRI’s at the best of times but this time I had a head frame on as well some plastic attachments. It was only for twenty minutes and all I kept thinking is this is going to be a doddle compared to the gamma knife. Never will MRI’s be scary. So that’s one positive so far.
So far so good. Of the things I had been advised already I had completed two of the major events and all was fine and dandy. I didn’t experience any pain in my head from the frame as I was well and truly numbed.
Then we were transferred to the gamma knife centre where I sat for about four hours waiting for Dr Plowman to come down and see the plan his staff had worked out for me. That was ok as I had Pete with me and I was given plenty of tea and yummy snacks. Time flies by really when you are in a daze and everything seems so surreal. Having so much adrenalin running around the body and also feeling so tired from lack of sleep can also make one feel bizarre.
Eventually I saw the jolly doctor who I really like, mainly because he calls me, ‘young lady’. Haha.
Pete spent the day cracking jokes.. I am not sure if the staff found them funny or if they heard them all before but I thought it was hilarious. He didn’t think Liz the nurse liked him because when I was taken into the MRI room when I was having the contrast injected he stood outside the door taking my photo and doing little dances and smiling. She told him to sit down a number of times. Haha. Then he accidentally started playing rap music in the waiting area! Haha… Oh I am laughing right now.
Here’s a few jokes to wet your whistle;
‘She’s not in the right ‘frame’ of mind’
‘She won’t be bolting anywhere!’
Once the doc left I was taken into the gamma knife room and laid on the table where they screwed my head to it so I really couldn’t move. They said I was allowed to scratch my face and cough but to be really careful because if I touched the machine it would take several hours for it to be corrected and ready to use. Great. Being told stuff like that just makes it worse! I was not going to cough or scratch my face no matter what! The good thing about the gamma knife machine is that it is larger than the MRI. It isn’t right in your face so I felt less claustrophic and they don’t put you in it very far either. Luckily for me also the treatment time was reduced to about 45 minutes as Ii only had the one tumour and it was easy to get to. I was delighted with this news. They also asked me if I wanted to play my own CD. I listened to chilled out Ibiza tunes and worked out how long each track should be so kind of knew when I was going to be finished. It totally chilled me out and I actually dozed off for a short while. That part of the treatment was the easiest. I didn’t feel a thing. I didn’t get stiff or achy luckily and I was so happy that it was all over. As soon as they got me up they removed the head frame. This was really weird. The screw drivers came out again and the noise as they undid them was horrendous! Little oozing holes dripped, which is to be expected and it felt really odd as the pressure increased not decreased as they released the frame.
This is when the pain starts. I rested for a few hours and they gave me pain relief, whilst the head sorted itself out.
I was discharged not long after having lunch and then came home with my Bear. My head is sore where the entry wounds are and I have been advised not to get my head wet for a few days. I have two little plasters on my forehead( which makes me think I have little horns growing!) and they left the ones at the back of my head open. They are all oozing ‘stuff’ and blood. The back one has bled the most and it’s a tad uncomfortable to sleep on them.
I have been warned I could get black eyes and may have tingly from nerve damage on the head along with a whole host of other side effects that radiation can cause. Anything goes really. For now I am trying not to express myself too much as raising my eyebrows really hurts! Haha! I’m expressionless….
I am so proud of myself. I didn’t cry once whilst there. I wanted to run away that morning but I am so pleased it was no way near as bad as the nurse had prepared me for. It must be hard giving advice to patients when you have never felt it yourself.
Apart from the dramas in the beginning this whole experience has been amazing. From what I can gather not many people get it done on the NHS. I am thrilled to have had it done and they have advised me that if I get any more tumours I can have it done over and over again unlike whole brain radiotherapy. They seem to think metastases go completely when having gamma knife. Other kinds of tumours can return.
I reckon this brain has got it sorted, but what a thrill to have met such lovely staff. (Pete was chuffed to bits to meet an actual bonafide neurosurgeon yesterday- he was doing my treatment for me!)
Mum messaged me the night before and told me I am a ‘brave little soldier’…. I believe I was.
Today I am under strict instructions from Pete not to do anything and just relax, because even though I can’t see any wounds or scars it doesn’t mean I am not healing after having had surgery. I have tried but I feel pretty good apart from a bit of a sore head. I have been out for a short walk, done the hoovering, and floor steaming, a bit of washing, hanging it on the line and written this.. Oh and have been having a little window shop online too. Ooops. I’ll lay of the exercise for today and do a bit of reading and knitting…
I cannot believe the support I have received from my friends, family and followers. Thank you so much, it really helps. I even received some beautiful flowers by post this morning… I am being spoiled.
Light and Love. X