We had a lovely Christmas with family and went away for a few days over New Year. I was able to eat all the lovely food and enjoy it compared to the year before.
The day after New Year’s Day I rang to get an appointment to meet my Neurosurgeon and get the results of my MRI. The following week I went to meet him he showed me my scan from post surgery and the one from December. A small tumour had grown again in the cavity of where he had removed the previous tumour.
Just as he was explaining this to me the door burst open and a lady Dr arrived in introduced herself and a radiographer and said she would be carrying out Stereotactic Radiotherapy on me the following week in this hospital as they had setup the new service and I would be the first person to receive this Gammaknife in this hospital Trust. I was over the moon to say the least afterall this is what I had wanted straight after surgery.
They explained that I would go for a MRI that day then go for the Planning appointment which involves making a mask for my head. Going through the normal questions of how I had been feeling recently was I well etc. Bearing in mind I’d had no symptoms of this new tumour growing in my head apart from headaches which I had put down to healing from my operation and had been on 2mg of steroids since October which I then had come off in December following my appointment with Dr J. However overall I had felt well and I had been swimming and walking trying to get my fitness back
Oh one thing I forgot to mention earlier was just to add to all my ailments I took a blood clot in my leg after my surgery in September. About 2 weeks post surgery I took a pain in my right leg which got worse over a few days so I went to see the GP. Who after examination said you don’t have any symptoms of a blood clot other than the pain but we will send you for an ultrasound just to be safe. Well you know how lucky I am when it comes to scans so I ended up having to inject myself in the tummy with claxen for 3 months just to add to everything else!
Ok so at the meeting with the Dr she explained I may get nausea and tiredness from the Gamma-knife. I told her I had researched quite a bit about it and had been asking for it so was just glad I was getting it now.
At the planning meeting I had to lie really still while a number of staff worked over me making a mould for my head. The staff were lovely and really excited that after all their training and practising on each other they were finally doing it all for real. After a very long day at hospital I went home to come back a week later.
I had to be at the hospital for 3pm for following week again the final preparations were made I signed all the consent forms and was led down to the room. The Dr advised that my MRI the previous week had showed the tumour was very close to the skull so I would probably lose some hair just at the patch were they would be beaming with radiation.
Forty five mins later it was all over painless although just starting to get to the claustrophobic stage. So all done we left the hospital and went home. The next few days I took it easy but felt absolutely fine.
After Dr J had told me about the possible tumour in December I had done a lot of thinking over Christmas whether going back to work was actually a good idea. I had started to realise that this was going to be my life now living between scans. I knew that my employer was accommodating at the minute however I knew there would come a day when I no longer had the option and the decision would be made by someone else. Me being me I would prefer to have control of the situation and know it was my decision to go so after a lot of deliberation in my own head I broached the issue with my husband. This was a major decision to make I was leaving my career one which I loved we would have less income coming into the house and I think it was the final realisation that I had stage 4 cancer, an incurable cancer that would one day kill me, but in the meantime this was our new life. We were a family living through cancer, a mummy who could no longer work and my husband would now be the bread winner. The implications of this decision were huge however the more we talked about it the more we realised none of that stuff mattered and we would get by. My friend who I had met on my cancer journey said to me that she had gone back to work after her very traumatic stage 4 diagnosis only to take a relapse 9 months later at which time she realised she had dedicated 9 months of her feeling good life to work when she should have been spending this time with her family. So with this very much in my mind I finally made the decision to apply for ill health retirement not something you ever expect to have to do at 38 years of age.
After my gammaknife I had felt fine so had went back swimming and walking the week after. I had been to the pool again on the Tuesday morning 12 days post gamma knife then went for breakfast with my mum and sister.
Later on B had called at my house as her car had been in getting a new spring as the day before she had hit a pothole. While sitting chatting having a cup of coffee I said “oh I must ring the GP” so I rang and got through to the receptionist. When I went to ask for something I couldn’t remember what I wanted my mind went completely blank…nothing! I could not remember why I had rang. B took the phone off me and told the receptionist we would call back. That was the start of a very very scary time for me and my family.
After the memory loss came the paralysis. B rang my husband to come straight home from work and not collect the kids. She then rang the the GP surgery and explained what was happening they told her to immediately put down the phone and ring 999.
All this time I could see and hear everything but couldn’t move or communicate. A paramedic arrived and started doing all my stats. It was at this stage he did the pain test on me and I didn’t flinch. He said to B she’s paralysed she can’t feel that! B said it was terrifying the paramedic radioed through for an ambulance and said “if this is a stroke we are an hour and a half into it!” My husband had arrived home at this stage and was sitting beside me. I remember thinking I’m having a stroke Im paralysed. B told me afterwards that my eyes started to flutter from side to side and she said to the paramedic “oh look her eyes are fluttering again” he looked at my eyes and said she is having a seizure. At this stage all I remember is my head jerking to the right and me making a groaning noise I remember seeing another paramedic coming through the door and then blanked out. Afterwards B and my husband said the paramedics cut open my top put needles into me put me on the stretcher and wheeled me out to the ambulance. I remember coming around just as they were putting me into the ambulance. I took a further 3 seizures in the ambulance enroute to the hospital. There was 2 paramedics in the back and the driver so my husband had to sit in the front he said he was shaking like a leaf by the time we got to the hospital with the speed of the ambulance and seeing me.
I remember briefly again voices saying they had arrived at the hospital then nothing again as apparently I took another seizure in resus. B had driven up to the hospital in her car so her and my hubby sat waiting for the dr to come and see them. They said it was horrendous they didn’t know what to expect the Dr to tell them they didn’t know whether I would have any memory or be paralysed they were petrified. A while later the Dr came and told them I’d had 5 seizures and that they had medicated me and I was sleeping they were allowed in to the room. Still they didn’t know what to expect when I woke. A few hours later I started to waken and was mumbling between sleeping. They said then all of a sudden I woke up and asked what happened, then asked them to get me a drink and chocolate! They said they looked at each other and said oh she’s fine she’s thinking of her stomach! I was moved to the ward after 1am and B and my husband were able to go home.
The following day I got discharged from hospital, put back on steroids for a few weeks and my anti seizure tablets that I had been taking since last summer for the jerking and twitching caused from the first tumour was increased slightly.
Before I left the hospital the neuro oncology nurse came to see me and advised that the seizures were a side effect of the gammaknife.
At home everyone was scared to leave me on my own for the first week or so. I read up on seizures and discovered there are different types of seizures of which I had experienced all of them from the memory loss, the paralysis, the loss of consciousness, my body going stiff and my lips going blue.
well I think you have all gathered by now I don’t do things in half measures. I had said to Dr J one time “if it can go wrong it will go wrong with me”……. well I wasn’t wrong, I just wondered when was this all ever going to end?? Please please give me a break……..