Well 2016 went out with one bloody great big bang. Fireworks? Partying? Nope. I don’t want to dwell, moan or anything really. What has passed has passed and I could go into great detail, but sometimes it’s best left. But I do think I need to record this for my own journal and to let anyone that’s interested know what has been happening.
Towards the end of the year things were very intense, I felt negative, off and started to bump into things and trip over. It came to a head when I noticed that I was dragging my left leg and holding my left arm in an awkward position. I have an appointment to see my GP for other stuff but she noticed as soon as I walked in something was wrong. She called triage at the Churchill hospital and I was sent there immediately. Not sure what they could do but I wondered if I had had a stroke or something!
After being studied and prodded for hours- they kept me in. Not necessary as they didn’t do scans or anything. Pete came up the next day and sat with me- New Year’s Eve.
I had a CT scan that was already booked as an outpatient for my usual three monthly chest scan plus a brain CT scan but without contrast so it wasn’t very useful they said. I eventually got free from the NHS clutches in the evening after wasting their resources for the over 24 hours having been told no stroke but it looks like there were two lesions on the right side of my head causing swelling and the imbalance symptoms. Gutted to say the least. Straight on steroids to fix the symptoms.
The next two weeks the symptoms reduced really quickly and I am now back to normal. Thankfully. Although the side effects of steroids are awful I am more than happy to be ‘normal’ again. I have a chipmunk moon face and I piling on the pounds! I am loving eating!
Christmas came and went and then the thoughts of new year and how exciting 2017 is going to be for us. Better than 2016…we all hope every year is better than the one before.
We had a ski holiday booked for the second week of this month. Of course we toyed with the idea of not going as I wouldn’t be able to ski probably. I had lost so much strength in my left side. But always optimistic we decided to go. Full of cold. The stress had got the better of us both. So already hindered with coughs and lots of mucus we were on a back foot- but never for letting things go, we went.
The location in Austria was beautiful with many blue sky, days. But it was lovely having time together alone especially with how stressful we had both been feeling.
The first day we went up the mountain and I tried my hardest to find balance and when falling over I kept getting up but it was futile. I was crushed. Getting up was so hard. I had no strength. I couldn’t even find the strength to push down into my ski. I felt like I lost the thing I am really good at. I was heartbroken and retreated in tears back down the mountain.
That night I couldn’t sleep. I was in complete agony. My legs and joints were in constant pain and I couldn’t tell if it was flu or something else. We were really concerned and decided the next day to evaluate the situation and maybe head home.
Being mad, crazy and stupid we bought more lift passes for the rest of the week. Gluttons for punishment maybe?! Yes definitely.
The second day, I was better but did very little. But at least I was trying and loving being in the open air and loving my Bear as much as I could. But then I had a second night of pain and no sleep.
Midweek, I caved. I decided I couldn’t even go up the mountain with ski kit, so for the first time ever Pete went out on his own and I made roost in a restaurant for the day. I cried the whole time. People must have thought I was a nutter. But I felt such as failure. My favourite sport and I couldn’t do it. But I allowed myself to rest whilst Pete skied from Austria to Switzerland. Sounds epic doesn’t it?!
The whole week I didn’t sleep and had different levels of pain every night. No idea why. Pain relief didn’t touch it. Pete all the while didn’t sleep either but he was brilliant. We would get up out of bed in the middle of night and have a cup of tea and talk and cuddle.
Thursday I decided to give it a go again. The weather forecast was going to change the following day so today was my last chance. I did it. I skied a lot more competently and I actually had fun! I was so proud of myself.
Friday the heavy snow came so a day of sauna and relaxation was on the cards. A perfect end to our break away.
All during this time I received so much support from everyone online and at home. I was an emotional wreck! I cried when I was happy and sad. Poor Pete didn’t know how to react! Haha. It was hugely overwhelming. Thank you everyone!
Travelling home day didn’t go well to begin with. The snow was so heavy the transfer didn’t arrive for over an hour. The roads were snarled up and it took twice as long to get to the airport. We expected the tiny airport to be full to the brim as usual but weirdly our check in desks were not. Bonus. Security was flowing and so we sat and chilled out. Lots of flights were delayed and cancelled and we didn’t think we would get home without a huge delay. A flight that was due to leave to our airport to our destination airport at 10am had been delayed for over five hours. Oh well. We thought we could waste time there quite easily after spending so much time at the hospital a few weeks before. Then our flight arrived. We were boarding before the 10am flight?! We did have to sit on the tarmac for about an hour but at least we were on the flight.
Thank you God, Universe and Angels. We got home with a short delay but things went so smoothly. What a great finish. Blessings, gratefulness- the works!
So then our thoughts came back to reality.
We had an appointment to see Prof Harris, my oncologist. Mainly to get results from the recent scans and find out whether a referral to St Barts for gamma knife has been considered for me.
I am not sure what happened. It’s a bit of a blur. Pete and I sat there as Prof Harris told how very serious the situation is. Doesn’t he know us by now? We know that?! He told us in some sort of detail that I had two lesions in my brain but there are multiple small metastases in the right frontal lobe. It looked very bleak and to be honest there isn’t much they can do for me. He then said that St Barts had discussed me in a meeting the day before regarding gamma knife and they were trying to get hold of them to find out if I was initially accepted to just simply go and see them. Professor Harris said it was ‘highly unlikely’ they would even consider me even at that point. What?! So they would let me die?!!!!! Yes, basically. He sat there and said we now needed to look at the minor possibilities that Eribulin chemo may get through the blood/ brain barrier. Oh my god. When he left the room to faff about, I obviously became upset and when he returned he asked, ’Are you upset?’ Oh my god! Was this guy serious? We asked lots of questions about whether I could have whole brain radiotherapy again. I was told no. I could get dementia. Not sure how fast I wold get it but surely I wouldn’t want to live like that at this age. But excuse me, you just told me I had weeks/ months left to live. I certainly won’t be getting another two years free from brain tumours like I just had.
He suggested that I contact ‘my team’ in Germany to see if they could help and then mentioned two drugs that have and are being discontinued here in the UK that Germany may be able to get for me.
So basically the NHS can do nothing for me. I have never felt like my life was so worthless as I did yesterday. I was being dumped despite there are resources, but they are not willing to try. Or at least that was what my oncologist told me.
In a daze I walked out and Pete and I somehow got our way back home in complete despair. Friends and family were all keen to know what was going on. We didn’t to have to keep them waiting but I really wanted to know what St Barts had said. Would they see me? Or am I lost cause?
We did update our nearest and dearest briefly and support was there immediately. Just what we needed. Hugs, tears, laugh, coffee, munching and finally more hugs goodbye.
As well as this I wanted copies of the scans to send to ‘my German team’. This became an issue in itself but with going back up the hospital collecting CD’s then technical support (Thanks Adam!) came to the rescue and got them all online, we started sending emails to my Prof Vogl in Germany.
During the afternoon, I finally got a phone call from another oncologist at my hospital. He had news about St Barts. Finally they had spoken to them regarding the meeting about me the day before. They had decided to allow me to have an outpatient appointment to at least discuss with the gamma knife doctor as to whether I am eligible for gamma knife. Well that’s a bit more promising! Why did Prof Harris tell me it was highly unlikely I would get an appointment? Why would he take all hope away?! I don’t get it. I was crushed. I was dying. But now there is a glimmer of hope.
Back to emails to Germany;
I was honest and told Prof Vogl everything and that we are scared. Bearing in mind they are an hour ahead and by the time we got emails across he should have been at home with his family. Nope. He was still working. He went straight to his colleague in the cyberknife department who emailed also asking for more info.
I eventually went to bed at 11pm last night. I was still getting emails from them! These guys are so dedicated. My heart began to feel hope.
His first email to me was ‘don’t worry we can do this. You will win again.’ Then his colleague even sent me an email with comforting words. Pete said it was a very caring email (as it was in German)
I honestly couldn’t believe it.
I had had more support from strangers in Germany, than ‘my’ oncologist here in the UK who has known me for 6 years. Pete feels very strongly about this and is clearly upset.
Right now the options are we go and pay for cyberknife in Germany? It’s cheaper to pay for it there than it is to pay privately for it herein the UK. They say I can go tomorrow if I want to! It’s that quick. I would be a priority and they are more than happy to treat me for the two/three lesions. They have seen the scans and haven’t mentioned the area of multiple metastases that I was told are there. Now we are trying to decide what to do. It’s a lot of money but well worth it.
I have just picked up the post off the doormat. A letter from St Barts- an appointment for the 3rd February to have a chat with them. Well that’s good I am booked already, shame it’s not sooner. But then this is the NHS. That’s pretty good though. Decisions to be made. I will wait to hear what Pete says. But bless him, he has to work.
Last night I didn’t really sleep, naturally, but a bonus- no pain! That’s two nights now! YES!
So that’s it. The update. Phew I’m wrecked in every single way. Pete has been an utter rock. Telling me, they’ve told me this before. We took no notice then and look how far we have got. I couldn’t do this without him. Of course I feel terrible about the situation. And I am always sorry but this is the life we have. At least we have eachother. What more could I really want?
Today I feel positive. I am trying have some control in my life by doing small jobs around the house and emailing etc. It keeps me focussed and I feel better about myself.
Strength comes from every single person, action, comment -you name it. I am blessed for everyone and their words of support. That also makes me cry! Hahaha haha! I am a mess. But at least I have hope now.