Sometimes you have to just sit back and say “You couldn’t write this if you tried”.
Its been another fierce two weeks and although the strawberries aren’t quite over it feels like another shift in the Universe and being honest both our strength has failed. We have had a lot of tears and talked earnestly of things that until now have been taboo.
I guess you know the back story since January .. Oooops we didn’t bother scanning your brain even though we were specifically instructed to ….oh dear you have multiple brain tumours that make up two clusters and we cant even work out how many there are, so sorry but you will die in the next 6 weeks and there is nothing we (the NHS) can do.
So off to Germany and cyberknife, only to return £15,000 poorer, to a letter saying actually we can’t do this for you – Ooooops again. At least we can have the post procedural care on the NHS. March lost scan (admin error), April lost scan (cover attack), off to Germany for a scan then. May the scan you have had is inconclusive, come and have one here. June-we don’t have your scan yet but we’ve looked at the German one again and its inconclusive so come back next week for a PET scan.
Ooooops you’ve been booked on a day when we only do dementia scans .. sorry its a 6 hour round trip and you are literally filling the car with vomit whilst screaming in pain but never mind, we don’t actually care that much. But we will scan you anyway. Then come back next week in the vomit pain wagon for Clinic.
That was a well worth while trip… “We cant actually tell you anything because our MDT is on Friday but I think your tumours are active and you are going to die quite soon, enjoy the drive home” .
Soooooo this brings us to the “call” yesterday. Very specifically we asked, please call Peter. Of course they called me – AAAAAARGH, so redirected to Pete, after they 2 weeks of death row, we are told ….
NB If this was happening to a repair to your cooker by now you would be in tears and ready to kill, so good job this is only my death we dealing with.
…. “It looks as if there is activity, so we suggest another scan in 6-8 weeks and there are another 2 very small tumours on the other side of the brain, that we wont treat. that’s not because of resources or cost its purely a clinical decision.”
Let’s digest that:
The wrong scan was used so its not possible to differentiate for sure between brain activity and tumour activity (even with the NHS top radiologists, as we were told)
Its a “clinical” decision only – but we could pay to have this done privately
When unsure the best thing to do is wait 8 weeks so the patient is dead
Bear said she sounded bored, tired, unhelpful and without any focus and he told her so, her reply was that she was sorry it wasn’t good news – light the touch paper! She had a frank explanation of the realism we bring to canSer and death and that far from being sad, we are just angry at what is amounting to professional negligence with every additional straw adding to the load on the camels back.
To compound this while Pete was on the phone to St Bart’s I had a semi hysterical call from the Churchill from a Doctor I don’t know, saying “You have an embolism near your heart you are going to die, and your platelets are dangerously low, you have to drive to the hospital now !”
I tell her I cant drive and she said, “Why?” – SERIOUSLY Duuuhhhh maybe brain tumours would be a tiny tiny hinderance?????
I can’t deny I panicked and finally fell apart! Bear called to try and gently give me the news from St Bart’s and all he got was a screaming blubbering mess – he immediately left work to get home.
And this is where the story turns and shows just how simple it is to help terminal patients.
My new lovely nurse liaison Lisa from Sobell House, stepped in and said “Leave it with me”. She called back really quickly and advised that “Yes” there is an embolism, and was I short of breath or in pain – as it was no to both she said to come up for tests the next day! Relief and although my platelets were at 54 they had been 45 so they were going in the right way. Thank you Lisa, I nearly had a heart attack from the first call and you saved me.
So Bear took me up to the hospital yesterday (he loves spending the only days he has off at a hospital – NOT) and I was immediately “tagged”. I started to get that sinking feeling again and put my protest in early! “I’m not staying here”.
Then my second savior – Rita at Oncology Triage! She confirmed that my platelets had now risen to 94 and that’s not far off normal. She did outline how I should stay all day because “A Doctor” would need to talk to me as the treatment for blood clot cannot be admitted until they are happy the blood is right, but then smiled and said, it will take a long time, you live close, Ill call you, with news”.
She did call as promised but as of yet there is no news.
We need to deal with the brain, urgently. The NHS cannot get us the scan before 2 weeks apparently, but we are trying, then we can work out our options, but until then we try not to worry, focus on all the good stuff, love a lot and spend time with our friends. WE LIVE.
Lots of Love to you all and thank you for all the love you have given me (and Bear) this year – I wont give up, so make sure you don’t either.
Tuesday 25th July
Since then I have had a result from St Barts. Pete fought and finally was put in contact with a little saviour who just sent links to all scans. It’s all too technical for me but we do have the files ( I think ) and we have emailed Germany. I hope they can open the relevant ones and get back to me asap. That’s all we can do. This is big news isn’t it… I am not going to say Yay or anything. We are still not there.
Right, that aside I could go on about how awful it has been and so on, but in the nature of trying to let go and move on things have been good for me over the last few days.
Learning all the drugs to ease pain and everything else that its making just a little annoying and harder; such as stomach issues, infections and most of all pain and keeping the symptoms at bay in my brain so I can at least walk straight! xxx
I am a much improved as you can see I am actually typing now! And I want to rather than lie down. I will be honest though. I have never felt so terrible, low and like this is the ‘end’ like I have so much in the past 7 months but more so in the past few weeks. There have been so many factors bolstering this improvement.
All I want and need to fight is to be healthy. My body is failing me and I can’t cope with that. I have got to points where I think it is all over. But then who am I kidding? I ain’t going anywhere without kicking and screaming. (Lets face it I can run away, the steroids are weakening my legs. I can barely climb the stairs! PlusI have no dignity. I will miss out on too many things! And I don’t ever want to leave my Bear. I have too much to live for.
My current state is about 3-4 hours of sleep a night followed by kinetic thoughts, all pretty positive, never the less, lying awake almost all night. This also makes me very emotional. I cry at happy, sad, and nothing. Poor Pete cannot leave the room without returning and me being crying about something!
I feel more stable now because I have been keeping myself busy and getting things done! It feels good, but I do take it steady and will be sitting relaxing very soon.
The support I have received is off the scale and I have seen friends and its starting to make me want to live even more. I am excited to see people and its been so long since I did that.
My weight loss and lack of appetite is being stimulated now by steroids so in fact I have started eating. I have to control it or else I will be oozing again. I don’t know whether to wear size 8, 10 or 12. I don’t care. I feel like my body is healing and maybe my mind too.
My life mantra is ‘keep things simple’. All I need is routine and love. I will have that again.
Today Lisa my nurse came over and told me the doctor says I can reduce the steroids starting tomorrow. Yes, Yes, Yes! That is great….
Until next time….