‘My Girl Lollipop…’
This is what I see when I look in the mirror! Ha ha.
A very slim girl with a puffy round face. It’s funny. I am not complaining! It’s just strange looking in the mirror. Pesky steroids.
What’s been happening you ask?
Things have been very up and down recently and I have been, for so long to blog but even when it’s my ‘One Thing’ to do it doesn’t get done due to the other really important stuff to do; like addressing doctors by emails, attending appointments and generally being on top of everything. In my eyes that is brilliant in itself. I am able to do things, function almost normally… almost.
The steroids are the biggest issue although, I have started to reduce them. I have now been told to reduce one tablet every 3 days and if symptoms become bad again then increase again. Great stuff. Apart from sleep deprivation and a very weird food thing going on, I’m ok. I have got this little puffy face that had gone but I heard looking like a little chipmunk is all the rage these days!
There is a plus side to being awake in the middle of the night is that I get some great ideas and plan the following day. The downside is I am like a zombie the next day. You would think I sleep like a log as I am so tired, But nope. Today for example I am in a daze desperate to feel rested and normal
I am now taking a sedative to help. It can be good good but I am like a little bit space cadet in the morning. OK it takes me longer to get going but who’s rushing?
Prof Harris appointment
Last Tuesday I had an appointment at my local hospital for a clinic appointment which Prof Harris takes. I was told he wouldn’t be there but he was. Normally I would dread it but really what’s the worst that could happen? Turns out nothing……
Now rewinding slightly, some may have seen on social media that the previous Saturday 3 weeks ago, whilst walking through a local town, feeling quite confident with my walking, I stepped over the kerb- yep, all fine.
Then immediately caught my foot on a broken manhole cover and went face first onto the ground!
I screamed and landed, without putting my arms out to stop myself. Pete grabbed me immediately off the ground by my shoulders, to see a very bloodied and broken face with blood that wouldn’t stop gushing! Oh, my it wouldn’t stop. It was carnage. Passers-by helped with Teddy, our puppy, who luckily had run to my side and not in the road, as I let go of his lead and I was sat on a bench outside a closed restaurant, trying to recover WITHOUT tissues.
The kindness of strangers is amazing and passers by gave me packs of tissues to try and stop the bleeding. My clothes were covered but I was slowly getting there, when Pete’s son and friend turned up with his car and drove me to a local friendly pub.
I walked in, waving my arms asking for scissors for the plasters I had been given.
They were having morning meeting but a lovely lady called Rebecca ushered me into the toilets to clean me up. I must have looked a sight. I got practically got naked as Rebecca my wounds and stuck plasters everywhere. The bridge of my nose, my chin, and my lip were split. It didn’t matter I wasn’t bleeding from everywhere.
I went back to the bar area where it was now open and Pete was sitting waiting to see me, with a brandy for me, to calm my nerves. Just what the doctor ordered.
What a nightmare!
Don’t worry I will be more careful in future.
Turning an unfortunate negative into a positive, we had a lovely tapas lunch, then home to the sofa, to take it rest up.
It’s been 3 weeks and I am still bruised. I have healed well, with only a black eye and a broken nose .
..Right back to the appointment with Prof Harris. He said he wanted to transfer me back from St Bart’s hospital, where I had previously had been having brain treatment, to our hospital in Oxford, for brain treatment. Yes, please but what can The Oxford Churchill Hospital, offer me?
He told me that our hospital has been setting up a treatment centre for brain treatments!
Wow, this was a huge development. He would send details to my email. If this did happen
his could be great if it happens. Nope- I’m not a Doubting Thomas!
Next, we discussed my face.
I said ‘Surely you should book me an emergency MRI for my brain that very week?
He said that fall could have could have killed an elderly person and agreed to ask radiology to get it done by Friday.
‘Yes, he agreed?!’ Uh, I did not expect that response. But cool!
Ever doubtful I was anxious that this would not happen.
Prof has a new secretary ,who I decided to introduce myself to, by email. My oh my, this lady is so nice, helpful and totally understands my situation. She has been brilliant and she got on the case and ensured she got the MRI it got booked! I cannot thank her enough.
The next morning, she emailed to me say she would chase the scan and she did.
I got an MRI booked two days later at 9am! I had it last Friday- 2 days later. Woohoo!
Not only was this amazing, but the next challenge, ( here is always a but.) was to get the results too- on a disc, which would be unprotected; that I could simply pop in any computer and it would work; As well as a written report.
The radiology department said they could do it but I would need to pay a fee. That fine.
Then Sabrina received confirmation from the staff there I wouldn’t need to. They would do it for me! Yay!
Typically, I arrived Friday and mentioned it to the receptionist, who said she didn’t know anything about it. They were playing hard ball. Boo.
I went into radiology for my scan and met my nurse, Susan Cross. I have to big these people up!
She was lovely, reassuring and she had read all of my notes.
She prepared me for the scan and in I went to the scanner. When I came out, Susan, the lovely nurse, said she would make the disc for me, there and then! Just wait for 5 minutes in the waiting room.
Uh? I couldn’t believe it. I waited for 5 minutes, she walked out and me a disc and wished both Peter and I, all the best. I cried….. Life doesn’t have to be such a struggle. Happy, happy, happy.
As promised, no encryption or passwords stopping me and my data, my disc.
Apart from getting the disc, I now had to get the written report too.
Not worried much… Um..That too was in my inbox by Tuesday! Boom!
Thank you to Susan, and the other members of the department that helped and Sabrina, Prof’s PA. You have restored my faith in humanity and I couldn’t ‘thank you’ enough if I tried. Hugs all round, and High Fives!
Peter dropped me back at home and went to work. He converted the disc to an email link and it emailed it to all of the doctors in Germany. My cyber knife doc got it too and replied with his thoughts a few days later.
Cyber knife doctor, Dr Wollf said;
So here goes;
The ones treated that he in January do appear to have slightly enlarged, but feels that they are dying, turning necrotic. Tumours change a lot even when they are dying too.
There a few two small new tumours on the other side of the brain, now too.
The predicament is,’ Can I have any more treatment on the head since I have had whole brain radiotherapy in that area? We had been told I that would not be possible by the NHS.
Dr Wollf, my cool German Cyber doc, replied a few days later and said ‘Yes I can treat them for you with cyber knife!’ Great.. at least we had an option, but it would cost more money.
He has provided me with treatment dates, that sadly I wouldn’t be able to attend as I will already be in Germany visiting Dr Nesselhut for immunotherapy plus infusions of drugs, unavailable here. So if I do go I would have to wait.
Prof Harris cont..
Back to the Prof. He has transferred me back to Oxford and referred me for treatment on my brain and they are going to be discussing me at their next meeting on Tuesday-Today!. He says I could have an appointment for treamtent, within two weeks, if I am accepted. Ok let’s not get too excited. They have not said ‘Yes’ yet plus I will be away if an appointment did actually arise in two weeks. Um, I will be away.
I will wait for the reply. Fingers crossed, I am accepted and if by any miracle they do give me a date that is whilst I am away I could do the following week, when I have returned from abroad. It’s only an extra week.
Now, I am slightly nervous and I hope and pray the tumours do not increase in size, during the time I am not having any treatment on them, which could dash all of my chances on my return of having treatment, but they are small and hopefully Dr Nesselhuts’ treatment will also work, having an impact.
Dr Nesselhut called
Speaking of Dr Nesselhut, I get a call from from him, suggesting we do the treatment that I usually have, in my arm causing minimum disruption, directly into my carotid artery to my brain instead. WHAT?!!!
Has he gone mad? I contacted Pete and we both agreed this would be insane. ‘No’, is the answer. Phew.
My lungs are also a concern, since apparently, they have also have changed and a few tiny new ones are now present in my left lung, which has laid dormant for ages.
So, Prof Vogl, where I have TACE for my lungs, was my next port of call.
I don’t want chemo drugs going into my body when my Hb are not at their best and I really need to stay well. I had already cancelled my next TACE with him in a weeks’ time.
He replied in his usual funny short manner and said that we could do bland embolization- no drugs. Great, an option but not this month, if at all needed. I just have to hope Dr Nesselhuts’ treatment will work and reduce those little blighters.
Seriously this cancer is trying to take me down. Paahahahahahaha.
They don’t know the powerhouse that is Pete, my Bear, up all hours researching, contacting doctors, breaking his body and mind- for me. I can’t ever thank him enough. But, he is my One, and he won’t stop until we know there is really nothing left to be done.
Lisa and the Macmillan Team and Sobell House
Then, there is my lovely Macmillan Nurse at Sobell House, who has been a Saviour. I can contact her and anyone in the team anytime, about anything. They are a breath of fresh air. Such comfort.
Blood Clot in vein
I have forgotten one thing. The blood clot I was told that is in is the SVC.
Its small but Prof Harris advised it could be fatal and explained what I would feel if it became a problem. If it is a problem then get straight to casualty. So, that is a small stickler, but trying not to worry.
I had a weird episode one Thursday evening, after our evening meal. I felt stuffed, then passed out on the sofa. I felt wasted and went to the bathroom. I was awoken by Pete whilst I was leaning on the wall, talking gibberish. I don’t recall any of this. Pete carried me up the stairs, where I slept immediately. In the morning, we were puzzled and I felt really scared…
The next day, I got on the phone to Lisa, my nurse, and she said I needed a glucose blood test. Sometimes steroids can cause diabetes! Oh my goodness. What else can I face? She said not to worry, she would organise a glucose blood test.
Organised at the GP, I went the following Monday and she called the next day to say it’s fine and I’m normal. ‘Normal’, I wouldn’t say I am normal but that was great news. Ha ha. So maybe I just ate too much and was exhausted. Who knows? I hope it doesn’t happen again.Eek!
So, there it is. My update and all that has happened in one month, July to now, for Peter and I.
One last thing I wanted to show you.
Some of you may know of the dragons that sit either side of our drive, Puff and George; that I decided to start decorating monthly, on events like Breast Cancer Awareness month, Christmas, Easter, rugby events and so on. thought it would be fun and a bit crazy, to brighten and cheer up our village, make people smile and we have, I have heard the children and most adults, smile.
I decided to do some summer holiday ones, despite, the awful weather we have been having.
Hope you like them!
Unicorn magic, rainbows and love…
Let the sun shine from up above.
Over and Out…
That’s it. I got to finish this update, eventually.
Now where’s the sunshine gone? Cooeeee!
Much love, hugs, massive respect to God, the Universe and my Angels, whom are protecting me.
Hugs, light and love from Me, my big furry Bear, Pete and Teddy, our gorgeous puppy and Kitty, our long standing, disgruntled but We love her, Kitty.