Pete and I went to bed early last night. So early we had about 11 hours sleep! Boom! I love the Zum Lowen’s beds. Dragging myself out of the warm and comfy slumber this morning I scooted to the clinic to have my bloods drawn ready for up and coming visits. I was due to return at 11am for the next hour long treatment but as they had time I had it all done at once.
I had a chat with the nurse whilst lying there. She was telling me how much easier things are now.e asked if I remembered last summer with all the Portuguese patients. Do I? Boy yes. It was so busy and many mistakes were being made.
I asked why it wasn’t as busy now. She said it had calmed down since people had started abiding by their appointments. She said that for a shirt while people would stand there at the counter demanding an appointment. They had travelled from Portugal without having an appointment and cry until the doctor saw them. It’s amazing what desperation does to one. The staff would start at 8am and finish at 8pm. I guess that’s busy over there.
Thankfully peace had been restored.
An hour or so later we met with Dr Nesselhut who was lovely as usual and this time had a doctor from Amsterdam sitting in with us.
We explained again the scan results and he seemed concerned by the necrotic ones that were active in my lymph nodes. He said that he would like/expect no changes so if the next scan still showed a lot of change then we need to let him know so that he can change our protocol. Pete mentioned the fact that I’d had head/neck ache for sometime and Nesselhut insisted on getting it checked out by way of bone scan. He said it is probably nothing but better to be sure… Not what I wanted to hear.
Pete also mentioned my cough and explained Prof Harris’s thoughts on it. Nesselhut was less concerned but suggested codeine at night… Not sure why.
A lot of conversation was banded about things that could be done and what was inbound. He talked a lot about anti pdl1, pd1 and more. We said we thought I had already had that. He said in the vaccination, yes, but not injected directly into me. He said the quantity required would result in the cost of £100,000! He suggests it works better because when administered in the vaccine we are just training the dc cells, whereas administering it into the body, it attacks the protein cloaking the canSer and therefore has a much better response. They have high hopes for this.
Pete not knowing the price asked when we could start that treatment. Nesselhut said not yet then told him the price….. Jaws dropped. Let’s hope I don’t need that then!
Whilst chatting about triple negative Nesselhut said that they had amazing results for those who had not waited till they metastasised for dc treatment.
He says the success rate for those who have the treatment is 100% over 5 years. If only I knew about his work before the canSer had metastasised.
For someone like me he said there was a 30-40% success rate over 5 years… Well I guess that’s me in that 30-40% then!
This is great news for any TNBCers out there. It isn’t the worst thing ever to have that diagnosis and despite needing funds if you can obtain them, then go for it. It’ll save your life.
I had my vaccination intradermally and intravenously. My arm is currently as big as a balloon. The biggest reaction yet. I feel fine. I am longing to be at home but then who doesn’t when you are sat at an airport.
Thoughts have worried me this afternoon. I guess if I am being ever alert then I know in my gut that I should get my headaches checked out. If I am being less cautious then I want to wait. I have neck ache. It feels like I need a bloody good massage. The thought of having an MRI scan fills me with dread.
Whilst having a green tea this morning I suddenly felt sick and had to rush to the loo where sadly I vomited. What caused that? Don’t know….
Last night I spent a little while trawling through FB, as you do. I saw a post on The Huffington Post. I’m not one to follow blogs, bizarrely enough on other canSer survivors, but this one caught my eye. I read it to Pete and we both cried. Not wanting to ruin it for you, the outcome isn’t all happiness and joy but the power of the internet has meant her post has gone viral and her husband has written to thank everyone now that she is gone. I’m reading far too many posts of late of women dying before they are 40, not just of breast cancer but bowel cancer and more.
Here’s a link to Charlotte Kitleys’ final blog that she wrote before she died : HUFFINGTON POST
Followed by her husbands reply; Well, it’s not quite the end…
I don’t think Charlottes’ post was all doom and gloom but full of love, hope and happiness. I will take her advice and run with it.. I advise you to do the same.
Night all. Hopefully I’ll be home soon tucked up in my favourite place with my favourite person plus the little furry one.