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Melanoma and me
1/17/2017 Latest post:
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I received the phone call to say Cyril and Nigel had been zapped and it was a success. They would contact me in 3 months for a further MRI. In reality this doesnt stop just because these 2 have gone.
My immunotheropy is very different to Chemotheropy. Its amazing that in the treatment we are all being treated for different types of deseases.
Obviously i can only say about the treatment i receive, but we all wait together.
With mine i go on a Thursday and have a blood test, then see a consultant or registra,
I was sent to this department, having had treatment near my own home town, unfortinatly i had exhausted the line that the local hospital could provide.
I saw the Dr that had sent me to the new hospital who asked how i was getting on with the consultant he had sent me to see.
We have to return to the local hospital to monitor treatment.
The day came for our local visit and again we were waiting in line with many others.
The waiting room we choose is very small, or cosy comes to mind, its very clean and tidy and was once a busy area as it has a reception desk, and this is left in darkness. Maybe on other days its used.
The nurse came out to call me in, we went to the small consultancy room, the nurse is so pleased to see us, again i explain that the knickers are staying on, no knickers no Den!
"Can you please tell the consultant of my wishes, also tell him im in agony with Malcolm, he as become difficult to live with.
The consultant appeared through a door to my left, followed by another Dr who was there for observation, they both smiled at me, i the sort of sweet smile that is so hard to read.
"Ive had a Gamma Knife you know?"
"Yes how did it go?" He was approaching Malcolm i was planning my escape.
As the Consultant touched Malcolm i felt myself squirming, i wanted the bed i was laying on to swollow me.
He put his hands on Either side of him.
"Can my assistant observe?"
Now this lady was not what i could imagine as a student.
She was an Indian lady, but i think she may well have been ghandi's mum or sister, i thought, i dont think there much difference in our ages, but she kept laughing , which made me laugh.
"May i touch it?" It wont hurt "
" now we dont do poke and hope" " you poke it your have to hope i dont go through this roof."
"Have you seen my man?" The consultant was a man of few words
"Oh i havent seen him yet"
The expression on his face said it all.
"I sent you there to see him."
"Oh well still time."
He smiled and said ill see you in 6 month trouble.
And with that he and Ghandi' s relative vanished from where the came.
The nurse walked over and told me i was her star patient. She said she was so proud of me.
We came home, another hurdle climbed.
The next hospital visit was awful, we had missed a month so we had to have the check up with the Dr and the treatment in one day.
Now this for me was awful, first i saw the Dr , the very Dr i had been sent to see from my local hospital.
He was very nice, and the nurse was amazed i was now in a wheelchair.
Malcolm had now become too big for me to walk long distance. (Well even short distance some days)
I told him about my pain, how material feels like tiny sharp needles being pushed in my skin then removed, then pushed in again.
Sometimes its like a screw driver being pushed in and turned around. On a good day its less painful its a fork scratching away at the skin. I imagine someone using a fork to scrap through hard cheese.
I needed medical help. I
had my blood test then 4 hours + to wait to have the treatment.
So what do you do for 4 hour+ in a busy hospital, cos although its busy there is very little to do to pass time.
We went to the enterance hall to sit and wait for my prescription. This cant be given until the pharmacy have your blood tests back.
The enterance of this hospital is busy. They have a huge reception desk, some times it doesnt have receptionist as most people know where they are going.
Opposite is Costa Coffee, thats the start of many shops, ranging from M&S food hall to SMITHS. There is a resturant and a clothes shop, customers always available.
Opposite us are a young couple, no indication as to which one is a patient or visiting. But these 2 can eat! First the sandwiches, then the crisps, oh here come the nuts, more crisps, and a healthy drink each, they then sat with their mobiles, i wondered if they were texting each other, not much conversation had taken place.
Looking around the area we now have a young Mum with her 8 month old baby, now the reason i know shes 8 months is because another lady the other side of her asked.
The sad thing about life now i find people are afraid to communicate, years ago prams werent allowed in shops, they took up too much room.
Baby and pram stayed out side, hence i was left outside Woolworth while my mum and sister went home.
" i feel ive left something behind" said my mum to my sister.
Needless to say on their return, prob 30+ mins later i was still waiting. I had destroyed my pram and was just starting on the shopping in the bottom of the pram when they returned.
In the 50's children were not princes or princess they were children its a wonder we survived. To be honest im glad i was born when i was. My parents werent afraid someone would speak to them, they made eye contact with everyone.
This little 8 month old little girl was just pleased people were smiling at her, her mum was feeding her now, spoon in one hand, iphone in the other. Sign of the times.
No 1. Went to find my presciption, the queue was to the door. A tiny chemist in such a vast hospital, makes no sence.
We thought we would return to the clinic to see how much longer the treatment would be.
It was packed, every chair full, people standing around all looking like they had escaped from the home of the bewildered. Blank faces staring into space, hoping their name would be called soon. Some days its such a sad place to be.
Today was a day of mixed feelings, we are normally at the hospital for a max of 4 hours, today we would exseed that.
Since my Gamma Knife I have difficulty with concentration, its never been great but now i have to control it, also reading is a challenge, so i try to avoid it, im ok for a while but my days of reading for hours are long gone. Writing this is easy because im thinking what i write i dont have to read it to understand.
We found the clinic too busy so went off for lunch, the resturant is on a lower floor so we go off to find it.
Nothing we fancy today.
Back to the clinic, oh this day is dragging.
The waiting for treatment was three hours. We arrived at 9.30 its now 4.00 pm. Still 3 hours to go.
People having treatment is different for each person, it is made just for you. Also Chemo patients have a different pattern to follow. So going for the treatment you might be next to someone who has been having treatment for a few hours, some for a short time like myself, the treatment in this unit is a perfect science.
Due to our long wait we chatted with other like boded persons.
The chairs are arrange in front of a tv, which is normally on bbc, i guess as no adverts. Who knows?
The chairs are uncomfortable after the first 3 hours. All of a sudden they become pure concrete. It is as if the chair goes ridged, it has had enough of you. But ur time on it hasnt finished.
Im a fidget, i have been a fidget for years. Im not going to change, but one thing i do is put my toes on the floor, then sit shaking my leg. No.1 says if its annoying for him, it must be like sitting near a pneumatic drill. No noise but lots shaking, its known by no.1 as my engine is running im ready to go.
In the front row of these chairs sat a man who had been there as long as we had, he shared with us his treatment, but the amazing thing is his
Nose was false. No. 1 kept wispering ( dont look, dont look) the man said how the hospital had saved him. His nose is held on by magnets.
The difficulty with patients having different treatment patterns you might never see some again. We havent ever seen him again. I hope he is doing well.
There is a patient co-ordinator at the hospital.