A Diary of a Mesowarrior Living With Mesothelioma -Keytruda Day At The Royal Marsden and my dieing swan act


driving-in-fog-3-small

Yesterday it was so foggy as we left Seasalter at 6am but not the pea souper of Monday it was clear in many parts and our journey to the Marsden was so good, just a couple of hold ups but on the whole good.

I had to have a scan at 8.30 so I asked if I could have my bloods done first and lucky enough Lorraine was free to do that. I said “I have been here so long Im ordering you around now”

We went to the scanning dept and I started drinking my water and signed in. If the scanner is in use upstairs we go to the one down stairs.

They are redecorating and there are new fire doors being fitted. I was pleased to see that they were fitting new frames as well as the schools surveys missed out the fact that there is asbestos in the frames, a fact I was told at a conference that amazed me.

Anyway I was called for my scan and it was a new machine. Weird it wasn’t a Polo so much as a half MRI. it is shaped and when i was right up to the scanner it was claustrophobic.

Then Breath in and hold and it seemed an age before I got the breath out.

All done so we went back to see the Doctor. after having my PIC Line cleaned.

I explained about my funny turns and he said to first try and bring a sandwich as Im getting up early and having breakfast earlier than normal.

All rashes cleared and looking healthy but he said my skin was dehydrated still so keep using lots of cream and drinking fluids.

With that we left went down the lift to ground floor and I did a dieing swan over the rail of the basement stairs. I was really going out and a nurse came by and she got me a chair from the restaurant. They are new ones and she got told off. I heard he explain why she wanted it.

I sat down and the it was 2 nurses making sure I was coming back and talking ok. The 3 nurse appeared with a wheelchair.

I said I was ok and really didn’t need that. Why are we so stubborn when it comes to wheelchairs.

They all walked with me then until I sat in the restaurant and they left me safe.

I had a yoghurt and off back to Oak ward. I asked to see the Doctor. and he sat while I explained what had happened.

He said that the drug is causing different things and the rash, the fainting (due to a gland and the thyroid) is one of the side effects. It is also causing Clots and inflammation on the kidney and liver. This is why it has to be trailed properly ti find out what the long term side effects are as 6 people have died, not from cancer but from the drug.

My results from the scan were not through so I have to wait until next Mondays meeting where they will do measurements.

We then went down and had a lunch after saying goodbye to Richard and Lynne. Richard is doing well on the Verastem trial . Weird that it is doing so well in Phase 1 as drug hasnt done so well in phase 2 with the placebo.

But Verastem are working very hard and will bounce back as they have got the right idea and use the stem cells. They are developing drugs to treat cancer by the targeted killing of cancer stem cells. Cancer stem cells are an underlying cause of tumor recurrence and metastasis. Verastem is developing small molecule inhibitors of signaling pathways that are critical to cancer stem cell survival and proliferation: FAK, PI3K/mTOR and Wnt.

Their latest statement http://phx.corporate-ir.net/phoenix.zhtml?c=250749&p=irol-newsArticle&ID=2102659&highlight=

I enjoyed a lovely bread and butter pudding and did feel very well again if a little head achy.

Ray had rice and just the sauce of the chicken sweet and sour as he has a very painful mouth after having his front teeth out. The had broken and so it was just the roots which wasn’t an easy extraction bless him.

With that we was able to go back to Oak ward and wait  for my drug which did come up at 3.00pm.

A woman was having a lovely foot massage as they do so many things at the hospital for the patients comfort.

I was intrigued as the oil was gently rubbed in and each toe was worked on then the foot and then the ankle. No wonder the patient went off to sleep.

All done we left and said goodbye, A doctor stopped to talked to me as we left  and I  said I didn’t know how it was as I didn’t have the scan results but he said there wasn’t anything to worry about he felt confident. Hmmm I feel he couldn’t wait and had had a sneaky look.

Oh well i will have to wait and not let scanexity creep in.

Journey home was good and we were in early and had a great evening

It rained all night though. So heavy but no fog.

Off to visit my Son and DIL as we are then on route for a conference in Birmingham Thursday. No time to be ill.

I have got to share this with you as Ray and I loved it so much the romantics that we are

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2 thoughts on “A Diary of a Mesowarrior Living With Mesothelioma -Keytruda Day At The Royal Marsden and my dieing swan act

  1. Well, that sounded a pretty traumatic day for both of you…. but as always you are still smiling! You are so brave and amazingly strong about everything you go through. I’m in such awe of you. You put me to shame , feeling tired and motiveless and arthriticy achey these days. I cant complain really its nothing compared to you and so many others. Love and best wishes, always in my thoughts xxx

  2. HI Mavis, hope you are feeling better, probably best no more swan acts from you please. Plus many thanks for the info on the verastem trials, wasn’t aware there was still a phase 1 going on, thought they had all been stopped. Take care of yourselves and hope Ray feels better soon.
    thinking of you both
    Amanda

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