Admissions and start at Cromwell last week

Jay admitted me:

Paul took me upstairs to the Oncology department:

My room wasn't ready but we started the hydration in the Day Centre anyway.  Cis Platin can damage the kidneys, so there is massive hydration involved.  Here I am, online and ready to go:

Here is Nurse Teri:

Sam, the clerical officer on this floor:

No Posts for a week

I have been really tired (sleeping a lot) and also feeling pretty nauseous.  It all took me by surprise and I rather misjudged the effects that last dose of cisPlatin would have (a common enough mistake Simon tells me).

So all in all I have just not been able to get to the Blog,  so now - time to catch up a bit

Chemo & Radio at Cromwell

In Cromwell Hospital all day (and overnight) - hydration, cisPlatin, Radiotherapy, hydration, Blood Transfusion tomorrow morning (Simon feels that the red blood count is too low) - so thanks to whoever gave their blood - and more Radiotherapy tomorrow morning.

Everything fine, except no wifi or Broadband, so I will upload pictures when I get back on the so called  Superhighway tomorrow.

V&A - The Supremes

I was close to the V&A so I dropped in to check the Supremes exhibition.  Here is a self portrait in the tunnel from South Ken to the V&A:

Then I revisited the China Design Now exhibition

On the way home I followed David's advice from yesterday and ate a doughnut, whilst I still can :-)

Cromwell Hospital - blood samples

I went up to the Chemo day unit and met Sylvia:

and Leodivine:

Blood was taken and notes were passed. Leodivine was not too happy with the trashed veins in my right arm.  Leakage,  she said.  

I am back in at 09:00 on Monday morning for cisPlatin and Radiotherapy.

Pilates on Thursday afternoon

Then to Covent Garden for a Pilates class with Nick, and after that to the Nordic Bakery to celebrate Minna's birthday:

 Minna works at Midnight to Six.  I enjoyed a Finnish beer:

Golden Beer, made in the furthest north by women.

Maggie Centre

After my scan I went down to the Maggie Centre for a pot of Green Tea and a browse through the library.  I enjoyed that and had a good chat with a really nice volunteer called Judith (I think - she declined to be photographed)

Just as I was leaving I fell into chatting with David, who has been on his Cancer Journey for 5 years, and our chat turned into a very long and interesting helpful conversation.  At the end of our talk we exchanged eMail and telephone numbers, and a couple of the staff said smilingly that we had had our own little support group meeting, which I guess is what we had done.

Nice to meet you David.

Back to Charing Cross Hospital

On Thursday morning it was another CT scan.  Frank put a line in me for the contrast agent, and we spilt blood all over the chair! But the line went in first go.

Zoe helped in the scanner room, she really made us laugh by pretending to get her kit off when she heard the photo was for the weblog/internet.  Then she blushed.  :-)

Yazoo at Hammersmith Apollo

Wednesday evening it was Yazoo - a really great show.  Excellent sound and lights, a very enthusiastic audience and Alison in great voice.  I was touched.  Vince rushed after before the After Show, but I just caught him, and congratulated him .

Some phone pix:

Wednesday visit with Vanessa

Yesterday I went own to Brixton to visit one of my oldest friends, Vanessa:

We got the 37 bus to The Florence and I enjoyed a Lentil Burger and a pint of Weasel.  We sat out the back so that V could smoke (!!).  And had a good chat.

Swan Family on the Pond

We took some crusts of bread to the ponds at South End Green to feed the ducks and birds

View Larger Map

And saw a beautiful swan family:

Fizzy Sake

This is a bit out of sequence, but yesterday I enjoyed some delicious cloudy fizzy Sake at Roka. Described on the menu as "The Champagne of Sake". I took this pic on my phone:

Very Short Introductions

I recently discovered this series of books, and bought one (from the Tate Modern Bookshop) which I read at the weekend:

I shall be buying and reading more in the series.

The View from my Bedroom Window

Before I went in for the first round of chemo we planted lots of flowers in our window boxes. They are very beautiful.  This is a small example:

Monday - full day

I had Acupuncture with Harvey in the morning - he was pleased with my progress and said my pulses were stronger and I was generally stronger - which was good to hear from him. Also I feel stronger.  I have had a pain in my lower left abdomen which he also worked on (Gall Bladder channel, he said).  Harvey also recommended a movie:  In Search Of a Midnight Kiss,

which I will attempt to see this week.

Then I met Nicki - she took me out to lunch at Roka  which was delicious.

Then Pilates class with Nick teaching:   

After Pilates it was straight home, where I made another pressed juice which we shared with Julian who gave me a great healing massage treatment.  Julian thought the lower abdomen pain might be diaphragm stress, and he worked on that.  

Thanks to Harvey and Julian the pain is much better today.

Weekend

A very relaxing weekend.  On Saturday I baked (spelt) bread and made (buckwheat pancakes) which we had on Saturday and Sunday breakfast.  Very green juices made as well, and lots of eating (supposed to be keeping my weight up!)

Sunday we went to Quakers, and enjoyed a walk on the Heath later in the day, where we got a bit of sun.

Nice pic of SFT

Acupuncture and Pilates

Today I had another acupuncture session with Harvey - the stomach point that he put a needle in was quite sensitive.  Then I went on to a Pilates class with Lesley here I did a full 90 minutes, so I was pleased with that.

Afterwards I walked over Waterloo Bridge to the Hayward where I enjoyed seeing Psycho Buildings (with Nicki).  We met Simon Fisher Turner quite by chance - he was DJing in the Hayward Bar.

Hair growth stopped

My hair has definitely stopped growing - I've not had a shave for 3 weeks and my face has NO stubble.  And the same for my head.  Quite a bit of body hair is still there though.  FWIW.

A New Earth

In the Members' Bar I finished reading this interesting and helpful book:

Photos from the 6th Floor:

 

Trip to Tate

After my visit to Stephen I went to Bob Jacobs to pick up some more Essential Fatty Acids, then lunch at Woodlands.

Then to the Tate Modern to see the Street and Studio exhibition. 

Some interesting buildings:

Insurance issues

Yesterday I went to visit Dr Court to get some administrative help.  I have 2 insurance policies hat I am trying to claim on.  One is an American Express Travel Insurance (I had to cancel a holiday in Spain when the chemo started) and the other is a Critical Illness Insurance from HSBC.  Both companies require detailed paperwork from Medical Professionals of course, and Stephen has already facilitated with HSBC, as has Simon Stewart.  Now to get the AMEX paperwork done.

I had an interesting issue with Expedia - I bought (restricted business) Iberia tickets for my Spanish holiday with them, and at the time of booking the terms allowed me to change the flights for a fee, and refund the flights if hospitalized.  When  I tried to claim on this, the terms of business suddenly changed so that I was not able to reschedule the flights or claim a refund.  Be warned!  I shall not be using Expedia again.

Listening Notes

Since I came out of Charing Cross this time I have been listening to Radio 3 a lot when I am at home, which has been an enjoyable and wide ranging experience.  

Recently I purchased the new Portishead LP, and my first feeling when I heard it was the pieces were so short! (Insubstantial?) Once I got past that, and accepted it for what it is, then I enjoyed the sonic mini-world they have have created.  It is odd that I have spent 25 years in the studio making almost exclusively short pieces.  I guess that is pop.

I have never been a fan of Paul Weller, but the revues of 22 Dreams have been so interesting that I was moved to buy that album too - and I have really been enjoying it.  A deep and wide ranging excursion.

Healing with Matthew

Up to Lavenham today for more healing with Matthew.  It was like time and space suspended as the tumour dissolves away. This picture is in the Healing Room:

After the healing it was lunch in the Swan where I enjoyed a pint of Adnams.

Our friend Ken drove us - here he is with Meg, outside the Swan:

Pilates and Massage

After the Cromwell meeting I was feeling pretty good, so I had a bit of lunch (Wagamama)  and then went up to Pineapple for a Pilates class where Lesley was careful that I should avoid hurting the rig tube site (!).  I really needed that class, and felt better for it.

In the evening I had a massage/treatment from Julian.  Also excellent.

Thanks everyone.

Final meeting at Cromwell yesterday

Going along with  the radiotherapy I have 2 more sessions with cis Platin, so I went upstairs to the Oncology/Chemotherapy department to meet Valentina and to co-ordinate things for Day 1 of Radiotherapy.

I got weighed and measured and entered in the system.

Simon with Apple

After CT Scan straight in to meet Simon, who had an Macbook on his desk.  He got me to sign another consent form, of course, and filled me in about the procedure.  Radiation to the base of the tongue and tonsil, and to the lymph nodes on both sides of the neck  Dosage described as "temperate".  Simon also kindly deflated and re-inflated the balloon on my rig tube.  No problems!

CT Scan at Cromwell

As soon as the cage/mask is ready we go into the CT room where I am scanned and a baseline is established, so they know precisely where to aim the radiation. 

The scanner:

Liz kindly took some photos:

Laser alignment:

Hospital #4

Radiotherapy will be at the Cromwell Hospital, where I had a preliminary meeting today:

I locate the department on the LG and meet Radiographer Emma:

Student Sophie:

and Radiographer Liz:

They make a moulded thermoplastic cage, that is the same shape as my head, to hold me in exactly the right place.  The flat sheet that Liz is holding above is warmed in water and then placed over my face for 7 minutes or so until until it has cooled and set.  And the result is:

Home at Last

Honourably discharged by Dr.  Meera I am now at home listening to Radio3.  And very happy to be here.

Minor (?) Setback

On Tuesday, about 16:30,  when the rig tube balloon as being deflated and re-inflated I felt a major pain, but it passed very quickly.  A few minutes later the pain  kicked in again BIGTIME.  I was whimpering and squirming and flinching.  Bad Pain!  I got 5mg of Morphine injected in my Butt, and that gave me relief for a while.  Later on that afternoon/evening the pain happened again (twice).  Once I got a drip of Paracetamol, and about Midnight I got another shot of Morphine (5mg).

I recalled when Nick Burfitt had fitted the rig tube he spoke about the rare possibility that stomach acid could spill into the peritoneum.  This, he said, is extremely painful.  How right he was.

The pain did not reoccur after that (thank you God!), but I developed a real soreness in my abdomen and shoulders.  (For a while I thought the shoulder pain might be from the extreme flinching that I had been doing when I was suffering from the abdomen pain.)  Obviously everyone was concerned.  I had abdominal x-Rays, CT Scan and revisited Nick  in Vascular to check on the siting of the rig tube.  Rig siting seemed fine, and the scans revealed some air under the abdomen - the whole area feeling really weird! Blood tests are taken every morning Some cause for concern seemed to be that the crp markers were elevated. 

Simon Stewart came in on Wednesday and put me on Nil by Mouth (just as I decided  get positive again and try to eat something!) because he wanted to let the rig tube settle down again.

Obviously I was not going home - I was no ready to go home either.  In lots of discomfort - particularly on the shoulder joints.  A surgeon called Katy also visited me and she pointed out that it was referred pain from the diaphragm - same nerve apparently. I am familiar with this from sciatica - I had a pain in my leg, but the injury was in the lower back.  Luckily I could get comfortable by lying down on my back.  No shoulder pain then.  But I could not sit and type. Hence no Blog posts. 

I wanted to avoid stomach pumps and surgical intervention if at all possible. Luckily so did Katy.

Thursday I was allowed fluids and started to eat again.  CRP markers elevated more, though the last blood was from Thurday morning, and by evening I was definitely starting to feel better. Blood pressure was slightly elevated and temperature had climbed a little, but back down nice and low now. But I did say to Simon that I could not really tell what was going on in my abdomen - I felt burned, bloated, hungry and constipated.

Did I mention constipation?  Not only no eating or drinking, but the morphine too.  Thursday evening was my mission to deal with that.  Fluids, prune juice, laxatives, suppositories.  Mission accomplished!

Today I am feeling a lot better.

Uncleaned Rig Tube revealed

Meera, Aiden and Caroline visit.

Meera books a CT scan (to have a look at the Tumour), and more white cell booster. (We briefly discuss dangers of simultaneously boosting tumour growth, but they are definitely in favour of high white cell counts, and I feel the same way). 

They take the dressing off the rig tube and have a look (seems OK).  The ward staff will clean it up and take the stitch out, and show me how to flush it out every day and deflate and inflate the retaining (small) balloon once a week.

 I discuss having the further chemo here instead of at the Cromwell (where I will have radiotherapy) and we agree to discuss this further with Shaun and Simon Stewart.  

Every Tuesday I will be back here anyway after Radiotherapy to attend a Clinic of some sort, so I will see Caroline and Meera again certainly.

Everyone seems happy - I am on track to leave hospital this evening when this bag of 5FU is finished.

Things I have been doing

I found this book in the Quaker Library when I was last there - it stood out at me, and it was published in the year of my birth, so I read that;

I have also cleared thousands of Photos out of my iPhoto Library (in Aperture actually), but the task is still not quite finished. One more full day maybe.

Also I have been dreaming extensively and deeply, which has felt good.

Nurse Maureen

Maureen was on night shift last night, and she took my stats in the evening, changed my 5FU back (last Bag!) and came in at 04:30 to clear an air bubble in the line.  I didn't really sleep after that - I don't know why.  But I feel good, as if I am returning to my body.  Perhaps because Shaun cut down some drugs? Anyway it is good to have an early start.

More non essential reading :-)

Yesterday's news:

I was really blocked up right at the bottom of the digestive tract, so it seemed to me that laxatives going in the mouth were going to be of little help.  Shaun was back from holiday today and he dropped in on his way home. Suppositories!  he said.  Lubrication! he said  And within minutes Manjit appeared with rubber gloves and a couple of Glycerine suppositories.  I told her I would take care of the insertion in my anus, which I did.  I had a good feeling about this, hich I attempted to reinforce with creative visualizations. Then I lay face down, with my arse in the aira bit,  for about 30 minutes, after which time I was able to let it all go.  Result!  Then I felt a LOT better.  Thanks everyone.  And thanks dear readerss for letting me share.

Victoria took my stats this morning

Blood Pressure and Temp normal, but pulse surprisingly high I thought.