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.