Good News

Last week I had another PET/CT scan at Alliance Medical and saw Guri Sandhu to get the results.  There was no sign of the tumour that was previously visible, so I got my first "all clear".  Obviously we will be keeping an eye on things for some time to come - but good news from the first proper check up!

Returned from Holidays

We had 3 (!) amazing and recuperative holidays.  We went to a Health Spa in the UK for 5 days that was very relaxing, and then we travelled by train to the Austrian Alps, for 2 weeks  in the village of Lech.   Lots of  great walking.  After a few days in London we went to Coverack in Cornwall (where I spent many happy holidays as a child) for a week in a lovely cottage. Also walking everyday. 

I will post some pictures and videos soon.

Small update

Last week my throat was VERY sore, but 2 or 3 days ago I noticed things starting to improve - I could eat better and eat more solid food too.  So I think things are on the mend.  Still no taste, but a hint of taste sensation returning, a glimmer of light!

Today I had the rig tube out and that was another mini-milestone.  My body was glad to see it go.  I have lost a bit more weight, but I am still a very healthy weight - in fact I wouldn't mind to stay at this weight.

Started up my gym membership again - tomorrow I go for a gentle workout.  Going hiking in September so must get in shape.

Hollywood Movies

Saw 2 movies this weekend:

The Black Knight  - I found it uninvolving and a bit tedious. Obviously the Batmobile is cool.

WALL.E -  Genius! Loved it.

A small piece of Bach

Made with the Virus TI

Small (128) mp3:




Large (320) mp3:

Last Treatment completed!

A psychologically important moment.  I know that my throat may get a little worse over the next week or so, but the bombardment by the healing rays has stopped.  I celebrate with a visit to The Listening Rooms, and an Acupuncture session, and lunch at Carluccio's with my wife, Nicki.

Also spend the afternoon playing with my Access Virus TI Desktop

and working on a Gliss mix 

:-)

One more Radiotherapy treatment go

That makes me happy!

The next day

.......... I felt a lot better - massively rejuvenated in fact.  I "enjoyed" (managed to eat!) Sausage and Mash at The Wells, and generally had a very busy day, including a useful Alexander Lesson in the evening with Harvey.   And I finished this book:

though I can't claim to understand it.  :-) 

Blood Transfusion

John was my nurse for blood transfusion day, 

Leodivine had already put a line into my arm before I arrived in my room, where I spent the next 6 hours having 500 cc  of blood dripped/pumped into me.  I finished this book:

Anaemic again.

I had my usual Monday meting with Simon yesterday - he is generally pleased with my progress, but declined to do a video summing up :-)  It is now my last week of radiotherapy.  My weight is continuing to drop, but I am still a healthy weight (not using the rig tube yet), so he and I are not over concerned.  Simon indicated that my hearing would recover - which made me happy! Indeed, there was a noticeable improvement yesterday and today better still.

However I am anaemic again so I have to go into hospital today for 2 more units of blood.  A six or seven  hour process. Thanks, whoever donated this blood.  

My radiotherapy has been moved to 09:00 to allow time for the transfusion in the rest of the day.

A beautiful plant

Saw this lovely plant on our Sunday Hampstead walk.

Hearing Issues

After the last dose of chemo I seem to have lost some high frequency from my hearing, which is upsetting, although I think it is improving as the week goes on.  I am also getting occasional high pitched whines in either ear.  This tinnitus doesn't last long and isn't very loud, but still......

Obviously I will be quizzing Dr Stewart on Monday.

No appetite :-(

I can't really face much solid food, but I am drinking fresh Juices and Fruit shakes with Food Supplements and Soups so looking after my body as best I can, with gratitude and compassion for all that it has gone through.

Tuesday was a busy day

Woke up on Tuesday morning to find the rig tube was half out, and then when I tried deflating the balloon there was no fluid in it.  I called Simon for advice and he had me come straight down to the ENT clinic at Charing Cross, where I waited a bit nervously until the very capable Isabella took the old one out and shoved a new one in.  It was a bit of a push too as the stomach wall had already started to close up.  But went off quickly and painlessly.

I had already called the Radiographers and arranged to see them later, so everything worked out fine.  

Very tired - got home at 19:00, watched The WIRE series 5 episode 1 which I had recorded the night before, and then slept for 12 hours.

Chemo on Monday

Chemo "takes it out of me" I guess - that's why there's been no news.  Anyway it went off fine and Freda looked after me all day.

My blood tests from last Friday showed a slightly raised red blood cell count, so I didn't need blood this time, which was encouraging.  Left the hospital in the early evening.

Tomorrow

Tomorrow I get the last dose of chemo (cisPlatin) and possibly blood (if I need it), so I will be in the Cromwell Hospital most of the day.

10 more days of Radiotherapy  (20 days completed).  There are marks on my neck now (like a medium sunburn - we are treating it with a mixture of Skin Oils and Aloe Vera) and the inside of m mouth is getting a little sore.  Not too bad though, not too bad at all.

Appetite diminishing

It IS getting harder and harder to eat (psychologically as much as anything) but I did enjoy a Masala Dosa at Woodlands this lunchtime.  Somehow it seemed to agree with me, even though I can't really taste anything. Lots of smoothies and juices and soups at the moment.

Infection around rig tube

The last few days it has been a bit sore around the rig tube site.  There is obviously a small infection.  I mentioned it to Nurse Mary she took a swab and had it analysed and matched to various antibiotics.  I forget the name of the bacteria.  Anyway I guess Simon thinks I have had enough antibiotics so I didn't get any.  Mary suggested a dressing, which I tried, but somehow the infection seemed to fester under the dressing and became even more uncomfortable, so yesterday I dispensed with dressing and after I had cleaned it again Nicki sprayed the area with colloidal silver.  (Repeated twice a day) Now it seems to be improving I am happy to report.

Adam and Dana send a card

Adam and Dana who manage me in the USA sent me a nice card.

Thanks folks!

Pentagram # 1

A five pointed star popped into my mind in an exercise I was doing with therapist Claudia.  I wanted to draw one and a little research revealed that it can be done with straight edge and compass (this fact has been known for 2500 years approx, but was new to me). So I went to Ryman and bought the equipment.  Above you see my first attempt.

And.....

It is not that we should be collaborating more, and are in competition, it is a question of realisation.  In actual fact we collaborate enormously.  We are not isolated. 

The cake is collaboration and the competition is just tiny swirls in the icing on the top.  Her icing swirl is higher than his icing swirl.  But the cake, the cake itself is all co-operation and collaboration.

I cannot afford a doctor or a therapist to myself.  Thank you all the other patients and clients who are co-operating with me to share the doctor & therapist. Thanks to everyone else who buys electricity, and water.   Thanks to the tube passengers who share my journey (and the cost of my journey).   I cannot do it alone.  

etc. etc.

We are constantly collaborating and co-operating, yet somehow we forget, we deny, we ignore it.  What a terrible falsehood, and where is it leading us in our isolation and in our denial?

Society - a short comment

A few years ago I marvelled at how many people are involved in my Breakfast.  This Blog brings it home too - what a huge web of relationships we are all in.  Easy to forget sometimes.  I was reading a collection of writings by Albert Einstein and he pointed out how indebted to society we all are.  Few of us grow our own food or build our own houses.  Culture and Language we owe to society.  

Somehow in the last few decades it seems to have been possible to adopt the (crazy) idea that it is possible to live alone and outside society - simply exchanging MONEY with society to get the things we need.

How different from life in the village when we would have known the baker, the farmer, the miller, the carpenter and their families.

The bonds and inter-relationships of society - so important and so neglected.

Danger to Hearing?

When I met David at the Maggie Centre he was concerned to let me know that he had been told his Radiotherapy might leave him deaf.  Obviously I was concerned, but I presumed Simon Stewart would have told me about this - he knows what I do for a job.  So last Friday I spoke to someone in the RT clinic at the Cromwell and we looked at the  scans of my head.  He indicated that there was no real radiation in the area of my ears, and figured there was no danger.

I expressed my concerns about radiation damage to my hearing to Simon when I had my usual Monday meeting with him.  He has no worries about that. 

The danger, he says, is the cis Platin.  (One more dose to go)

Last week's favorite record

website here

Flowers from Laura

Laura sent me some (pictures of) flowers. I thought I would share them with the Blog:

Thanks Laura!

Saturday evening

Went to the movies to see this

Friday afternoon

After RT, on the way to Pilates, I dropped in at the Tate Britain 

where I had a look at this.

and then saw some of Martin Creed's Work #850

I was very intrigued with this and took a bunch of pictures which you can see here

Then it was a Pilates class with Sandra

Friday - blood sample

Radiotherapy was running a bit late -  temperamental machine (!), so I had my blood test first and Mary told me about the pods they put the samples in that zip the stuff around the building.

Cool:

But there was an issue (some pod stuck in the system somewhere) - the advantage (opportunity in diversity) was that we walked over to the lab and I meant John and Josh:

Lina also on Radiotherapy reception

But I missed her in the photo yesterday:

Maggie Centre visit with David

After AT I went down to Charing Cross Hospital Maggie Centre where I had arranged to meet David. We enjoyed a cup of tea and a chat.  WE met a number of other people here too (David talks to everyone!) including Rachel (psychologist) and Marcia (Massage Therapist).

Marcia:

Marcia had a no show and she offered me a relaxing back massage, which I immediately accepted!   Thanks Marcia!

RT machine glitch

Yesterday the machine was not that happy, and kept stopping.  I was just about to suggest that they switched it off and switched it on again when one of the guys came in and said - we're going to switch it off and switch it on again.  :-)

That took a while but it seemed to do the trick.  Treatment successfully completed I set of for my Alexander Technique.  I was late, but Harvey was very understanding, and kindly extended the lesson to accommodate me.

Radiotherapy reception team

Rawinder, Alice and Stephanie:

These 3 are always positive and pleasant and professional.

The Gift of Love

Before I had the blood, on Monday, I was feeling pretty low, even a bit depressed.  Tiredness and depression go together I know, and when I asked myself WHY I was feeling depressed, I thought - it's because I've got cancer, which seemed like reasonable grounds for depression! So obviously I felt that because I was a bit run down and tired, but also I had been using my energy to deny my depression I realised.

In the UK people donate blood freely, as volunteers. So some person (people) are helping me without knowing me. That is a gift of love and I realise it. However I didn't enjoy getting the blood - I felt a bit queasy and uneasy about it all day.  Everything went fine though.  

Ting put the line in:

And David took care of me most of the day:

I had 2 units of blood and that took about 6 hours, then I went down for radiotherapy.  The next day I felt much more energised, so I guess I really needed the blood.  Thank you, whoever donated.  Whoever donates.

Monday's with Simon

Today I had a scan and radiotherapy. 

As usual on Monday I saw Dr. Stewart after my treatment - he is generally happy with my progress, except that my red blood cell count is down again.  Anaemia. Obviously he doesn't like that, so I am having more blood transfused tomorrow, which means an early start at the Cromwell.  2 bags of blood at 3 hours per bag. Boring but necessary.

The taste of things

For quite a few days now (ever since the beginning of the Radiotherapy?) everything basically seems to taste of grease.  The food tastes do come through a little but as if everything is somehow covered in (cold) grease.  Weird. Hard to describe it any other way, but it is not a great experience  :)

Just so you know.

Anyway I am not losing weight so far which is good.

Silver Lining

Every cloud has one:

Margret sends a card

Margret, my European Manager, sent me a nice card:

Friday afternoon and Saturday morning

We drove up to Lavenham to visit Matthew, for a nice dinner with him and his wife Sarah, and for healing.  A statue in their garden: 

The next day I checked out Sarah's new studio room - very beautiful ( I will be back in August to help install the equipment) and we dropped into Lavenham church to check out the interior:

Radiotherapy 10 of 30

Treatment started with a scan (once a week now to check my alignment in the machine), and went off uneventfully.

Afterwards it was time for Nurse Mary:

to take a blood sample (this also happens once a week - results to my meeting with Simon Stewart on Monday)

My blood:

Hymn of Thanks

Small (128) mp3:




Large (320) mp3:

Not fighting

Some people have spoken about fighting the cancer.  I am not really concerned to do that - it does not seem the right action.  Of course I want the cancer to be gone, but this is not a fight between me and the cancer. The tumour is a part of me.  It had a job to do, that job is done and now it is disappearing - that is all fine. I do not feel that I am in a fight with the tumour though.  Perhaps that is the influence of the pacifist Quaker meetings? 

I accept where I am now, and I am happy the tumour is disappearing.  

The sun is shining and the flowers are beautiful.  I enjoyed my lunch.

Thanks to the many wellwishers

As news of my journey starts to spread I have had a lot of positive wishes and encouragement from people who I don't directly know (who know me through my work).  Just to say a big THANK YOU to everyone for this.  It is appreciated.

Nurse Mary advises

I saw Mary and she gave me some Skin Oil and Aloe Vera to mix together to help protect my skin against the burning from the healing rays.  That is a good mixture.  (I am also using Aloe Vera juice twice a day, trickling down my throat to ease and protect the inside, which is starting to get a little sore) She also advised on mouth care products that I may need as we go down the road on our journey.  I forgot to get her picture, but I will see her on Friday for a blood sample and perhaps that will be a chance.....

Amy declined to be photographed

But Mark agreed:

Midnight Kissing

Went to see In Search of  a Midnight Kiss at The Everyman with Nicki.  It was good to go out because I missed 2 gigs last week - I just wasn't feeling up to it.  (Goldfrapp at the Royal Albert Hall, and Trinity College Choir at St Johns Smith Square).  Also missed Grinderman last night (same deal, just not quite up to it).  

Anyway, I enjoyed the movie, but it was very hyped before, so my expectations were very high and I was perhaps slightly disappointed.

Out of the Cromwell

Nicki me me at the Hospital and we had a late lunch at Wagamama in Earls Court Road.  Then we walked over to Harvey where  had Acupuncture and Nicki was booked afterwards for an Alexander Lesson.  I started to feel very tired (had not slept that well on Monday night, because of endless hydration and reading Cleaver)

Radiotherapy round 2 (of 30!)

Today (Tuesday) I met Christian:

and Emma:

Same deal, scan then treatment.

It is a bit weird being fastened down and unable to move my head at all, but I do relaxation and go to an internal safe place.  Also, whilst receiving the treatment I summon up my own healing enrgies to calm and soothe the irradiated tissue and to encourage the tumour to shrink.

Nurse Piia

It really is a huge team

Another shot of Alex (shaven this time!):

Nurse Mariamma:

Nurse Maria:

Lena, keeping everything clean:

Doctor Alex:

Blood

My red cell count was low, so Simon wanted me to have some more blood.  Here it is:


Also Jason brought me breakfast:

Risa, the oncology nurse on nights, checked me out:

Arvin kept checking my Vital Signs:

Angela looks bossy:

One night in Cromwell Hospital

Back up to my room for more hydration (and more and more)

Two more nice nurses looked after me.  This lady's name - I've forgotten (blush):

and this is Aida:

Tina gave me a book to read during Radiotherapy.  I read it today:  

Thanks Tina!

First Radiotherapy

I met Abdullah and Caroline

and they set me up for the first treatment:

Every day this week I have a CT scan to check alignment, and then treatment from the healing rays.

Monday 23 - a day of IV pump and RT

Pretty soon I got moved to a room, and Alex the Oncology Nurse and Dr. Adam came to visit me:

Bernard from Hotel Services brought menus and lunch:

Sylwya kept everything very clean:

Another Alex checked up on me: