A Journey With Cancer - My Story

Good News

2008-11-24T21:23:00.002Z

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

2008-10-08T07:47:00.002+01:00

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

2008-08-11T22:50:00.003+01:00

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

2008-08-03T21:19:00.003+01:00

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

2008-08-03T21:17:00.000+01:00

Made with the Virus TI

Small (128) mp3:

Large (320) mp3:

Last Treatment completed!

2008-08-01T15:55:00.002+01:00

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

2008-07-31T16:45:00.000+01:00

That makes me happy!

The next day

2008-07-31T16:39:00.003+01:00

.......... 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

2008-07-31T16:32:00.004+01:00

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.

2008-07-29T07:46:00.002+01:00

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

2008-07-27T20:11:00.003+01:00

Saw this lovely plant on our Sunday Hampstead walk.

Hearing Issues

2008-07-27T20:08:00.003+01:00

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 :-(

2008-07-24T13:39:00.002+01:00

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

2008-07-24T13:33:00.005+01:00

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

2008-07-24T13:30:00.004+01:00

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

2008-07-20T20:44:00.002+01:00

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

2008-07-20T20:39:00.003+01:00

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

2008-07-20T17:49:00.002+01:00

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

2008-07-20T17:45:00.001+01:00

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

Thanks folks!

Pentagram # 1

2008-07-20T17:32:00.004+01:00

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.....

2008-07-17T21:54:00.003+01:00

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

2008-07-17T10:05:00.003+01:00

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?

2008-07-17T09:53:00.003+01:00

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

2008-07-13T20:52:00.002+01:00

website here

Flowers from Laura

2008-07-13T20:14:00.004+01:00

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

Thanks Laura!

Saturday evening

2008-07-12T23:32:00.001+01:00

Went to the movies to see this

Friday afternoon

2008-07-12T12:43:00.004+01:00

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

2008-07-12T12:28:00.004+01:00

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

2008-07-12T12:27:00.004+01:00

But I missed her in the photo yesterday:

Maggie Centre visit with David

2008-07-11T08:04:00.003+01:00

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

2008-07-11T07:43:00.002+01:00

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

2008-07-11T07:35:00.004+01:00

Rawinder, Alice and Stephanie:

These 3 are always positive and pleasant and professional.

The Gift of Love

2008-07-11T07:24:00.003+01:00

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

2008-07-07T20:09:00.003+01:00

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

2008-07-06T23:04:00.002+01:00

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

2008-07-06T13:26:00.001+01:00

Every cloud has one:

Margret sends a card

2008-07-05T18:22:00.006+01:00

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

Friday afternoon and Saturday morning

2008-07-05T17:02:00.004+01:00

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

2008-07-05T16:54:00.003+01:00

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

2008-07-03T16:12:00.001+01:00

Small (128) mp3:

Large (320) mp3:

Not fighting

2008-07-03T15:21:00.003+01:00

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

2008-07-03T15:11:00.002+01:00

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

2008-07-03T15:07:00.005+01:00

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

2008-07-03T15:05:00.003+01:00

But Mark agreed:

Midnight Kissing

2008-07-03T14:58:00.002+01:00

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

2008-07-01T10:34:00.002+01:00

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!)

2008-07-01T10:26:00.002+01:00

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

2008-07-01T10:24:00.003+01:00

It really is a huge team

2008-07-01T10:18:00.002+01:00

Another shot of Alex (shaven this time!):

Nurse Mariamma:

Nurse Maria:

Lena, keeping everything clean:

Doctor Alex:

Blood

2008-07-01T10:13:00.003+01:00

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

2008-07-01T09:34:00.004+01:00

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

2008-07-01T08:37:00.002+01:00

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

2008-07-01T08:32:00.005+01:00

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:

Admissions and start at Cromwell last week

2008-06-30T20:58:00.010+01:00

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

2008-06-30T20:55:00.002+01:00

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

2008-06-23T18:52:00.003+01:00

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

2008-06-20T22:44:00.002+01:00

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

2008-06-20T22:25:00.004+01:00

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

2008-06-20T22:09:00.004+01:00

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

2008-06-20T22:00:00.004+01:00

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

2008-06-20T21:48:00.004+01:00

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

2008-06-19T23:11:00.002+01:00

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

2008-06-19T22:10:00.002+01:00

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

2008-06-17T17:58:00.003+01:00

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

2008-06-17T17:22:00.002+01:00

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

2008-06-17T12:04:00.003+01:00

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

2008-06-17T12:02:00.004+01:00

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

2008-06-17T11:53:00.004+01:00

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

2008-06-15T21:09:00.002+01:00

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

2008-06-15T20:18:00.003+01:00

Acupuncture and Pilates

2008-06-13T22:11:00.003+01:00

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

2008-06-13T22:07:00.002+01:00

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

2008-06-13T10:32:00.006+01:00

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

Photos from the 6th Floor:

Trip to Tate

2008-06-13T10:25:00.005+01:00

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

2008-06-13T10:09:00.002+01:00

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

2008-06-13T10:00:00.004+01:00

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

2008-06-11T17:08:00.005+01:00

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

2008-06-10T10:20:00.002+01:00

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

2008-06-10T10:01:00.005+01:00

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

2008-06-09T20:54:00.003+01:00

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

2008-06-09T20:50:00.003+01:00

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

2008-06-09T20:44:00.004+01:00

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

2008-06-06T20:06:00.002+01:00

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

Minor (?) Setback

2008-06-06T08:05:00.011+01:00

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

2008-06-03T13:28:00.003+01:00

Meera, Aiden and Caroline visit.

2008-06-03T12:46:00.002+01:00

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

2008-06-03T07:51:00.004+01:00

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

2008-06-03T07:48:00.005+01:00

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.

Victoria took my stats this morning

2008-06-02T10:48:00.004+01:00

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

Digestive Tract Issues (non-essential reading)

2008-06-02T10:39:00.004+01:00

So I gotta eat, right (no one wants me to lose weight), but there is a faint undertone of queasiness all the time, so when the food arrives I have to say to myself - right lets eat this nice food. And that works. But the anti-sickness drugs (and the Barium swallow) can cause constipation. That seems to have kicked in now, even though I am drinking loads of water and prune juice and eating figs and prunes.. That in itself makes it harder to keep eating.... I feel a bit stuffed. So it might be on to the laxative(s) and their possible side effects, which makes me a bit nervous since, very possibly, I shall have the profound diarrhoea to look forward to when the chemo stops in a couple of days......

Obsession! I probably need to get out more :-)

Reflexology

2008-06-02T10:16:00.002+01:00

Our friend Jean kindly came to give me the gift of a reflexology treatment yesterday, and I was obviously so relaxed that I forgot to photograph her. :-( After supper I went to sleep early and slept and slept, so I figure it really DID relax me even deeper than I imagined. It was good to see Jean and have a chat too. Thanks Jean.

1.5 bags of 5FU to go

2008-06-02T10:15:00.000+01:00

Pump Music

2008-05-31T21:50:00.001+01:00

Small mp3:

Large mp3:

Lolina changed the line to the other arm

2008-05-31T19:24:00.003+01:00

They like to swap half way through to prevent excessive vein damage (tho' my veins look good) - Simon mentioned it again when he checked in from Chicago. So Lolina took care of it after supper. After she took the line out, I was about to dive in the shower before I was re-connected, but then I realised I had the bandaged rig tube sticking out of my stomach which I definitely do not want to get wet at this stage. So no shower! Carrying on with the body washes as best I can tho', so I hope I don't stink.

Natasha from Catering

2008-05-31T10:58:00.001+01:00

Senior Staff Nurse Lolina

2008-05-31T10:55:00.002+01:00

More flattering pic:

Changing FU bag at 03:00

2008-05-31T10:42:00.004+01:00

We started the treatment late because of the paperwork mishap, so finished up with Sister Barbara changing the bag at early in the morning - so my rest was a bit interrupted and the machine seems to run slow, or the bag is overfull or something. Anyway I shall have to catch up with napping in the daytime from here on out. Senior Staff Nurse Lolina tried a different pump,

but the new pump seems to have a malfunction so we are back on the old pump now.

Lolina thinks this photo is a bit unflattering, but I include it because she looks so professional.

Sister Manjit kindly consented to be photographed

2008-05-30T21:09:00.003+01:00

Joan and Sian came bearing gifts

2008-05-30T21:07:00.004+01:00

Champagne and Marmite - 2 of my favourite things (here mixed - never tried that)

Yellow Roses added to the flowers Nicki brought