Better again ! Thursday 27 Oct

Pain even less today.

I was high as a maniac yesterday, so I'm reducing all my meds as permitted. But very very slowly so i don't mess up.

Some take 3 days beforte the body recognises the change..

I'll add photos later.

It's funny that my mind has some aspects of a goldfish.

If I feel bad I suddenly am convinced that 6 days is all I have

If I feel better, FLIP, plenty of time. No worries in the world. 

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I am very lucky to have a friend in exactly the same situation. He started with Bowel cancer the same time as me, but it spread so we have tumours ans longevity in the same places.

It is terrible really to be sort of happy to have a friend who is sick, but we both feel happy to be able to share so closely. 

You might think my online humour is bad, but you want to hear how terrible out in-jokes are. Actually, you really don't!!

 

I' have had a wonderful 54th birthday

I feel so much better today. My new drugs are working at last. It is ok not being able to get out of bed because you are too tired (kind of), but it is awful not being able to get out of bed because it is so painful. Now the pain has gone, AND I’m not too tired.

Wonderful!!

 

I’ve had a wonderful happy day today. Lots of cards, lots of happy birthday cards and phone calls. NO PAIN!. I was well enough to go for a family meal out, Mom Dad Brother & children  Christine and our children.

I had so much fun chatting and circulating and taking photos, that I was happy to let my meal go a bit cool. And then I enjoyed a still warm, very large generous meal of Beef, Ham and turkey followd by a ton of vanilla ice cream

Great birthday!

 

Tony

I'

Much Better Today

Well, taking morphine  for a few days didn't do the trick, but today  I feel much better. Trivial level pain and a little bit of energy.  So it cant be the drugs! It must be my brilliant friends on the internet and their wonderful entertaining amusing, so nice, birthday wishes.

Thank you all!! xxx (even to the men)

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I perversely really look forward to my hospital visits. I find it all so interesting., caring informative people and lots of astounding technology, and I actually get to use it.  I'd really love to have a career in related research!

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I had the tumour in my spine zapped - killed - with radiation.   First I lay on the bed of a sophisticated x-ray machine that circled my body slowly under and over the bench, for just 5 minutes, and hummed gently and relaxingly. Another minute and I would have been sound aleep.  This was to ascertain the exact co-ordinates of the tumour (T2; in my back just at the bottom of my neck, not too close to the spinal cord), then a ten minute break while they did some mathematical calculations.  After that, another futuristic machine did something similar with a huge armature rotating slowly around me, burning out the tumour. 5 minutes and then time to go home. No sensation in my back. No side effects during or after. Even the next day and subsequently, no side effects. It is as if I'd never had it done. Brill!

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I'm using a morphine patch  plus for the time being a maximum strength cocodamol tablet. The pain eminating from my sternum  into my chest (UGH) has gone, revealing a lesser pain eminating from my 5th down right rib. This pain is a real bit of a ...pain!  It is not there all the time, but starts when I get out of bed, then takes 2 hours before it goes away.

.One way I like to monitor myself is by timing how fast I can climb the stairs. Yesterday I was about as fast as a good looking snail, maybe 2 seconds per step. Today I'm good like sn older person, maybe 2 steps per second.

I can get around again. And I'm just a shade pleasantly high with the drugs - and the birthday greetings. I feel so good.

I can't easily sit by the computer to type, so I got myself a cordless mouse and keyboard which I can use lying down. along with my 46" monitor - just to make you jealous ;-)

Tony Jeffs x

Hospital Update

Health Update

I saw my consultant today.

He suspects the person who wrote the report on my brain CT scan is getting mixed up. Old irradiated inert tumours can look the same as new active ones. So perhaps I don’t have a brain tumour at all. He is going to arrange an MRI scan which will provide him with more detail.

 The tests they have done give no indication of my serious sternum pain, and there is no other test that would help, so all they can do is give me stronger give me pain killers. For now, it is co-codamol.

 They couldn’t explain why I suddenly became so ill so suddenly on the 19^th Sept and said it was just the progression of my disease.

 He was brave enough to answer my question on what he would estimate as my life expectancy. He thinks it will be several months rather than longer.  Strangely I don’t feel emotional about that. My initial thought was to invest my money in instant access accountsrather than higher interest 5 year bonds!

 They are going to irradiate and destroy my new spine tumour on Monday. 

My hospital and doctors are brilliant!

Much better!

I feel much better today. J.

I have a bad bruise type ache in my sternum though making it v uncomfortable to get out of bed or a chair. I think it is caused by the large amount of fluid pressing on my lungs. Will see consultant fri.

Ive borrowed an electric under mattress lifter like they have in hospitals, which helps lots. 

I didn’t manage to go to lunch with the 6 girls last week :-(.  Darn - I left the house walked a hundred yards, sat for a rest on a tree trunk, and realised I wasn’t well enough. But one is coming to visit me tomorrow. Cool, huh J

I’m trying to discipline myself to do some more painting, but keep finding excuses not to.  Being not good at it, and seeing it not turn out how I want is very frustrating which makes it stressful to start.

For example, I did a charcoal drawing of an attractive girl I know. The result was a good likeness, but it made her look really old and not good looking. I don’t have the insight to see what is wrong with it. 

 It’s my 54^th birthday on Thursday Oct 15^th. I usually ignore birthdays, but decided I might as well use it as an excuse to go out.  Thursday will be a carvery meal with Mum, Dad, kids, brother, kids. In the local pub. At 3.50ukp for  huge portionsBeef, Ham, turkey, and as much Veg as you can eat, it is both the cheapest and the best food around. The only reason that we don’t go there more often is that it is the same food every time.  

On Friday it will be a lad’s night out, celebrating with friends. Another steak meal in town.  I’ve made it clear to all that I will be going home early, about 9.30, as being ill, I get worn out after that. It’ll be nice though.

Two of my friends haven’t spoken to each other for 10 years and I sense there is some kind of tension between them. I don’t know what it is and don’t want to get involved.

… but it’ll be interesting if they both can make it.

 I was necessarily rude personal talking to Mom earlier. Her back is starting to  bend a little.  I explained that she looks good, but will look terrible if she becomes hunched, so she must see her doctor and ask him about a back support to keep it straight.

The shock of me being so direct must’ve done the trick. She made an appointment straight away.  deed well done!

Information from Consultation 30 Sept 09

This sounds bad, but is actually encouraging. Crucially, if my lung tumours had been growing as I'd expected, I wouldn't have long left.

Results:

• Lung tumours not growing. Fluid pressure outside causing breathing probs. Can be somewhat alleviated by managing my steroid dose.  Dr Agred
  
• No point in trying to reduce my steroid dose to recommended levels (I'm on 8mg. recommended is 1.5). It makes me very ill, and isn't going to extend my life. Better to take what i take and enjoy quality of life. Dr Agreed with this.
  
• One tumour in brain. Bad news. Small. When I see the brain doctor, he will want to irradiate whole brain. I won't accept this because 1)it will make me stupider and  2)imo it wont protect against further brain tumours since seeding source is in my chest, not my brain.   I disagree with the hospital over this and I'm sure I'm right. I'm perfectly happy to pay to have the single tumour targetted with radiation. Targetted has worked well so far.
  
  
• Tumours in liver have grown. No details
  
  
• New probable tumour in spine. small. To be irradiated asap before it causes me pain or other problems.
  
  
• I never asked about the possible rib tumour that was mentioned last time
  
  
• Recommends I stop taking Sutent as it doesn't appear to be helping.
  
  
• There is a new drug, not fully approved yet, but available through special arrangement at another hospital. Doc will see if they'll treat me, and allow me to decide whether I want it.
  

This is a new doctor, Diane Tootan (can't remember but her names rhyme). She is both stunning, and one of the best doctors I've seen. Great interactive communicator.

More info from my brain doctor on 9 oct.

And ...my birthday on 15 oct. Don't forget ;-)  54 yrs - you can forget that part!

Conclusion:

• One very important good result for lungs.
  
• Lots of moderately bad results for other places.
  

Sicker

I'm sicker. :-(

I met friends in town today. I was so tired that I sat in a chair at reception and slept while they toured an antique and v interesting courtroom / public function building. After that I went straight home and slept some more.

I'm on a high dose of steroids and until last week that levelt has made me immune to the symptoms of all ailments. While on 5mg/day, I invariably feel well and healthy. Always. But uniquely not for the past 4 days.

I'm seeing my doc a week today. I suspect its a constriction in my lung that I knew had potential to happen as a 'cotton wool' tumor grew. There's an odd noise when I breathe deeeply. It will show on my recent ct scan. Maybe they can fix it with LINAC or surgery.

To

19 Sep 09

Last night we had a great evening. Each of the four of us lads had selected our top ten records. It was a revelation to discover that Alan is a big jazz fan.  And John was utterly dismayed when I presented Tommy James, Crimson and Clover as one of my choices. 

This morning I felt really ill as in a bad cold. This is very  odd - I never EVER feel ill on 5.5mg dexamethasone. I wonder if my tumours have grown suddenly. I have a wheezy chest on 5.5mg.  That level of Dex renders me immune to the perception of all ailments.

My new big tv arrived for my bedroom :-)

Tomorrow, we're off to visit Brian's ex-wife in Pwhelli. I hope I'm well again.

19 sep

t