Moving on

A perfect Sydney day 28 degrees
Enjoying warmth and possibility of moving to Wolper on Wed to spend some BUPA dollars!
Had shower today and walked assisted to toilet
All small stuff but a deal to me
Laurel and family support immeasurable
Love to all here and in UK

Hooray for Pete

http://petertrayhurn.blogspot.com.au/

Peter Trayhurn has manged to become all clear which is a remarkable achievement.

I'm still in St Vincents being cared for by Laurel and family. Laurel bought in photo albums – oh how time slips away – Family so important and I dearly love those precious moments we have had.

Had a PICC line put in today – simple and very little pain and will save more needles!

Blood red cell count low so 1 bag of blood overnight then an endoscope tomorrow with probable stent. I've argued it won't boost appetite but hopefully it can't hurt!

Peg tube is ruled out.

I look like I could do with a wash and brush up!

Banjo boy

Thanks to Laurel's unending patience spending hours in uncomfortable chairs and multiple visiting 'team' members we seem a little closer to resolving feeding tube. Finally GI surgery team are involved and it seems a peg tube is the go.

Still very weak from lack of eating but bowels seem to have cleared somewhat.

Jack's got together with some other hip musos and formed an early jazzy dixie group - he bought a banjo so that should be fun!

Lizzie mid HSC so all go....

Reflux is main issue but seems ok tonight - hope that doesn't jinx it!

All a long way from Duderstadt but hopefully on the right  track.

Nasal update

The nasal feeding is unbearable with vomiting on each movement so I asked Prof Epstein to look into it.

They were talking of looking at adjusting position at xray but honestly it's been a day and no benefit so I mentioned to Rob the nurse here that I was going to ask for it to be removed.

In seconds he'd pulled it out and I'm a free man! Awesome! We'll both probably get into trouble but hey it's my choice.

Waiting next then on Jejunostomy.

Water, water

Lizzie's year 12 graduation evening and I'm back in St Vincent's.

Dehydration has gotten the better of me again. The 'chemorrhea' still continues so along with nutrition we are looking to improve both.

Tumour markers for CEA in blood test has dramatically improved so the chemo is working – just need to get a bit stronger to push on.

CAT scan results show good reductions in metastases so everyone positive. Luckily they didn't scan brain as I'm watching back to back Masterchef so assumed it spread there!

One result shows blood clots on lungs which could explain lethargy so injections to remove those will start today.

Also enjoying doing a quick job for the studio.

So in over the weekend rehydrating and being fed through nasal tube (whoever invented that is evil!) until we hook up Jejunostomy feeding tube next week.

Hope this gets me up and about. Only 10 weeks ago I was swimming in the gym!

 ________________________________________________________

On my past Duderstadt Dendritic Cell treatment for those interested:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.
 

Fathers Day

Father's Day on Sunday. Annual Toblerone and scratchies treat!

Extremely dehydrated and struggling with energy. Believe chemo diarrhea to blame so called district nurse who agreed i needed rehydration.

Called ambulance and spent night in ER at St Vincents – plenty of bags of liquid and drinking water.

Moved to freezing cold room next day, listening to people 'ahead' of you in disease is a little disturbing with families being told of their imminent demise – next time I must remember to use the BUPA card!

Still no real appetite. Weight at 54kg but that allows for extra liquid.

Stopped chemo for now and have appointment to discuss next steps on Monday.

 ________________________________________________________

On my past Duderstadt Dendritic Cell treatment for those interested:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.

Week 2, 3rd Chemo

A visit to Sacred Heart to see Prof Chye. Big thanks to Laurel, Jack and Lizzie for getting me there in one piece!

My legs are pretty weak – not good for getting up after my unsteady comedy slip into the bushes in front garden but ok for walking.

Not much to report but Chye is going to prescribe Megace for appetite to replace Dexamethsone. They are currently trialing Megace v Dex at Scared Heart but I'll not be on the trial so at least I know its not a placebo.

Still tired but enjoyed a few sunrays in the garden yesterday.
____________

On my past Duderstadt Dendritic Cell treatment for those interested:

Not sure how much it has benefited me or how much of the four or five months of strength was due to coming off chemo but I have no regrets regarding the decision and am glad and hopeful we may have been a small part of developing this immunotherapy.

Interesting note From Claire's blog 'As Prof proudly said to Claire, "You are officially my longest surviving non chemo patient"'

Below are a few blogs for others on the journey.

Great news for Kate MacRae who had a clear scan. You can read her story here – Date for Kate

Peter Trayhurn's blog is in depth  – he's over in Germany now and also caught up with Claire in Duderstadt.

My own Duderstadt DC treatments are linked here.