Living With Mesothelioma -My Diary- Debbie went back into hospital again. and a report on my Meeting at Cancer Network

I have come down to earth with a bump today as Debbie has been back into hospital but thank goodness it isnt her Mesothelioma that is the problem but her TOF

Tracheo-Oesophageal Fistula (TOF)

In Tracheo-Oesophageal Fistula (TOF), the bottom end of the baby’s oesophagus is joined to its trachea (windpipe). Without surgical intervention, this causes air to pass from the windpipe to the foodpipe and stomach. It can also allow stomach acid to pass into the lungs.

Child with TOF/OA Child without TOF/OA

Debbie only discovered as she got older which makes hers even rarer.

It causes her to have infection and then she gets  pneumonia . The antibiotics made her sick and ahe started again so was taken back in last night.

We wish her well and have been chatting all day to the warriors as they asked how she was.

She will carry on with Chemo when she is back to normal, but she never rests.


Well I promised I would talk about my meeting yesterday at the Cancer Locality meet.

The NHS from the 1st May 2013 has made the Cancer Network employees Redundant and they have been finding new jobs.

The Cancer will carry on but in a different form. It will be mixed in with every other Medical  illness. Like Kidney and Liver and all other cancers.

So we will carry on meeting in groups but not as we know it now.

I feel it will spoil things and I will hang on in as I feel Mesothelioma will get lost -I might be wrong but I don’t feel Iam at the Moment.

If they realise they have made a mistake they will have lost their expertise as they will all be sorted out into new employment.

GP will be leading this so all Networks will be Amalgamated.

But one thing that is wonderful they are putting together our records and the whole path we are on in treatment on the computer and this will than be shared by the Doctors. So they will always have our records on hand and we wont have to keep repeating who we are and what is wrong with us.

Oh gosh the times we have to repeat to each Doctor. well that will be gone. from 2015.

There will be acute Oncology care so we will be involved in better treatment. Fast track will be used to get us into Chemo and Radiotherapy  and GP Support line.

The have gained all the info from the “In your shoes” this was a great success and they used the same process in every Department, even the surgeons were asked to take part so they now have a clear path to work to and info is being pulled together.

I asked if the Patient records could then go from Our Hospital to other hospitals where we travel for treatment and I was told yes that is what they want to achieve.

The Goverment has given all hospitals Money for software and from 27th February our hospital will be replacing all Radiotherapy machines. And a big And we will have the new Imaging Treatment for Cancer. This targets the tumours better.

On 1st May I have been invited to a Talk on Lung Cancer and a  Demonstration of the new Lung Shuttles in the Radiotherapy.

So Im looking forward to this.


Not a lot has happened today, its been a wonderful sunny day after a very frosty start.

I have been baking cakes and bread and a Shepherds pie for dinner tonight.

Walked the dog and washing all done and put away.

Ray went out as he explained in his blog.

Shepherd's pie

Rays Blog


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