Monday, 28 February 2011

Busy morning!

It has been busy this morning. Kieran had a dental appointment and i was meeting friends for a coffee afterwards.
I picked Kieran up from school and took him to his dental appointment. He has an adult tooth coming through but is growing the wrong way. I have to take him for an x-ray at the hospital tomorrow morning to get definative proof for the dentist.
He has dentists agin in April. Other than that, all is good.
I managed to get Kieran back to school and then in town for a coffee within the hour. My poor friends had met at 10:50 am and I eventually got to them at 12:50pm!
They were so patient. It was great to see them.
I also had a call from my manager at work. I am planning to go back in March, sick note runs out on 18th March. As long as occupational health and my GP agree, I will be returning in a couple of weeks.
I am looking forward to that, we need some normality in our lives.

Sunday, 27 February 2011

Billy Liar

I went out last night with Rich to watch "Billy Liar". It was being performed by TVP, a local amateur dramatics group. Rich has been going for the last few months and is hoping to get a part in the pantomime this year. The play was done very well, I was very impressed with Laura, she is one of Richrad's friends and played her part of Barabara, very well.
I went with my friend Tina and her now fianc'e, Lee. I had a little bonus as I bought a raffle ticket and won a saffron cake : )
Watching last night has inspired me to join a dramatics group again. I used to belong to one my mother helped run, many years ago now. It was something I did enjoy.

Saturday, 26 February 2011

Reply from my MP.

I recieved a letter from my MP, Alison Seabeck, this morning.
She wrote to the health minister on my behalf.
This is the reply.

Thank you for your letter of 14th January to Simon Burns enclosing correspondence from your constituent, Ms Debbie Brewer about chemoembolisation for the treatment of mesothelioma. I am replying as the minister for this policy area.

I was so
rry to read of Ms Brewer's health problems. I appreciate how important this issue is for Ms Brewer and other people with mesothelioma.
However, there is no evidence for the use of chemoembolisation for primary lung cancer patients although there is some evidence for possible benefit where the cancer has metastasised to the liver.
As Ms Brewer may be aware, the national institute for the health and clinical excellence (NICE) has not issued any guidance to the NHS on the use of chemoembolisation for the treatment of malignant mesothelioma.

In the absence of NICE guidance on a particular treatment for specific condition, it is for local primary care trusts (PCT) to make funding decisions, based on an assessment of the available evidence and on the basis of an individual patient's circumstances. Individual clinicians will decide on suitable courses of treatment based on clinical evidence available and after discussion with the patient about the potential benefits and risks of the treatment.

The NHS constitution states that patients have the right to expect local decisions on the funding of drugs and treatments 'to be made rationally following a proper consideration of the evidence'. If the local PCT decides not to fund a treatment, then it should explain the decision.
To underpin this right, the department has issued a set of core principles to inform the way the PCTs make decisions about funding drugs and treatments such as chemoembolisation. PCTs are requiredto have in place clear and transparent arrangements for local decision-making on funding of treatments and for considering exceptional funding requests. In addition the department has published good practice guidance for PCTs about the process they should have in place to make decisions about funding and handling exceptional cases. The guidance can be accessed on the National Prescribing Centre's website at

Ms Brewer may be interested to know that we have also set out plans to establish a Cancer Drugs Fund from April 2011 as a means of improving patient access to cancer drugs prior to the anticipated reform of arrangements for branded drugs pricing. We have also worked hard to prioritise budgets in this financial year so that we can bring forward funding to improve access to cancer treatments, ahead of the introduction of the cancer drugs fund. From 1 October 2010, we made an additional £50 million available to the NHS to pay for cancer drugs.
Decisions on the use of this funding are a matter for local clinically-led panels based on the advice of cancer specialists, Access to the funding will be through a patient's treating specialist and patients are advised to discuss this issue further with their clinician in order to decide the best course of action.
Finally, we have consulted on our plans for the design of the Dancer Drugs Fund. Decisions on the implementation of the fund will be taken once the responses to the consultation, which closed on 19 January 2011, have been considered.
Further information will be made available on the Department of Health website at in due course.
Following the spending review, the government has committed £200 million to the fund in each of the three years from April 2011 to support improved access to the cancer drugs.
I hope this reply is helpful.

Earl Howe.

Thursday, 24 February 2011

And life goes on : )

Snowdrop : The symbol of hope for all Mesothelioma warriors.

My oncologist, Dr D, was wonderful yesterday, Very honest about the TOF and the meso.
He is happy that Theo is stable but wants to wait before jumping in and saying this treatment has benefitted me. I trust what he says, he has been great with his support of the Profs treatment.
If there is a difference in 2 months, he will support me in saying that I have responded well, twice to this treatment and the Primary Care Trust (PCT) should consider funding it. I have yet to hear from my MP. She has taken the information and will speak to the PCT for me.
The children and I had an Indian takeaway last night which was lovely.
Kieran had chips, 2 kit kat chunky hocolate bars, a glass of Tango twist fizzy drink, ran about the house and then wondered why he was sick, 10 minutes aftert that he is asking for a snack, obviously nothing serious!

Wednesday, 23 February 2011

Imaging report.

CT Scan thorax, abdomen and pelvis.
History Mesothelioma, assess response.

Comparison made with scan of Jan 4th 2011 (Germany)

The mass at the left apex is reduced marginally in size.
The adjacent mammary adenopathy is stable.
The left hila glands are slightly smaller. The paracardiac node is stable.
The disease at the left base is unchanged.
Appearances in the lungs of numerous broncho centric pulmanory nodules are unchanged.
The trachea oesophageal fistula remains patent. (Still open)

Overall the appearance of the thorax is stable.
There is no evidence of disease in the abdomen.

Conclusion, stable disease.

Theo is tops!!!

I have just got back from my oncologist, Theo is stable.!!
All is looking good, he wants me to go back in 2 months for a scan to compare to the January one as the radiographer compared the one I had in Germany to the latest CT.
The TOF is still open : (
Dr D has said that I should give it one more go then leave it, I think he is right. I do trust his judgement. I will get in touch with Dr TOF and let him know the latest on the TOF. Will it ever close?
Dr D did say that I looked very well, that made me happy. I hope Theo does go away for a bit and give me a break from the stress of the meso...while your doing that Theo, get a coach trip organised and take a few more with you, don't hurry back now : )

Eye test and scan results today.

I got up early today to get ready for an eye test. My eye sight has deteriorated a little and I want to get it checked out. There is Glaucoma in the family and I need to keep ahead of it all.
I left Kieran in the house on his own while I went as Rich and Siobhan are out. He is 14 now and wants to be independent. I laid down the rules, don't answer the door, call me if you need me...ya di ya di yah!!!
The eye test was fine, it seems I have a little eye strain as I have been playing a solitaire game on my mobile phone before I go to sleep. I will need to wear my glasses to put it right.
there is no Glaucoma, which is great and the glasses I have are fine but if I want to get more, I can.
I don't see why I should buy more if mine are fine. I went into Spec savers, they were very good.
I got home, Kieran had been fine. He is so proud of himself.

I have my CT scan results at 3pm today. I think this is the first time I haven't felt tearful and miserable. Hopefully the CT blues won't start.
I feel better and hope that the results are good, no change will be a great result, any reduction will be even better but I am happy with stability.

Tuesday, 22 February 2011

Well, CT results tomorrow, It's half term and I am not sure what to do this week.
Kieran has just got back from seeing his dad over the weekend and is very keen to set up his new game online. So that will be 2 boys in the house glued to their online game!!
Siobhan is spending some time at her boy friends house, good to see her get out and about. She did well with her Valentine cards, selling all 100!
I hope she continues this as she and her boyfriend are very talented.
I have to muster some energy today to get motivated. I have none at the moment. I am hoping to go back to work soon, I have to have a medical first to prove I am fit to work. I have been off work since August 2009, a lot has happened since then.
I am going for an eye test at some point, not sure if chemo affects the eyes but I have noticed a very slight difference, suppose it could be old age too!!

Saturday, 19 February 2011

We all went off to see the film last night. It was a little disappointing as the film "Paul"was a 15 rating and Kieran is only 14. I was very impressed with how he dealt with it. He usually gets very violent and abusive if there are any changes but he managed to control himself.
Siobhan, Rich and David, Siobhan's boyfriend, went in to see the film.
Kieran and I went out to the megabowl a few doors away and had a game of bowling. After that we went into the simulator in the arcade part of the venue. Me being the baby I am, shrieked all the way through the ride.
We met up with Siobhan, Rich and David again and made our way home, not before getting an Indian takeaway which was delicious.
It was a lovely evening, we haven't had a night out together for a long time.

Friday, 18 February 2011

"Paul" tonight!

The lovely contrast drink I had at the hospital, in place of a lovely cup of coffee : (

The CT scan went well although the contrast drink is yuk...makes me feel sick but I managed to get rid of it all.
I will get the results next Wednesday afternoon.
The children and I are off to see "Paul" a film about 2 guys finding an alien. It looks good although Kieran has said he isn't going. The boys were arguing last night, they have no computers today so Kieran's little bit of control os to say he isn't coming with us to see the film.
I have told him thats fine, we are all going, why should he spoil it...... Teenagers!!!!
It is half term now so I suppose we are in for a bumpy ride!

Wednesday, 16 February 2011

CT scan today.

I am off to have a CT scan today, Not sure how many I have had up till now, probably be glowing in the dark soon and have a biohazard sign stamped on my bum!

My friend, Gina is coming with me. We will have a bite of lunch afterwards and then go and see our friend, Rob, who is still in hospital.
He has said that he doesn't want any grapes, he wants creme eggs and mini eggs, No issues there... : )
I will get the results of the scan next week, much quicker than my friend, Mavis, she gets her results a month after her scan.
This is the difference between private and NHS health care. I am in a very fortunate position having health care with my job. It shouldn't be that way but I suppose if there was anything drastic, Mavis would be called right away.
Kieran is half term next week, I am hoping to go to the cinema with the children and see "Paul" the new Pegg/Frost film. Can't remember the last time we went out as a family.

Love and positive thoughts are sent to Gina's sister who is going to have an operation today.

Monday, 14 February 2011

Mr P's celebration day.

I visited my dad's plaque to place a few flowers to remember on this Valentine's day, I also placed some on my cousin, Robert's plaque.
Mr P's Anchor Tribute.
Mr P's trawler tribute.

The celebration day for Mr P was fitting, very sweet, it emulated him perfectly.
His gorgeous wife, Pam, was so emotional, had every reason to be. The wonderful man who had shared her life was gone, she now has to find the strength to carry on. I met her wonderful daughter and son, they are an absolute god send for her.
Pam had done Mr P proud, there were a lot of people at his funeral and many came back to the pub where Pam had organised a wake in Mr P's memory. The flower tributes were on display, a trawler and an anchor. Very fitting for him.
I am going to stay in touch with this lovely lady, She is wonderful x x

Happy Valentines day.

To my wonderful children and kittens, happy Valentine's day.
You bring love and smiles to my life every day.

Also love is sent to all my warrior friends, past and present.

For some it is a very difficult day, Especially Mr P's wife and family who have his funeral today.

Mr P's celebration day.

I am going to Mr P's funeral today, so sad for his lovely wife and family. The sun shining on them will be his smile.

This is the worst part of mesothelioma and any cancer, having to say goodbye.

I am sure he will be celebrated with love and happy memories, such a wonderful person, so cruel.

Saturday, 12 February 2011

Well done Helen.

Stork watching over Amber as she rests after her op.

Amber, recovering after her operation.

Congratulations to Helen who has had a good result from her CT scan. she has minimal change, so happy to hear that. Her and her husband, Barry are celebrating their great news.

Congratulations to Prof Vogl and his wife on the birth of a healthy baby daughter.

Amber kitten is doing well, she is so active and hasn't been a little kitty patient at all. Her and Stork have still managed their rough and tumble.

I took Rich for a job interview today. He will hear by phone if he has the job, I am supporting him in looking for work otherwise he would stay glued to his bed playing world of war craft. I was passing his bedroom door last week when I heard him say he was shocked that a friend put life before WoW, how shocking is that!!! I challenged him of course. He said I wasn't supposed to hear that.... : )

Friday, 11 February 2011

Another week over.

I am off to Kieran's school today for a coffee morning. He is going to have sex education classes and this is to discuss how the children will be taught and any issues parents may have with this.
I went to hospital on Wednesday to see my friend, he has a brain tumour and has had a set back.
He had an MRI yesterday and I hope and pray he gets good results today, all fingers and toes are crossed.

Next week I have my CT scan, I will get the results the week after, I am sure all is ok with Theo and he has settled back in Germany, Well I hope he has! It won't stop me getting the "CT Blues" which is a normal occurrence for most, if not all, cancer patients.

Amber is doing well and getting over her op, not sure what else the vet did but she seems more active than she was before she went.

Wednesday, 9 February 2011

Ria's dad.

My lovely friend, Ria in Australia has lost her dad.
Condolences are sent to her and her family at this very difficult time.
It never gets easier seeing these posts. One day we all hope for a cure.
Love and support are sent to all meso warriors and their families who have lost their heros.

Tuesday, 8 February 2011

Amber is home.

Amber is home and is running around like nothing has happened. Stork has had a rough and tumble with her. to our horror!
Will they ever calm down?
She slept a little this evening but was back to her usual cheeky self within a few hours.
She hasn't had the lamp shade on, her stitches are inside. She is such a sweet girl.

Poor little Amber : (

Amber kitten is being spayed today : (
She has had to suitors hanging around so she must be ready for mating. I felt like a real traitor taking her to the vets this morning. she has been so good with having no breakfast. Stork is like a little lost soul.
I did have a few tears when I left her at the vets this morning.
Kieran has said he wants to come with me to pick her up.
I have her chicken pieces here and ready for when she comes, missing her already.

Saturday, 5 February 2011

Happy Lung Leavin' day to all meso warriors and their families.

Heather in the USA had her lung removed 5 years ago on 2nd February, every year she celebrates this with a big celebration party. She writes all her anger and woes on a plate, smashes the plate and burns it. All the negativity goes up in flames. This is Heather's 5th anniversary, I hope she celebrates many more and one day I will join her in the USA and celebrate with her.
Last year I got paper plates and did it. I am hoping to do the same this year.

Today I am feeling very nauseous, It could be that the chemo is taking affect. It is only very mild and I am sure it will pass very soon.

Wednesday, 2 February 2011

Change hair of colour.

Well...I have done it, the red hair is gone! I was hoping for purple but the colour is now a dark plum colour, not what I wanted but what the heck..... it's only hair, if it falls out, I will go back to my wigs. I will post pictures of the new hair when I get them.
I have called my oncologist for a CT scan, not sure when it will be but I want to see if the treatment in Germany has been as successful as previous treatments.
I am adding a new blog, Julie Bastian, a wonderful warrior from Australia. She has been inspired by Mavis Nye, another fabulous warrior. All blog links are on the home page.

I am so proud of Siobhan, her valentine cards are selling very well, she and her boyfriend, David, designed them, I am so pleased to see she has moved on and decided to go back to her wonderful talent, Well done baby x x Well done to Kieran as well who can, at last tie shoe laces and not forgetting Rich, thanks for taking out the bins!!!