Monday, 30 July 2012

Catch up a thank you to the coffee fairy!

I haven't been on much as I have been sleeping most of thew time, I thought it was about time I caught up.
First things first, my lovely "stuff" monitor, Jan C thank you so much for the coffee this morning.


I went on facebook this morning and put my status as "I wish the coffee fairy was here to bring up a cuppa in bed".  I didn't have to wait long, Jan C sent a lovely picture, thanks Jan, it's perfect : )

Today I am off to hospital for a cross match of blood as I have another blood transfusion tomorrow.
I had a phone call on Friday from Ann and Bill, 2 lovely warriors from our South West support group.
The have offered to tak me to and from hospital today and to drop me off tomorrow for the transfusion.
There are some really lovely people in the world. I have taken off my tenacious head and said yes.
Thank you so much Ann and Bill, I really appreciate it.
Siobhan has been a real trooper, looking after me, doing the house work, supervising Kieran when he needs it. So much for young shoulders to be burdened with. Who has children to be their carers? I don't think anyone does, I am so used to looking after myself that I find it hard to ask for help, I know I do but I also know that I do need to accept it and understand that others want to help too.
Will update as I go, this week will be all ups and downs.
Thank you everyone for all their support and wonderful messages. It really is appreciated x x


Friday, 27 July 2012

Another day that nothing goes right!!

I left the house at 9:45 am to get back to the hospital for 10am, it's chemo day, no PICC line in so it will be a cannula for every treatment but all agreed now it should done by an anesthetist, one time only. The cannula I had put in yesterday would be tested but as the hole is bigger than the cannula, it may leak. I thought it would and so did everyonr else, as the saline was put it, it leaked right back out again so that one is no good, I need another one. My head is going crazy, by feelings are rock bottom, so low, I felt like crying, infact I did and had tears all morning. It got to 11am, I had a test to check my bloods, blood test shows that my cells are all over the place because of the shingles I had 2 weeks ago that has now cleared up. My HB (blood count) is 9 which is borderline so there may not be any chemo today.  Here we go, the adventure has started. Jo the nurse came up after talking to Dr D, he wants the chemo done and a transfusion next week, I can't get away from this bloody hospital!!!
I took my pre chemo drug, I have to take this an hour before treatment starts. It has been arranged that the anesthetist will be up with me before he goes home. Well....that is what should have happenned. A porter came up with a patient and Jo asked him where Mr F was as he was doing my cannula, it is 12:15pm, I need the chemo in 15 minutes due to the pill I took mind you. "Oh he will be back in this afternoon" came back the answer, "he has gone home".... grrrrr!! why me!!! not again, I had my greif yesterday!!!
Jo came in and said she thinks he has forgotten and he will be mortified when he remembers. She then said she had arranged for another anesthetist to do it instead, so off we went to the pre theatre room to have the next cannula fitted. It was done, quick as a flash, Hooray, at last!!
As I walked back to my room I started wailing again, I really can't control it today. Chemo scares me to death because of what my dad went through, mix that with the anger of this disease and it is a rotten combination.
We got the chemo started.....a big famous fine, ..... hoorah!!!.....  all is going fine, at last.
My friend Jeantte got in touch and asked if I was on my own, I was, she said she would come up to me.
She is so lovely. I told her I heard the hospital chaplin doing his rounds, I am not in the mood for him today, I don't do religion, and know we all need our own faith that pulls us through, it really helps some people, its too much for me at the moment. I layed on my bed pretending to be asleep, With one eye open I might add until he went past. Apologies to those who find this offensive, It's just not for me.
When the chemo was all done, we waited for a bit before Jeanette dropped me home.
Siobhan was out doing the shopping, she had tidied up the house beautifully. I made Jeanette a cuppa, she left about 30 minutes later when Siobhan got back.
I got in touch with Jayne and Chrissy as Chrissy had offered to take me to Jayne's house for Egg, chips and a chip butty, For my American buddies this is fried egg, fries and a fries sandwich.
It was delicious, Jayne is the best at egg and chips (fries)!!!
Then Chrissy and I left there and went to Matalan and then to Asda to look for a top for her. I found a lovely bag in Asda, yes.... it is a cat one : ) Which I found in Matalan either that or a dragonfly. Chrissy was laughing at me, when I am on steroids I change personality, there were 2 dogs waiting in their car for their owner, bark, bark, bark, they went as we passed the car. I was shouting "woof bloody Woof" to them. It wasn't me, it was my steroid sister coming out!!! As we drove by she got worse, she was waving her to fingers up to them shouting "Woof F%*@ing Woof, what you going to do about it??"
The steroid sister is the worst, Chrissy though it was so funny, it's nuts!!! She dropped me off at home and I got me jammies on and got into bed.
Next week is early starts, Monday 8:30 am for cross matching the bloods for Tuesday and Tuesday in 7:30am .... yes i said silly o'clock on Tuesday so the anesthetist can put the cannula in before I have the chemo as he will be in theatre. ... Whoopee!!! I am hoping I can drive, will have to see other wise it will be a taxi, I will get there some how.

Foot note:
To all the lovely people who have sent me such lovely messages of support, thank you so much, you don't know how much this gets me through these very difficult times, I miss my dad so much as I know he would be ready with a hug and words of comfort like any good parent would for their child. Not every parent is like that unfortunately. Once again, thank you so much everyone, I appreciate it so much x x x

Thursday, 26 July 2012

PICC line no PICC-nic

 Attempt 1.....
 Attempt 2........
Attempt 3 with cannula still in place for tomorrow as long as it doesn't leak.

I got to the hospital at about 10:45 am this morning, I was told to get there for 11am, I eventually saw the anesthetist at 12:20, I didn't get the message that he was going to be late.
So 12:20, in the anaesetic room the Dr makes a start. I told them my right arm was better than my left and that I do have very small veins. We started with the left arm because i am right handed. He went up under my left arm, did an ultra sound and found the vein he wanted to use, after putting in some lydocane he then attempted to put a tube in, I think, I didn't want to watch. All was going well till he hit a nerve and an electric shock pulse ran down my arm to my hand, it felt like pins and needles. He carried on with what he was doing but had problems getting the tube through the vein. He eventually gave up with that one. He then tried under my fore arm, same thing, vein isn't big enough to do it so a third try would be by my wrist. He found a good vein, got so far then needed to widen the vein to get the catheter in. That really hurt, he was pushing and pushing, It was painful. In the end he felt he could go no further. So after three attempts, I have no PICC line. I now have a cannula in and have been able to keep it in for tomorrow. We are hoping it doesn't leak because the hole that had to be stretched is bigger than the cannula, oh what jolly fun we are having!!!!
Tomorrow there will be decisions made, do I try another PICC line in my right arm or leave it and let the anaethatsist do every cannula.
What a morning, I feel like I could cry, this is the lonely part.
Why can't things just be simple, I have had enough of complex.
My veins have the right idea, if they don't like it they hide away, maybe I should start doing the same.

PICC line in today.

I met up with my friend, Jeanette, for lunch yesterday. It was lovely to see her. We caught up on all our news. I popped another sick note into work, I am off until September 24th and will see how things are then. As I am immunocompromised now it would be silly going back in between treatments.

Today I am off to the hospital for a PICC line to be put in. This is a tube that stays in place and is used for chemo treatments, blood test and CT scans. It will save my poor veins that are rebelling against the cannulas.

I see the Olympic Farce ....I mean games , are about to start. I am not a fan, Sports was never my forte. I will say though that I do support Tom Daley and hope he can gain a gold on him home ground. He and his family have had a tough year. Good luck Tom, I will be cheering you on and I am sure your wonderful dad will be smiling on you, if he has anything to do with it, you will have a clean sweep of gold medals.

Tuesday, 24 July 2012

The best day.


It is a monumental day for me, my 53rd birthday has now been achieved. Another gift that cannot be topped. I am so proud to have got to this day.
I have had a wonderful day, so many very special messages and so many lovely friends paid a visit today.
Chrissy, Mandy, Tina and Jayne, who sang happy birthday at my gate in her master at arms uniform, think she was the sing-o-gram in her uniform. So many lovely cards and gifts.

This is me in 2007, on my 48th birthday in Egypt, thinking it was my last.....


.... here I am in 2012, on my 53rd birthday and so proud to still be here. Every year brings more confidence.

Special thanks to my lovely children who have made my day so special. I have missed Richard, he called and sent his best wishes.

I feel ready now for my next round of Theo bashing, bring on Friday!!!

Monday, 23 July 2012

My 3 reasons for fighting back.

As I enter another milestone I am reminded of why I continue to fight Theo.
Not only am I angry that my dad and I had/have to suffer because of asbestos but I have 3 wonderful children who give me the strength I need to fight back. With out them I don't think I would fight as hard as I do.
Theo has become as much a part of their lives as he is mine, he is that annoying relative that you want to leave home!!
My children are a joy to be around, they make me smile when I am feeling low and are always there for a hug and a kiss every day.
I love them all so much, Thank you Siobhan, Rich and Kieran, I am so proud of you all. x x
Special thank you to Siobhan for being my nursemaid/carer, no child should have to do that.
I am not sure if I will be out tomorrow as the shingles still haven't quite cleared up so it may be a take away tomorrow for tea : )



A thank you has to go to Richard from the National Asbestos Helpline, I had a lovely bouquet of flowers delivered today, thank you so much Rich, you do make me feel so special. x x

Sunday, 22 July 2012

Update

My shingles are feeling much better, I am hoping I can go out again as I haven't been out due to being so infectious.
I do miss going out. I have been quite sad this week as well, feeling so down about Joan, my lovely facebook friend. I woke up yesterday morning and just for a moment wondered if I had dreamt it all. Disappointedly I hadn't, it was all real.

I had a phone call on Friday, I have been asked to talk in Parliament next June, I am so excited, I have said yes. I don't usually arrange things so far ahead due to not knowing what Theo has planned so this will be a huge challenge. It will be a focus after Christmas. I live my life in 3 monthly batches, I find that easier than having a yearly challenge, I try and be realistic. 3 months is easier to achieve and it coincides with my scan.
I will be having a PICC line put in next week some time. I cancelled going to Ireland as I am dealing with the chemo, good job I did, I would have been traveling with shingles.
Chemo will be on Friday and if the last lot of results is anything to go by, Theo will be having a bashing again.

Below is the agenda for June 2012, I am not sure who  I will be speaking, what ever happens, we all want the same outcome, a complete global ban on asbestos and awareness of the dangers of asbestos.


                                                                      ALL PARTY PARLIAMENTARY GROUP ON
OCCUPATIONAL SAFETY AND HEALTH
Chair: Jim Sheridan MP Hon Secretary: Ian Lavery MP
Asbestos Update
3:00 to 6:00 pm, Wednesday, 27 June 2012
Committee Room 11, House of Commons, London, SW1A 0AA

____________________________________________________________
Objectives:

This meeting of MPs and invited guests is intended to:

Keep asbestos high on the UK agenda;
Explore and discuss topical UK issues such as asbestos contamination in schools and the timely delivery of equitable compensation to the injured;
      Examine UK asbestos developments in light of news from abroad.

Agenda:
3:00 Welcome: Co-Chair Ian Lavery MP
3:05 UK Legal Developments 2012 David Allan, Barrister 
3:25 Update from Asbestos Victims’ Support Groups Forum – Tony Whitston 
3:45 Asbestos Contamination in Widnes – Jason Addy, PH D. student, and members of the North Widnes Residents’ Association
4:05 KEYNOTE PRESENTATION: Asbestos Issues in India – Tublu Mukherjee, Barrister
4:35 The Asbestos Frontline – Kathleen Ruff, Canadian Ban Asbestos Activist
5:05 Low Level Asbestos Exposures – Alex Burdorf, Epidemiologist, Netherlands
5:35 Question and Answers: Co-Chair John Cryer MP
6:00 Conclusion: Chair John Cryer MP


Friday, 20 July 2012

Joan

In 2008, on one of my trips to Germany, I was honoured to meet Kat and Ian. Ian was 26 and had mesothelioma, he was a courageous and wonderful person, as was Kat. I felt a strong bond with both of them. It's like meeting someone you feel like you have met in another life time.
Through Kat I met Joan, her mum. Such a wonderful lady, so supportive and loving. She always had something positive to say and was probably one of my fiercest supporters.
I got to know about Sean, Joan's husband, her 2 sons as well as Kat, and Obi, her wonderful dog.
Today Kat contacted me to say that Joan had died suddenly, I am heart broken. Joan was one of lifes angels who earnt who her wings the day she was born.
I am going to miss her so very much.
Dear Kat has had a lot of heart ache, she lost Ian not long after we met and now to lose her wonderful mum who loved her darling daughter so much. She was very proud of Kat and the way she picked herself up and got on with her life. All I can say is that Kat took after her mother, so caring and loving. They have both become my very special friends. South Africa and the UK maybe miles away but on facebook we are in the same room.

Condolences to Kat, her dad Sean, her 2 brothers, and family and Obi the dog. My heart is shattered, I will miss Joan so much as will many others on facebook. She was a very special person.


Another FB friend, Jan put a lovely poem on Joan's page.



Hello There Nice Person 
Did Anyone Ever Tell You,
Just How Special You Are
The Light that You Emit 
Might even Light a Star 
... ... Did Anyone Ever Tell You 
How Important You Make Others Feel 
Somebody out here is Smiling 
About Love that is so Real
Did Anyone Ever Tell You that 
Many Times When They were Sad
Your comments made Them Smile a bit
In Fact It made Them Glad

For the Time You Spend Sending Things
And Sharing whatever You Find
There are No Words to Thank You
But Somebody, Thinks You're Fine

Did Anyone Ever Tell You
Just How Much They Like You
Well, My Dearest Friend
Today I am Telling You



To Joan of the angels, we love you so much, Goodnight my beautiful friend x x x

Francois

It is with a heavy heart that I add Francois to the list of courageous warriors who have earnt their angel wings.
Love and strength are sent to his wife, Cynthia and his family who start their next journey without Francois. He will be watching over them I am sure from his cloud above.
Francois fought a valiant battle with his family at his side always.



Condolences to Francois's family x x x

Wednesday, 18 July 2012

Brilliant news with the scan!!!

This morning I got myself off to the hospital to have a blood test, ready for Dr D when I see him this afternoon. I had been crying all morning, even said a few bad things to the kitties, I was not a happy bunny. I had the blood test done, more tears for the nurse doing the blood test. I then went to see my friend Mandy and had another really good toot, she made a cuppa and helped so much, it lifted half of the load I was carrying. If there had been a bus to take me well away from all the pain and stress I think I would have got on it today.
I left Mandy's , Thanks so much my friend for helping me and supporting me this morning, and went home, had lunch and got ready for the appointment.
Siobhan and I left about 1:20 pm to meet my friend, Wendy, at the hospital. We all went up to see Dr D. We went in right way.
I wasn't sure what he was going to say but first of all he said that it was good news.... phew!!!
What a relief.
Theo had well and truly been ass kicked! (I have put the report on as well) I was so pleased.
Dr D had said that he will re-arrange the chemo day to next Friday which will give my body a chance to recover from the shingles. He said shingles only attacks one side and he believed this is what I had, Another Phew!!
He has agreed to me having a PICC line done, that will be done next week.
He recommended calamine lotion for my sores. The tablets, he said will be better than ointment.
All in all it was a great appointment. Thank you so much to all the wonderful people who have wished me well, I could feel you all in the room with me, a special thanks to my lovely dad who, I am sure, is watching over me. I am so lucky to have so many fabulous friends and some family who are always there for me. I couldn't do this with out.  x x x

Imaging Report July 2012

CT Thorax

History : Mesothelioma on treatment.

Comparison is made with the scan in May 2012.

Findings : There has been reduction in the soft tissue disease. For example the left supraclavicular and previously measuring 12 mm now measures 7 mm. The left apical mass is reduced from 35 mm to 26 mm in maximum depth. The left internal mammary gland is reduced from 16 to 12 mm.
The aortopulmonary nodes remain static. The largest contralateral pulmonary metastasis is reduced from 15 to 12 mm. Similar response is seen in the smaller right sided metastasis. The disease at the left base shows marginal improvement.

Inflammatory changes at the left base are slightly worse than previously but are unlikely to represent disease. They're much more likely due to asperation due to the tracheo-oesophageal fistula which remains patent (Open).

Conclusion : good partial response to treatment compared to May 2012.

Tuesday, 17 July 2012

Feeling sorry for me self!!!

I have had so much pain over the past few days, I can't sit down properly and clothes are irritating the site. Hope it clears up soon. I have another 9 days of tablets. The pain is unbelievable, but a lot less than some people put up with.
Roll on tomorrow, I will be glad to get it out of the way, I will get my results of last weeks scan.
I have been very frightened and upset, bringing home the memories of what my darling dad went through. I know he is around me every day, I just wish I could reach out and touch him and have one of our very special chats. Why is it when these special little things happen, at the time it isn't appreciated. He did so much and was so very brave with how he dealt with chemo, if I can be half as brave as he was I will be happy.
I miss him so very much and weeks like this make it more real that I will never see him again.
I can't stop crying at the moment, I know I am going to crumble tomorrow.
I will be stronger tomorrow when I know where I stand with Theo and am hoping that when I get to my oncologists office that I can sit down. I have a lot of questions for him. One of them is having a PICC line put in for the chemo as my poor veins are not good, they don't want to play anymore and I don't blame them, neither do I.
Theo, you have a lot to answer for you bastard, I hope that your getting double of what I am experiencing and that your big ass meso butt is black and blue from the kicking you have had.

Monday, 16 July 2012

Dr's today

Well, I have plucked up the courage to be as honest as I can. This is very personal but I need to document it as it is all part of the journey. I saw a Dr today ( I asked to see a female one) and explained to her that I had some lesions or ulcers on my naughty bits. It flared up on Friday. Over the weekend it has got very painful. She explained that I am immunocompromised and  have a viral infection. It seems to be the chicken pox/shingles virus or a cold sore virus. I haven't been near anyone with a cold sore so am not sure how that would be.
I have got some tablets, I have to take 5 a day for 10 days. I have added this as it is common to get this with chemotherapy. When the immune system is very low infections are picked up easily.
I have been so embarrassed by it but know I need to add it on here as it is part of the journey.

I have had a very restful day today, feel asleep on the sofa. Roll on Wednesday, I want to get this result out of the way so I can pick myself up again. My nose seems to have stopped bleeding now. It wasn't very much anyway. I will be going with a list of questions on Wednesday which will include asking for a PICC line for the chemo as my poor little veins are not happy.

Sunday, 15 July 2012

Late nights over the weekend.

I went out with my friends I have known for 25 years on Friday evening and didn't get home till 12:50 am. I went back to Wendy's house and we chatted away, forgetting the time. It was lovely to catch up with Lyn and Jacqui and later with Wendy and her husband, Terry.

Saturday was as bad, I had lunch at Chrissy's and got ready there. My friend Avis was there too, She had bought Jayne, my other friend and I a lovely bouquet of flowers for our birthdays, we are a week apart. Such a lovely thing to do, thank you so much Avis. Another friend, Anita, arrived at Chrissy's, we all bundled into my car and went off to the barbican. I wasn't driving and wanted a quick way home as I knew I would het tired. I left them about 11:45 pm and went straight to bed hoping I would wake up late in the morning, I got a furry alarm call around 8:30 am. That means a nudge from a paw in the face and a cuddle from Stork.
I got up and got them some food, took my tablets and went back to bed. I woke up at 11 am. I needed that extra sleep.
My nose is still bleeding, not an awful lot but enough to annoy me.
I will speak to my oncologist on Wednesday about having a PICC line put in which is a permanent line to administer chemo and take blood as my poor veins have taken a pounding, in fact I think my whole body has. I am terrified that I won't come out of the chemo cycle and it will get me because that is what happened to my poor dad.
I just grabbed hold of my baby girl and had a good cry, poor Siobhan, taking on so much.
I have got to try and get back on top. I am still taking my mistletoe which, I think, gives me the energy I need. I know I need to take things easy, but if I do, will Theo get me?

My lovey warrior friends are so supportive and helpful, I have had a couple of questions this week which they have answered, and Mary, the specialist nurse in the USA who is always helpful.

Well onwards and upwards, I have got some rhubarb from Christine, my friend in Darlington. She sent it by post so Kieran and I will make a rhubarb crumble tomorrow. Thank goodness it survived royal mail : )
I am going to have a quiet day tomorrow lots of rest, got clothes and shoes to sort out and get rid of.

Thank you so much to evey one who has sent messages of support via email, text and facebook.
A special thank you to Karen, my inspiration to make a blog diary about my mesothelioma journey.
Avis, Jayne, Anita and Chrissy, ready for a night out.


Christine's Rhubarb : ) 

Face pack time,  ooohhh, scary!!!


Karen has a blog called the furry monkey, she goes through such a lot more than me, she has non-hodgkins lymphome and has the most wonderful and informative blog. Karen makes cards and has sent a lovely on to me, thank you so much Karen. It has a special place beside Avis's flowers : )

Avis's Flowers x x
Karen's card x x

Happy Birthday Richard.

My baby is 23 today, this is the first one away from home. He is spending his day with his little family and I hope he has a great day.
23 years ago this was a devistating day. I held him in my arms fro a few minutes before he was taken from me and put into the special care baby unit. I didn't understand what was going on, why couldn't I be with my baby? He was taken to Bristol Royal children's hospital for a major operation the next day.
He had been born unable to swallow, his eosophagus (Food pipe) was connected to his trachea (Windpipe). He is a TOF baby. Without the operation he would have starved to death.
I had a blood transfusion after having him, what a nightmare it was.
All the horrors of his first few years have disappeared, Siobhan was an absolute angel, she was only 3 and helped so much when Richard choked on his food. she would take the lid off the bin so Rich could get out what he was choking on. Such a little star, more than any child should have to put up with. She helped out with that until Rich was about 7, that was when things started to get easier.

He has few episodes of choking now, I use Rich as a sounding post because I found out 3 years ago I was a TOF as well. Mine is rarer but not as severe as his.


Have a great day Richard, I love you so much x x x

Saturday, 14 July 2012

25 years of friendship.

Where does the time go, I can't believe that my friends and I have known each other for 25 years.
I went out last night to celebrate that with them. I met Wendy, Lyn and Jacqui when our first borns were very young. We would go to each others houses for coffee and a chat and a chance for the children to play. We all got pregnant with our second children within months of each other and supported each other through that. They were wonderful when I had Richard and his TOF issues.
We all the children potty training at the same time so when we did meet at each others houses, potties were at the ready and a very loud cheer from all of us when something had been produced, no matter how small or smelly : )
The children grew up together until the older ones were at school and that is when we all started to drift away a little as there were house moves and school moves.
Although we were not living as close to each other as we were, we still managed to get together.
We have been through such a lot together, they are always there for me which is why 2 of them are the executors of my will, very trustworthy people who I consider more family than friends.
Now our children are all grown up, our eldest ones will be 26 and 27 this year and the younger ones 23.
Wendy and Lyn had girls, I had Siobhan and Jacqui had boys, so with Richard as well, the girls outnumbered the boys.
Thank you so much my friends for being there for me when I need you, thank you for all the support you have given me over the past 25 years, thank you so much for being such wonderful friends.
We had a lovely night, with me doing most of the talking (Of course)
I hope we can try to have another meet up very soon.




Wednesday, 11 July 2012

Not a good day.

I woke up this morning, helped Kieran get off to school and got myself ready to drive the hospital for a CT scan. The results are next Wednesday so I am hoping Theo had at least moved out some of his belongings or is he too injured to moved anything but has stayed where he is?
I had a few tears on my own before I left, The CT blues have started already. I got in my car and drove to the hospital, sat down and waited for a few minutes before the radiographer came out. She is so lovely and very supportive, well, they all are.
I got into the changing room and had a few more tears, I didn't want to break down on the CT table. The radiographer tried my left arm, no joy, the veins weren't playing. She then tried my right arm, in a different place than the last chemo but the same veins. That was it, second attempt, tears again.
I wanted to get up and walk out, I don't want this, I miss my dad too, so very much.
The radiographer felt so bad, I didn't want her to feel like that, it wasn't her fault, it's the fault of the people who peddle this asbestos crap. My dad's life cut short and mine affected by this. I never want any of my family to go through this, I never want anyone to walk in my shoes, even if they are my worst enemies. My goal is to shout about the wrong doing, the trauma of knowing that a man went to work for 3 years to support his family and he gets dealt a terrible blow. I fight back for myself and my dad and for those like him. IT IS WRONG !!!! rant over.

Back to the CT, The radiographer called a Dr in to try, she tried one vein, no joy, not a spot of blood. To top it all, I laid down and the reflux started so the TOF is making itself known too, brilliant.
Eventually the Dr found a vein, Thank goodness for that. All settled down and I had the scan, After all that I hope there is a positive result, just stability will do.

Thank you so much to the staff in the radiography department, they have been so supportive today.

I went out into the waiting room, had a coffee and sat for a few minutes before driving into town for a latte and some retail therapy. I bought a lovely dress and a pair of shoes.
I had a valet for Halo, my little car, she had a good clean inside, not worth doing the outside, the weather is awful, still raining. Good job done, they even sorted out her boot. She desreved some pampering too : )


Tuesday, 10 July 2012

Back to normal.

I had a quiet day yesterday, I felt tired and my appetite seems to have disappeared, I know how it important it is to eat though and am doing my best. I think little and often meals will be the key, nothing too intimidating.
I am going to potter around today as well, I have my CT scan tomorrow and the results next week which is chemo week.
It comes around so fast, I really want to have my life back, I hate this chemo regime, it takes a lot of my energy and time. I can remember saying, when I was diagnosed with mesothelioma, that I didn't have time for cancer, well, I still don't. Theo, you better be moving your gear out, you haven't got long.
I am hoping for stability at least, I do feel well in my self but I think the chemo is catching up, better start running and getting ahead of it : )

I had my usual blueberries, strawberries and raspberries drink this morning. I juice them about 2-3 times a week. I am happy picking at fruit like grapes and cherries, it's the main meals i am finding the challenge. I am going to make a roast this evening as I know I will enjoy that, being a veggie it is that, all vegetables, which I love. I may have a Quorn fillet, not sure yet, what ever I do, I know I will enjoy it.
Kieran has a sore throat at the moment, I have told him if I take him to the Dr's they won't do anything as they don't like giving out anti biotics. He has had cough medicine and paracetamol which is all they would prescribe anyway. He is a brave little soldier : )


Sunday, 8 July 2012

Saturday, going home.

Chrissy and I had a good nights sleep, well sort of. I had a pineapple juice in the bar before I went to bed. Forgot about the reflux problem as the TOF has been brilliant for such a long time, wrong thing to do. We said good night to Pat and her friend, Well goodbye because we may not see them in the morning. It has been great to spend time with my very special friend. Not long after we went to bed and off to sleep, I was woken up by coughing and an acidy taste, the reflux started, I woke Chrissy as I knew she had Gaviscon, I knew she would tell me that I should have woken her, I took the Gaviscon, not before trying to relieve myself of the acid, this burned my larynx so no voice.
We went back to sleep and woke up around 8:30am.
We were going to have breakfast in our room, when the toast arrived I think the toaster had been shown the bread, it was barely toasted, raw brown bread. we had a coffee, Chrissy had tea, got dressed and then took our bags to the car. The weather is awful, raining quite hard so a slow drive home would be on the cards.
We got to Dorset were the traffic came to a standstill, We weren't sure at the time why, we were stuck in it for around 1/2 hour and decided to get something to eat. We had a fish finger sandwich and a cuppa. Then it was back to the traffic. It was so slow, we had around 4 - 5 fire engines pass by us with sirens going. When we got to Bridport, we realised why the traffic had stopped, We passed through one large puddle and thought that was it, no, there was more. We slowly advanced forward for over an hour and there it was, there was a massive flood across the road. A car had been abandoned in the middle of the road. I was amused by a lady taking her spaniel for a walk, welly boots on wading through the water with the little dog happily walking beside her.
We got through the flooded area and were now out of the hold up. All in all it took us 7 1/2 hours to get home, we set off at 10am and got home at about 5:45pm, Chrissy was brilliant, we couldn't do much than laugh about it.

This is the first flood, well, more like a big puddle.

This is the bigger one in Bridport, Dorset, looking on youtube, it looks like it gets flooded a lot.

By the time we got home, we were shattered, Chrissy dropped me off and went onto her place. I got my pyjama's on and settled into bed and relaxed. Hopefully the voice will be back soon, such a lovely weekend, even the rain didn't spoil it.

Thursday, off to Portsmouth.

Chrissy and I left around 9am on Friday morning for our journey to the HASAG Action Mesothelioma Day event. It was a cloudy, grey day in Plymouth.
It took us around 5 hours to get there, we stopped of for lunch in Dorset, We had a lovely meal.
We got to the Queen's hotel in Portsmouth at around 2pm. We took our time with a leisurely drive.
When we got there, the sun was shining beautifully. It was like it should be, a summers day in July.
We dropped our bags off and had a walk along the sea front, it is such a pretty place, so clean and so quiet. It was a shame everything was closed up, not much activity.
We met up with Pat and her friend Ray, so lovely to see her again. She gives me so much strength. Pat's husband, Tony was the reason I went to Germany. They had found all the information, Tony died before he could find out if chemoembolisation would have worked for him.
I felt he was there with us, watching and embracing us with his wonderful spirit.
Pat and I chatted and caught up with what has been going on since we last met in 2009.
Chrissy and I spent most of the day with them before going to get ready for a meal, we went into an Indian restaurant and had a meal. We had a lovely day.

Friday

Chrissy and I went down for breakfast at around 8:30, left the hotel afterwards and headed for the hight street, well....what else do girlies do when they are away!!
We looked in some charity shops and in the stores, it was so quiet, like a ghost town.
I found a little bargain in Debenhams, a little top for £14:99. I took it to the cash desk and didn't realise that it was in the blue cross sale, it was £8:40.... what a bargain. We took a look in WH Smiths as Chrissy was looking for the fifty shades of grey books. There are 3 n the series and they are very popular at the moment, can't think why : )
What a surprise she got when she was told they had all 3..... whoopee!!! Won't see her for a while : )
We got back to the hotel about 11 ish and met with Diane, she runs the Hampshire Asbestos Support group with her sister Lynn. It was so lovely to see her again, last time we met was in 2008 I think.
We went into the meeting room, the weather had changed, it was raining quite hard, there were no doves as the people that had them had a bereavement, such a shame but it didn't spoil the day.
Another warrior friend, Suzi, arrived, I saw her at the Plymouth event last year. We caught up on our news. Diane and her husband Mike made themselves known, this is the beauty of these events, the support and inspiration is overwhelming.
The meeting was opened by Lynn who introduced the first speaker Dr Adrian Dobbs, Senior lecturer in organic chemistry at Queen Mary university of London.
His talk was really interesting, he talked about Aspirin from the bark of a willow tree and the breast cancer drug Taxol coming from a yew tree. It was a very interesting talk. Dr Dobbs got into research for mesothelioma after losing his father. Such a shame that this has to happen to get someone to take notice and research. He explained that mesothelioma had only had 44 medical papers written in 2010 compared to lung cancer which had over 3,000. I hope there is a breakthrough soon, there are things happening but it costs money for these research programs and that is where the June Hancock fund has been invaluable. The money raised by loved ones and friends is used for research grants. It is so good to see the money working towards a future without mesothelioma, it may be a long way off but it is getting closer. Pat and i discussed the fact that in 2007, when she was finding all the information about Germany, the message coming back was the immune system and organic matter is the key to a cure.
Germany was already studying these things, why does it take the world so long.
After Dr Dobbs had spoken, it was my turn. 10 minutes of listening to my meso story and how the facebook community started and the success it is today, all down to every warrior who uses it.

There was a raffle which took place after my talk. I had put my award from ADAO on the table where the prizes were and was a little concerned that it may be confused with a raffle prize, it was, a dear lady won a prize and went up to claim it, she looked around the table many times before setting her hands on my award....oooerrrr...... quick run up to apologise and whip it out of her hands. She saw the funny side of it though and so did everyone else : )
With the meeting over, Suzi and her family said goodbye and made there way out, such a shame we didn't get much time together. I chatted with Diane and Lynn, two wonderful girls who have made a difference to so many lives.
Diane left not long after, off to get back home in time for her daughter coming home from school. Chrissy had gone up to the hotel room.
There were so many lovely people there, so many great comments from them.
 Diane, Lynn and Lisa, what a fabulous team, Holding the award from ADAO
 Diane, Lynn (HASAG) and I.
Pat and I, such a wonderful friend, with some people in life you just click.

This is my talk at the HASAG event.

The meeting was a great success, the girls raised over £1,000, the room was filled which just shows how much respect people have for Diane, Lynn and Lisa, it was such a shame we didn't get the photo opportunity with the doves but it didn't spoil anything, well done girls, you did good : )

Saturday, 7 July 2012

Great weekend.

I have returned home from Portsmouth. What a great and inspiring event it was, I will explain all in a blog but for now I am going to do what Pat tells me, to relax, it's an order!!!
Chrissy drove home from Portsmouth, we got stuck in a traffic jam caused by the flood in Dorset. It took us 7 and 1/2 hours to get home, the trip should have took half that.
I have lost my voice, not due to singing and having a raucous time but due to having a pineapple juice too late at night. I get reflux because if my TOF which means that if I eat or drink to late and then go to bed, I lay down to sleep and the contents flow back up. The pineapple juice had caused acid which burnt my oesophagus so I will be silent for a couple of days, Kieran will love that : )
It will get better so for now I am going to be quiet and relax.
The pineapple juice incident was funny though, should have realised but I forgot because it hasn't happened for such a long time.
The funny bit is asking the bar tender for a pina colada and being told she didn't have that.
I said "Can I have a pineapple juice and Malibu then?" Yes came the answer back. Mmm.... seems some bar tenders don't know how to make a simple cocktail : )

It was wonderful to see Pat, Suzanne, Diane S, Lynn and Diane B. Well done Diane S and Lynn for a great day. x x

Wednesday, 4 July 2012

A Message from the National Asbestos Helpline.

The National Asbestos Helpline (NAH), which represents the victims and their families of asbestos-related disease, is adding its support to the growing number of global organisations calling for a total ban on the use of the material, as part of its campaign to support Action Mesothelioma Day [Friday 6th July 2012].

Action Mesothelioma Day is International, highlighting the global scale and consequences to the health and lives of individuals exposed to asbestos and their relatives. Along with the British Lung Foundation (BLF), the Asbestos Disease Awareness Organisation (ADAO) in America and many others world-wide the NAH is adding its weight to the campaign for a total ban on the use of asbestos and at the same time launching an online petition where those affected by this material can add their support for the initiative.

Richard Clarke, General Manager of the NAH said: “We must ban the use of this material; the NAH sees daily the affects asbestos disease can have on people’s lives, and for those diagnosed with the rare asbestos-related cancer mesothelioma, the outcome is nearly always fatal. We are looking to reach over 1000 signatures, with photographs, of those who have used our services and who have obviously had their lives changed as a result of coming into contact with asbestos. We will then transfer their support to a book for presentation to Dr. Penny Woods, CEO of the BLF and Linda Reinstein from the ADAO in America, to present the face of the disease to those guilty of profiteering from its production, export and use and adding to the growing weight of campaigning to outlaw the use of this material once and for all.”

Richard added: “Action Mesothelioma Day is the ideal vehicle on which we can bring wider attention to the dangers of this material as well as remember those we have lost to asbestos-related diseases and raise valuable funds for those living with an asbestos-related condition. Employees of the NAH will be observing a minute’s silence at 10am on Action Mesothelioma Day in memory of those globally who have lost their lives to the disease.”

NEW 'LOBBYING FOR LIFE' WEBSITE LAUNCHING FRIDAY 6TH JULY - PLEASE VISIT 

THE NAH FACEBOOK PAGE TO LEARN MORE - THANK YOU.


http://www.nationalasbestos.co.uk/

Back from beyond!!

I feel like I am coming back to the land of the living. Chemo therapy really screws up the bodies functions, nausea, constipation, appetite and much more that goes on. I want it to screw up Theo, I hope he is reeling from all this treatment and gets the message, YOUR NOT WANTED!!!

I got rid of some "stuff" this morning ..... (Hello Jan C :  ), .....  by this I mean constipation, once things start moving I feel much better. Mary, our lovely nurse in the USA calls it slow transit. It makes me feel bloated and trying to eat is hard because I feel so full. Once things start moving it feels much better.

I feel more like the old me this morning, not quite back on top but getting there.

I have been having night sweats since Friday and feeling a little warm today. I don't think it is anything other than chemo affects but I will keep an eye on it.
Tomorrow my friend Chrissy and I will be going to Portsmouth, South Seas, to the HASAG Action Mesothelioma Day event. I will be doing a short talk letting doves out in memory of all those lost to mesothelioma.
I am sure it will be a very moving day. We will have a leisurely drive there and will meet some friends who inspire me everyday, Diane, Lynn, Suzi, and of course the lovely Pat.




Please come along and show your support.


Hampshire Asbestos Support and Awareness Group 

Hampshire Asbestos Support & Awareness Group (HASAG) is hosting this year’s Action 
Mesothelioma Day in Southsea. 
Dove release to increase awareness and raise much need funds for mesothelioma 
research will be held on Friday 6 July at 12 noon in the gardens of The Queens Hotel. 
Followed by a public meeting in Queens Hotel, Clarence Parade, Southsea
Speakers include Vanessa Bridge from the June Hancock Mesothelioma Research Fund,
Dr. Adrian Dobbs, Senior Lecturer in Organic Chemistry School of Biological & Chemical
Sciences Queen Mary University of London and Mesothelioma Warrior Debbie Brewer
All money raised will be donated to Mick Knighton Mesothelioma Research Fund & The
June Hancock Mesothelioma Research Fund.
Light refreshments will be served following the public meeting
For more information Tel. 02380 010 015










Tuesday, 3 July 2012

Larry Davis



It is with great sadness that Larry Davis had passed away. Larry was a tireless campaigner for why asbestos should be banned, not only did he fight the disease, he was also a great voice for many around the world and someone who raised money in the hope of finding a cure.
I never had the privilege of meeting him but I did come close, I was so honoured to share the ADAO (Asbestos Disease Awareness Organisation) Alan Reinstein award with him.
My heart is with his family as they start their journey without Larry. He will never be forgotten, Larry will go down in history, he will be remembered for his fight and determination and will continue to inspire others to follow in his foot steps.
Bless you Larry, watch over your family every day, and help them continue your fight in your memory. x x x

Action Mesothelioma Day Events around the country on Friday 6th July 2012.

Asbestos Action Tayside 

Asbestos Action Tayside are holding their annual Mesothelioma conference in Dundee on Friday 6th July for 
members and their families. Speakers will include a respiratory consultant, an oncologist, a psychologist and 
a lawyer. 
This will provide sufferers and their families with an opportunity to meet others in the same position as well 
as being able to find out more information on the illness and ask questions of the speakers. 
We will also be remembering the members who have lost their lives to mesothelioma and releasing a large 
balloon at the end of the conference. 
For more information Tel. 01382 225715. 

Sheffield And Rotherham Asbestos Victim Support 

Sheffield And Rotherham Asbestos Victim Support Group (SARAG) is holding a meeting from 11.00 - 1.00 
on Friday 6th July 2012 at the Memorial Hall, Sheffield City Hall, Sheffield. Speakers include the Lord Mayor 
Councillor John Campbell, Paul Blomfield MP, Denis Doody UCATT, Mr John Edwards, Dr Gurnam Basran, 
representatives of the June Hancock Mesothelioma Research Fund. 

The Lord Mayor will open the event at 11.00 when all dedications to remember people killed or suffering 
asbestos-related diseases across South Yorkshire & North Nottinghamshire will be read out at the front of 
the City Hall, Barkers Pool, Sheffield. Meeting, speakers and refreshments in the Memorial Hall from 11.30 - 
1.00 everyone welcome. All donations collected for the event will go to mesothelioma research. 
For more information Tel. 01709 360 672 

Merseyside Asbestos Victims Support and 
Cheshire Asbestos Victims Support 

MAVS have once again teamed up with the Cheshire Asbestos Victims Support Group to host this event 
starting at 11am Friday 6th July 2012 at Liverpool Town Hall. The focus of this year’s event will be on the 
campaign for a global ban on the use of asbestos. 
11.00am – 11.15am Start & Introductions. Welcome from Civic Dignitaries 
11.15am – 12noon Lecture from Dr. Chris Warburton - Clinical Director/Consultant 
Respiratory Physician at Aintree Chest Centre 
12noon - 12.30pm Release of sponsored doves (subject to weather conditions) 
12.30pm – 1.45pm Refreshments & Stalls/Van 
1.45pm – 2.30pm Lecture from Bernie Sanders – Macmillan Information & Support Manager 
2.30pm – 3.00pm Lecture from Laurie Kazan-Allen - Editor of International Ban Asbestos Magazine 
3.00pm – 3.15pm Closing remarks and thanks from John Flanagan/Brian Delaway 
For more information Tel: 0151 236 1895 

Greater Manchester Asbestos Victims Support Group 
Action Mesothelioma Day 

Release of Sponsored Doves 
12.30pm in Lincoln Square (Brazennose Street Opposite Manchester Town Hall) 
In memory of all those who have died from mesothelioma 
Public Meeting 13.00 – 14.00 in Manchester Town Hall 
“Global Ban of Asbestos” 
Speakers: Kathleen Ruff – Canadian writer and campaigner 
For more information Tel: 0161 636 7555

Hampshire Asbestos Support and Awareness Group 

Hampshire Asbestos Support & Awareness Group (HASAG) is hosting this year’s Action 
Mesothelioma Day in Southsea. 
Dove release to increase awareness and raise much need funds for mesothelioma 
research will be held on Friday 6 July at 12 noon in the gardens of The Queens Hotel. 
Followed by a public meeting in Queens Hotel, Clarence Parade, Southsea 
Speakers include Vanessa Bridge from the June Hancock Mesothelioma Research Fund, 
Dr. Adrian Dobbs, Senior Lecturer in Organic Chemistry School of Biological & Chemical 
Sciences Queen Mary University of London and Mesothelioma Warrior Debbie Brewer 
All money raised will be donated to Mick Knighton Mesothelioma Research Fund & The 
June Hancock Mesothelioma Research Fund. 
Light refreshments will be served following the public meeting 
For more information Tel. 02380 010 015 

Derbyshire Asbestos Support Team and 
Mesothelioma UK Event 

Friday 6th July 2012 
‘A Reflection of the Celebration of Life’ 
St Martin’s Cathedral 
21 St Martin’s, Leicester, LE1 5DE 
Commencing 3.30pm 
Arrival 3.00pm 
The reflection will be led by the Rev Maggie Sharpe followed by a Dove release. Tea and coffee will be 
served in the Cathedral 
This year we are asking for messages on Roses as a reflection and celebration of life. Money raised will be 
donated to Mesothelioma UK to support victims of Mesothelioma. 
The message can be to remember a loved one or it can be about raising awareness about the dangers of 
exposure to asbestos; or hope in finding a cure or the need for a Research Centre. (It can be anything you 
wish). You can either send your Rose with an enclosed donation or bring it along to the event. 
Alternatively (if you do not have a rose) please write your message below and return to DAST, 
34 Glumangate, Chesterfield, S40 1TX with your donation. Suggested minimum donation £2.00 
For more information contact the 
Derbyshire Asbestos Support Team (DAST) on 01246 380415 or Mesothelioma UK on 0800 169 2409 

South West Mesothelioma Group 

Friday 6th July 2012 
From 10 til 12 
at 
Saltram House, Plympton, Plymouth 
For a cream tea and a short gathering at the memorial tree. Please feel free to lay a single 
stemmed flower at the tree if you wish. 
Please contact Kate Lansdell on 01752 763665 or email: 
plh-tr.Mesothelioma-Nurses@nhs.net for more information and to confirm attendance 
(Cream Tea - £2.50)

Mick Knighton Mesothelioma Research Fund 
Newcastle Upon Tyne 

A Tree of Hope will be placed in St Nicholas Cathedral in the centre of Newcastle upon Tyne, to mark 
Action Mesothelioma Day to hold messages and memories of those who have lost their lives to the 
asbestos related cancer, mesothelioma. 
The Tree of Hope will form part of a Memorial service, taking place at 11.00am on Friday 6th July to 
honour the victims of the disease while raising money for vital research studies into the disease. 
People who wish to add a tribute are invited to make a donation to the Mick Knighton 
Mesothelioma Research Fund. The Research Fund will help you honour the people chosen to be 
remembered on the branches of the Tree of Hope. 
For more information contact Mick Knighton Mesothelioma Research Fund on 0191 2637386.