Tuesday, 31 May 2011

Dr's again!

I still have a very mucky cough, I think it may need a little help to get rid of the remnants of it.
I have also got to get some iron as my blood count is at 9. I need to get it back up again before Germany.
Kieran has the week off so it would be good to feel better and try and get out of the house to do something. at the moment I feel like I want to stay in bed.

Sunday, 29 May 2011

Kieran ready for his 24 hour walk and me just before I had my fainting spell.

Lately nothing is working out the way I plan them. I intended to go to see Kieran in the relay for life and to do the survivors walk. Well.... that didn't work out, I was standing in line, ready to walk the circuit and felt like I was going to collapse. I told my friend, Gina, I didn't think i could do it and went to sit down. I felt so dizzy. Gina did the walk and then came over to where I was sitting. She said she would take me to hospital. We left the venue and went to the A&E department in Plymouth. After 3 hours and a blood test, chest x-ray, urine sample, blood pressure and everything else, I was told my blood count had dropped to 9 so I need to go on some iron tablets. The Dr felt I didn't need to be admitted which was good.
I went back to Gina's after the hospital, had something to eat and then went home.
I still have a cough which does seem to be going, albeit very slowly. I will see my GP on Tuesday and get some iron tablets. One thing that worries me is that the natropathic Dr I saw back in 2008 told me that iron encourages the growth of cancer. I know I have to take the iron so I don't really have a choice.




Saturday, 28 May 2011

Such sad news yesterday.


I heard of 2 lovely friends who lost their battle with cancer yesterday, Both had fought the disease so hard and both are so inspirational and give me the strength to fight my own illness.
My thoughts are with the families of Rob and Margaret.
I had the pleasure of meeting them both and could see the courageousness and bravery shining out of them.
I am doing the survivors walk today in memory of these 2 wonderful people.
Love and strength to both families as they come to terms with the loss of their angels.

Friday, 27 May 2011

Cough, cough, and more cough!!

I am now getting tired of listening to my own cough. This cold/flu is hard to shift at the moment.
I have missed Kieran's sponsored run at school today as I feel so rotten. Such a shame i was lokking forward to seeing him taking part. Kieran took it very well and said he wasn't expecting me to go.
Tomorrow is the relay for life event that Kieran and his dad have been raising funds for. I am doing the survivors walk, well I am hoping too if this cough and cold is better. I think it is going slowly, today I am going to rest up and drink lots of fluids to try and get rid of it.
I am picking up yet another sick note today, Will I ever get back to work?


Wednesday, 25 May 2011

A day of surprises.

Today 2 parcels arrived, I have been going on about my mistletoe for a while now, how I need more. I need to get a prescription and has it comes from Germany, it can take 2 weeks to arrive. I have lapsed back on it. Any way, a parcel arrived this morning, I opened it only to find some mistletoe ampules. The lovely post office had broken about 3 of them but the majority were safe. with it cam a lovely letter from a Lady who lost her husband over a year ago, she thought she had sent them on but she hadn't. How wonderful, I am still sure that when I say things, someone is listening and fate intervenes to produce what I am looking for.
I took Kieran to the dentists this morning then dropped him back to school, on my return there was another parcel. this time it was from Mary, a warrior friend who had lost her lovely Peter. She enclosed 3 boxes of mushrooms that can be used to make tea and a donation with the most wonderful letter.
Later I went to see a friend to give her one of Siobhan's badges. We had a coffee and a chat, such a lovely day today.
I have a sore throat, thanks Kieran!!! He was home from school yesterday with a sore throat.
I am going to blast it with some lemsip tonight and hopefully feel better tomorrow.

I have the flights booked for Frankfurt thanks to Andrea who has been so helpful.

I am still reeling from all the love and devotion I have recieved from all my friends and warriors. I will admit, I have had a few tears about it. Thank you all so much for all you have done/are doing for me. I will never forget it. x x


Tuesday, 24 May 2011

What can I say, I am overwhelmed by the kindness and generosity of people. The treatment on the 20th is all booked, flights are all booked, Jeanette, my friend who joined me on the first 6 treatments is coming with me on this trip.
I am so lucky to have such wonderful people around me. The hotel is paid for, compliments of Andrea and Roshy who run Travel link travel agents. Their link is on the front of the blog page.
The total so far with the fund raising is £1,141.38, Thank you to everyone who has contributed to this amount and a special thank you to my baby girl for her badges she is selling. They are going so fast.

I am thinking also about my lovely friend, Margaret, who is very ill. My thoughts and love are with her and her family. x x x x

Sunday, 22 May 2011

Feeling better today.

My throat it feeling much better today. I am still in awe of the warriors for pulling together to help me.
We have managed to sort out June's treatment. I will wait and see what Prof says when I go over about what happens next.

Siobhan's badges are selling very well, thank you to all those who have bought them and a special thanks to Jan who has said she will sell some.

It has been a quiet and relaxing day today, just what I needed.
I have been sorting out Kieran's clothes that are too small and have decided to put them on ebay and put it towards Theo's holiday fund.
It would be lovely to carry on the fund and use it for others in the same position. I am not sure if we can make it into a charity as there is so much more than fund raising to deal with. It would be great if we could. There are things on the horizon but at the moment I am not sure what will happen with it.
I have gone onto a soft diet at the moment as I have a stricture again which is to be expected so I will have to be extra careful with what I eat, drinking on the other hand is amazing....still no coughing!!!
I am hoping this is it with the TOF now, just check ups in 6 weeks time.
Next venture, the gall stones.... then Theo again.

Saturday, 21 May 2011

We've done it!!!

Well I am so shocked, After just 24 hours, I have a treatment paid for by my lovely friends.
I can't thank them enough and still feel very awkward about it all.
I need this treatment to work again as I will then tackle the PCT and get this payment reimbursed.
Siobhan has done so well with her new website, She has called it ....... And don't come back.
She has called it Theo's holiday fund, what a great idea.
I think the fund will have this name now. We have nearly £400 on the page and another £1,300 on the way.
With thanks to Cher and Neil who will be traveling to Frankfurt for Cher's treatment on June 20th. They have helped immensely and I am looking forward to seeing them again.
One important thing I need to do is get back on my mistletoe as I know this did help me a lot. I want to start it again after I have had the gall bladder out as it drops the blood pressure and I don't want any interference from that with the anesthetic.
I am not sure when that will be but hoping for the end of the month.
I have still got a little sore throat but it is going. I am drinking so much better, I think there may be a result when I see Dr TOF in 6 weeks.

The end of the world is nigh!!!....or is it??

Siobhan's button badge she has created to raise funds for the Germany treatment.

Today, 21st May, has been predicted to be the end of the world by Harold Camping in the USA. Apparently only the good will be saved. Well thats me left behind then and probably the majority of the world. Seems the only ones to be saved are Mr Camping who is in his 80's and had his life and those who have funded his empire.
Well, will this be my last blog? I hope not, I still have so much to achieve : )

To all those who have paid into the treatment fund, we have over £1,000 now. I can't believe how much caring and love is around.
I do find it very hard to accept things I am happier giving. It is the pride thing and I am trying to sit on my hands so to speak.

My gorgeous daughter, Siobhan, has created dragonfly button badges which she is selling for £1 each. All going to the treatment fund. Please contact me if you would like one.

Friday, 20 May 2011

Back from Taunton.

All went well with the TOF op, Dr TOF told me that when he went in to look for the clip, he couldn't find it. He found out what had happened, it had become a part of me. The oesopheal tissue had grown around it so it wasn't visible, this had also closed part of the TOF. Dr TOF put another clip on and we are both hoping the same thing happens again and this will definitely close the TOF. So it was good news all round.
I got the 10:18am train home, the train ticket prices are shocking. I was quoted one price of £42.50, that is for a single journet from Taunton to Plymouth and with a disabled rail card.
I was then quoted the cross country price, with the rail card, it was £14.50. Unbelievable and I don't know how it can be justified. The ticket operator wasn't happy, he kept telling me the £14:50 ticket was very under priced...I don't care, I'll take it : )
My throat is sore from having the endoscopy and airway tubes in. I will be talking with a whisper for a couple of days so I hope Kieran behaves as I cannot shout at him.

My friend, Ali, has started a fund raiser to get the funds for the German treatment. I am having such a problem with accepting this but know I must for the children especially, Siobhan is making her little pin badges and selling them for the fund. I am not used to accepting things like this, I find it very hard but I know how mch it means to Siobhan for me to accept this. Ali is a wonderful friend and fought long and hard for Steph who died after a long battle with breast cancer.

Wednesday, 18 May 2011

test

Test post from phone.

TOF op tomorrow.

I had an email from Prof Vogl, he has said there is no problem with using Alimta with embolisation. This is great news. I am going to get the TOF and gall stones sorted out first and then get organising a trip to Frankfurt.

I am having another attempt to seal the TOF tomorrow. Dr TOF is removing the clip that is there and adding a smaller one.
He has treaded very carefully with this as he didn't want to damage my trachea by pulling it up through the oesophagus to seal it. He has seen that this won't happen and is much more confident now.
If this is successful, babies born with my type of TOF will not have to go through an operation, they will have it sealed, endoscopoly this will be a great step forward.
I am not expecting to be home tomorrow although I am a day patient. I usually am observed for 24 hours so better behave myself.
Thank you to my Children,sister, friends and fellow warriors for all their good wishes, especially Mavis who has had bad news herself but still manages to smile through the pages of facebook.
What would I do with out all these wonderful people.

On a different note, Rich made scrambled egg for tes, his first attempt, with a little instruction from me, it was lovely. : )

Imaging report.

I have slight progression, Theo is on the move again. Dr D advised I speak to Prof Vogl about changing the medication used as I haven't responded at all this time.
I will write him an email and send him the report below.


Derriford CT dated 5/5/11 reviewed and compared to the most recent CT performed at the nuffield hospital dated 16/02/11 at the request of Dr D.

The small volume left supraclavicular lymph andenopathy is stable. The left superior paramediastinal tumour mass has increased in size, measuring 48 x 37 mm on series 3, image 13 of CT dated 05/05/11 compared to 44 x 27 mm on series 40i, image 14 of previous CT 16/02/11.
The left internal mammary lymphadenopathy has marginally increased in size, as have the left prevascular and left paracardiac lymphadenopathy. The left hilar adenopathy is stable. The pleural disease in the left base is stable. The small right pleural effusion is new. The parenchymal appearances are unchanged and likely consequent upon aspiration due to the tracheo-oesophageal fistula which remains patent.
The abdomen remains normal.
Comment: overall slow progression of the intrathoracic disease.
Tof or all done. Dr tof said the previous clip was now over grown ame the fistula was bubbling. He put another clip on the fistula which should now close it for good. I am hoping to be home tomorrow. Thank you so much for all the messages of support : )

National asbestos helpline.

I met m,y friend, Carolyn for coffee yesterday. We had a wonder round the shops, I picked up school trousers for Kieran. He is growing so fast now and is in a size 7 shoe!
He is going the same way as his brother, he was tiny up until he was 14 and then shot up, way past me. Kieran is going the same way. He is so thin around the waste though that I have to buy the trousers with the adjustable waist band. I buy them in M&S, 2 pairs for £12.
After leaving Carolyn, I went to meet Richard who is with the National Asbestos helpline.
We have a very long tolk, well, I think I did most of it as usual : )
He has some great ideas about a pilot scheme he wants to set up in Plymouth.
If it works here, we can move it to other parts of the country. I will add more when I have the information.
I left Richard at around 3:30pm, by the time I got home, my head was spinning again.
The dizzyness was back. Amber needed to go to the vets and I wasn't going to put Siobhan and I at risk by driving so I ordered a cab. We got Amber to the vets, we think a mouse had but her lip and it was infected. She was given a long lasting anti biotic injection and sent on her way. It's her own fault, I think the mouse in question maybe the half of one I found that morning in the conservatory ..... YUK!!
When we came out of the vets, the cab driver had waited for us and took us home, she was lovely. It is so good to have great service.
I decided to go to bed early as I was still feeling very dizzy, before I did , I called the cab company and told them just what I tought of the service I had. People are very quick to complain, I think we all need to commend good service as much if not more than complaining about it. Well done Plymouth cabs.
I had made part of my bed before I went out this morning and needed a clean sheet put on, I asked Rich if he would do it for me. When I went up, there was the bed all made, columbo ready and waiting on the dvd and the heated blanket on.... how wonderful. : )

Today I get the results of my CT. I am hoping for good news. My appointment is 2:20pm. I will add the results when I get back.


Tuesday, 17 May 2011

Having a busy day today

Dolcie, Angela, Tracey, Myself and Pam. Judith at the back. Last year in Manchester.

Today I am going to try and keep myself busy and not think about tomorrow.
I am meeting my friend, Carolyn, for lunch and and then off into town to meet, Richard, from the National Asbestos Helpline for a coffee.
I am thinking greatly of my good friends, Angela and Tracey as they celebrate the life of their wonderful dad, Mike, today. It is going to be a tougher week for them, my thoughts are with them and their families.

I have been thinking seriously about writing a book but at the moment don't know where to start. I want it to be about my journey with Theo so far and not about my childhood or family life as too many others will cause problems if I do that.
I think it will be good therapy for me and will help me see just how well I have done, to get into my 5th year with mesothelioma is fantastic and I hope it continues. I am sure it is longer than that as all the signs were with me back in 1994.
I will certainly add it to the blog if I decided to write one.

I woke up in the night absolutely drenched. I have never sweated so much before, it was so bad I had to change out of my nightware. Probably to do with Theo and am hoping it doesn't mean he is moving back in.

Monday, 16 May 2011

Just had a blast of emotion while sat on the sofa, I don't think I have every feel so lonely and frightened as I do when it is time to get CT results, this is the worst it has been.
I am terrified that Wednesday I will be told that Theo has progressed. I have got to stay positive and not let this get to me but it is so hard.
I wish my dad was here, he would say just what I would want to hear and give me the biggest hug he could find.
He had such great advice, I loved him so much and miss him even more.
I will have to shake my tail feathers and get out of this mood.

CT blues again.

I went out to do a few errands this morning, arrived back home and sat in my car for a few minutes. I could have burst into tears. I felt so sad and so very very lonely although I have many wonderful people around me. They never see what is going on in my head, the trauma and fear about Theo growing again. I can't really descibe it other than total fear I suppose. I want to turn the engine on and keep driving.
I felt like this last week, I was debating about not having the CT scans anymore. I felt like that today but know I have to do this. I need to do it for my children and for other meso warriors who will be going through the same thing. I hope this will help with Prof Vogl's research and one day the treatment is done in the UK.
My biggest fear has to be that Theo is on the move and I cannot afford treatment anymore. Many have said they will fund raise but I feel so bad about doing that as I don't think anyone should have to beg to stay alive.
I would like to see the PCT paying for this, after all, I should have monies put aside for chemo in this country and haven't used it. Rant over, back to life and all that is happening this week. It is going to be a busy one.

Washing line.

I forgot to say, we have been in this house now since November 2009 and haven't had a washing line. David, Siobhan's boyfriend, was so kind and fixed a whirly gig washing line up for us. The hole for the pole was already there and was too small, he managed to make it the right size and got it all up and running. so good to be able to hang washing out on a lovely sunny day x x
Thanks you David : )

No more Dizzy Mare!!

The dizzyness from the inner ear infection seems to have gone thank goodness.
I am eating a lot better and seem to be back to my normal self.
Good luck to my friend, Mavis, this morning. She has her CT results today and I know that I and all the warriors will be hoping for good news from her.
I have mine on Wednesday. Thursday it's Taunton although the TOF has been behaving itself.
I am disappointed about Friday as Kieran is doing his assembly and has quite a lot to do and I will miss it as I feel sure I won't be back on Thursday evening, I know what I am like with aneasthetics.

Saturday, 14 May 2011

Well done Chris.

Chris Knighton has reached her £1 million target and I am sure will be celebrating at the annual May Ball tonight in Newcastle.
Sorry I can't be there but hope all who attend have a wonderful time.

And We're back!!!!

Apologies for no updates, Blogger was down for maintenance.
Thursday I met my friend, Tina for breakfast. I haven't seen her for a few weeks so it was good to catch up.
Lunch time I met my friend, Mandy, she is a great inspiration for me. She does her own kidney dialysis 3/4 times a day, at home, and still manages to smile and live her life to the full. She has taught me so much about facing up to challenges, such a wonderful friend and great to get back in touch with her.
Yesterday was an eventful day.
I met some local warriors in the city centre for coffee. It was wonderful to catch up with them all.
I left them around lunch time and went off to get some school clothes for Kieran. When I got home I was feeling very dizzy. I had been vomitting for the previous 3 days and put that down to just feeling unwell since taking the steroids, even thought it may be the gall stones.
As it got worse, I called my GP. She was'nt available and I saw someone else.
Siobhan and I got a cab to the surgery.

The Dr checked my blood pressure and ears and determined that I had an inner ear infection.
Siobhan came with me and while I lay down in one of the Dr's rooms, she went and got the prescription I needed.
I was told to go home and stay in bed for 24/48 hours and take the anti- dizzy drugs.
They worked well and stopped the sickness so at leats I could eat something.
I felt and still do feel so stupid but am so very glad it is a trivial illness that will be sorted out very quickly.
I am so cross with myself as I was all set to go out to the theatre with my friend, Carolyn tonight. We were going to have a meal and a show.... GGrrrrr!!! Now I have had to cancel it. I am sure we will go to another show. She can tell me what it was like.


Wednesday, 11 May 2011

What a let down!

I saw my oncologist at the desiganted time and the wonderful NHS, in their wisdom, haven't passed the CT scan over to him. I will have to wait till next week now to find out what is going on.
Dr D told me that the NHS scan results aren't issued for 4-6 weeks. That is such a long time when someone has an aggressive illness. It is such a mess. I am so very lucky being able to go private for my treatment.
Everyone should have that opportunity. So, the next week will be the count down again, I will have to unscramble my mind and get ready for next weeks result and am hoping that it will be good news.

Here again.


The CT blues have started, they started last night. I was thinking to myself and asking myself if I really want to put myself through all this misery every 3 months or if I should just live in ignorance. I don't want to go to see my oncologist but know I will have too. I want a good result and want to go into Dr D's office and hold my head high, my fear is that I will go in all confident and be told that Theo is on the move again.
I am hoping what the Prof did in January has worked, if it has then it will be a big fight to get funding.
Seems that the NHS does not value my life or anyone who needs treatment elsewhere. Rather than fight aginst what the Prof is doing, why don't they see that he is trying his best, on his own, to get a cure for this awful disease.
Well, back to today and the nightmare it will be till I see Dr D.
I will update later.

Tuesday, 10 May 2011

Mike and Kazik.

Todays blog is dedictaed to 2 wonderful people who have left their families.
Such a devistating time for both families. Thoughts and love are sent to them as they come to terms with losing their heroes.
Wrap your angel arms around your loved ones and guide them through this very difficult time.


Saturday, 7 May 2011

Great night last night.

I went out last night to my friend, Carolyn's house for a meal. It was wonderful. I met her friends who are such great fun and was made to feel very welcome. They have all decided to do a come dine with me evening. I am Carolyn's helper, glad I am not cooking as I am not very good. I got home around 12:20pm and feel so tired today. I have had a nap on the sofa which seems to have done the trick. It was so good to be able to eat and drink as normal last night and still no coughing with drinking which is fantastic. Soon I will find out if the TOF is closed.

Friday, 6 May 2011

Amazing!!!!

I am so impressed. I have had a glass of orange juice drink this morning and I haven't coughed once!
I do think the TOF is partially or fully sealed, Dr TOF will be pleased.
The asthma seems under control now and I am feeling so much better, back to my normal self.
Halo, my car, has her MOT today. Hope all goes well for her as she is my life line.
Kieran did a radio broadcast last night, he is one very impressive boy. He did his own chart show, his chart that he has made up and has it all in his head. He did a top 40, nothing written down, just reeled off as he needed it. Only trouble is there is no punk or rock music in it : (
He says he won't put it in there, not even one.
He is a mean Bean sometimes.

Thursday, 5 May 2011

Much better today.

I have been taking the steroids for 3 days now and I have found a big difference in how I feel. I am back to my usual self, eating better, drinking without coughing (I think the TOF may be partially sealed) and breathing seems a lot easier than it was.
I don't think it was the mesothelioma or Theo playing up after all. If he was then surely the steroids would not have been as affective as they have been.
I have my CT scan this eveing and will get the results next week from my oncologist. I am hoping so much to have another stable result. I do wonder if the longer I go on and Theo hasn't advanced, does that mean that it will be unlikley to do so in the future? I am hearing of so many more survivors stories, all different treatments. Each person is different and it makes a big difference with what type of mesothelioma each person has.
I feel I am very lucky having the slow growing one, the epithelioid.
I have made my vote today and will continue to support my MP who has been such a great support to me. I hope her party gets in again, she is a jewel for mesothelioma sufferers and works so hard to get what is right for them.
Kieran has been doing his radio show again. He is loving it, and it is keeping him out of trouble.
He will be on again at 4:00pm until 6:00pm I think.
He will be back to school tomorrow. Next week all school will be back to normal, so many bank holidays in 2 weeks, it is too much!!!

Wednesday, 4 May 2011

Coffee in town.

I met my sister Wendy this morning. We went into town and met my friend Carolyn and had a coffee together, it was lovely. I was very impressed with myself as it was my second day of the steroids and I drank my coffee without coughing!
I am amazed, I am hoping that the TOF is partially closed but will wait and see what Dr TOF says on the 19th May.
I bought some clothes in M&S with the voucher I got for doing the patients forum for mesothelioma UK.
I want to get May out of the way and then maybe I can get my self back on track and back to work at last.
CT scan tomorrow. My oncologist is going to review it for me which will make it a bit quicker as I can go through my private health care I have with work.
Voting tomorrow, I am still a little confused about this AV thing but Siobhan is very good at explaining things and I think I know now which way I want to go.

Tuesday, 3 May 2011

GP again today.

I am feeling a little better this morning. The rain and the wind are here, so much for the good weather but it was wonderful while it lasted.
Kieran went back to school today. He was very good over the weekend. No tantrums and angst which is great. He has took his home/school book with him which says that he raised £128 for cancer research. I am so proud of him.
I made an appointment with my Dr today, she thinks my meso is on the move. Not sure if it is, it feels more like asthma, but we shall see. This did upset me a little as it brings me back down to earth. My GP is wonderful and as I have a CT scan on Thursday, she told me I should see my oncologist for the results rather than wait for a letter. I have made an appointment for next Wednesday 11th May. I am hoping so much that Theo is not moving back.
I have bought myself some build up milk shakes as I haven't been eating properly and have dropped 2 dress sizes. I hope to pile it all back on soon.
I had a little teary time with Siobhan, she is wonderful and I do worry about how much that little girl has on her shoulders.
The boys seem to float by quite easily, saying that, they have all been so helpful over the past few weeks. I feel about 90 and will be happy when I can kick myself up the backside and get back to normal. Something good today, I didn't cough too much when drinking so I am starting to wonder if the fistula is closed, I will find iut in a couple of weeks. May is going to be a busy month for hospitals!!

Monday, 2 May 2011

Yay... chest infection has gone!!!

It looks like the chest infection has gone at last. I have still got a slight cough and am asthmatic.
This morning I was nauseous and light headed. I find if I do anything I am breathless but I think I am a lot better than I was.
I will speak to my GP tomorrow and get yet another sicknote.
Kieran is back to school tomorrow and off again on Thursday so a very short week for him.

Sunday, 1 May 2011

Feeling much better.

The cats woke me up this morning, they were play fighting on my bed and trying to investigate what was down the side of it. Silly Kitties!!

I am so glad I didn't have the op done on Thursday as the last few days I have been very achey and cold. Not sure if I have a fluey type bug but I think I would have come out of the op quite bad if I did have it done so that was one very good decision.
I am feeling much better today. Just a little breathless and still coughing but not as much. I will have to get another sick note from work as mine runs out on 1st May.
Will I ever get back to work? I hope I do as I miss my friends and the social aspects that a job brings.
Kieran has said he wants to continue his radio station for fun. He is going to do his own chart show. I have said to him would you like to do this as a job as you can go to college and study. He has said no as it will take too long. Looks like it will be an obsessive hobby then : )
It is great to see that his autism is being channeled in to a hobby. I know we all have to listen to him continuously talk about the charts but that is Kieran.
Kieran has a short week of school again, none on Monday and none on Thursday due to the AV election. The weather has changed, it is now very overcast, that could be why my breathing and coughing has got better.