Sunday, 28 February 2010

Cats, Children and me.

I am taking Stork back to the vets today, I don't think he has done a wee and he doesn't look very well. Kieran is still complaining of a sore back. His voice is wavery and it is worrying me, do I send him to school or not?
I will make that decision tomorrow morning. I am not putting too much on here because someone is relaying it all and I want to sort things out myself rather than have gossips do it.

I have my CT scan next week and can feel the CT blues starting. It will be tears until Wednesday and depending if I have the disease in the right lung or not will determine how I feel.

I am feeling a little lost and down at the moment. I will have to call on a few wonderful shoulders to support me through next week.

Saturday, 27 February 2010

1000th post!!!

1000th post!!!

Just to recap what this site is for and why it was set up.
When I was diagnosed in November 2006, my world fell apart. I looked around the internet and found nothing about mesothelioma from a patients point of view.
I decided, with the help of my daughter and the inspiration from a site called "the furry monkey", set about making a blog that was a diary for my children and also a day to day account of living with mesothelioma. I put down how I feel about what is happening in my life, this is important to a lot of people with this disease and shows that you can live with mesothelioma and not just die from it.

Some people have taken it too far and read far too much into it. I will continue to write how I feel and will document anything that happens.

Worried about Kieran.

Kieran went to casualty this evening, poor little Bean. He said his back was hurting and he was having trouble breathing. It was frightening to see, I think he is having panic attacks.
Dr said he is stressed. I really need to get him to speak to someone. He was so frightened about not being able to breathe properly and said he thought he was going to die. He has seen me in a bad state at times with my breathing and must think it is the same.
He has such a lot more to go through than other children. It makes me sad to feel he has to deal with so much and doesn't know how to talk about it. September in his new class was very hard for him, I hope he can find his confidence to get back to being the happy little boy who enjoys school.
A friend has told me that her sister was very worried about going to school and leaving her mum who had cancer, as she thought she wouldn't be there when she got back. This could be the same for Kieran, so much has happened over the last 6 months, I went in hospital for a week with pneumonia, have had radio therapy, CT scans and many other appointments. It is hard for me so it must be doubly hard for Kieran, Siobhan and Rich.

Friday, 26 February 2010

Kieran's not well again.

For 2 days now Kieran has said he has a bad back. It is very difficult communicating with my son as he is autistic and finds it difficult to tell me how he feels, he has had a very stressful start to the term and as a parent with a terminal illness it is very difficult to be firmer with him and I also have to consider that he may actually have a bad back.
I took him to the Dr's yesterday and he was given paracetomal for the pain.

I am so confused as to what to do at the moment, I want to say go to school but don't want my son having the memories of an awful, tyrant mother not listening. Unless someone lives with the horrors in my head, they will not understand how it feels every day to live with this nightmare.
I want to protect my children and do my best for them, I want to be here for Kieran in the future, I want to see him grow up and have his own home, a family and all the other things he will do as an adult. I only hope that with some help, Kieran can get over this hurdle.

Thursday, 25 February 2010

Ricky Hill

It is with great sadness and a heavy heart that I add the passing of Ricky Hill to my blog.

He had gone to Germany for treatment and was doing well. He had a bout of shingles which was very painful, he was given morphine patches for the pain. His body didn't absorb the morphine correctly and he fell ill.
Also his mesothelioma had become active again. This has been a bitter blow to the family and to all who knew Ricky and his family through facebook.
Todays blog is dedicated to this wonderful man who has left behind a broken hearted lady who doesn't know how she is going to rebuild her life with out her love.
Jenny and family, everyone at meso and me sends their condolences to you and your family. We are here for you whenever your ready, heaven has gained a beautiful angel.

Tuesday, 23 February 2010

School trouble again?

Kieran has started to be sick again, he isn't happy at school. I am taking him to school in the morning as I want to speak to someone and am finding it impossible to get an appointment.
He has had problems since he started and doesn't seem to have bounced back at all.

I am wishing Ricky Hill well as he is still in hospital. He has been to Germany and is doing well in that area. He has had morphine patches for pain and it looks like he was given too much which has made him ill. I am hoping upon hope he gets well very soon, Also Barbara Bolton has been unwell with a chest infection. She has her 2nd appointment with the Prof next month but it may need to be changed as she needs to be on top for the treatment.

Good luck to both of them and I hope they both have a speedy recovery.

Monday, 22 February 2010

Good weekend.

Saturday was good, I took Kieran on one of his expeditions to the railway station.
We haven't been for a while and it was good to spend some time with him. I was happy to stay as long as he wanted to.
I am still routing for Barbara Bolton and Ricky Hill to get well. They are both in hospital at the moment.
Kieran is back to school today, he doesn't want to go as he says science is too hard, I have written a letter to his teacher informing her of this.
I hope he has a good first day back.

The drawing of Kieran and I was done by Siobhan's friend, Laura. She has made me look very glamourous , no wrinkles!! Thanks you Laura : )

Saturday, 20 February 2010

CT scan in 3 weeks.

I saw my oncologist on Wednesday, I had made a mistake, the pattern of CT scan, oncologist, CT scan oncologist had been broken. The appointment was with Dr D and not a scan.
Dr D was very supportive. He showed me the scan of my right lung, pointing out that there was a triangular blur in the lung. This was more than likely due to the radio therapy I had before Christmas. It could also account for the abnormalities showing up. He suggested I have another scan in 3 weeks time and hopefully this would determine the nature of the latest scan.

My friend, Gina, came with me and asked Dr D a very important question. If the abnormality turns out to be mesothelioma in the right lung (the left is fine, Prof Vogl's work is still stable) what treatment would I be offered in the UK? Dr D asked if Prof Vogl was still happy to treat me, I said yes. He advised that I should continue with that. I said I would need to ask for PCT funding and he was happy to support that.
I found Dr D very helpful and am so lucky to have a good GP, Oncologist and Professor all striving for the same thing as me.

Siobhan and i had a trip to Tavistock yesterday. It was lovely, very quiet, we had lunch in a pub and ambled around the shops before making our way home. We went into Tavistock indoor market where I found some little snowdrops. The snowdrop has been adopted by mesothelioma charities as a symbol of hope.
Kieran came home yesterday after being with his dad for most of the half term break.
We are off into the train station today, we haven't done that for a while.

Wednesday, 17 February 2010

Mr Jordan

It is with great sadness that I add the loss of Lorraine's dad to the list of mesothelioma hero's who have lost their lives to mesothelioma, one of the cruelest diseases of the 20th and now 21st century.

Mr Jordan visited the Prof and had one treatment, he passed away on 16th February with his family around him.

It will be in his memory that all meso sufferers will continue to search for a cure for mesothelioma.

No family should ever have to experience the loss of a loved one, it doesn't just affect the sufferer but the whole family.
I am sure I can say on behalf of Mesothelioma and me and all friends on facebook, how sad we are to hear of Mr Jordan's loss and send condolences to the family left behind.

Tuesday, 16 February 2010

Tearful today

I am feeling quite low today, I have had an email from the Prof and will be having another CT scan tomorrow to determine if Theo has returned in my right lung.
Prof says my left lung is fine.
Here we go again, on a downward spiral to misery.
I will see what Dr D has to say and will be going back to Germany if it is the case.
I will be asking for PCT funding and intend to get it. Why should anyone have to pay for this treatment when monies are already available for treatments in the UK that don't work.
Rant over, Kieran will be back home tonight, it will be good to see him again, he left for Dunstable last Friday. I do miss him and feel a train trip coming on : )

Sunday, 14 February 2010

It has been a busy weekend. I spent Saturday evening with my friend, Ali. We had a great time out and I look forward to doing it again, Today has been great as well. Tina and I went to Looe in Cornwall. It was a beautiful sunny day.
As it was Valentines day, we thought we would keep ourselves busy and enjoy a day out. We had a relaxing walk through the cobbled streets and enjoyed fish and chips for lunch. I ook forward to another day out with Tina. She has become one of my best friends.

Kieran is with his dad till Tuesday so it was great to be able to amble around at our own pace and not have to rush back.
I have a CT scan on Wednesday and will find out if the right lung as disease or not in the following week.
I feel wonderful so am not too worried about it. That could all change nearer the day!!

Friday, 12 February 2010

Valentines day looming

I went out for lunch with my friend, Carolyn, yesterday and we had a great time. We had a pub lunch, fish finger sandwich! It made a change from the usual meals we have.
I am going to visit Tina for lunch today, she is having a rough time at the moment. She lost her husband 3 years ago in a motorycle accident. the court case is still going on and will hopefully end on Monday. She will be grilled about the day it happened and have to justify why her children and her deserve compensation for their loss. I will be supporting her fully. We will be going out on Sunday to try and take her mind off it.
I do feel we get on so well because of the tragedies we have suffered. Our families mirror each other. How we deal with the children and our own emotions. There is an understanding that doesn't need words.

Kieran is off to Dunstable with his dad today. He will be back on Tuesday. I gave him his valentine chocolates yesterday as I love him so much, Siobhan and Rich will get theirs on Sunday. Last year Mr S turned up with flowers, there will be nothing this year. I am happy with that, I don't want to complicate my life any more at the moment.

Wednesday, 10 February 2010

Ali came over today, she lost Steph back in November after a long battle with breast cancer. She is keeping herself busy and trying to get her life back together after losing her partner.
She said she would fit a fireplace for me. She has done an amazing job.
It looks wonderful.
Ali and I looked around for fireplaces, Wickes, Homebase, B&Q, if I wanted to pay £700-£1000 I could get what I wanted, I went onto ebay and found this one for £325.
The company gave the best customer services I have had for a long time.
I already had the fire and can now cosy up on these cold days, I don't use the heating part of this, the fire is for effect onyl but i think it is very effective.

Monday, 8 February 2010

Good weekend.

I went out on Saturday night and had a great time (as you can see from the picture!!).
I met up with Chrissy and Debbie, who also has mesothelioma. She is doing very well.
I am feeling much better, still a little mucky with the cough but much better with the breathlessness.
I have a CT scan on 17th Feb to examine the new nodes that have shown up on the right lung. Not sure what my oncologist will want to do. I am sending the images to Prof Vogl and he can take a look to see what he thinks.
The momentum of the treatment is getting bigger.
There was another feature on the politics show that showed exerts from letters from patients having the Prof's treatment.
It has to be recognised at some point that this treatment works, it is saving lives.
Good luck to Karen's sister who is having her first treatment with the Prof today.

Saturday, 6 February 2010

Busy, busy, busy!!!

I have had a very full couple of days. I went into work on Thursday to speak to my boss about returning to work. It seems the support is wonderful and all is being done for me to get back into it again.
I went out for lunch with my friends yesterday to tear up some more plates as Today is Heather's lung leavin' day. Heather Von St James lives in the USA and had her lung removed after she found she had mesothelioma. She celebrates this every year.
I spoke to my GP yesterday and I have another month off. I think this is because the CT scan has thrown up some queries about the right lung. I also have some more anti biotics.
Siobhan's friends have gone home today after spending a week with us.
I have been really busy on facebook as the community of Prof Vogl patients and cancer patients is getting bigger. Barbara and Veronica have been over to see him this week and seem to be doing very well which is great.
I am going out with friends tonight, I haven't been out for a long time and am looking forward to it.
I have started taking Savestrols today, I think that is how it is spelt!!!
A lot of patients are taking them and I thought I would give it a go.

Thursday, 4 February 2010

My report.

My Report.

CT scan chest abdomen pelvis

Comparison is made with scan September 2009.

The left-sided Mesothelioma shows response to treatment. The changes at the left base and appear less marked and more impressive is the reduction in the adenopathy the lower pole the left hilum which has more than halved in volume. The mediastinal and internal mammary adenopathy is static.
Pulmonary nodules in the left lung, at the base, are smaller than previously. However the lung nodules which have an unusually broncho centric distribution in the right and mid and upper zones have increased in size. While their location is somewhat atypical the progressive nature is highly suspicious of malignant change and progressive disease with lymphatic carcinomatosis.
The iliac and inguinal adenopathy is anything slightly smaller and likely to be reactive in aetiology.


The mediastinal disease is reduced in volume followign radio therapy, Nodular disease in the right lung is worrying for lymphangitis. No evidence of disease in the abdomen.

Wednesday, 3 February 2010

An interesting day.

Well....first things first, the appointment went very well and I will add the report tomorrow. My friend Jeanette came with me, she has been with me to every appointment in Germany.
Dr D said the lymph node has halved in size and the Mesothelioma is no change which is great news.
The right lung is showing some nodules but this could be due to radio therapy as this can cause nodes to form.
I am having another CT scan in 2 weeks time to investigate the nodes on the right. Hopefully they will be gone and that will mean it was the radio therapy.

On the way back from the hospital I pulled into the side of the road to let a car go by, This car then proceeded to pull in front of me. I had to reverse back to give myself room to get out, before I had a chance to move out, a car came down the inside and clipped my car as they must have thought we were parked.
No one was hurt, not much damage to the car but the person who caused it all was unwilling to take responsibility. Not sure what happens now as she won't be included in any claims. We swapped details and I will contact the other driver tomorrow. The person who pulled in front of me is known to be a careless driver but she won't be prosecuted or repremanded, she will be allowed to drive like an idiot probably until she kills someone.

Radio therapy results today.

Gina and I got angry about cancer and other things that make us want to rage.

I am going to see Dr D today to get my results from the radio therapy I had on my lymph node last year.
I am hoping that all is good, if not, I will be asking for PCT funding and have treatment from the Professor.
Yesterday I met Max and her family. Her dad has Meso and has been going to see Prof Vogl. He seems to be doing well with it.
I also saw my friend Gina. We had a lung leavin' session with paper plates.
Heather in the USA has been doing well, she had a lung removed and to celebrate she has a big party. She gets plates, writes all her fears and anger on it and then smashes it up.
She has done this for 4 years and we think it is a great idea.
Gina and I used paper plates and tore them up then burnt them. I was a little concerned about her rug she has in her living room, she said it would be ok. We removed the pot and it had melted Gina's carpet : (
It can be sorted out, if not we can get a new one for her. She has also been burgled, it makes me so cross as this lady does so much for so many people.

Monday, 1 February 2010

Good luck Lesley and Veronica.

Lesley's mum, Barbara is off to see the Prof tomorrow, this will be her first visit. Lesley, Barbara's daughter and Barbara are very nervous. We all were when we first went out but the Prof manages to put us all at ease. Good luck to Veronica who is seeing the Prof on Wednesday. She is doing well, I hope she gets a good result.

I will also be thinking of the Prof as his mother is very poorly at the moment. I hope she has a speedy recovery, she should be very proud of her son and what he has achieved, in his words he is a hard fighter.

I am feeling much better today, the pain in my back has gone and my breathing is much better.

i am looking forward to meeting Max tomorrow, her dad has been to see the Prof for treatment and is doing well. It is also Heather's (USA) lung leavin' day. She has mesothelioma and had part of her lung removed.