I was asked today how we started Mesowarriors in the UK
So I put together a part of the story.
I Found Debbie when I was first in trouble in February 2009 and she helped me through my diagnosis and VATS with advice as she had been through it all.
She had a couple of groups on Face Book and had friends around the world she was helping people to get to Germany to Prof Vogil who had Chemobilization for treatment but it was private and very costly. She was so happy she had found other sufferers.
I joined in and as was having Chemo and trials I built up more Mesowarriors to the group. Jan Debbie and I would spend long evenings talking and working on the Groups and we built them right up. I have carried on building on those groups and adding my own to back my Web Page up. Mesothelioma Onestop and Asbestos Onstop.
Treatments are moving on so we have to keep up with what is going on in the NHS.
This has bought about the Asbestos Industry of Surveyors, Strippers, Manufacturer’s of Equipment, a huge array of business men which I meet up on Linkedin Tweet etc .
They seem to have taken me to their hearts as My Immunotherapy has bought remission. So I devout my life to Mesothelioma and Asbestos.
Mesowarrior groups have built right up and we now have a Committee.
Angela who along with her sister Tracey is the Entertainments and arrange holidays where we all meet up for a weekend away. Blackpool is our next one next June
Karryanne and Stacey are the children’s officers as they have young family and we are finding we have a Third Generation coming along who are wanting to carry on running the groups for many years to come.
Linda Thomas is in Australia now but she helps as well and we all run a support group from our homes on face book and emails.
It has now got official recognition as such and a meeting I attended this week in London my name badge on the table said Mesothelioma Warriors. I could hear Debbie giggling at that.
I do hope she is proud of the way we girls have stayed together and we have kept together and enjoy fun as well as tears and sadness.
There are so many Mesowarriors that have joined her in heaven I bet she has joined them together and has Raves every day. I dont even try to add up how many it is to frightening. We have lost 5 this month that were in our group and we have more that are so ill and I keep finding what is the latest trial and praying they get more treatment.
Kieran Debbies son has grown up so much now into a young man and we all promised Debs we would look out for him so we do, although Angie is the true adopted Auntie and she is always there to advise him. He has of course a loving Father who is really looking after him but it doesn’t hurt to have cyber Aunts does it?
So that is a brief what the Mesowarriors Uk are.
Debbie Had Pleural Mesothelioma
With Siobhan Brewer, Vagabond Spg Rich and Kieran Brewer.
Published August 2009
Asbestos and cancer
There has been much written in the media recently about the dangers of asbestos, the lack of Government action, and the fact that cases of illness and particularly cancers like lung cancer, colorectal cancer, ovarian cancer, breast cancer and prostate cancer are set to peak between five and ten years from now. Four out of every 10,000 Americans are thought to be infected, but we could not find a figure for the UK.
Mesothelioma is a rare, but aggressive form of lung cancer. Asbestos causes fibres to grow in the tissue of the lungs, greatly restricting their ability to absorb oxygen. The cancer is commonly thought to be a death sentence. One lady, Debbie Brewer, would like you to hear her story. She is very much alive and kicking!
My name is Debbie Brewer and I am 49 years old. I was born in Plymouth in 1959 and am the eldest of 4 daughters.
I have lived in Plymouth all my life and my father was a hard-working man. He had many jobs including being a milkman and working for the local water board but the job that would implode on our family was with the MoD. He gave 3 years of his life to that job and started the time bomb which would destroy him and take him from those he loved the most.
My Mesothelioma story starts in 1994, I was working as a dinner lady at my children’s school and was out in all winds and weathers. I called my GP out one evening as I was in so much pain and after having blood tests done, found I had contracted viral pneumonia.
I continued to have terrible back pain and was struggling to breathe. I couldn’t walk up my stairs to go to the bathroom, I was so frightened that this was the end of my life. I was referred to a chest specialist and was told I had fluid and scarring on the lungs probably due to whooping-cough when I was a child. I was diagnosed with pleurisy and asthma, I thought no more of it and took the painkillers and antibiotics supplied by doctors as it was all I had open to me. The virus left me with terrible pain in my back and struggling to breathe continued.
In 1996 I became pregnant with my third child. I had another bout of the previous problems. I had the same pain, same breathlessness and was hospitalised with a suspected blood clot on the lung. I explained that it was the same thing I had been experiencing since 1994 and stayed in hospital for a week only to be told what I had told the doctors in the first place. There was talk of doing a CT scan. This wasnt done due to me being pregnant. I was 37 years old and knowing what I know now, my baby had saved my life as I probably would have listened to the medical profession and had chemotherapy.
I didn’t bother complaining any more as I had 2 children from my first marriage and my new baby from my second. I was too busy to be in and out of hospital. That was until 2006. My father had been ill for a while, he had pleural plaque which made him struggle for breath and now he had small cell lung cancer. He had worked for the MoD in Plymouth between 1963 and 1966 . His Job was to remove asbestos lagging from the pipes without protective clothing. This wonderful man did this to support his wife and 4 daughters. I watched my beautiful, young at heart father at the age of 69, turn into a frail old man before my eyes.
It was heart breaking. He never knew the problems I was about to face and I am grateful for that as I would hate him to blame himself, none of this was his fault. It was the fault of the greedy management he worked for who failed to tell him the dangers of asbestos and how it was going to impact on his family.
I searched on the internet to find out anything I could about pleural plaque and came across lung cancer, this must be what he has, I thought, Mesothelioma. I looked at the criteria for the disease and was shocked to find I had suffered most of the symptoms since 1994. My father never had Mesothelioma.
I didn’t look into it any further until my dad died in August 2006.
I waited 3 months before I saw my doctor. I asked for a chest x-ray to satisfy myself that I did not have Mesothelioma. How wrong I was, I was called back to see my GP the day after when he dropped the bombshell, I could have Mesothelioma.
I was devastated, I had started to get my life back together, my youngest son is autistic which meant a fight to get him into a school were he was supported. My older children were more independent, I was dealing with Alopecia as well, my hair has been coming out over the last 2 years, and I was starting to get a little of me back. My time was around the corner.
How cruel this was. I waited for 2 weeks before I saw a doctor. I was supposed to have an endoscopy to take a sample from the lung for biopsy. This was declined as the tumour was too far down in the left lung.
I had a VATs (Video Assisted Thoracoscopy) operation on 4th November 2006 which removed 2 litres of fluid and take a biopsy of the tumour. This operation changed my life. The pain and breathlessness had diminished and I felt a lot better. It was a very painful day for my daughter as I have always made a big thing about celebrating the children’s birthdays and the 5th November was hers. Her comment was that it was the worst birthday she had ever had, I had to admit it probably was.
I had tube in my lung for around a week which the district nurse would try to remove fluid with a vacuum bottle. The tube was removed after no fluid was building up and, thankfully, it hasn’t since. I went back to the hospital on 13th November 2006 and was told the devastating news, I had Mesothelioma.
I was heart-broken, I couldn’t leave my babies. Was I never going to see my children move house, get married, have children of their own. My future was gone, I couldnt see anything other than my lovely children having to cope without me and I decided then that I was not going to leave them, there had to be something that I could do to save my life, the NHS wasnt going to let me die, were they?
I saw my first oncologist around a 2 weeks later. There was no urgency in going any further and I was in a multi disciplinary team which is supposed to be a team of experts in the field who would support the patient fully. (I havent had any feed back or contact from that team since leaving the oncologist in 2006). The oncologist was only interested in giving me chemotherapy and leaving me to die. I couldn’t get Alimta with him as he refused me and said I would have to go else where if I wanted it as he would only give me what was available on the NHS even though I had health insurance with my company. He told me I could claim industrial injury benefit, which I knew then I couldnt as I had not worked with asbestos.
He then went on to tell me, while looking at the floor, that I had 6 – 9 months left of my life. I point-blank refused to accept this and decided to look for an oncologist who would be more supportive of how I felt.
The next doctor was great and understood what I wanted. He told me people live for many years with this disease. I had radiotherapy at the site of the operation and decided to name my tumour Theo as I needed to accept it.
Theo was good to me for over a year, no change had occurred, that was until January 2008. Theo was heading for my heart, I already had the cancer in the lymph node from the start. Again I felt let down, I was told by the second oncologist to go home and enjoy myself, how can I enjoy myself for Petes sake, I am going to die!
I was told that younger people than me get cancer and lose their lives, which is terrible I know. He said that they havent had what I have and I should feel grateful for my 48 years. Well I was never grateful for that as I had been poisoned just like my dad. I was determined to live and fight this disease that was trying so hard to take me away from my family and again was not prepared to accept that my life was ending.
I have a website which was designed by my daughter and has been a great support tool for me. A wonderful couple had seen me on This Morning with Fern and Phil and had contacted me as he had Mesothelioma as well. They were trying alternatives and had been to a clinic in Worcestershire, Park Attwood, to have mistletoe therapy. The mistletoe boosts the immune system and makes the cancer cells vulnerable. I made an appointment at the clinic and started the treatment in May 2008.
The couple had also told me about a neuropathic doctor in Harley Street who worked on the blood determining a diet to beat cancer. I went to see him and he told me about a treatment in Frankfurt, Germany that had a Professor who had been having some success with Mesothelioma. That was it, what did I have to lose, I came home and rang the German clinic. I spoke to Professor Thomas Vogl who said he could help me and gave me an appointment for a week later. That was so quick, I got myself sorted and went over.
I was so sure I was going to get the usual knock back and was pleasantly surprised. The Professor was so positive and said he could help me. He said I had to survive as I was now one of his statistics!
I had my first procedure done on 25th May 2008. It is called Chemoembolization and targets the tumour and not the whole system. Each treatment costs 4000euros. I could pay for it as I had a compensation payout from the MoD in Plymouth in 2007 after they had admitted liability.
The procedure is done through the femoral artery in the groin. A catheter is passed through the vein to the tumour in the lung. The chemo is put in and is locked in with an embolizing agent which also cuts off the blood supply to the tumour. After the procedure, I rested for around 5-7 hours before seeing the Professor, he would update me on the procedure and what he saw with the CT scan before I returned to my hotel.
The side effects are being very tired and a little nauseous which lasts about 7 days. I worked full-time all through the treatment as I wanted to keep things as normal as possible for my children.
I returned 4 weeks later for my second treatment and to get the results of the first. I had felt I had a little more lung capacity but put this down to the Professor and his positive attitude working on my psyche.
The Professor told me there had been significant changes, my tumour had shrunk!
It was 10% smaller, I was thrilled. I had 5 further treatments and each one reduced the tumour more. I last returned to Frankfurt in June 2009 for another check up and that showed a yet further 10% reduction; that’s 83% in total since May 2008!!
I feel so well and love the fact that I have got my life back. The Professor has told me that I am his best example yet and is studying me to find out why Theo has responded so well to the treatments. I am now campaigning to get the treatment on trial in the UK as there is so little available to Mesothelioma patients.
I want others to have the hope and joys I have had, I have been in touch with others with Mesothelioma who are having successes also and long may it continue.
Jan Eagerton she only started blogging 2013 but was diagnosed before that. peritoneal can be a longer journey like Jans
Jan had Peritoneal mesothelioma
One of the saddest things about dying from cancer is the realisation that you can see your body deteriorate. At first, especially with mesothelioma, it’s that little breathlessness you never had before. That small incline at the bottom of the road was easy a few months back, now you find you need to stop to take a moment before setting off on to the flat.
In all the years I have been fighting mesothelioma, my one problem was pain, not breathlessness, until last year when I noticed I got breathless walking the dogs, always after walking up an incline.
Just this summer, with a stomach full of fluid I was still marching around. Always a fast walker, on the flat I was walking without a problem, but the stairs, on the other hand, became somewhat tiresome.
Suddenly, after having the drain fitted and taking on a chest infection my breathing plummeted – I can no longer walk five yards without being breathless. Stairs are my enemy, even walking to the kitchen and back takes all my strength. This is full on realisation that makes me worry, ‘Will I always be like this?’ ‘Can the chemo reverse this,’ and lastly, ‘Is my time nearly up?’
There are some solutions to elevate the problems of mobility, such as a wheelchair for going out, a chair lift for those stairs, but mentally this doesn’t remove the fears that our bodies are weakening to the effects of the cancer.
I know bowel cancer, stomach cancer and various others do bring pain, but many are towards the very end. With mesothelioma we seem to suffer from start to finish. I guess that is what makes this the worst cancer in the world to have. Unless some high-powered minister or government official ever had to suffer or watch their family member go through this, they will never see or understand the complexity of what this disease does.
I hate the fact I can see the changes taking place, I can see the pain it brings in my husband’s face, each time I have to ask him to help me. I am losing another piece of my own independence, and I face the fact that I am getting worse.
We are all holding out for that one drug that will help, but since the development of pemetrexed, which works on only 40% of mesothelioma, nothing better has come on the market. That drug was found by accident, maybe the next one is around the corner. But unless a significant amount of people get a benefit from a new drug the trials are scrapped. What happens to the 60% it doesn’t work for?
As I now battle with the spread of my cancer to the abdomen as well as both lungs and back on my pericardium, I fear the worst. I have to believe the chemotherapy I am trying now will take me back to the health I so enjoyed in May and prior. Never again would I complain about that little bit of being out of puff, I would rather that than be in a wheelchair. Never before have I felt like an invalid, but now I need to review my life and begin a new way of normal.
To those facing this same decline we must stay focused on the fact we are still here and still able to share in the life and enjoyment of our loved ones, for it is them we keep pushing ourselves on for. I must put away my own worries about my decline so that my husband can feel he isn’t helpless anymore but helping me live as full a life as normal.