A Diary Of A Mesowarrior Living With #Mesothelioma. #Asbestos -Scan day and the mind is working overtime

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Yes it was the day I had to go on the M2, M26. M25 to the Royal Marsden for my 2 month Scan. The weeks go so quickly and seem to get shorter and shorter.

I thought I would be able to put it all to the back of my mind.

My damaged lung would get better. It’s not the case.

I have this worry that it will come back as the Cancer gets clever and finds a way to come back and haunt, me.

I have buried myself in work, In asbestos safety in schools and buildings, worry about rules that are broken etc etc. But my own worries come back and my mind works overtime as the scan looms nearer and nearer.

I miss my friends that have passed, that I can’t talk to anymore. I have many new ones and I love them all but living with the outcome of all this mesothelioma is very hard.

Can you imagine having to live with friend,s being killed in a car accident week after week, its crucifying. Mesothelioma is a car crash. Asbestos is a killer.

This is where my survivor’s guilt comes in. It is a real thing very hard to bear.

We are coming to christmas and that is a time when we lose more, whether that’s because we have so much flu around I don’t know, but after 6 years I have noticed this fact.

Fogive my ramblings but as I have had to point out this week this is my blog, so I can out pour my feelings and thoughts.

I do bury myself in my work and thanks to my Medical team I’m still here to be able to. My neighbour said in tesco’s when I met him tonight, you’re so lucky.

Is it luck? is it fate, or is it that someone has mapped my life out. I would love to know.

Heather Von St James in the US said she dint think cancer sufferers shouldnt be called brave or fighters. I disagreed but really thinking about it maybe that’s a front I put up and inside  I’m really a frightened old lady. I will shout out and look so brave, but it’s not really whats going on.

So I have had another scan and had to come away only to go back Wednesday for the result.  scanxiety sets in and I have found this advice, Isnt it great that it is acknowledged as real Mesowarriors.

1. Distraction

Binge watch episodes of your favorite TV show. Dig into a great book and get lost in the story. Go somewhere fun that you have never been before. Treat yourself to something that will keep your mind busy thinking about anything but those scan results.

2. Loud Music

Crank up the radio! Blast 80s music! Belt show tunes! It’s hard think about scans while reenacting scenes from Flashdance, and I challenge you to feel anxious while singing “Don’t Stop Believin’.” Trust me, this is some magical stress relief. The science behind it probably has something to do with endorphins, but I am too busy right now rockin’ out to “Pour Some Sugar on Me” to care.

3. Acknowledge It

When scan time is coming near, I feel like I need to wear a sign around my neck warning people that I am not responsible for the words that come out of my mouth. I get short with people and am likely to snap at them for no particular reason. Acknowledging what I am feeling and why can help to make it more manageable for myself and those around me.

4. Make Plans for the Worst Case Scenario

While I always hope to get great news, I find that sometimes I can lessen the panic by knowing what the plan will be if the scans are bad. Cancer makes you feel powerless and at the mercy of the disease. Having a plan in place can give back some of that lost feeling of control.

5. Spend Time with a Child

I’ve written before about the incredible ability that small children have to live in the moment. For them, all that matters is what’s happening right now: this game of Go Fish, these orange slices, this third reading of The Very Hungry Caterpillar. Spend the afternoon with a little one and the worries will drift away for a few hours.

6. Pretend You Already Got Good Results

This is totally delusional, but sometimes I can trick myself into imagining that – hey, I already got the results, and they were great! Sure, it only lasts for a few seconds, but those few seconds are a lovely relief from the anxiety.

7. Know When and How You Will Get Your Results

My oncologist only gives the results in person, so I know I will not hear anything until our appointment on Tuesday. For me, knowing this is a relief (although waiting the weekend is a bit of a challenge!), so I don’t sit by the phone all weekend wondering if I am going to get a call. Discuss with your doctor how you will find out the results so that you don’t have the extra layer of anxiety, wondering when you will hear.

8. Help Someone Else Out

Sometimes, the best way to relieve your own stress is to help out someone else who is struggling. Help a neighbor, talk to a friend in need, shift the focus off of yourself for a while. It can be refreshing to worry about someone else for a change.

9. Meditate

There are many different strategies for calming the mind, such as deep breathing, praying, positive visualization and physical relaxation strategies. And if those don’t work….

10. Medicate

Let’s be frank, depression and anxiety are cancer’s annoying younger siblings who tag along and show up at the most inconvenient times. There is no shame in discussing these issues with your doctor and considering taking medication to help.

So, what about you? What are your best strategies for dealing with the dreaded scanxiety?

Tori Tomalia is many things: a mom, a wife, a theatre artist, a mediocre cook, a Buffy fan, a stinky cheese aficionado. She is also, unfortunately, a repeat visitor to Cancerland. Stay tuned for her continued adventures.

     Facebook: https://www.facebook.com/lungcancerblogger

     Twitter: twitter.com/lil_lytnin

     Blog: “A Lil Lytnin’ Strikes Lung Cancer” http://lil-lytnin.blogspot.com/ 

Hope that can help others in the same boat I feel better knowing some is feeling the same.

So Back in London tomorrow that will take my mind off of things.

I’m off to rev my broom stick up I have to fly across the moon tonight ha ha !!!

halloween

Happy Halloween enjoy trick or treat xx

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos Disease -Thanking the Lords and Support Groups that are fighting our corner

Forgive me if we celebrated the wonderful Debate in the House of Lords, by talking about the Mesowarriors Uk, but it was all about them in the House of Lords on Thursday .

We had this Debate– and remember this is my diary and my thoughts,  so you might not always agree with me.

We do aknowledge Mesothelioma Warriors World Wide, believe me and we do fight alongside some wonderful people, but what is happening in the UK is so important,  as in the end we might find the cure for the disease and our government is backing us.

So many are working together around the world to that wonderful goal.

We do thank the wonderful people who are working tirelessly behind the scenes to make sure we do have the 5 million that the Government have promised for Mesothelioma Research and the Centre of Excellence.

The National Mesothelioma Centre will be a collaboration between four leading institutions who have a major interest in the treatment of mesothelioma: National Heart and Lung Institute (NHLI) at Imperial College; Royal Brompton Hospital; Institute of Cancer Research (ICR); and Royal Marsden Hospital. This collaboration will form the hub of the Centre which will engage with all other hospitals in the UK to which mesothelioma cases are referred and treated.

Professor Sir Anthony Newton Taylor, Head of Research & Development at the National Heart & Lung Institute, who made the application for support from LIBOR fines, is working closely with the British Lung Foundation and other charities in order to ensure that experts from across the lung and cancer research community are able to contribute to this important enterprise.

The £5 million grant, which is intended as seed funding, has been profiled over 4 years and will be paid to the National Mesothelioma Centre, once established. The funding will be subjected to standard Grant Terms and Conditions, including a feedback and reporting mechanism, and audit.

That was why the Debate has been talked about this week https://hansard.parliament.uk/Lords/2016-10-27/debates/288D2079-5DD8-44C8-BD07-47F89105D0ED/Mesothelioma

We must make sure it happens and that Mesothelioma does have the money.

Lord Wills, Lord Alton and the others that spoke that night are really behind us as are so many other. IBAS, British Lung Foundation, Mesothelioma UK Asbestos Victims Support Group Forum and many more have really worked hard for Mesowarriors in the UK.

It does feel at last that we have a huge voice and people do listen.

So many people have died with Mesothelioma and the cause has been greed though not banning Asbestos sooner.so it is only right they do look after the victims now and make sure the drugs are found for the treatment we need so badly. We have lost 4 this month in the UK and each death was preventable but worse still I have added, through emails to me and through my blog, and through Patients being recommended to our Face Book Groups, and Twitter over 20 newly diagnosed patients in October.

I don’t like keeping numbers as it reminds us just how bad this disease is.

All the Lords spoke wonderfully about our plight but (please read from the link or see my Blog for 2 days ago ) Baroness Walmsley said it all.

 

  • Asbestos lurks in many strange places, including, as we have heard from the noble Lord, Lord Alton, this very building. My husband and I recently demolished an old cottage on our property, and we discovered that there was asbestos in the floor tiles with which my late mother-in-law had been living for 40 years. We had to have them removed by specialists. In the 1970s, when I lived in an old farmhouse, I used an asbestos product to fill the rather irregular holes that I used to drill in the walls to hang pictures and bookshelves, having no idea that there may be a problem with it. Concerns about the dangers of asbestos were first raised early in the 20th century, but its use was not outlawed until 1999. For the thousands of cases now arising 40 or 50 years after first exposure, it is our responsibility to ensure that they are given the compensation and support they require. Unfortunately, the median survival time for pleural mesothelioma, once it has taken hold, is 12 months from diagnosis, but this time, and beyond for the dependents of those affected, must be made as comfortable as possible for those who need help.

    Over the years, there have been many shortcomings in the handling of asbestos-related cases across the globe, one such case being the fire at the central ordnance depot in Donnington, Shropshire, in 1983. The blaze which released a huge cloud of asbestos into the air has had a huge repercussion which is still being felt today. Paula Ann Nunn, Ellen Paddock, Susan Maughan, Richard George and Marion Groves are just five local people who contracted mesothelioma and unfortunately passed away as a direct result. Mrs Maughan died only last October. Her daughter told the inquest that it took the local authority five days before they told the community so they were exposed to asbestos for all that time. The ash cloud which spread over an area of 15 square miles attracted many small children who played in it as if it were snow which fell in local gardens for days before people were told it was unsafe. We have heard from the noble Baroness, Lady Finlay, how very harmful that could be to those children. My colleague and noble friend Lady Pinnock has told me about many cases in her area of Kirklees, resulting from working for a brake linings factory, long since closed down.

    Mesothelioma is generally resistant to conventional cancer treatment. Long-term survival and cures are extremely difficult, but that does not mean that the mistakes of government and industry alike over the past century should not be paid for by compensation to those affected. The current range of available benefits, both lump sums and long-term allowances, must get to the right people at the right time. The Mesothelioma Act 2014, for which we have to congratulate several noble Lords present today, went a long way to help those who had been unable to access compensation because of the passage of time or a lack of effective record-keeping identifying those responsible. Since 2014, a total of £62.2 million has been awarded. However, of those who were unhappy with the result and requested a review of what they were awarded, 25% had their compensation rate altered—I presume upwards. Given that this illness is still an issue affecting thousands of British people every year and that the nature of mesothelioma’s progress means that time is literally of the essence, it is essential that the correct support is awarded without delay in all cases. Given the significant number of cases reviewed since the launch of the scheme, how do the Government intend to learn from those cases and improve the process so that the right decision is made the first time in as many cases as possible?

    Can the Minister also outline the ways in which the Government are promoting the compensation scheme, so that those most in need are fully aware of the support available? Given the vital work done by the charitable organisation, Mesothelioma UK, and its invaluable lung nurse specialists, do the Government intend to follow its lead and introduce more specialist nurses into hospitals to support patients?

    Finally, to safeguard against mesothelioma cases slipping under radar given the disease’s lengthy latency, are the Government willing to begin actively seeking out those involved in previous incidents, such as the Donnington fire, so as to promote early identification of their disease and to get immediate support to them?

    I will report back when I have been to the House of Lords on 1st November.

    In the mean time I have a scan coming up Monday and the results on Wednesday hence my not being able to sleep. We do worry about our scans as it means maybe another free 2 months to enjoy life or going back into treatment. All we pray for and our fingers are crossed for is a stable scan. Mr Nasty must stay laying down in his benign state. PLEASE !!!!

 

 

A Diary of A #Mesowarrior Living With Mesothelioma the #Asbestos Disease. How did the Mesowarriors UK Come About?

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.deb

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.

http://www.canceractive.com/cancer-active-page-link.aspx?n=2436

Jan Eagerton she only started blogging 2013 but was diagnosed before that. peritoneal can be a longer journey like Jans

jan

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.

https://www.mesotheliomahelp.org/community/mesothelioma-warrior-discusses-declining-health/

 

A Dairy Of A Mesowarrior Living With #Mesothelioma #Asbestos Disease -The Mesothelioma Debate In The House Of Lords Last Night

parliament

I watched this great debate in the House Of Lords last night and would like to say Thank you to Lord Wills and other members that took part. You talk with such passion and sympathy for Mesowarriors and we are so pleased we have wonderful people like you fighting our corner. A huge thankyou to all that fight our case.

A Diary Of A Mesowarrior Living With #Mesothelioma through #Asbestos -A Week Of Meeting’s.

london

We have had a very busy week with 2 days in London for meetings.

Monday saw us meeting up with Liz Darlinson and her team and Laurie of IBAS and others. I hadn’t realized that I was there for my connections to Mesothelioma Warriors it is wonderful to see our work on Face Book is being seen as a Support Group and my Website http://onestopmesothelioma.co.uk/index.html Is really being used. I wish I saw my worth and how people are listening to me. I will grow on this and we will update our website more often.

It was a great meeting and I hope there will be more of them as we need to come together and work together in the UK and maybe we will get things together and passed.

I did meet a great mesowarrior who is working so hard since her Father died of Mesothelioma. She has a strong voice.

jo

http://www.mesothelioma.uk.com/information-and-support/patient-family-experiences-of-mesothelioma/julie-roberts/

Making a difference by raising awareness of Meso in Scotland

Recently, Julie Roberts got in touch with Mesothelioma UK to tell us about her campaign to raise awareness of mesothelioma in Scotland.

Julie is so passionate about this because her life was changed forever when her dad, Gordon, was diagnosed with mesothelioma in 2014. Just eight short months later, Julie’s dad passed away. Julie also cruelly lost her uncle to the same disease just six weeks earlier. 

Like so many people whose lives are affected by this disease, Julie and her family had never heard of mesothelioma before her dad was diagnosed. This lack of awareness has prompted Julie to call on the Scottish government to review its cancer strategy (which has no mention of the disease) to inform more people about it with the hope that it can be diagnosed much earlier.

Gordon had worked as a joiner during the 1970s and 80s when asbestos was a commonplace building material. We now know that exposure to asbestos is linked to mesothelioma and we expect the number of cases to rise as the disease makes itself apparent in men and women who worked with asbestos earlier in their lives.

Julie said: “As a family we’d never heard of it before – nobody seems to have. But thousands are diagnosed every year and that number will rise dramatically. The problem is that there are no symptoms before it’s too late to do much about it. If people were more aware of the disease – especially those who worked with asbestos – then they could look for symptoms much earlier.” 

Helping Julie raise awareness of symptoms, among men in particular, is Hibernian Football Club. Her dad was a lifelong fan of the team and he would take Julie to a match every week.

The football club has been a huge support to Julie and made a film telling Julie’s story which it shared through its GameChanger campaign – a partnership between the club and NHS Lothian which aims to deliver better health to the club’s supporters.

Following the success of Julie’s film on the GameChanger campaign, she was contacted by the Leader of the Scottish Labour Party, Kezia Dugdale, who offered her support.   

With the support of the party leader, Julie has challenged the Scottish Health Minister on the following points:

Does the Scottish Government currently carry out any type of specific Mesothelioma early deduction work within the ‘Get Checked’ or any other of their public awareness campaigns?

Are there any plans to specifically target demographics that are more susceptible to being diagnosed with Mesothelioma?

Does the Scottish Government have any plans to remove all asbestos from public buildings?

Julie said: “I do think the government could start raising awareness – letting people over 50 perhaps know that if they worked in certain trades they could be at risk and to keep an eye on their health.”

Kezia Dugdale, commented: “I have written to the Health Secretary Shona Robison to find out what exactly the Scottish Government is currently doing on this issue.

“We know from research that the poorest people in Scotland are 68 per cent more likely to die from cancer than our country’s richest. We cannot live in a country where there is a direct correlation between the likelihood of someone getting, and then surviving, cancer and how much money they have.

“The Scottish government must do more and be willing to try new things to make these changes happen. I’m willing to work alongside the Health Secretary and cancer charities so we can make sure we fight diseases like mesothelioma and ensure that cancer does not become a deprivation disease in Scotland.”

The worker health and safety charity, Scottish Hazards, was also made aware of Julie’s story through the GameChanger campaign and signed up as a result and will be able to help raise awareness of mesothelioma.

Julie is making fantastic progress with her campaign and has met with the Scottish Parliament and is attending the Cancer Cross Parliamentary Committee in September to tell her story.

Julie believes early diagnosis could make a huge difference. “Those months from diagnosis were precious to us all. My dad had some time to think about us all – wrote letters for us to open afterwards. But we do feel robbed of the times we now won’t have with him. I just wish he’d been diagnosed earlier.”

You can see Julie’s story in a video she made with Hibernian FC at www.hibernianfc.co.uk/news/6488 

st-pancras-front

We Came home by train I love St Pancrus such an old building but so very Victorian. Inside is a modern station with our HIgh Speed trains. Home in an Hour is just wonderful.

Then The next day we were up and back to Victoria and Underground to Richmond to a meeting.

richmond-green

It is a wonderful setting and I just asked a couple were we heading the right way and they walked with us until we got there. We do find on these trip as to London the kindness of people all the time. I said to Ray so many times do I really look that old and frail that I need helping.

We had another great meeting and so many things to think about over the next few months. I can’t believe that disease has led me to such a wonderful interesting life where people want us to help out with Mesothelioma and Asbestos.

2017 is going to be more exciting  than 2016 and that has been more than I ever dreamed could be.

I just go with the flow I keep saying my life is mapped out and each week proves that. I will keep going for as long as I can.

Once again it was a good journey home but at the wrong time. I have never seen Victoria so busy. A huge line upon line of men in suits and dragging cases on wheels behind them everyone looking at the phone in their hands. They just do not see you and so we have to walk around them. Really there is a comedy film to make here I do find it so very funny. On the train you can here every conversation and so you know all their business for that few minutes. Crazy.

phones

Im waiting now for Lord Wills (I will be meeting him on the 1st November at the House of Lords) He is passionate about helping  Mesothelioma and he is talking in the House of Lords at 5pm for an hour. I will report in tomorrows blog what he has to debate about.

If you click on the full event guide (http://parliamentlive.tv/Guide) to access previous debates in case you are unable to watch the debate live.

 

A Diary Of A Meosowarrior Living With #Mesothelioma-~My Cancer Action Group collected £150’s for Breast Cancer in a two hour meeting -well done! and Mary Seacole ITV Program was great, #Asbestos found in flasks from China the fight is ongoing

breast-cancer-care-004

Across our latest round of Cancer Action Groups the sale of Sam’s delicious cakes has raised over £150 for Macmillan and Breast Cancer Care. They have brightened up our meetings (and found the inner sales person within that some of us never knew we had!) I have received today these photos of the Breast Cancer fun we had at our meeting.

We then had to settle down and carried on with the meeting which I have already blogged on monday.

Also on Monday there was a great program on ITV explaining about Mary Seacole. A fascinating Lady as she didn’t have training as a nurse and went onto the battlefield with a satchel of herbal and medicines that she made.

She often rode out to the front line with ‘baskets of medicines of her own preparation’ to treat the sick and wounded of both sides on the battlefields. She acted as a surgeon as well as administering natural remedies. She became well-known to the soldiers, who called her ‘Mother Seacole’ and even ‘dear Mamma’

David Harewood (star of Homeland and The Night Manager) embarks on a very personal, three-year journey across Britain, Jamaica and Crimea following the creation of a major new statue of a woman who has always been a heroine of his, Mary Seacole – first statue of a historical figure who was a woman of colour to be erected in Britain

trev

I sneaked this photo off Trevor Stirling face book where he said Huge thanks 🙏🏾 to David Harewood for presenting the Mary Seacole ITV documentary “In the shadow of Mary”

I loved watching how it took months to make the mold as a wire frame is used and clay covers it all and that took ages. I’m sur I would have given up.

But I love the Statue and all she represents. If you remember ray and I had our own personal tour of the site at St Thomas’s Hospital.

http://www.maryseacoleappeal.org.uk/about-mary-seacole     

ms3

more-flsks

As everyone awake today they saw my blog about the Flasks that were made in China and the terrible fact that some contain Asbestos. It does shock as what else will they find it in. I have contacted the Customs and Excise to ask them what their policy is on making sure this wont happen again, but as Rod Smith of Bernie Banton says in Australia,

THe problem is Mavis, like in Australia, the only way to find it is to do destructive testing. We have containers of building materials identical in every visual way, but some has asbestos in it, others don’t. And I am talking about in the same packs and same containers.
They are supposed to have targeted random testing. In other words they have a list of items that have the potential to contain asbestos that they are supposed to test. But they have millions of shipping containers coming in from China.
I honestly think the only way is to ban Chinese imports of any product that may contain asbestos!
Well yes so do I lets say No Imports from China until they can prove the are Asbestos free and they have stopped mining.
You just know this will never happen don’t you !!! so we have to be more vigilant. Will be ever see a world free of Asbestos ??? The answer sadly is NO!!!

Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos disease.#Asbestos found in a flask imported from China

Please share around as here in the UK we have an import from China. Just how much is getting through in imported items is a worry after in has been found in CRayons and cement in Australia. We have to keep vigalant.

flask

Risk: Chemical, ASBESTOS

The flask contains asbestos fibres. If the thermos breaks, the user may inhale asbestos fibres, which are carcinogenic. The product does not comply with the REACH Regulation.

Measures taken by economic operators: Recall of the product from end users (By: Importer)

Description: 1.3 litre stainless steel vacuum flask. No packaging

Country of origin: China

Alert submitted by: United Kingdom

Risk Type: Serious

If you find that you are in possession of a recalled product, the notification should give you details of what to do next.  If no details are shown, you should contact either the seller or Citizens Advice.

If you purchased the item from a UK seller and need further advice, Citizens Advice can help.  If you bought your product from a company based inside the EU, European law will protect you.  Contact the UK European Consumer Centre for more details.  If you bought your product from a company outside the EU it is unlikely that UK or EU law can assist you.

If you are concerned about the safety of a product that does not appear on the recall list, we recommend you stop using it and make your concern known to the retailer, manufacturer or, if not known, your local Trading Standards office.

Further advice:

UK European Consumer Centre:  www.ukecc.net

Citizens Advice: www.adviceguide.org.uk

http://recalldatabase.blogspot.co.uk/2016/10/thermate-thermos-flask-recalled-as-they.html?m=1

now more flasks

more-flsks

 


Thermate Thermos Flask Recalled as they contain  ASBESTOS fibres (which are Carcinogenic)



Category: Kitchen/cooking accessories

Product: Thermos flask

Brand: Thermate

Name: Vacuum Flask with 2 cups

Type/number of model: 0-57625

Batch number/Barcode: 5050577576250

Risk: Chemical, ASBESTOS

The flask contains asbestos fibres. If the thermos breaks, the user may inhale asbestos fibres, which are carcinogenic. The product does not comply with the REACH Regulation.

Measures taken by economic operators: Recall of the product from end users (By: Importer)

Description: 1.8 litre thermos flask with 2 cups. Polypropylene outer and vacuum glass inner. Available in various colours – purple, yellow, blue, pink. No packaging.

Country of origin: China

Alert submitted by: United Kingdom

Risk Type: Serious
If you find that you are in possession of a recalled product, the notification should give you details of what to do next.  If no details are shown, you should contact either the seller or Citizens Advice.

If you purchased the item from a UK seller and need further advice, Citizens Advice can help.  If you bought your product from a company based inside the EU, European law will protect you.  Contact the UK European Consumer Centre for more details.  If you bought your product from a company outside the EU it is unlikely that UK or EU law can assist you.

If you are concerned about the safety of a product that does not appear on the recall list, we recommend you stop using it and make your concern known to the retailer, manufacturer or, if not known, your local Trading Standards office.

Further advice:

UK European Consumer Centre:  www.ukecc.net

And more

 

Pendo 1L Vacuum Flask various colours, Withdrawl Notice – Flask contains ASBESTOS fibres



Category: Kitchen/cooking accessories

Product: Vacuum flask

Brand: Pendo

Name: 1L Vacuum jug flask

Description: Plastic vacuum jug flask with a handle and push button pourage, 1-litre capacity. Comes in various
colours, no packaging.

Type/number of model: O-58836

Batch number/Barcode: Bar code: 5050577588369

Risk: Chemical, ASBESTOS

The separators of the double glass wall of the flask contain asbestos fibres. If the flask breaks, the user may inhale asbestos fibres, which are carcinogenic. The product does not comply with the REACH Regulation.

Measures ordered by public authorities: Temporary ban on the supply, offer to supply and display of the product

Our advice to consumers 

If you find that you are in possession of a recalled product, the notification should give you details of what to do next.  If no details are shown, you should contact either the seller or Citizens Advice.

If you purchased the item from a UK seller and need further advice, Citizens Advice can help.  If you bought your product from a company based inside the EU, European law will protect you.  Contact the UK European Consumer Centre for more details.  If you bought your product from a company outside the EU it is unlikely that UK or EU law can assist you.

If you are concerned about the safety of a product that does not appear on the recall list, we recommend you stop using it and make your concern known to the retailer, manufacturer or, if not known, your local Trading Standards office.

Further advice:

UK European Consumer Centre:  www.ukecc.net

Citizens Advice: http://www.adviceguide.org.uk