Closing the book

It was as they say , a beautiful day for a funeral. A bright, clear Autumn day,a day when if he had been well would have been the chance to take out a ducatti, before the leaves and salt were on the roads.

Instead we were going to his funeral.

Family and friends did him proud and the service was beautiful and we followed his wishes to the letter. Even having “bright eyes” as thevsong of farewell at the end, to celebrate his love of walking around waterhip down which is close by. It will be quite some time before I can see a rabbit without crying.

Mesothelioma has been a central element of my life for 6 years. Even on good days it was a cloud on the horizon. It is now time to grieve and for me it is best to do that away from reminders of the disease. So many lovely people who shared their thoughts have been lost, Jan, Debbie and Steve to name just a few. My best wishes will continue for Mavis to lead the fight and for those new families coming to terms with the diagnosis .

I thought as closure to this blog I would share my final words at the funeral in memory of the man so many people loved.

” Ray was the bravest man I have ever met.
He was also one of the kindest , and definitely one of the tidiest. If you needed someone to be able to point out a painting or cushion that wasn’t square from a hundred paces, Ray was your man.
He used to tell me that it was one of the great mysteries of his life how he had managed to end up with someone as consistently messy as me.

It will come as no surprise to any of you who knew Ray well, that I have been left with copious and extremely detailed instructions about every aspect of his funeral. All of you here today are helping those wishes come true.

He loved so much about life, he loved sailing, He loved music, especially the violin. He loved dancing. He definitely loved fast cars and ducatti motorbikes, although none of them ever saw a drop of rain He loved exploring the Hampshire countryside and became an avid walker, latterly he loved his garden, with of course perfectly regulated stripes on the lawn.

Ray loved so much about life, but most of all he loved his family. He was so proud of everything his daughter and his son had achieved.

Just over 6 years ago he was diagnosed with the terminal cancer mesothelioma. He was initially given 6 months to live and his first thoughts were how to protect the people he loved. It was enough for me and his mum and dad to know. He didn’t want anyone else to have to live through the pain of the disease. He wanted his family to to be able to enjoy their lives without the cloud of his illness constantly on the horizon.

Ray taught me the meaning of courage, of what it is to fight even though you know the battle is lost. What it is to love life, to have fun and to laugh, what it means to do the small things well, to enjoy a good glass of wine or a nice meal. People often wonder what they would do given 6 months to live, you hear of bucket list and trips around the world. Ray told me he didn’t need to travel round the world, everything he loved was here, at home.

No one here will be surprised to learn that he didn’t want sympathy, that he wanted people to see the man not the illness. His family gave him that the gift of normality and will never know just how much that meant to him.

6 months became 6 years because Ray never knew when he was beaten and because of the amazing support of doctors and nurses within the NHS. Not only did he live far longer than expected but he also lived well. Despite undergoing surgery and chemotherapy, he never let the disease hold him back or stop him doing what he loved. Just one year ago he was still racing his ducatti around Silverstone.

in early February this year, his health suddenly started to deteriorate. Being Ray of course he still set himself targets but even for him they proved to be targets too far. Until the very end of his life he looked out for the people he loved and wanted to spare them pain.

I would like to leave you all with some lines from a poem by Dylan Thomas that will always remind me of Ray.

Do not go gentle into that good night,

Old age should burn and rage at close of day; 

Rage, rage against the dying of the light

Ray wasn’t an old man, but he never went anywhere gentle and he raged for a long, long time against the dying of the light because he didn’t want to leave the life or the people he loved.
Ray was the bravest man I have ever met and I am very proud to have been his wife.”

The next stages of officialdom

Firstly many, many thanks for all the kind comments. I know this is cyber world but the condolences are just as valued, even more in some ways, because they are from people who sadly also know too much about this terrible disease. You will all know how hard Ray fought all the way, he was certainly my inspiration and I am still leaning on him for courage during this time.

As many will know death from mesothelioma doesn’t follow the usual certification process, although his death was expected and we were in regular touch with his GP, it isn’ t quite as straightforward as getting the certificate from the doctor, with green forms for the undertaker etc.

The doctor has to immediately notify the coroner who then makes a decison about whether a post mortem is needed and opens an inquest. The usual 5 days for registering a death doesn’t apply apparently and there may be interim death certificates involved as well.

Where there may be legal cases pending or the asbestos exposure hasnt been identified I can understanding their reasoning. However, all of this had been settled with us some time ago. Ray really didnt want there to be post mortem, he felt his body had been through enough. Ray being his usual organised self therefore asked the hospice to contact the coroner a couple of weeks ago so that the biopsies confirming the diagnosis were readily available from our GP.

This meant that when they got the notification from the GP on Monday with all of the necessary medical info they already knew about Ray and confirmed immediately that they didn’t need to request a PM. They then contacted me to see if I had any preferences about an inquest , and I agreed I would prefer it to be opened and closed immediately (not sure of the terminology of this bit) They asked for records of his full working history, which I had as part of the previous case so emailed them across yesterday and today they confirmed the inquest had been opened and immediately closed. They supplied the information directly to the undertaker.

I know this wont be of help to many who dont have a chance to find out much about the exposure history before death because this horrible disease strikes so quickly, but I thought it might be of help to some to know.

Do not go gently

6 years and 2 weeks after an initial 6 month prognosis, Ray died at home earlier today. Not surprisingly he fought to the end to stay, not only was he brave but he loved life and wasn’t ready to leave. There was still so much he wanted to do.

He loved his garden, his clematis was still blooming under my supervised care, he loved his cars and his motorbikes, his music, dancing, his family, his children and his grandchildren . He loved me even though I was a bit messy.

Over the last two weeks, he wanted to make sure I had copious instructions of what to do and how to live without him.

I don’t have the words so in my memory of the bravest man I have met , i thought Dylan Thomas summed it up better.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

6 years on

It is now almost exactly 6 years since the original diagnosis, pretty good considering the 6 month prognosis. We would have gladly accepted an offer of 6 years at the time, now of course , we have become greedy and 6 years seems like far too short a time. A lot of the time has of course been taken up with treatments and hospitals, where we have met many amazing people. Plus of course I will be able to write my trip adviser guide to all aspects of hospitals in London and the south of England.

We have estimated we gained four and a half good years, the last 6 months have been a bit tricky but there have still been many good days, when we have enjoyed time out in the garden and with family.

Heading now into autumn, we don’t think we will be making our annual trip to watership down and our celebratory drink this year. Walking is getting much tougher and time in bed seems to be the best option at the moment. The cordotomy worked really well, in some ways would have been good to know about it years ago, definitely something I would urge others to explore to improve quality of life.

Unfortunately the ascites is causing a lot of pressure on the stomach, which is very uncomfortable. We decided against a drain as being too invasive at this time, staying out of the hospital is more important now. Varying new combinations of drugs are therefore coming into their own, with levopromazine being useful for anxiety, sleep problems and nausea. We dabbled with the morpheine for breathlessness but as usual it comes at a price so that one has been regulated to the back of the cupboard again.

Plus of course we have our old faithful paracetemol taken regularly throughout the day. I think I now have enough combinations of drugs at hand to set up my own , rather exclusive, pharmacy.

On the food and drink front, peppermint tea is the new drink du jour.

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Phase 3 mesothelioma trial due in the US in 2017

By this time next year, a pivotal Phase 3 trial will be underway on what looks to be one of the most promising new therapies for malignant pleural mesothelioma.

The makers of galinpepimut-S, an immunotherapy vaccine with Orphan Drug status for acute myeloid leukemia and pleural mesothelioma, recently announced their intention to begin the Phase 3 mesothelioma trial in mid-2017.

The news was punctuated by the FDA’s decision to “fast track” development and review of galinpepimut-S for mesothelioma. It had already been granted Fast Track status for acute myeloid leukemia. Galinpepimut-S is an immunotherapy drug developed by scientists at Memorial Sloan Kettering Cancer Center and licensed to a biopharmaceutical company called SELLAS Life Sciences.

It is being developed specifically to target blood cancers and solid tumors including malignant pleural mesothelioma, acute myeloid leukemia, multiple myeloma, ovarian and other cancers.

According to a Phase 2 study that included 40 malignant pleural mesothelioma patients at Memorial Sloan Kettering Cancer Center and MD Anderson Cancer Center, patients on galinpepimut-S lived for a median of more than 2 years while those in the control group had a median survival of just 16.6 months. Patients who had had mesothelioma surgery followed by treatment with galinpepimut-S showed the greatest survival benefit.

Like other immunotherapy drugs for mesothelioma, galinpepimut-S works by activating the patient’s own immune system to help fight their cancer. Galinpepimut-S specifically targets WT-1 or the Wilms Tumor protein found on the surface of mesothelioma cells.

Pleural mesothelioma cells, like other cancer cells, have ways of “hiding” from the immune system, allowing them to grow and spread unchecked.

Immunotherapy drugs like galinpepimut-S help make cancer cells visible again and stimulate the activation of cancer-fighting immune system T-cells including CD8+ and CD4+.

A Phase 3 drug trial is a clinical study intended to provide the evidence needed for the FDA to issue its final stamp of approval to market the drug. Galinpepmut-S already has the FDA’s Orphan Drug designation, a designation aimed an encouraging the development of drugs for rare medical conditions like malignant mesothelioma.

Source:

“SELLAS Life Sciences Receives FDA Fast Track Designation of Glainpepimut-S for the Treatment of Malignant Pleural Mesothelioma”, September 19, 2016, News Release, SELLAS website

Ascites

Codotomy complete, we now face the next issue of ascites.

Ascites (pronounced ay-site-eez) is the medical name for a build up of fluid in the abdomen. The abdomen is the area of the body below the ribs and lungs and above the hip bones. It contains many of the body’s organs, including the stomach, small and large bowel, pancreas, liver, spleen, and kidneys.

There are a number of possible causes of fluid in the abdomen (ascites). It may develop when

Cancer cells irritate the lining of the abdomen and make it produce too much fluid
The lymph glands in the abdomen become blocked so that they can’t drain fluid out of the abdomen as they usually do
Areas of cancer in the liver raise the pressure in nearby blood vessels, forcing fluid out of the blood vessels and into the abdominal cavity
The liver is not working normally – it can’t make blood proteins as it should, causing fluid to leak out of the veins and into the abdominal cavity
The heart is not working normally
A number of conditions can cause fluid in the abdomen, including liver disease, heart disease and cancer.

The main symptom of fluid in the abdomen is swelling. This often develops over a few weeks but may happen over a few days. Symptoms include

Bloating
Feeling uncomfortable
Abdominal pain
Back pain
Difficulty sitting comfortably and moving about
Feeling sick
Loss of appetite
Indigestion
Constipation
Needing to pass urine often
Shortness of breath
Tiredness (fatigue)

Basically he has all the symptoms, the level of swelling is such that it is causing extreme discomfort and severe shortness of breath because the diaphragm can’t expand at all. Tomorrow we visit the hospice to see if the fluid can be drained urgently to relieve symptoms.

Overall he is now so frail that any procedures are incredibly taxing but the discomfort from this has become so extreme that hopefully something can be done quickly

Cordotomy day

Today saw the cordotomy to help deal with the pain on the right hand side. This has involved a very long day at Portsmouth hospital. I think there are only about 4 places in the UK that offer it, so Portsmouth isn’t too far away.

Down there for noon and then a wait while we waited for his slot in the day surgery unit. The operation itself takes about 60- 90 mins maximum. Luckily he was able to lie flat and fingers crossed it has gone well. You are awake during the operation so they can talk to you while they locate the pain nerves they need to cut. About 10% of the time they cant find them. Also about 10% of the time, it only lasts a couple of weeks, as the cut hasnt happened and instead the benfit has been caused by swelling of the nerve , which is only temporary.

We do know it has had an impact as he mentioned there was an almost instantaneous reduction in the pain during the procedure, now fingers crossed it is the real thing. There is an overnight stay while they check everything has gone OK with no issues, before discharge tomorrow.

It has been such a long day because I didnt want to leave until he was settled. This has taken a bit longer mainly because the nurses on the ward were concerned about his blood pressure, heart rate and oxygen levels. The reason is of course that they are measuring everything compared to Mr Normal not Mr One Lung, mesothelioma sufferer. So us saying no that’s fine for oxygen levels etc didn’t really have much impact. We therefore had specialist nurse and the anaethetist called to check there weren’t after effects from the surgery. Both of whom were great and very much on the need for no intervention at the moment, but will keep an eye overnight.

Portsmouth hospital has so far been really impressive, it has an air of calm efficiency that is quite rare, and everyone we met has been that fantastic combination of very professional but also human, and genuinely caring. Plus you can see the sea from the bed!

He does though appear to have ascites, fluid in the abdomen, which is causing a lot of discomfort, so as one area hopefully improves, we can now deal with another. Scan results are due to be discussed on Wednesday for the next plan of action.