Paul – Love & Loss (part 1)


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Thus far I haven’t been able to blog specifically about Paul and our relationship, but today, 10 years on from the eve of his death, it seems a fitting occasion, so I’m giving it my best shot, though much abbreviated.

If you missed how we met you can find the story here:

I had two marriages behind me and he was into his second of what I thought initially was a happy marriage. I was enjoying my newfound freedom as I had been more or less tied to husband number one since I was a mere child of 14 and soon after our divorce I married husband number two, so I certainly wasn’t looking for a new relationship.

Following two encounters with cancer and radical surgery I embarked on a degree course which I found quite challenging – and one evening I was doing work for college at a friend’s house, as my parents’ home was being rewired and they were having central heating installed, so their house was in a complete mess. The phone rang and Barbara answered it and it was Paul for me (Mum had told him where I was and given him the number) and he asked if I would meet him for a drink.

‘I’ll bet your wife doesn’t know about this’, I scoffed.

‘She’s gone’, he said briefly and I responded as one might expect, but I was really busy and wanted to get on with my assignment.

‘But I have so much work to do’.

‘I thought you were my friend?’ I melted, as he obviously needed someone to talk to.

We met at an old coaching inn and visibly upset he filled me in on the detail and also about his first marriage and the reason behind that divorce. He was partially covering his mouth, clutching at his chin and fighting back tears. I reached out to touch his hand in a gesture of support.

‘How did you know I wanted you to do that?’ he asked and I was hooked!

His story is as long and convoluted as mine and too involved to tell in a blog, so here is the abridged version:

When we first met he was estranged from his own grown up children, but before the divorce many years earlier, he had been a devoted father. Since that marriage broke down it had become increasingly difficult to see the children as they were growing up, and he had little contact with them.  His second divorce proved just as difficult and protracted – and even then he was still paying maintenance to his first wife, so once again his assets were to be decimated. He was broken.

Apart from his own three children he had three stepchildren (also grown up by that time) and throughout both marriages he worked full time as a tutor (latterly commuting 100 miles daily). Any spare time was spent on the never ending DIY, as he would usually buy older properties, live in them whilst doing them up, then sell. The process was repeated and I think in total he had lived in 17 or 18 homes in his lifetime.

We became a couple. He wasn’t perfect and neither am I, but he was probably very close to the man of the dreams I had as a young girl – the man I never thought existed. I was happier than I had ever been – and he started to laugh again too. We sometimes fought, but were totally devoted to each other and my heart would skip a beat whenever I saw him after being away from him for a few days. My sons and their families loved him and he them. After the birth of his eldest son’s first child, her maternal grandfather urged his son-in-law to let Paul know – and he made contact. I then cajoled Paul into rebuilding a proper relationship with them and they have been very supportive of me too.

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Paul with my grandson

It was awhile before I discovered what an exceptional artist he was, as I had never seen him paint. It was only when he had to leave his lovely big cottage and move to a two-up two-down on the wrong side of the tracks that I saw his portfolio and his unique talent. I bought him a small sketch book and he started drawing on our many drives out into the country. He loved landscape and worked fast and would be onto his third drawing when I hadn’t even finished my first! I encouraged him to start painting again and even sent off applications for him to submit to various exhibitions, but he refused point blank.

It was a particularly cruel blow when I became seriously ill again and we both thought I was going to die just a year into our relationship. Without Paul’s help and sheer determination I don’t think I would have survived. You can read more about it here, here, here and here.

I introduced Paul to Hong Kong where some of my family live. It inspired him – the hustle and bustle of ships in the very busy harbour jolted his dormant talent into action again and with the flat 13 floors up overlooking the West Lamma Channel, he dragged the dining table closer to the window so he had a better view and set about looking for wood from the building site below, on which to paint. The Chinese workmen were very bemused by the tall, skinny, bearded gweilo, stripping plywood off old doors and nicking off with it! He bought paint, paper and ink too and produced one painting after another. His passion for his work had returned! He started submitting his paintings and drawings to exhibitions and entering competitions – and was a regular winner, especially at London venues and one of the prizes was a one man show in Bloomsbury!

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Hong Kong Central
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Misty Ships
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Pearl of the Orient
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The Golden Arches of Cheung Chau

My father became terminally ill with cancer and was confined to a wheelchair and as I had no siblings I felt I should do my best for my parents. I worked two days a week at a factory near Paul and he would take me to work on Monday, then drive me the 30 miles down to my parents where I would stay till Thursday when he would collect me and I would work again on Friday and then spend the weekend with him, so it was very much a part-time relationship.The house next door to Paul came up for sale and my father would have moved quite happily, but my mother just wouldn’t budge.

Dad died in year 2000 and I retired from my job in 2005, but was still commuting to spend three days with my mum who by then was suffering with vascular dementia and Alzheimer’s, therefore two parts of the brain affected. She had Meals on Wheels coming daily and her neighbour, Jean, popping in several times a day to check on her when I wasn’t there. The situation was becoming quite stressful for everyone and Paul and I didn’t manage to live a normal life together. The house next door became for sale on two more occasions, but Mum flatly refused to move.

Finally Paul and I made a decision; throughout 2006 I scanned the Internet for property we might afford in Scotland and we visited Dumfries and Galloway several times to look for houses big enough for all three of us (perhaps just with a garage suitable for conversion to a granny flat) and intended to move somewhere near the artists’ town of Kirkcudbright. We reasoned Mum was so far into her dementia that she wouldn’t remember that she wasn’t ‘ever going to leave’ her house. It would mean that we could live as a proper couple  and so we would finally get married. 2007 was to be our year.

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Harbour Kirkcudbright

https://willosworld.wordpress.com/paul-love-loss-part-2/

Bernadine Bishop – ‘Unexpected Lessons in Love’


For my birthday I received the above book, which may be of interest to some of my followers. Not often do we read a novel where the protagonist and her friend each have a colostomy. In this case (and in mine), as a result of cancer.

The main character, Cecilia, is based on the personal experience of the author and I first heard about it on Woman’s Hour, Radio 4 in January, when she was discussing the book with Jenni Murray. You should be able to find the interview here: http://www.bbc.co.uk/programmes/b01pp98c

The interview really is worth listening to (not least for the author’s mellifluous voice) and it gives an insight into the life of an ostomate, living with cancer – and its consequences.

 

Mesothelioma: Asbestos Cancer Victims’ Rights Campaign – Guest Blog


In relation to my last ‘guest blog’ I was contacted by Susan Vento, the widow of Bruce Vento, Asbestos & Mesothelioma Victim and Former U.S. House Representative, St. Paul, Minnesota.

She asked if I could spread the word regarding the work of the ACVRC (the Asbestos Cancer Victims’ Rights Campaign) and also asks if you would kindly sign the petition on their website: http://cancervictimsrights.org

Please also take a look at the short videos highlighting this devastating illness.

http://cancervictimsrights.org/victim-stories/videos/

Join us in fighting all legislation that restricts the rights of asbestos cancer victims.

An outline of the campaign: ‘to expose the truth about asbestos and to oppose legislation to roll back asbestos victims’ rights. Several years ago, asbestos trust funds were established by the bankruptcy courts to provide compensation to asbestos victims for asbestos-related illness and death, and at the same time, enable companies to continue their business operations.

Recently, we have seen campaigns sponsored by the U.S. Chamber in various states and in Congress that will make it more difficult for asbestos victims and their families to get compensation. New, extensive disclosures of victims’ personal information would be required, resulting in justice delayed or denied, while companies would have no similar requirements. We can’t allow that to happen. Our goal is to inform policymakers and the public that companies were aware of asbestos dangers even as they harmed millions of workers and consumers across the country.

The campaign will show why the FACT Act is the opposite of what it is called, why victims’ rights must be protected, and why this effort to roll back victims’ rights must be defeated. If the Congress is going to act, it should be considering how to stop the use of asbestos and conduct more research for effective medical treatments, not how to eliminate the rights of victims’.

SUSAN VENTO’S Story & Opposition to the FACT Act

Dear Chairman Bachus and Ranking Member Cohen:

My name is Susan Vento, and I’m writing to express my strong opposition to H.R. 982 called the Furthering Asbestos Claim Transparency Act (FACT Act). My husband was the late Congressman Bruce F. Vento who served for more than 24 years in the House of Representatives representing Minnesota’s Fourth Congressional District. He died from mesothelioma in 2000 within eight months of being diagnosed.

Mesothelioma is an aggressive cancer caused by asbestos exposure. Bruce was exposed through his work as a laborer years before we met or became involved in public life. He told his constituency about his diagnosis in early February 2000 when he announced why he would not run for re-election. On February 14, he had his lung surgically removed and then began an aggressive regimen of chemotherapy and radiation at the Mayo Clinic.

It was not enough. My husband died three days after his 60th birthday in October. With his death, our country lost a dedicated and humble public servant years before his time. I lost so much more.

Bruce dedicated himself as a tireless and effective advocate for the environment, for working people and for the disadvantaged. During his time in Congress, he was well respected by members of all parties. He served as chairman of the Natural Resources Subcommittee on National Parks, Forests and Public Lands and also served on the House Banking Committee.

The FACT Act directly contracts the decades of work my husband invested in helping those who could not help themselves. If this bill passed, it would be a serious step back for the important work he achieved as your colleague. As the FACT Act is currently written, it is one-sided, unfair and unnecessary. It touts “transparency” yet will delay and in some cases deny justice to people suffering from debilitating asbestos-related diseases like mesothelioma.

I thank you for your consideration and hope you will stand with me in support of Bruce’s memory and in opposition of this bill.

Sincerely,

Susan Vento

Mesothelioma: Guest Blog – A story of love, survival, courage and tenacity.


Not long ago I was contacted by a young man from the USA who had read this blog and saw similarities in my cancer experience and that of his lovely wife. Against all odds and with his devotion, she is surviving too – and he wanted to spread the word by writing an article for my blog, which you will find below…

Guest Blog by Cameron Von St. James

What I Learned Caring for My Cancer-Stricken Wife

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On November 21, 2005, my wife Heather and I saw our lives change forever when doctors diagnosed her with malignant pleural mesothelioma. I wasn’t ready for it, but I quickly become a caregiver for a cancer patient. Just over three months earlier, Heather had given birth to our only child, Lily. We had expected that this holiday season would be spent making Lily’s first Christmas special, but instead we had to shift our focus to fighting cancer.

When the doctor told us about mesothelioma and told us our options, we were overwhelmed. Our doctor told us that we could visit the area’s university hospital, a top-notch regional hospital that didn’t have a focused mesothelioma program, or a doctor in Boston, Dr. David Sugarbaker, who was a renowned mesothelioma specialist. Heather was still too shocked and terrified to even think about these options, but I immediately told the doctor that we would go to Boston. This was the beginning of my role as caregiver.

In the following months, our lives became chaotic. My wife and I had both worked full time before she was diagnosed. Now, Heather couldn’t work, and I switched to part time. Besides work, I set up travel arrangements, took my wife to doctor’s appointments, took care of Lily and traveled to Boston regularly. While fearing that cancer would take my wife, I was also overwhelmed at my huge new list of duties. I wondered if I would end up homeless and taking care of our daughter alone. More than once, I curled up in a ball on the floor and sobbed, wishing these problems would just disappear. Despite having these moments of weakness, I never let Heather see me this way.  I knew that the last thing she needed was to see my fears.

Friends, family and even strangers helped Heather and me with donations and emotional comfort. I’ll never forget all of their help, and I want to tell anyone diagnosed with cancer or caring for a cancer patient to take any help that is offered. There is no room for pride or stubbornness in a cancer battle, as I learned the hard way. Offers of help will prop you up and give you less to worry about.

Caring for a cancer patient is hard. It may be the most difficult thing you have ever experienced, and you can’t just quit. You can’t give yourself up to negative emotions, but you have to accept them during this time. You have to use all your resources to your advantage.  Above all else, never, ever allow yourself to give up hope.

After years, our lives have returned to normal. Heather survived her cancer thanks to months of mesothelioma treatments including surgery, radiation and chemotherapy under the care of Dr. Sugarbaker. She remains cancer free to this day.

This experience showed me how important persistence is and how precious time is. Two years after Heather was diagnosed, I returned to school to study information technology while working full time and caring for my wife and 2-year old daughter.

The experience of handling all this stress while caring for my wife as she fought cancer prepared me to return to school. After graduating with honors, I was selected to speak at my graduation, and told my fellow graduates that just a couple of years before, I wouldn’t ever have thought I’d be there in that moment. I told them what I’d learned through my family’s battle with cancer:  that within each of us is the strength to accomplish incredible, unbelievable things, if we just believe in ourselves and never give up hope.  Heather and Lily were in the audience to cheer me on, and that was the best reward I could have hoped for.

Cameron & Lily Cameron & Lily 2 Cameron Lily & Heather

2012 – The Hong Kong Visit (and assurance to those who have missed me, that I am still surviving my various cancers!)


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IMG_1690 IMG_1700 My stay in Hong Kong was all too short. During my time there I was able to spend the half term with my grandchildren, which was wonderful. I did lots of kids things and nothing much else. It was only when, at the end of my stay, I was on my way to the Airport Express at Central, that I realised it was the first time I had been into the city at night during that visit. Such an amazing place and I knew just how much I missed it. (Mental note – stay longer next time).

In November I had the planned surgery on my face and leg and have recently received the histology report – and the offending blemish on my leg was actually a BCC (basal call carcinoma, sometimes called a rodent ulcer).

My long holiday was made possible by my mum having to go into full-time care, as her mental health deteriorated so much – and she was sometimes quite manic and keeping me awake far too often. I frequently didn’t get any sleep for up to three nights at a time and she would then go into a deep sleep to recharge her batteries, but I would still be on the go doing my everyday things. It just became too much, so the big decision had to be made. She has settled okay into the home where she used to go for respite care, but I don’t feel it’s an ideal situation. I mean, would anyone ‘like’ to go into a care home? I know I wouldn’t. The irony is that I had the extension built to incorporate a downstairs wet-room for Mum. The extra space is nice, but the money could have been used elsewhere – even on a new roof! Mum will be 95 next week.

For the first time I spent Christmas with my younger son and his family up in Scotland and had a really good time.

So that’s my year in a nutshell.

Most of the hits I have on this blog are regarding cancer or colostomy, so thought I’d better let my followers know that I am alive and well. To summarise for new readers, it’s now 28 years since my cancer first manifested itself. Over six years it changed its course – anal cancer for which the treatment (radium needle implant in 1986) was unsuccessful. For 18 months I appeared to be well and then at a routine check-up, my doctor found enlarged lymph glands higher up in the rectum and I had to have a colostomy. That was November 1987. The following year I started a degree course and a year later, attending a Well Woman Clinic, it was discovered that I had carcinoma in situ of the cervix (unrelated to the bowel cancer) for which the cure was meant to be a cone biopsy. The surgeon at a local hospital tried that, but had to abort on account of my uterus not being accessible, as it has slipped into the place where my colon should be. As the cancer was untreated the surgeon decided to keep it monitored by giving me regular smears (ceased long ago).

Everything was going according to plan when the following year (1990) I became lame and after many months it was discovered I had a fractured pelvis due to secondary bone cancer, Conventional radiotherapy started in the December. When that was finished in January 1991 I had a few weeks break and then a bit more surgery and chemo for the next five months at three-week intervals. Since then I have had plastic surgery to try and alleviate radiation damage, another aborted cone biopsy (and of course the blemishes on my face and leg removed), but otherwise I’m well and busy – even blogging again!

I did manage to do a bit of artwork over the year and even did a portrait in Australia. I would have liked a lot longer on it, but of course didn’t have the time within my schedule. However, it was part of the bargain I made with my cousins. They wanted me to go out for the visit and said they would pay my fare, but would like a portrait as repayment. I was happy with that, so it all worked out well, though it meant I spent half of the time in front of an easel, which meant they felt a bit guilty.

Forgot to say that I was shortlisted for the BBC 2 programme, Show Me The Monet and went down to Birmingham for an interview and screen test in February, but sadly didn’t make the final cut.

I will sort out some images of the work I did in 2012 and insert them into my next post.

In the meantime a Happy New Year to All!

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