My Husband Has Mesothelioma - Sue's Story

In December 2007 Howard, my husband aged 58 years, was feeling generally tired and had a dull ache down his left side. He said he didn’t feel “himself” so he made an appointment to see the G.P. He went for an x-ray, followed by a CT scan and then a CT guided biopsy. From that, the diagnosis of mesothelioma was made on 30th January 2008. This was the day our lives were about to change.

The lung specialist nurse appeared to be bombarding us with information on benefits and claiming compensation from his previous employers/insurers. I remember saying ,‘this is not the time to be giving us this information upon diagnosis, at least let us get our heads around it all first?' Ten months on, I now understand why it all had to be done a.s.a.p.

We had lots of support from the lung specialist nurse, who came to our home to help us complete benefit forms etc and explained what we could claim. If there is a good thing that comes out of this condition, it is the fact that you are entitled to benefits at 100% and not having to fight for it all. Everyone involved were extremely efficient in this area, as well as compassionate and within four weeks Howard was in receipt of all the benefits he was entitled to. This enabled him to make the difficult decision to retire from work to make the best of his time.

We were given the limited options of radiotherapy at the base of the biopsy sight, followed by six cycles of chemotherapy. Another option was to have the lung completely removed by surgery. This was known as the M.A.R.S trial- mesothelioma and radical surgery. We discussed this option, but it didn’t save your life. It may prolong it, but the aftercare and the percentage of dying on the operating table was enough to put us off going down this road. As it turned out, the trials were then stopped, due to problems. Such relief.

Between 4th March to 27th May 2008 Howard had three sessions of radiotherapy, followed by four cycles of chemotherapy - Cisplatin and Pemetrexed or alimta. Unfortunately, one of the treatments had damaged Howard's kidneys which resulted in a hospital stay for a couple of weeks and so the treatment was also stopped. So, where did we go from here?

Well, we went on a family holiday in August and we are planning our next holiday for after Christmas. Travel insurance. Now, that’s another story. I have spent hours and hours browsing websites and getting ridiculous quotes and have spoke to several companies over the telephone, but to no avail. How infuriating that companies will not insure mesothelioma, as it is a terminal illness. They ask you several questions from- where did the tumour arise, has it spread, are you on any tablets or treatment etc? only to be told “sorry, we cannot cover your illness”. My argument is that you would not be travelling if you weren’t fit to travel and without the go ahead from your consultant, so why do the insurance companies even bother to ask you all the monotonous questions, when they are actually basing it on the condition being terminal. Disgusting, when all the patient and their families want to do, is enjoy QUALITY time together, as QUANTITY isn’t deemed great. The debate goes on.

Howard keeps a day to day diary and this actually helps to alleviate any stress, anger, upset, anxiety etc. It really does work. I sent for a book from the internet called LEAN ON ME by Lorraine Kember. It is a day to day account of a woman who’s husband was diagnosed with mesothelioma in Australia. I read this book and felt incredibly humbled by it, but I also felt relieved that I could relate to the feelings she describes in this book and this helped me to cope as this illness affects everyone and in many different ways. www.cancerthroughacarerseyes.jkwh.com

When Howard was first diagnosed, he found it incredibly difficult to come to terms with it all. He was worried about paying the bills/mortgage etc, as well as worrying about me-{his wife} and his fifteen year old son. Especially as Ryan leaves school in May 2009 and is going through his exams.

He felt everything was all his fault and that he was powerless to do anything about it. As time has gone on, he has gone through feelings of looking for someone to blame, anger, anxiety and frustration and feeling a fraud. The latter due to feeling much better now and not looking ill. He describes it as “wishing you could just put your hand inside and pull the tumour out”. If only!!!

The biggest thing for Howard, is having to get others to do the decorating, gardening, D.I.Y etc and having to adapt to a completely new way of life. The whole dynamics and responsibilities of our family have had to change and the stress that comes naturally with having to live with this condition, day in ,day out, is horrendous at times and you wonder how you are ever going to get through another day. But you do.

We take each day as it comes.

I continue to work (for my own sanity) but my employers are extremely flexible with my shifts/rota, which is a huge help to us. This allows me to support Howard every step of the way, with hospital appointments etc, as well as give me an outlet when I’m having a bad day.

There is more awareness of mesothelioma since Howard was diagnosed. It’s on the radio daily and we have seen it in the newspapers. There are support groups, but this was a no go area for Howard. He doesn’t wish to see poorly people with the same condition at a further stage. We can only live in hope that any information about this condition will be incredibly useful to others in the future, as we feel there wasn’t enough information, or awareness.

Many thanks to Sue Price for sharing the experiences of her and her family on this site.

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