’s Ball, Bernie, Jenny’s husband shared his experience of being a carer for Jenny. He gave a very open and honest account about his role as carer while taking care of his lovely wife, Jenny at home after she had extensive surgery twice for vulval cancer, prior to loosing her battle to this devastating disease.
This year at Jenny
Bernie, very kindly offered to share his experience on the VACO website for other carers to read, with the hope it will help them to get through a very difficult and devastating time.
Bernie’s story is a very frank, open and honest opinion of what it was like to care for Jenny, and how this affected his own life and that of Richard, Jenny & Bernie’s son..
Please read Bernie’s Story and, please do pass this one to any carer, family member or friends you know who are caring for a loved one suffering with the disease no one wants to talk about, cancer! Especially cancer of the vulva! It will help them realise they are not alone and the thoughts they may be silently thinking are the same as Bernie also thought, but has been brave enough to speak publicly about them.
One of the most important kinds of support a carer can receive is to know they are not alone in what they are thinking and feeling. Bernie has covered everything a carer goes through whilst nursing a loved one and I would like to thank him for being brave enough to write and share this very personal account of how he coped and also, how we was let down by the system.
Who is looking after you? This was the question I was asked by the gynae surgeon just 3 months before Jenny died. I was taken aback, it was Jenny that was terminally ill, not me. But this man knew exactly what I was going through, as Jenny's carer 24 hours a day, 7days a week, he wouldn’t be surprised to learn that at the end I was mentally and physically exhausted, I had lost a stone in weight, and Richard thought I would be next.
Jenny was my wife and Richards mum, she was our best friend and she died on 18th July 2005. She had Cancer of the Vulva which Jen and I had never heard of, and you probable hadn’t until tonight.
Radical surgery was needed in October 2003 which involved the removal of her Vulva and Clitoris, after Christmas we had the all clear and Jen was back at work by the end of January 2004. In the June we holidayed in Skiathos and I remember her saying on the plane, " this will be the first holiday I have had without an itchy fanny ".
Unfortunately on returning home it was back to the doctor and the gynaecologist. By October 2004 the Cancer was back. This time it was over 7hours of surgery to remove more Cancer and reconstructive surgery to enable poor Jen to have radiotherapy, Later she would refer to her "Designer Vagina".
So what was it like for me the carer? Jenny's spirit, determination and humour throughout her illness gave me the strength to look after her. Some days I felt more of the patient than she did. I had stopped working and was looking after Jenny day and night, not only was she terminally ill, but the second surgery had left her disabled with Lymphoedema and a leg that would not work, this eventually put her in a wheelchair.
Even as incapacitated as she was, she would still ask, "Where are you taking me today" I would often think, why doesn’t someone take me somewhere today, away from all this.
As each week passed the number of aids that Jenny required to help her increased. When everything was returned there were 23 items!
Jen had a terrible fear of the Hospice, and after just 2 day visits she left in tears, she didn’t want to go again. Even though she never spoke about it, she was so frightened of dying. I promised her she would never have to go again and we would get help at home as I had been promised. But as the weeks passed....Where was the help?
I can only speak from personal experience, But ......
Marie Curie … I requested and then begged for night visits, but they had no one available, they did offer me 2 dates but they never materialised, they were too late.
Macmillan… Great for form filling and informing you what you can claim, but no practical help at all. After Jenny had died I had one visit by appointment, she told me to visit my GP for a check-up, this the doctor told me was because I was smoking when she had visited, and not for the feeling of loss I felt.
On the plus side Jenny’s doctor, the district nurses and all staff on ward 6A at the Lister were all exceptional and caring.
As a Carer you loose your freedom, especially when the patient cannot be left alone.
When Jen was mobile I would take her to see friends for a couple of hours so that I could get the supermarket shop done. It was awful when she was bed bound in the last weeks.
I had to phone a friend when I had dentists appointments, and would have to ask a neighbour to get my cigs and paper. I could only go to the local shops when the district nurses or loved ones were visiting, and there was still the washing, ironing and cleaning to do as well as the meals. The house always seemed to be full with carers, doctors, nurses, and the endless visitors afternoons and evenings. Sometimes I just wanted to tell them all to f***off as it was draining for both Jenny and I, but they all meant well and were there for Jen. I remember one night someone was leaving and asked if there was anything they could do, looking at the pile of cups and mugs in the kitchen, I said " yeah you can wash up before you go“.
As we approached the last 6 weeks Jen needed the commode continually, the tumour was pressing against her bladder, and where her "winks" had been was an open wound the size of a
tea-plate. The smell of decaying flesh was unbearable.
Four different professionals tried to fit a catheter, but even with the aid of a motorists torch from a good neighbour and after Jen suffering more humiliation and pain they were unsuccessful, the surgery and cancer had destroyed Jenny’s insides. So on with the commode until Jen couldn’t get out of bed.
This was right up until the last week-end when she fell trying to reach the commode without help. By this time Richard had moved in, and I left him to get his mum back into bed, I was now beginning to feel I could no longer cope. The worst time of the day for Jenny was first thing in the morning when she would wake to realise that she had to get through another day.
I will never forget the morning she woke, her body was shaking from top to toe, she looked up at me with tears in her eyes, and said,"All I want to do is get better, but I know I 'm not going to".
In the early hours of Monday 18th July 2005 Jenny fell asleep for the last time with me lying next to her and Richard holding her hand. She left this world a week later looking her absolute best.
Before I went to say my good-byes Richard had done her hair and make-up, she was dressed in her best re-finery and in her bag were lipstick, perfume, pictures of the cats and us and as normal a spare pair of knickers, just in case!
It was a fantastic farewell party as Jen would have loved.
I can honestly say I kept my promise to keep Jen at home, and could not have done anymore than I did, but after Jen's death emotions ran deep.
I was stressed and feeling guilty because of the sense of relief that it was all over. Then the realisation that you are on your own, the noisy house is now quiet, all the visitors have stopped coming, and people, not knowing what to say, cross the road to avoid talking to you.
But life goes on, and I would not change a thing, caring for Jenny was one of the hardest things I have had to do in my life, but it was also an honour.
Richard and I have been closer, and I have met a wonderful lady that I love dearly, Rita has helped me come to terms with my grief and we talk openly about Jenny, and those dark days are now filled with happy memories and laughter.
From the bottom of my heart I thank every single one of you here tonight, without your support we would not be able to raise money and bring awareness of Vulval Cancer and maintain the work that Carol from VACO does in supporting the ladies who are so desperately ill, and their loved ones who care for them ...........