Julie

JulieI always knew I wanted children and I wanted a boy first. Jamie came along and we had some wonderful years as a family of three. Then we decided it was time to extend our family and Sophie was born.

Jamie was the best older brother anyone could hope for. He was so caring, always looking out for Sophie. At the same time they did have the usual brother/sister arguments. When he had friends over, she would want to be involved. Bless him, he would let her join in for a bit but then would naturally want her to go away. What I wouldn’t give to hear those arguments again.

First sign of trouble

A year after Sophie was born, I was diagnosed with breast cancer. I was so frightened of dying. I kept thinking, "I have got to get through this for my kids". I was full of fight as I had everything to fight for. I had an operation to take the cancer out but, because the tumour was 10cm, I needed a second operation. We were thrilled when we got the news that the treatment was successful; the doctors were satisfied they had got it all out after the operations and six rounds of chemo and radiotherapy.

We were always very honest with Jamie. We told him that mum had cancer, it was curable and I would live through it. I remember when I lost my hair - he would get the handheld vacuum out and vacuum it up. By 2012 I had had the majority of my reconstructive surgery done and life for us went back to normal.

Worries about Jamie

It was Easter-time the following year when life started to change. One morning when I was lying in bed, Jamie came in and said he had a headache. That was the first of many headaches. He also started being sick. We went to the GP, who referred us to a neurologist. Following a consultation, she thought it was most probably migraine but advised us to have an MRI scan.

Jamie was at prep school. One day, as he was getting out of the car, he said he felt giddy. He started to walk towards school and the next thing he was collapsing into the two solid doors at the entrance. I remember one of the parents - who was a GP
– saying, “Something is not quite right.” An ambulance was called and, when we got to the hospital, he was examined by a junior doctor who asked whether Jamie’s mood had changed. That is when I felt sick – really sick. At the time there was a story in Emmerdale where the character’s mood changed and it signalled a brain tumour.

Following an MRI scan, my husband Kev and I were pulled into a room. They suspected a brain tumour. Not just any old brain tumour – but one that was "quite severe". Jamie underwent surgery that was scheduled to take five hours; it took 10. The tumour was attached to a critical part of the brain and the surgeons couldn’t get it all out. We were told that he wouldn’t see out the year. I collapsed on the floor - I just couldn’t believe that Jamie would die.

Hope of a cure

We met an oncologist who said there was a 50 per cent chance of a cure using chemo and radiotherapy but it was a really gruelling treatment. After two courses, Jamie was hospitalised with a gut infection. He went from six stone to three. However, by Christmas we were given the most amazing of gifts – the news
that Jamie was cancer-free.

The next six months were fantastic for all of us, until June 2014 when Jamie had a routine MRI scan that showed the tumour was back. We were in total disbelief but once again we had to pull on that inner strength for Jamie and Sophie.

Because he looked so well and didn’t deteriorate, we started to allow ourselves to believe the hospital had got it wrong. Then, on 2 January 2015, Jamie had a seizure and we were told there was nothing more that could be done. We made the decision that we wanted to go home. We wanted Jamie to die at home, surrounded by all his things and the people who loved him the most. Jamie’s community nurse suggested we get some support from Keech Hospice Care. The word "hospice" suddenly made it all very real.

Dr Hannah helps out

Keech Hospice Care’s children’s doctor, Dr Hannah, came over with Carly, one of the community nurses. Jamie and Dr Hannah hit it off straight away - there was no awkwardness at all. Over two years the specialist had got hardly a word out of Jamie, yet here he was chatting away to Dr Hannah.

His speech came back but his memory was poor. Then, three weeks after coming home, he had a massive seizure and we were told that he would probably die within the next 24 hours. However, he went on to live another week, with Keech nurses coming in daily to take care of him. We all camped out in the bedroom so we could be with him at all times. Towards the end of the week, though, he was really sick.

Sometimes I think life has been so incredibly cruel to us. Yet life goes on and, whilst the medical profession can do no more, Keech Hospice Care can help us achieve the best possible life together.

 

On 28 January 2015 at 12.50am, Kev called out to me. I woke up just in time to catch Jamie’s last breath. We had some moments of our own first. And then we called the Keech Hospice Care 24-hour helpline and one of the children’s nurses came out. To have the Keech nurse there was wonderful – it made such a difference.

After the funeral we were offered Keech Hospice Care’s bereavement services. I was very worried about Sophie so we decided to try music therapy with Keech music therapist Nathan. It has made such a difference and they have built up a great relationship, based on trust. Sophie actually counts how many sleeps until her next session. Nathan has extracted so much from her.

Keech provided me with a bereavement support volunteer. I was very nervous at first. However, as soon as I met Karen, I felt like I had known her for years.

Another blow to the family

I started to feel ill in April 2015. An X-ray showed that my left lung had collapsed due to cancer and, 24 hours later, I was told I had secondary breast cancer. In one day I had my lung drained, was referred to Oncology and started treatment. A biopsy found it was also in my bones.

In 2016, I was told it had spread to my liver, too. I was referred to the Palliative Care Centre at the hospice where I met the lovely senior staff nurse Angie. She outlined all the ways the centre could support me. I still felt apprehensive and didn’t really think Keech could make that big a difference to my life. But now I come to Keech every Wednesday and I am part of what we call "the Wednesday girls", which is made up
of patients Keech is also caring for. What with chatting to the girls, reiki, doctor appointments and doing work on my memory box, I could hardly fit everything in.

Julie memory box

After spending a day at Keech Hospice Care, my home life is a lot easier. I can continue to be a mum and wife at home because I share my worries at Keech. I leave Keech feeling so much lighter.

We have told Sophie the truth about my prognosis. Keech Hospice Care advised us that it really is best for the child to be honest. When I told Sophie, she asked if it was getting-better cancer or dying cancer. She now says, “I know we have to be nice to Mummy – her cancer is getting worse.”

My biggest fear with getting sick was always about the pain. However, with Jamie, I have seen first-hand how Keech helped to manage the pain so that fear has gone. Now I fear leaving my family but I know they will be strong and help each other through it. And I also know that I will be with my Jamie and he won’t be alone any more.

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