Martin’s Story

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“The Hospice at Home team became part of the family – everyone knew them. They were really great and they made it easier… I would have really struggled on my own, without Hospice at Home.”

Martin with Sandra and Sarah – part of the Hospice at Home team

“Helen and I met at Liverpool University where we were both students. I was studying Science and Helen was a Geography student. We were married in August 1978 and have two children, Sarah and Adrian. Helen worked as a teacher for 40 years – and she had a tremendous influence on her students and teachers she worked with. She worked at Saffron Walden County High School for over 20 years and retired from full-time teaching when she turned 60, in 2016. She continued to teach part-time at several other schools in the area.”

“Helen was a geography teacher and always dreamed of travelling – we loved our adventure holidays.”

“It was in the spring of 2017 that Helen was diagnosed with a gall bladder problem. We had booked a holiday to go to China – somewhere that Helen had always wanted to visit.”

“I had surprised Helen for her 60th birthday with an envelope that said ‘Holiday to China’. We were going to see it all! The Great Wall, the Terracotta Warriors, the Three Gorges, Shanghai, Beijing and much more…”
The Great Wall of China

“In addition, there was a place in China that I had always wanted to visit – the karst limestone rock formations located in Guilin, which is one of the most picturesque places in the world, and an excellent place to visit for a Geography teacher! We had everything planned and booked, so when it came to Helen needing to have her gall bladder removed, she ended up pleading with the consultant to do the operation at a time which would mean we wouldn’t have to cancel our trip to China.”

“Helen needed 6 weeks recovery time before being allowed to fly long haul, and the consultant managed to fit in her operation just 7 weeks before we were due to fly to Shanghai in June 2017.”

“Helen had the operation and recovered well enough to fly.  However, she was still not right.  She was getting very out of breath walking, and it wasn’t just because of the operation.  The doctor asked to see her when she got back from China, and she was admitted again to Addenbrooke’s for further tests.”

Spectacular scenery on the cruise down the Li river, Guilin.
“It was after the tests following our China holiday that they told us Helen had cancer.”

“The consultants were unable to tell us what the cancer was at that time, and they needed to do further tests. We were getting more and more impatient as it took weeks for the test results. They were trying to pinpoint where exactly in Helen’s body the cancer was.”

“It was on the 23rd July that we were told Helen had terminal liver cancer. I will never forget that date. The consultants told us that with chemotherapy her life expectancy was 10 months. Without chemo, it was less than 8 months. We eventually decided on having the chemo.”

“I just could not accept that Helen was going to die. I thought she would go in and have the chemo, and then come out, and that it would delay the cancer – not just for 2 months, I could not accept that.”

“I was hoping for a couple of years – I was hoping for a miracle. I was hoping the diagnosis was wrong – and that it would turn out to be something else, that could be cured. But miracles don’t happen very often.”

“Helen started her chemo at Addenbrooke’s in August 2017. We had lots of visits to Addenbrooke’s for her treatments. We have lots of amazing friends who helped us out, which meant I didn’t do all the trips. Helen had one 12 week block of treatments, but she had to have a couple of breaks because she was so poorly.”

“The last chemo treatment was in the middle of January 2018. We had a scan after that, and were told that her cancer was out of control. The treatment had not stopped it.”

“Helen was very organised. She had been a teacher for four decades, and was always writing lists. Before the end of 2017 Helen organised herself to get in touch with St Clare Hospice.”

“One of our best friends, Jenni, works at St Clare as an Occupational Therapist. Jenni is a very good friend and we have lived round the corner from each other in the same village for 22 years.”

“Helen and Jenni spoke about how St Clare could help, and Jenni helped to arrange for a Clinical Nurse Specialist called Erica to come and visit us at home in December.”

“Erica came to see Helen and I at home, to talk about Helen’s care and what she would like to happen in the future – her advanced care planning.”

“Helen was very brave, and she accepted that she was going to die.”

“Helen started to plan her own funeral, and she even went to visit the crematorium, because she wanted to see what it was like. Erica said that during her long career as a nurse, she has only known of one other person to do that – to visit the crematorium as part of planning their own funeral.”

“Helen was so organised. She made me lists of people who I would need to contact after she died, and lists of people to send Christmas and birthday cards to – everything. Everything for me to be able to take over. Emotionally, she was a lot more prepared than I was. There were a couple of evenings when we were alone together, when she got upset and said she was scared – but when other people came around she would be brave and told them not to cry. When I look back I have nothing but respect for my wife, she was an extremely brave lady.”

Helen’s final holiday – a surprise visit to Spain with the family
“Helen discussed everything with Erica, her Clinical Nurse Specialist. Helen made all her choices about where she would like to be cared for – in hospital, at the hospice, or at home. It wasn’t until Erica got involved that we discussed these things openly. Helen was very adamant that she wanted to stay at home.”

“From February, Helen’s health deteriorated rapidly. I was totally on board to look after Helen so she could be at home, and I devoted my life to looking after her.”

“St Clare helped us to make our home suitable for Helen. Jenni, as an Occupational Therapist, helped us to get a special chair and foot rest for Helen that helped her to sit and stand up. She also arranged for a hospital bed to be delivered to our home, with a special mattress that could be automatically inflated and deflated.”

“I didn’t know about all the equipment we would need to care for Helen at home. But St Clare’s knew what to do and what would help us – because they are dealing with situations like this every day.”

“I learnt the hard way, by having to care for my wife. There is no harder way to learn than that. When you are caring for your partner, you see what it takes – minute by minute, day by day, 24 hours a day.”

“Helen was suffering with very bad sickness, caused by the chemo, and it gradually got worse and worse. Erica came to visit us again and she said that more could be done to stop the sickness. We went back to Addenbrooke’s and asked them about having a Syringe Driver to administer anti-sickness medication. That very evening, after discussing it at the hospital, a District Nurse came out and set up the Syringe Driver.”

“Erica continued to provide support and advice and got the best medicine for Helen. When they found the right medication it made such a difference to her life.”

“Helen was unable to sleep in the evenings, when the sickness had been a real issue. It made such a difference to her, not to be feeling so sick. It was Erica’s advice and insistence that something could be done, which made all the difference.”

“I remember Erica phoning our GP from our house to discuss Helen’s medication, and then going up to the surgery herself. An hour later Erica phoned to say that the District Nurse would be round later to change the prescription to the new medicine we had discussed. That was how insistent Erica was that Helen should have the best quality of life. The drug Helen had originally been given was a general purpose one, it generally does the job, but it didn’t work for Helen. Erica knew that there were alternatives, and that it is a case of trial, error, and monitoring – and, using her experience, Erica was able to recommend something else, which did have a positive effect.”

“The cancer took over more and more, and by the end of February we needed the support of St Clare’s Hospice at Home service.”

“Helen reached a point where she could no longer get in and out of the shower herself, or do her own hair. The Hospice at Home nursing assistants were able to step in and help us, in particular Sarah and Sandra visited us on a regular basis and we got to know both ladies quite well. They were so friendly and were there for you, if you just wanted to talk. I would have really struggled on my own, without Hospice at Home. If our children or friends were at the house visiting, the nursing assistants were always happy to talk things through with them too.”

“The Hospice at Home team became part of the family – everyone knew them. They were really great, and they made it easier.”

“It is never easy, especially when you are caring for your wife, but they made it easier.”

“It eventually reached the point where, on a couple of nights, I said to myself “I can’t do this”. I was probably only getting one or two hours of unbroken sleep each night. Helen could see that I couldn’t cope on my own, and told me to ask St Clare if there was a way I could be helped during the night. I spoke to the Hospice at Home team and they said that I could have a nursing assistant come for a night shift.”

“When the Hospice at Home night sitter came on the scene, it really was a God send.”

“Jessica was a Hospice at Home nursing assistant who came to care for Helen during the night several times. Jessica was a wonderful young lady. She used to arrive early, and if there was any reason she was going to be late, she would always call ahead. Jessica arrived at 9.45pm every evening and I would get up at 6.45am to hear what had happened during the night, and to see her off.”

“Jessica was staying with us on Helen’s last evening. Our children Sarah and Adrian were staying with us as well, as the Hospice at Home nursing assistants had told us that the time was getting close and they should come to be with their Mum.”

“Jessica had warned us that sometimes a person waits for the person they are closest to, to leave the room, before they die. That was what happened with Helen and I. Jessica could see that something had changed with Helen and came in to wake us all up, but Helen had passed away by the time we came into the room. Having been warned that this could happen, made it easier for me to accept that I was not on hand at that moment of her passing.”

“Helen passed away on 3rd April 2018 at the age of 61 years. We had been married for 39 years, and it would have been our 40th wedding anniversary in August 2018. Helen had retired just one year before she passed away, and we had so many other plans. You never know when something like this is going to happen to you. It has really changed my outlook on life now.”

“Helen was not only very brave, but she really was a fighter. She had helped to plan her funeral, and designed a really lovely programme. She chose all the hymns and songs – we were so proud of what she produced. We have lived in Hampshire, Lancashire, Derbyshire, and now Essex, and people from all parts of our lives came to her funeral, to honour her and support the family.”

“I am very proud that we looked after Helen at home, like she wanted. We achieved this with the help of our friends at St Clare’s.”

“I am proud that Helen was granted her request to stay at home. I would say that, without the help of St Clare’s, Helen would not have been able to stay at home. I would willingly pay more tax if I knew it was going towards places like St Clare Hospice.”

“At times I thought I would not have been able to cope on my own. It was getting too difficult. But we made it the best it could be, in those circumstances. I will never forget the team of people from Hospice at Home, who we had contact with during that time. I have a lot of sad memories, but a lot of good memories as well, thanks to the nursing assistants we met who became like family.”

– Martin

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