Patients, family and supporters share their experiences of our care and their support
26 October 2015
Kevin and Mary met in 1979. After finishing education in 1982, they bought a house and married in 1983. Wanting a bigger house, Mary, a successful accountant, and Kevin chose to move to Cambridge in 1987 and the birth of their daughter, followed shortly after in 1990. Mary had set up her own accountancy practice and worked with a whole array of people over the following 20 years. Mary not only enjoyed working with other people but really enjoyed the relationships that she forged as a result of her work and many of these relationships were long lasting. Mary was a hard worker and her aim was to work hard to enable her to realise her dreams of travelling and planning for the future.
In June 2013, Mary and Kevin enjoyed a long-promised road trip and covered about 2000 miles in America, visiting the Grand Canyon, Yosemite National Park and many other popular attractions. It was a lovely holiday and everything was great.
Then as the summer came to an end, Mary said she was suffering with a stomach ache, but like many, just ignored it and carried on with day to day life, a couple of weeks however this abdominal pain continued. Deciding these pains weren’t right; Mary chose to visit the doctors. On 27th September 2013 Mary was referred by the GP and then the first consultation took place with Robert Crawford on 2nd October. It was thought it may be a gynaecological problem, so bloods were tested, and her CA125 levels were monitored. It was mid-October when a diagnostic examination took place on Mary’s uterus. This was found all clear but the scan illustrated something wasn’t right. Following consultation with Justin Davis in November, Mary was diagnosed with right sided colonic cancer. As Christmas approached, Mary underwent surgery for partial removal of the bowel. The operation went well in January 2014 she met Dr Charles Wilson to further treatment. It was suggested that Mary embark on a course of chemotherapy. The treatment was a fortnightly cycle, where Day 1 was a few hours of drugs at the hospital followed by a second course at home through a drug pump.
Kevin said ‘The chemo side-effects were hard on Mary. Although they were not prescribing hair loss, there were side-effects, and after the drugs were administered there would be days when Mary would be extremely tired and feel unwell before she would recover somewhat and then the whole cycle would start again.’
The effect of the chemo on Mary’s immune system meant she had to minimise the risk of infection. This meant that crowded places like cinemas, pubs & restaurants were out. She couldn’t travel so the planned holidays were put on hold. Mary couldn’t even visit her parents as she had to stay close to a major hospital just in case she did get an infection.
During this time, it was suggested that Mary take part in some genetic tests and Mary agreed. The tests found that Mary had two variations in the genetic code in the MSH2 gene. One was harmless, but the other had never been reported before. It is believed this gene sadly made Mary more susceptible to cancer. Now this genetic link had been discovered, this started conversations amongst the family and it was found other members of the family had died as a result of this type of cancer in previous years.
Kevin said ‘Now we know about this, Mary’s sister and brother have both been tested and we are extremely grateful they are clear. Testing only starts from the age of 25, so our daughter has just been tested and thankfully they are no signs of cancer; our son is not yet 25 so he will be tested when he reaches this age.’
Mary was enrolled on a course of 12 chemotherapy sessions, but sadly she never completed her treatment. After session nine Mary suffered severe abdominal pain again and the treatment was stopped. Following another MRI, it was discovered that during chemo which should have been clearing up the remnants of cancer, in fact more cancer had formed.
On 10th July, the original two consultants became involved with Mary’s treatment and it was recommended that Mary undergo further surgery and have a hysterectomy, removal of both ovaries and the insertion of a stoma. Mary was determined cancer was not going to kill her life and having undergone the surgery by the end of July it was agreed the operation has gone well and Dr Charles Wilson allowed Mary to start on radiotherapy treatment. The treatment took place daily for a period of 28 days. It was intensive short bursts of treatment all overseen closely by expert surgeons at Addenbrookes Hospital.
Following the radiotherapy treatment, Mary was clear to have a long overdue holiday. Mary’s daughter and her husband, a US servicemen who she had met whilst he was based at RAF Lakenheath in the UK, had moved earlier in the year to Las Vegas. It was a great opportunity to visit their new house for Thanksgiving.
Kevin said ‘I can’t express how grateful we were for that opportunity, that two week holiday was so important to us both. Although Mary encountered some more pain whilst away, she was determined that it was not going to spoil her holiday.’
When Mary returned home, she went for a CT scan and then a PET scan. It was in January 2015 that Justin Davies called Mary to advise that more cancer had been found and no further operations would be possible. Mary’s earlier operations had removed a significant amount of the cancerous areas but the severity of the cancer had resulted there being very little tissue remaining to operate on. Together with the advance of the cancer the risk associated with further operations was just too great. Kevin said ‘At that moment we realised Mary’s condition was terminal.’
Kevin said ‘From the outset, I thought that Mary would have the treatment for her illness then be okay. Looking back, I sometimes think I was in a state of denial, though I am sure we both just took an optimistic view.
Kevin continued ‘We were devastated. We made a snap decision to have a spa weekend, where we could get our heads around the implications of our situation in a more relaxing environment. On our return, the doctor’s had said Mary could try chemotherapy again, which could give her another 18 months. Not what we wanted compared with successful treatment, but at least we would have more time together. ‘
At the end of January 2015, the second tranche of chemotherapy started, and administered on a similar based as before, so there were highs and lows on a fortnightly basis. However, Mary had only three sessions when she felt more unwell than normal. The next day, 21st February, Mary and Kevin went to A&E
‘When we arrived Dr Charles Wilson was on call. Mary was diagnosed with a fever so Mary was admitted and Mary was subsequently diagnosed with a perforated bowel. Justin Davies saw Mary and decided that operating on the bowel was not in Mary’s best interest. Instead, the only treatment was antibiotics and a drain. Mary asked ‘What do I tell my daughter?’ and we were told ‘Get her here now.’’ This indicated the seriousness of the situation, and that there was a chance that Mary would not last the week. The next evening, just 22 hours after she was told, Mary’s daughter arrived in the hospital from the US.
Kevin continued ‘The drain of the bowel and the antibiotics started to work. I became optimistic but this was short-lived, the doctors reminded me that this treatment was not fixing the problem, and this will all happen again. The stoma was blocked and the effects of the cancer were having more an effect.’
Kevin added ‘Mary did joke that she wasn’t to know that Friday 20th February was her last meal, and it turned out to be just a boring sandwich! That was an example of how she was even at this dark time.’
In the hospital, Mary now had a catheter, bowel drain, a tube to drain her stomach bile, and lines for antibiotics, IV fluid and IV nutrients.
‘We were now told Mary had two weeks, how had 18 months become just two weeks?’ Kevin asked.
Kevin continued ‘Addenbrookes had been brilliant, but a hospital is very busy, and noisy, and with limited visiting times for our family and friends. Conversations started with the Palliative Care Team. Mary wanted to be cared for at home, but there were questions to consider. How would we manage at home? What could we move around at home to accommodate a hospital bed? What would happen at 3am when Mary was in pain? Then we considered the other option, Mary had been a longstanding volunteer at the hospice and a regular face at the annual Light Up A Life service so we decided to look at the option of the Arthur Rank Hospice.’
The Palliative Care Team put forward an application and Mary was transferred to the hospice by Ambulance. Up until this point Kevin had continued to work whilst supporting Mary, but now his workplace came forward and on the 12th March work said ‘Kevin, it is time for you to take time off work and be with Mary.’
‘The difference didn’t take long for me to see, I rarely saw a Doctor during visiting hours at the hospital but here the consultants were on hand and I saw them regularly. The level of care Mary experienced was very different, it was suggested that most of the wires and tubes which Mary had been wired up to should be removed and in a strange way the hospice become like a home from home. On the first day, the nurse’s offered Mary a bath and Mary replied ‘ I can’t have a bath’ but at the hospice this was possible, she had a bath and a hair wash and Mary was like a different person within hours.’
Mary was given the opportunity to eat, and she did try some things even though she could not keep anything down. She went outside in a wheelchair when the weather was nice. She could even take a visit home, though she didn’t feel she could cope with that. There was a level of flexibility and understanding which we had not experienced at the hospital.
People could visit at any time and this made things so much easier. Mary had a private room and people could come and go as they pleased. Mary was looking good, she had perked up and the dignity she regained during those final weeks made such a difference, it was BIG.
‘We knew we had to make the best of the time we had left, we didn’t know what we had left but being at the hospice worked, she had access to the drugs she needed, when she needed them, her medication was reviewed daily and at times hourly. I would see the Doctors and we would be updated daily. Mary was given two weeks when she was admitted to the hospice and she had now passed this milestone.’
As Mary weakened, she was also now being sick regularly. Mary strangely didn’t mind being sick but she hated feeling so nauseous. Kevin said ‘We wanted to make the last few weeks as good as we could, whilst Mary was happy and well cared for, we could be happy.’
Kevin added ‘I remember reading in a document that an average stay in the inpatient unit at a hospice is 12 days; amazingly Mary survived for five weeks. During that time, she was so strong, but that was the way she was.’
When she started to lose the ability to talk, Mary requested that letters she had wrote a few weeks before for Kevin and the children be read out. These letters would be her goodbye and Mary’s last opportunity to communicate ‘That’s it, I’m done.’
For the last nine days, the family ensured that someone was with Mary day and night. Then, as the end approached, Mary requested that she be asleep. Kevin adds ‘We tried sleeping in the quiet room at the hospice, which the staff kindly made up for us, but ended up using the comfortable camp bed I use for fishing in Mary’s room. It made our life much easier, we were well looked after by the staff who offered us meals and drinks, then we would set the bed up for the night. It became a familiar routine.’
Kevin said ‘On 19th April, at the age of 54 and just four days before our 32nd Wedding Anniversary, Mary passed away. I was the one who was there. I had a feeling I wasn’t going to sleep that night, Mary’s breathing had become difficult but I found that I did drift off and strangely I was woken by the realisation that Mary was no longer breathing, I literally woke up as Mary passed.’
‘Every first anniversary since Mary’s passing is going to be terribly hard, but I can only say good things about all of the staff, the doctors, the volunteers; that great nursing crew, they’re remarkable really. Although I had no preconceptions, I suppose some people may think a hospice is a grotty place where people are pushed out to die. The hospice is completely different from anything like that. I am amazed the nursing team can do their job when they know there is no hope, but when I asked them, they simply said ‘We want to make people’s last days the very best they could be.’
I’m so glad that, together with Mary, we chose to accept care at Arthur Rank Hospice. We absolutely know this was the right decision and for me the support has continued. I make fortnightly visits for family support sessions. Arthur Rank Hospice made me aware of this - I am grateful for the support and I am finding it helpful in this time of grief.
‘Furthermore, family and friends took part in the Star Shine Stroll back in May in memory of Mary. Speaking for all of us we felt it was really important to give something back. It’s a strange thing, although Mary volunteered for the hospice, I didn’t know what Arthur Rank really did, I just knew lots of people supported it. I don’t find it sad returning to the hospice for my sessions, but I still can’t walk down the corridor where Mary’s bedroom was. I know its early days and may be in time I will be able to.’
‘The hospice is there for when something catastrophic happens, one minute everything’s fine and then suddenly it isn’t. We had 18 months of turmoil but those last five weeks in Arthur Rank Hospice went in a flash. Sometimes, it feels like just yesterday and sometimes an age ago but I have no bad memories. Mary’s last days were spent with everything she considered comforting around her, she was happy and therefore we were happy. Mary was treated so well and for that I am very grateful.’
Kevin kindly shared his story in support of this years Light up a life service, for more information, please click HERE
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