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Moments shared


Patients, family and supporters share their experiences of our care and their support

 

Marion Moss

24 May 2015

Steve worked with his sister and brother in law in their own cleaning business. Marion worked in insurance, during her 11am break she would often see Steve as he went from job to job and regularly shared a joke or two. Steve’s brother in law dared Steve to come in and see Marion for a quote and the relationship started from here. Marion and Steve had their first date on 23 February 1975. She saw him practically every night after that because she knew very quickly he was “the one”. He was such a loveable person; he could light up a room full of friends or strangers. In Marion’s words, she thought ‘He was amazing.’ 


They married the following year in July 1976 and enjoyed a wonderful marriage. Marion and Steve went on to have two daughters, Kelly, now 35 and Donna, 31. Donna celebrated her 30th Birthday with a party on the August Bank holiday weekend in 2013 and at this time Steve was fine. He was a panther taxi driver so he offered to be the transport for everyone and chauffeured guests to and from the party but the next day, he took to his bed, he had no energy and couldn’t even stand up. Marion called the GP who thought it might be a virus and recommended bed rest. A week later he was still no better. Steve didn’t want to eat or drink. The GP treated him for a water infection but this medication still did not improve how he was feeling. 

By now, Steve was feeling dizzy even when simply lying in his bed. The GP organised for Steve to have some blood tests at home as he wasn’t keen on hospitals. These showed Steve was severely anaemic and the GP called for an ambulance. An endoscopy and chest x-ray were conducted, Steve was admitted to the IDA unit at Addenbrookes Hospital on 12th September. He then had a further CT scan and a repeat endoscopy. 

The following day, Friday 13th September 2013, the consultant and a number of students came into his room. Marion knew this meant bad news. They had found a tumour on Steve’s pancreas and seen something on his left kidney. Marion remained positive and was adamant to keep Steve positive too. Over the next few days, Steve had five or six units of blood and the doctors continued a sequence of tests. It appeared the tumour was putting pressure on his internal organs. 

On 17th September 2013 Steve felt very sick during one of Marion’s visits and ended up vomiting a lot of blood which alarmed everybody. The following morning another endoscopy was carried out, where they glued the tear and stopped the bleed. Steve was stabilised and able to return home on 24th September 2013. Steve took the attitude that he was not going to “give up”. “I will do anything”, he said. However, sadly at his follow up appointment it became very clear that there was no treatment available to cure the cancer, due to the position of the tumour, it was inoperable. 

Palliative chemotherapy was offered which would potentially extend life but no-one said how long for or what Steve would encounter if he chose this route. Now they knew it was terminal, all the family were all in tears. They felt isolated and alone. Steve and the family returned home to await news of a further appointment. Steve and Marion attended the oncology clinic on 5th November 2013 and met a lovely nurse called Carol and many supportive doctors. They were really helpful and Steve and Marion felt very supported by them. 

Steve could choose the strong version where he would have three drugs intensively over three days which could offer him some extra months of life, or go for a smaller dosage of drugs over a longer period of time. Steve chose the stronger option determined to fight for the longest length of life. Steve also had a kidney biopsy, admitted on 29th November, resulting in no kidney cancer apparent. He was already on Morphine for pain relief which made him more comfortable. A referral letter from oncology consultant was sent to his GP for support. 

The palliative chemotherapy for Folfirinox was given in oncology on 7th December, through the Picc line, over three days. Specialist palliative care nurses Julia & Carol from Arthur Rank become involved. Steve was very weak and ill and on one occasion, we had a GP and Julia from Arthur Rank visit, Julia tried to get Steve into AR but no availability at that time. But it was good to feel we had some support at last! Someone friendly and helpful at the end of the phone so we didn’t feel so isolated. Steve felt very ill on Boxing Day 2013, and was rushed to A & E with a chest infection and a temperature of 40 degrees, he was then discharged 3rd January 2014. Marion still recalls all the side effects. Marion desperately wanted Steve to be healthy and happy during this difficult time she wanted him to be able to make the very most of the time he had remaining. 

The chemotherapy had such a drastic effect – causing mouth infections, leaving Steve with lack of energy and all food and drink Steve tried to consume tasted horrible - Or in his words ’like poison’. It took a long time for the chemotherapy to wear off. As he became weaker he contracted another infection and was back in Addenbrookes, 29th January 2014 for three days. When we got home Steve was no longer able to manage the stairs, or walk, so we lived in the lounge for the next few months. Steve missed lots of oncology appointments, but was offered further chemotherapy. Marion felt Steve was not strong enough but Steve was adamant. 

The second bout was Gemcitabine on 7th March 2013, administered at the health centre every Friday for three consecutive weeks.  Steve was so, so poorly but kept saying he was fine, still determined to fight. Marion added ‘As the infections become more frequent and the need for care increased, Steve was admitted to the hospice on April 1st 2014. For the majority of the time Steve was stable but I remember one hiccup during the night, clearing his throat became difficult and he started to panic as he struggled to breathe. The nurse came immediately and provided a nebulizer which enabled him to breathe more easily. The next morning a therapist came and showed me how to manage this if it reoccurred and that was reassuring.’ 

Steve and Marion’s daughters would visit at lunchtime, Steve and Marion had encouraged them to continue at work for as long as they could. They could see that both Marion and Steve looked calmer and happier in the security of the hospice. Marion and Steve were able to spend, as Marion explains ‘They had three lovely weeks together at the hospice. Steve’s spirits had lifted, his body was struggling but he was happy and chatty. 

With Steve’s symptoms now under control, Cilla, the social worker for Arthur Rank Hospice, talked Steve and Marion through what might happen next and the possibility of Steve going home for a while with a view to returning in the future. They were nervous at the thought of leaving the Hospice but Cilla explained what support and equipment could be provided for them at home. It was understood that Steve would be too weak to climb the stairs, so Cilla, with the support of the occupational therapists and family prepared the home for Steve’s return, when both Steve and Marion would live downstairs.  

By Easter Sunday everything had been delivered like a new hospital bed, commode, ramp etc, so it was decided they would make a trip home to see how they were able to manage. The charity organised the transport to and from the Hospice and it now seemed less daunting to take Steve home. The visit home went well and when they returned to the hospice that evening there was an Easter egg on his pillow-this made Steve smile. A few days later, Marion took Steve home. Steve found it emotional at the thought of leaving the staff who he felt so comfortable with, he had become very fond of many of them and he had his favourites. He loved the Jacuzzi baths and massages; he even had his bed wheeled out in the sun one day. He was so chuffed that Marion even got a pampering one day with a massage and haircut. ’We had alot of happy days at the hospice, the staff were amazing and gave us so much time’.

’We had four special weeks together at home. During the time at home, we would try and keep busy; Steve would say ‘He would like to go to ASDA shopping. He was great at finding bargains!’ It was lovely weather so Marion and Steve made the most of this and Marion found herself wheeling Steve from place to place. Steve enjoyed his garden and often asked to be wheeled into the garden. He was inpatient though and unfortunately this was one occasion Steve wouldn’t wait for Marion to help move from the chair and Steve fell. Marion needed the help of a neighbour to pick him up and fortunately between them Steve was sat back in the chair. Steve then came down with another chest infection. Their GP visited and wanted him to go into Addenbrookes but Steve made it clear he did not want to go back in there. 

The GP rang Arthur Rank Hospice on 22 May and Steve was admitted later that afternoon. Steve slept most of the time, he was now extremely weak. Marion knew things were changing. The doctor confirmed this saying it was now very serious and it was possible Steve could die overnight. The girls stayed with Marion and the Hospice opened the ward so the family could all stay close by. The doctor talked them through what was being done for Steve, how they were managing his pain and the uncertainty of the “unknown”. Steve was aware of who was there although he could no longer speak. 

Throughout his illness, Steve and Marion’s daughter, Kelly, had been juggling her time with her parents and studying for a qualification, even whilst at the hospice. She found it difficult to concentrate but Marion kept encouraging her, Marion and Steve knew how important this was for her future. Steve was extremely drowsy but he opened he eyes and I could tell he was looking for Kelly. ‘It’s ok’, I said, ‘She had gone to submit her exam’. When she returned he opened his eyes and Marion asked Steve ‘How proud of her, he was?’ He gave a thumbs up, he was so proud. Kelly ended up with a great exam result. Donna also found this time difficult juggling her life with full time work, a 3 year old and being with her dad. 

Steve was aware there were many family members around him, which caused him to question if he was nearing the end. The family couldn’t face to answer this question. So they asked the doctor for help and to answer his questions. She asked Steve what he wanted to know. ’She was so honest with Steve and she answered all of his questions calmly and sensitively and he knew it was nearly his time.’ Marion felt it was important that details of his condition came from the doctors as the family had always been so positive with Steve they didn’t want to admit they were losing him. He accepted the news and Marion felt he then began to let go. It was so hard for everyone. Marion explained how it had got to a point where he wasn’t living; it was a torture to watch.  

On 29 May 2014 at 11.30am, Steve died. His wife, daughters, son in laws, sister and niece were all present. 

All the family continue to support the Charity by taking part in the Star Shine Stroll, The Big Bike Ride, donating to the shops, funeral donations and James completing a Half Marathon. We as a family can’t thank ALL of the Arthur Rank hospice staff enough for all of the support and special care given to all of us during our time there. Being able to stay with Steve day and night and even being able to have our daughters stay during our final days was just amazing. 

It was so nice not having visiting restrictions, like you do at hospitals. When a loved one is so ill/terminally ill you do not want to leave them and they do not want to be left alone. Our support continued after Steve’s death, with bereavement counselling offered to all the family which helped us all at a tough time. We cannot praise them all enough. We cannot praise all the staff enough. Once again, we thank you all at Arthur Rank Hospice.

 

 
 

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