Amy's Wing Walk For Bolton Hospice

In August 2017 my husband John was admitted into hospital with suspected appendicitis and underwent surgery to have his appendix removed. It was during this surgery the doctors noticed something unusual and it was after this John got his diagnosis of the very rare disease Pseudomyxoma Peritonei (PMP for short).

In November 2017 we visited The Christie and met Johns consultant who was almost confident she could remove the disease and surgery was planned for February 2018. After spending 12 hours on the operating table we found out full removal of the disease had been unsuccessful with the surgeon describing Johns case as one of the worst she had seen in her 15 years of specialising in PMP.

Arrangements where made for John to be placed on a watch and wait care plan but after a CT scan late 2018 it showed the disease had started to grow again so he began Chemotherapy. Unfortunately after 6 grueling sessions a CT scan showed a small increase and the oncologist and John agreed to stop the course. Another 2 types of Chemotherapy where tried throughout 2019 and early 2020 but again these didn't help reduce the disease so John made the heartbreaking decision to stop all treatment.

In 2020 Johns health deterioted quickly and in April 2020 Johns Oncologist told us there was nothing more that could be done to help and sent us home to spend what ever time we had left together. Although we wer broken John really wasn't giving up and after some research we contacted the only other hospital in the UK who specialised in PMP and sought a second opinion.

In June 2020 two specialist in Basingstoke teamed up to operate on John, removing over 20kg of tumour/mucin and fluid from Johns abdominal area, giving us more time as a family to make more memories.

Unfortunately the disease has grown much quicker then expected and in October 2021 we were advised by the specialist who operated in 2020 that there wasn't anything else his team could do but recommended John to an amazing team in Oxford for a somach, pancreas and bowel transplant. As a family we knew this was a very dangerous procedure but John was adamant he wanted the transplant so in December we visited the team who agreed to carry out the transplant and place him on the organ donation register.

Unfortunately since then Johns health has declined massively and the disease is now affecting the chest area and for this reason Oxford have decided its safer not to operate. When hearing this news John was in the Intestinal Failure Unit in Salford where visiting was restricted and we asked if we could bring him home as not only did we all miss him we wanted to spend as much time together, making as many memories as we can.

John is now home and is receiving palliative care from the amazing hospice team who visit him daily to see to Johns medical needs and help with his pain management. Without the hospice team John wouldn't of been able to come home so we are so grateful to them.

The Hospice at Home Team transfer the hospice philosophy into our home environment. The nurses work collaboratively with District Nurses, GPs and Macmillan Nurses, to ensure that patients like John who wish to be cared for at home, surrounded by their family and friends, are able to do so. It is a seven day a week service currently operating between the hours of 08:30 am and 4:30 pm.

The Hospice at Home team is a core team of nurses who are highly skilled, motivated and committed in delivering all aspects of specialist palliative and end of life care to people whose preferred place of care is their home. In addition, the team is well supported by the medical staff based within the hospice.

The Hospice rely on your donations because government funding only covers a fraction of our costs. Without your generosity they wouldn't be able to provide the care they do.

Every donation, of any size can have a real impact on the care they offer and the difference they make in people's lives.

We will be forever grateful to them for all they have done for us as a family.