Ceri’s husband Mike has been diagnosed with acute myeloid leukaemia and myeloid dysplasia; he’s been receiving palliative care from Ysbyty Glan Clwyd since June 2018. To help with the additional travel costs and time off work, Ceri has recently been provided with advice and support from one of our Cancer Support Advisors.
“My husband Mike had been out for the day with his brother and came home thinking he had tripped because he was in a lot of pain in his hip. Over the next couple of weeks I’d taken him to his doctor and to A&E several times with the problem before we were told to return to A&E. I overheard a doctor at the hospital who said that his blood tests looked bad. They found that he had an infection in the hip and he was diagnosed with chronic myeloid leukaemia.
“Mike was initially treated with chemotherapy tablets but after three years his condition deteriorated and he was diagnosed with myeloid fybrosis. The doctors recommended a bone marrow transplant to treat the cancer, and despite two matches being found, Mike was not healthy enough to have the procedure. When his health worsened again, Mike was diagnosed with acute myeloid leukaemia and myeloid dysplasia which is when we were told the only option would be palliative care. Mike had to have a cycle of chemotherapy injections over seven days for six months.
“The journey back and forth is a massive cost in itself. In the times Mike was well enough to be at home, as his health became worse we were traveling to hospital for treatment at least twelve times a month; five times in the first week, three in the second and four times in the fortnight after. When he was in hospital, sometimes I’d be making a 30 mile round trip to wash clothes and bring them back in again.
“I’ve not been coping well at all. We’ve been together for 43 years the thought of losing my husband is horrific. I always put on the brave face to visit the hospital but on the inside I’m screaming. I have some really good friends that I can speak to but I don’t want sympathy, I just want to get rid of all this grief and anger that I feel. I had initially received some emotional support from Tenovus Cancer Care which at the time helped me enormously.
“Work has been really supportive, but due to the terms of my contract my salary was reduced by half after taking over six months off, so I approached Tenovus Cancer Care for financial guidance. I work with an organisation called Community and Voluntary Support Conwy. We’ve referred volunteers to the local Tenovus Cancer Care shop in the past and now I’m on the receiving end of their support it feels like things have come full circle!
“I received help from John, a Tenovus Cancer Care Cancer Support Advisor based at Ysbyty Glan Clwdd. John has helped me to obtain financial support, which will go towards covering my loss of earnings and the cost of travel. The forms are huge and Tenovus Cancer Care completed everything for me over the phone, helping me to apply for Personal Independence Payments when Mike was diagnosed with myloid fybrosis, and more recently John has helped me apply for Employment Support Allowance.
“I don’t know how long Mike has left, so I want to spend as much as time as possible with him. Mike's condition is so rare that the specialists don’t know themselves. Mike developed neutropenic sepsis numerous times and any infection he gets is very difficult to manage. There’s no more that can be done for Mike; his treatment has been stopped so that he can spend what time he has left at home. We’ve both received the fantastic, care, support and empathy of all the health care professionals on Heulwen Day unit and Enfys Ward at Ysbyty Glan Clwyd. Without the emotional support and financial guidance of Tenovus Cancer Care I would have been lost!”
If you'd like to find out more about our Cancer Support Advisors, or any of our cancer support services, click here or call us on 0808 808 1010.