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How do you ever tell your children that you could die?


Family ties — Pamela, now in remission from myeloma, with husband Trevor and children Sam and Beth. J

Family ties — Pamela, now in remission from myeloma, with husband Trevor and children Sam and Beth. J

Stephen Hamilton

Family ties — Pamela, now in remission from myeloma, with husband Trevor and children Sam and Beth. J

There are moments every parent dreads, not least knowing that your child is in danger or pain.

But when it is you who has to break the news to your family that you have a fatal disease, there is a different kind of grief, that of knowing you will not be there to see your children grow into adults.

When mother-of-two Pamela Buchanan, from Ballycarry in east Antrim, was diagnosed with myeloma, a rare form of cancer which develops from abnormal plasma cells in the bone marrow, her life and that of her family was changed forever.

“Suddenly it wasn’t a God-given right that you would get to see your children grow up,” she says. “That’s the difficult part of the disease to live with.”

Such is the relatively rare occurrence of the disease — it accounts for only one in every 100 cases of cancer diagnosed annually in the UK — that symptoms can go undetected for years.

The average life expectancy from the time of diagnosis is, on average, between three to five years.

For Pamela, the first that she knew there was something seriously wrong was during a shopping trip just over two years ago.

“Just before Christmas 2007 I had gone to Argos to buy some things, and was able to lift the first package and take it to the car,” she says.

“But when I went back to lift the second thing I just couldn’t do it. I had really sore back pain all over Christmas, and dosed myself with strong painkillers, because I thought it might be a muscular problem.

“I just felt unwell — I couldn’t get out of bed, I had no ‘go’ in me, and that just wasn’t me.”

As a busy working mother, Pamela’s symptoms were initially put down to stress or overwork, but she became increasingly worried as they grew progressively worse.

“I stepped out of the bath and ended up on the floor because the first of two vertebrae collapsed in my back.

“A week later, the next one collapsed while I was changing a duvet on the bed.”

It was only after a visit to a specialist orthopaedic consultant that the gravity of her situation became clear.

“The phone kept ringing and I was told to come in and see him immediately,” she says.

“I’ve worked long enough in the medical profession to know that the only thing you get seen instantly for is because you have some form of cancer.

“I had never heard of myeloma, just as the majority of people haven’t, although my husband, who is a dentist, remembered from his training what it was. How he sat there with a calm face while they told me, I don't know.”

Pamela was told she would have to undergo several gruelling cycles of chemotherapy, before attempting a stem cell transplant to try and stymie the disease.

“It was exhausting,” she says. “They give you enough chemotherapy to bring you within an inch of being dead, to clear the bone marrow completely out, and then use the stem cells to bring you back. Three weeks later I came home, hairless and a stone and-a-half lighter.”

The heavy physical demands of the treatments meant she was unable to see her son and daughter for several weeks.

“Children are considered too high an infection risk, because you have no immune system at all,” says Pamela.

“I wasn’t allowed to see the kids the whole three weeks — they were doing exams in school at the time, so it was very difficult.”

Breaking the news of the disease to someone so young was also traumatic in itself.

“They understand what chemotherapy is, because they saw their granny go through it,” says Pamela. “They were both quite traumatised by the fact that their mum wasn’t there.

“They both have a degree of understanding about what myeloma is — they know that it will come back.”

The practical difficulties of running a house and a busy dental practice, where Pamela is a hygienist, were also a concern for both her and her husband.

“Every mother takes for granted things like doing the school run,” she says.

“I couldn’t take a big trolley and do a big shop, just two or three days at a time. You have to be a bit more organised.

“My husband now has to learn to do things like paying the bills, and we have list of pin numbers in case I take a massive infection.

“We want to go on a cruise next summer, but we don’t know whether to book it or not. You don’t plan a year in advance, you plan in weeks. It takes that away from you, although it makes you very glad for every opportunity you have.

“But I am so lucky I have people who have supported me — it makes you realise simple things that you take for granted.”

Pamela’s stem cell transplant proved some barrier to the spread of the disease, but the condition is such that patients are only afforded a limited period of remission.

Her other options for life-prolonging treatment include a bone marrow transplant, for which Pamela’s sisters have already proven a match. Yet there are risks with this procedure as well.

“It is the only thing that the experts think could be curative, but they aren’t able to prove that,” she says.

“If my remission is short-lived I will then go back and have my sister’s bone marrow — although the chance of dying from that is 25%.

“And it’s not a case of my body rejecting her bone marrow, it’s if her bone marrow rejects my body. If that happens it can kill you, because it shuts down your system.

“But a transplant will never cure me; there is no cure for myeloma.”

To help others diagnosed with the disease, Pamela has helped set up and run a support group for other sufferers aged under 50.

“When I was diagnosed it felt like a very lonely place to be,” she says.

“I was 35 with two kids. I couldn’t meet anybody; there was no one here to talk to. You wanted someone who would understand you.

“I put a post on a cancer website through which I met another woman. We emailed each other constantly and went through all six cycles of chemotherapy together. Our lives have replicated each other for a year with each of us going through the same things.”

The group are now organising a Masked Venetian Ball at the Europa Hotel this March.

The event will not only raise vital funds for research and development into myeloma, but, Pamela hopes, will also bring a little-known disease into the public consciousness.

“If I am only meant to be here until I am 40, that’s not for me to choose or say no to,” says Pamela.

“There must be a reason why I have got it, and part of that reason is to raise the profile of the disease, and get on with my life as best I can.”

In the meantime, for Pamela and her fellow sufferers, every moment of life is there to be lived and enjoyed.

“I’m happy that I am going somewhere that is better than here, and there’s a reason why I’m going,” she says. “I have only ever been angry once about it — angry that it has upset my family, my husband and my kids. That I can never come to terms with.

“There are days when you feel like putting yourself under the duvet.

“There are nights when I will drink too much and cry about it.

“But dying will come to everybody — it’s just that it’s a bit more real in my life.”

If you would like to buy tickets for Pamela’s fundraising ball on March 20, please contact her on 028 9336 6909 or email: pamelab@talktalk.net . Tickets include dinner and entertainment

Belfast Telegraph