Sid's story
When Sid Hider’s multiple myeloma was at its worst, even driving over a speed bump could bring tears of pain to the Green Bay resident’s eyes.
Unlike leukaemia, where cancerous cells are found in the blood, multiple myeloma is a cancer of the plasma cells in the bone marrow. The myeloma cells secrete chemicals forming tumours which cause thinning of the bones, often resulting in lesions and fractures.
In fact, in Sid’s case it led to two broken ribs after he enjoyed a good laugh at a country music concert and ultimately led to his myeloma diagnosis more than seven years ago.
Sid’s journey with myeloma began when he was just 53 and working as a structural draftsman for engineering consulting firm. He says: “I was experiencing back pain but I blamed it on an old back injury. I’m a very optimistic person and I would say to my wife, Myra, ‘next week I’ll feel better, you’ll see’.”
But when Sid could no longer bear his wife turning over in bed because of the pain it caused him, they realised they needed help and a trip to the doctor’s surgery led to Sid’s diagnosis.
Sid, now 61, says: “When I first heard the diagnosis, I felt relieved; at last I could put a label on it.” Then I told the doctor they couldn’t be my results, and asked if he had got me mixed up with someone else! Apparently, that’s a typical reaction. “Afterwards, Myra and I looked up ‘multiple myeloma’ in an old medical book and I saw the words ‘cancer’ and ‘no cure’...
“That first week was very traumatic but I quite quickly realised it was decision time; I was either going to die or fight it. I looked myself in the eye in the mirror and said, ‘my name is Sid Hider, I’ve been diagnosed with a cancer with no cure but I am going to fight it. I’m going to be a survivor’. I did that several times that week and it made me feel very strong. But Myra couldn’t come to grips with it and I had to tell her I didn’t want any negativity around me.”
Myra hasn’t forgotten how tough she found that period. “I remember walking through the local supermarket wailing. I just felt so helpless, but I had to try for Sid.”
A real turning point for both of them came during Sid’s first chemotherapy session. Myra says: “I got chatting to a woman who had been living with myeloma for 14 years – she has been our inspiration.”
Sid has also drawn great comfort from the support and education programmes offered by the Leukaemia & Blood Foundation’s (LBF) for myeloma patients.
Recalling the first meeting he attended, Sid says: “I was sitting in a room with 12 to 15 other myeloma patients, and I suddenly felt like I was normal and that was such a relief! I have received a tremendous amount of support and care from my myeloma mates and over time I have put that back, supporting others wherever I can.”
He adds: “The LBF is a real safe house, we’ve had great advice and support from them and it’s been invaluable. And the new online forum, LifeBloodLIVE is great; I would really encourage people to use it.”
By the time he was diagnosed with multiple myeloma stage 3 IGG Kappa, Sid was told there was extensive bone involvement, including his skull, neck, shoulders, ribs and spine, where vertebrae had collapsed.
Sid started chemotherapy (VAD) and was given morphine to help with the pain. “It tasted like apple cider. Who says there’s no fun in cancer?” he laughs.
“I found the chemotherapy made me very emotional and that emotional rollercoaster is always there when you are living with a disease like this. In fact, during those first three months I quickly learnt two things - how to say ‘no’ and how to cry.”
After a good response to chemotherapy, his consultant decided he was an ideal candidate for a stem cell transplant and the decision was made to harvest Sid’s own stem cells. They managed to collect enough for two transplants, so one set was put into storage.
The transplant took place at the end of November, and Sid had taken on board advice from his friends in the myeloma group who had been through the same procedure.
He says: “It doesn’t prepare you though. I found the transplant really draining. That was really my lowest ebb.”
By the time he came out of hospital, nearly three weeks later, Sid had lost eight kilos and was feeling very fatigued. His strength slowly returned as he set himself small physical goals, like walking up one flight of stairs without pausing.
He says: “I knew the aim of the treatment was to get me to the plateau stage – you don’t go into remission with myeloma. I had a text book recovery, in fact I virtually returned to the way I was feeling before it all started, but I still had the bone damage and a compromised immune system. The best things were being able to roll over in bed and look over my shoulder when I was reversing the car!”
It was at the beginning of the plateau stage that one of Sid’s friends from the LBF myeloma support group lost his battle with the disease. Sid says: “I just didn’t know what to do. I had never thought any of them would die.” The news sent Sid into a tailspin but thanks to counselling, he now has a routine he follows each time it happens – and there have been more deaths over the years.
He says: “I sit by myself and think about them, talk about them and say goodbye. I have to remember, it’s not me, it’s them; I have to focus on my journey.”
In May 2002, Sid returned to work part-time, then full-time a couple of months later. Although he had retired after his chemotherapy, his former employers had taken him back on a contract basis and he still works for them today.
He says: “I love what I do and feel my work has been an important part of my recovery process. In fact, the job I was working on before my first transplant was the new multi-storey Acute building at Auckland Hospital. When I had the transplant it was being built and I was able to look out the window and watch my drawings come to life.”
Sid had told his consultant that he and Myra wanted to travel overseas when they retired. “He suggested it would be better if we did it sooner rather than later, so in 2003 we went to Australia and now we try to go back every year. It’s very important to live in the ‘now’; tomorrow’s another day.”
That philosophy stood the couple in good stead when in September 2006, doctors discovered a myeloma tumour in Sid’s left arm. The disease had returned. Sid’s humerus had shattered over a 5cm length requiring the insertion of a permanent rod.
“It came out of nowhere,” says Sid. “I remember sitting with Myra saying this is the day we thought would happen, but hoped never would.”
Radiation therapy helped lower Sid’s IGG levels but, in October 2007, a pain in his right arm led to an x-ray and confirmation that myeloma was present again.
Although another round of radiotherapy helped reduce the pain, his IGG levels remained high. Sid says: “I remember thinking the good times are coming to an end.” Myra adds: “I thought that was the end... I didn’t think we would spend Christmas 2008 together.”
The consultant suggested a second stem cell transplant, using the remaining cells in storage, but warned the couple the plateau stage was likely to last a shorter period this time.
Sid returned to hospital and the bone pain continued to get worse, “and bone pain is very, very bad – it really hurts,” says Sid. But the transplant was successful and he reached another plateau stage. Unfortunately, eight weeks later Sid required a permanent rod inserted in his right humerus. He jokes that he now has a matching pair.
Sid believes it is important to be proactive about his health and finds keeping a diary of his symptoms useful for consultant appointments.
He explains: “Myeloma is a unique cancer and affects people in various ways. I always say, it’s my body, my illness, and my medication; everyone is different. I always try to stack the odds in my favour.”
He adds: “I’m not ignorant of what is going to happen when I’m out of this plateau stage but I will deal with it then. I choose to focus on enjoying this stage now. I always say I am living with this cancer, I’m not dying from it.”
Sid and Myra’s close relationship has proved a great source of strength for the couple. Myra accompanies Sid to each medical appointment and they talk about it afterwards, comparing notes and feelings.
“We very much work as a team. Your relationship can’t survive something like this unless you have love – we have grown closer, I really didn’t think we could,” says Sid. “Together we can accept change...”
