Jacqui lost her father to myeloma, then she was diagnosed with the same condition. But counselling provided invaluable support to her and her family during her treatment journey

When Jacqui was diagnosed with myeloma, it brought back many difficult memories.

Ten years previously, her father had been diagnosed with the same cancer and had died after 18 months.

"I remembered everything about Dad's illness. He was very unwell and my mum didn't deal with it well so there was a lot I took on – going to hospital appointments with him, taking down notes and asking certain questions," she says.

"So, when I had the same thing, in my head I was wondering if it was terminal, if I only had 18 months left too."

Jacqui's diagnosis of myeloma, which is incurable but treatable, came a year after a traumatic period in which she suffered two family bereavements.

"After losing two close family members, I was all over the place," she says. "Then my diagnosis the following year just sent us right over the top. There were a lot of questions. My children knew their granddad died of the same thing, so there was a lot going on for us as a family. They were worried about me as well as wondering if this meant they might get it too."

Counselling creates a safe space to talk

Jacqui's myeloma nurse suggested that she might benefit from seeing haemato-oncology psychotherapist Philip Alexander, who is based at King's College Hospital in London.

Although Jacqui, 60, comes from a large family – she is one of 10 children – and has three children and three grandchildren, she valued the chance to talk to someone independent.

"For me, it was useful to have someone who wasn't a family member, who was totally independent of my partner and my family. They are dealing with my cancer so it was hard to discuss how I really felt," she says.

After a while, Jacqui encouraged her younger son and her partner to accompany her to separate sessions to try to deal with some of their concerns about her illness.

"I was quite worried about my son, who still lives at home, because he saw what happened to my Dad. He'd be the one to help him, keep him comfortable. It was good to have somewhere to go where my son could come along.

"Phil helped us put things into perspective. My son was very clear, he said 'the fact that my mum is so strong and she's dealing with it makes it fine by me. I can deal with it'. I was over-thinking and worrying for him, which I shouldn't have been because he had actually taken it on board and was quite open."

For Jacqui’s partner, too, it was a chance to air feelings that were difficult to express.

"I felt it necessary for my partner to come to a session so he could say how he was really feeling. I was trying to deal with me and then at the same time trying to manage how he was feeling about me. It needed somebody in between.

"I think he was worried that I was just going to die. Because it's not curable, I think he felt I wasn't saying everything. Like myself, my partner needed to understand that things have moved on a lot since 2007, when my Dad was diagnosed.

"My partner felt he could be honest about his feelings because Phil was somebody independent of my family members and his friends, somebody impartial. It definitely helped him."

Counselling helps with treatment decisions 

One of the things Jacqui discussed with Philip was her opposition to a stem cell transplant, should one be needed. However, after counselling and involvement in a myeloma support group, she is able to look at the issue in a different way.

"If I needed to do it I would because I’ve talked it through. When I go to my myeloma group there are so many people there who've had stem cell transplants and it has lengthened their lives, not shortened them. It was what was in my head about it and Phil helped me clear all that. I know a stem cell transplant is harsh but you get through it."

Jacqui has managed to work throughout her treatment by reducing her hours and doing some work from home. Thanks to an Access to Work grant, she was able to take taxis to and from her workplace.

"As I suffer from fatigue I would not have been able to drive to and from work. If I was getting on and off buses and tubes I probably wouldn't be here now because I'd be constantly getting infections, so I get a cab to work and a cab home and that's what kept me going.

"Being at work is good in some ways because it means you're not just thinking about your situation. However, I've got a really stressful job and suffer from a lot of fatigue so it can be difficult."

Jacqui has been seeing Philip for two years, initially weekly and now once a month. She wishes her mother had had access to the same counselling which, Jacqui believes, would have helped her whole family come to terms with her father's cancer.

"My mother needed someone other than her children to talk to. It was hard for us too. 

"For me, if I didn't have Phil or somebody that you can talk to I'm not sure how I would have coped. I'm a whole person and counselling deals with you as a whole person. I've got cancer, I have a family, I go to work and I see it that it helps with my stress levels. If I'm stressed I'm not going to be well, so having a counsellor to rationalise things and just talk about how I'm feeling now has helped me.

Life in remission

Jacqui is in partial remission and has just returned from a short break in Spain with her daughter. She is happy to be able to return to some of the things she did before she was diagnosed, although she has had to modify her lifestyle, particularly her diet and is very careful with what she eats.

"I have three grandchildren who I am very close to and who I see a lot. I'd like to see them grow up. The older one started at secondary school last year and I'd like to be around when he does his GCSEs.

"I was 58 when I was diagnosed and I didn't think I'd make it to 60. I don't normally mark milestone birthdays, but this was one occasion I felt I needed to celebrate."

We wish to thank Jacqui for sharing her story and helping raise blood cancer awareness.

Leukaemia UK funded the first service of its kind to offer dedicated counsellor and clinical psychologist support for haematological patients at King's College Hospital in London. Through the Leukaemia UK Mind & Body team, people affected by blood cancer will routinely receive psychological support where needed. It is hoped that by making emotional support an integral part of everyone's treatment, psychological problems may be identified early or even avoided altogether. Leukaemia UK hopes to fund more services like these across the UK.

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