‘When they told me I needed an amputation, I had a bit of a meltdown,’ says Sue Mutch.
Sue is now five years on from her diagnosis of sarcoma. She is one of the 40% of respondents to the National Sarcoma Survey 2020 who said that they did not receive enough emotional support from hospital staff.
‘The East Midlands sarcoma service has no counselling attached to it. The people who work in this service are wonderful, but there isn’t someone to talk to about the emotional side.’
Sarcoma has a serious negative impact on the mental health of patients and their families. Nine out of 10 patients say that their diagnosis or treatment has a negative effect on their mental health, but a frightening 25% say sarcoma has had a severe effect.
‘I was in hospital for about two months and then approached my GP about counselling. I knew it would take time, that the NHS counselling services would take time, and it ended up being five or six months after surgery before I got six sessions, which focussed mainly on change and how the amputation had affected me.’
Sue’s surgery had a dramatic effect on her life. From relatively small things like shoes no longer fitting to the impact of facing major life decisions; ‘I knew there were steps down to the garden and I remember thinking do I now need to move house? What was my new normal going to be?’
‘My perception of who I was changed dramatically. I had to stop work. There were huge swathes of my wardrobe that went to the charity shop. I really struggled with working out I was.’
Over half of sarcoma patients say that anxiety impacts their day-to-day life, and Sue agrees. ‘The thing with sarcoma is that it recurs, and it metastasises, and that hangs over your head. Is it going to come back? You get that thing they call ‘scanxiety’, your quarterly check-ups then become half-yearly, and now for me it’s every year. You want to go to these scans but at the same time, you’re terrified, you could be living with a cancer for a full 11 months and not know until your next scan. All sorts of things prey on your mental health.’
Sarcoma affects friends and family too. 92% of respondents to the survey said they provide emotional support to their friend/relative. Knowing the negative effect that her diagnosis was having on her family was also a source of anxiety for Sue: ‘My mum would come and visit and she would be great, but my sister told me that she would go home and cry for hours. No parent wants to outlive his or her child. It doesn’t just affect the patient, there’s element of guilt, of feeling like they can’t do anything to help. It’s a horrible situation for anyone to be in.’
While being grateful to family and friends for emotional support, Sue believes that patients need support from professionals. ‘My family were relentlessly optimistic, they kept telling me I needed to be optimistic and positive about it, that that would make a difference. In fact, what I felt I needed was someone who I could talk about all the darkest areas of what could happen. For me, I want to know what I’m dealing with and then plan for both the worst and the best.’
‘I think every sarcoma centre should have a counsellor to talk to you about your treatment and what will happen. When I was told I needed to have a below the knee amputation, it was delivered in such a matter of fact way, I had a real meltdown. No-one said, ‘this is what you need to do, this is what you need to think about’ and how you need to approach it. The consultant said to me at one stage, ‘it’s life or limb’ and when you think about it like that, it’s easier.’
Five years on and Sue is feeling better both physically and psychologically. ‘Nowadays, I still have days where you have a bit of a wobble, but I am doing much better. I do creative things to help me manage. I used to do a lot of walking, loved that but obviously cannot do that now as much. There is a gym nearby where I go and I can do my physio exercises. I used to set myself targets for my recovery, hundreds of little things, like walking my dog and managing to go to my favourite beach in Cornwall.’
The full report, Impact of Sarcoma: The National Sarcoma Survey 2020 is available now.
Find out more about policy at Sarcoma UK including our pledge to push for better access to the appropriate psychological support for sarcoma patients and their carers.