‘When you have cancer, it’s like you’re auditioning for the part of yourself and you’ve forgotten all the words.’

When you think of cancer recovery, chances are you think of someone bouncing back into great shape and health. After all, you’d assume that the worst would be over.

But surviving doesn’t always mean living well.

This is something that Adam Golder knows all too well. After being diagnosed with testicular cancer in 2015, the 25-year-old says his body and mind were completely devastated by the treatment.

‘In three weeks, I had aged 60 years,’ Adam old Metro.co.uk. ‘There wasn’t one part of me that wasn’t worse off than before.

‘I found the infamous “chemo-brain” the most disconcerting. I’d already felt what it was like to be physically weak or immobile but this was altogether worse.

‘It felt like I had become a burden to family and friends and as if I wasn’t an active participant anymore. It felt like I was the sick man of my friendship group.’

Adam remembers the physical aspect of recovery as just as traumatic as the mental effects.

‘Skinny, pale skinned and hairless,’ he says. ‘It wasn’t long before that was all I saw. There wasn’t a part of me that wasn’t affected.

‘I had fallen asleep a healthy man and it was as if I had woken up in the body of a different person I didn’t recognise.’

Adam isn’t alone. A recent report from Macmillan, Am I Meant To Be Okay Now? Stories of Life After Treatment, found that the health and social care system fails to support many recovering cancer patients with the ‘significant physical and emotional trauma’ the illness leaves behind. It warned that many people felt like they had ‘fallen off a cliff and don’t know what to expect or where to turn to for help’.

The report found that over 80% of cancer patients who reported physical difficulties in the two years after treatment said they lacked full support to get their lives back on track.

Key statistics from Macmillan/YouGov online survey of 2,067 people living with cancer in the UK. 34% are still struggling with their physical wellbeing up to two years after treatment ends 30% who have completed treatment in the last two years say their emotional wellbeing is still affected 40% who have finished treatment in the last two years are living with moderate or extreme pain or discomfort. 80% of people facing physical difficulties in the two years after treatment say they have not been fully supported to get their life back on track Fieldwork conducted 23 June to 6 July 2017.

Lynda Thomas, chief executive of Macmillan Cancer Support, says: ‘It is tragic that so many people are left struggling after their cancer treatment ends. Life is often profoundly different after the rollercoaster of diagnosis and treatment ends, with people contending with serious physical and emotional issues.’

‘The health and care system has a long way to go in terms of fully supporting people after cancer treatment. The NHS must ensure that every single person who is treated for cancer gets the support that is right for them – far too many cancer patients are badly being let down in their time of need.’

When 69-year-old Sue was diagnosed with head and neck cancer in 2016, she says she was left to deal with deep and despairing depression about the future.

‘The all clear often doesn’t herald the start of a bright new life,’ Sue tells us. ‘Rather a future of fear and anxiety about all the “what ifs”.’

A year after treatment, Sue is still struggling to cope.

‘In your head, you think it’s all over again because you’ve beaten the cancer, so you think you can be yourself,’ she explains. ‘The old you.

‘But what I didn’t take into consideration was the damage because of the treatment.’

She says this was exacerbated by her family’s expectations: ‘They were expecting me to get better now I was free of cancer. There I was trying to put on a brave face, not succeeding in my head. All it was did was reinforce that I wasn’t this strong person I was expected to be.’

(Picture: Ella Byworth for Metro.co.uk)

Sue is learning to contend with this new ‘normal’, adjusting to life changes that include difficulty tasting food.

‘I ended up tears in a pub a couple of months ago because there were all these normal people around laughing and joking while I struggled to eat a bowl of soup which tasted vile,’ Sue remembers.

66-year-old Alan, who was diagnosed with bowel cancer, tells us he experienced ‘minimal support’ at the end of treatment.

‘No-one is there to advise you, no-one is there to tell you what to look out for,’ Alan tells us. ‘At the end you’re at your worst.

‘There was no guidance from the hospital on what to do next. There is very little place to turn to.’

Alan was fortunate that his local cancer support group offered free services such as acupuncture, reiki, reflexology, and counselling to as well as events with guest speakers. His experience of finding support was fairly unusual, and few others are lucky enough to access similar treatment.

As Sue was putting on a brave face, healthcare professionals did not pick up on her isolation. These feelings were compounded by guilt as she admits she didn’t want to be ungrateful for being cancer-free.

Sue explains that while the system works well when treating the disease, there isn’t anyone there ‘for the mental state at the end of treatment’, particularly when it comes to isolation.

‘That’s the way they think of it – we fixed you,’ says Sue. ‘You survived.

‘But they don’t know that the person that’s left isn’t the person you knew before.’

(Picture: Ella Byworth for Metro.co.uk)

Sue was ultimately diagnosed with PTSD but only after she had struggled for months with a ‘dreadful sense of hopelessness’. She says there should be a package to help people. ‘Not everyone may need it, but they should be counselled when they come to the end of the physical treatment.’

The difficulty with the lack of physical and emotional support is something 32-year-old Florencia knows all too well. The single mother was diagnosed with osteosarcoma bone cancer in July 2014, and has had to contend with physical and emotional trauma years after treatment.

‘People think you’re OK after treatment and that you’re cured, but it’s not like that,’ Florencia explains.

‘The support network you have during treatment goes away because people think you’re okay after that treatment. All the challenges that come with survival persist.

‘Yes, I survived but I’m paying a high price for it. I have a prosthetic leg, hearing problems and chemotherapy brain. I also have recurring nightmares about relapsing.’

This isolation was further compounded by financial struggles. Florencia lost her job after treatments left her so drained she was unable to go back to waitressing at a hotel. This was particularly concerning for her as her seven-year-old son has autism and she receives no financial support from anyone else.

Although an assessment occupational therapist notified her that she was unable to work on her feet anymore, her agency didn’t offer her a telephone or receptionist job on the basis that her English wasn’t good enough.

‘I was only offering housekeeping jobs and that was more physical than the restaurant so I couldn’t do it,’ says Florencia.

(Picture: Ella Byworth for Metro.co.uk)

Although Florencia was later offered a job processing applications, it brought its own issues: ‘The more I worked, the more I paid childcare. And as the job was admin-heavy, I had to keep on working past my hours but wasn’t paid for it.’

It eventually led to a nervous breakdown: ‘The babysitter kept ringing, asking when I’d be finished and saying she couldn’t cope with his challenging behaviour. My son was upset because I wasn’t there and I couldn’t even get a lunch break. It was making me sick.

‘If I continue, I’m going to relapse of cancer. I had enough.

‘I felt badly let down by everyone. I went to job with best intentions, actively looking for work but it was an impossible situation.’

What should people with cancer know about recovery? What should people with cancer know about recovery? It’s easy to get caught up thinking that this is the end but there’s lots cancer survivors can do post treatment, says Dany Bell, Macmillan Cancer Support’s specialist advisor on Treatment and Recovery. Understand what you can do to help yourself through physical activity – even if that’s increasing the amount of walking.

Know where you can manage anxiety. It doesn’t necessarily have to be face-to-face. You can download a mindfulness app and work through it. Everybody is different and different things will work for different people

You may run into problems even two years down the line with fatigue or anxiety about cancer coming back. People need to know that’s okay and normal and that there is help out there and they don’t have to be alone

Talk it through with a good friend or a GP who can signpost to further resources

Don’t let it go on for years – seek help sooner rather than later

Many of the people I spoke to questioned whether they should have gone through treatment at all.

For Florencia in particular, having to contend with side effects and financial instability has led her to believe she can’t move on.

‘Was it worth going through all that treatment to live like this afterwards? I will never be able to get a mortgage or a job to cover living expenses,’ she says. ‘I have to make serious cuts – there are a lot of things I can’t afford anymore. I have to eat cheaper food, check how much I spend at supermarket. I feel like I can’t move on because of a lack of support.’

While others have been able to live without letting the illness define them (such as the cases of Alan and Adam), for Sue and Florencia, the struggle is far from over.

‘You just feel like there’s no way out,’ says Florencia. ‘My life wasn’t perfect before but at least I had a stable job, a steady income, my child support.

‘The diagnosis put everything upside down, intensified everything and made it so much harder.

‘Life seems to go on for people around you but you feel like you’re watching from the outside.’

‘Three years on, I still can’t see a way out.’

For more information go to Macmillan’s online community

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