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'Sure you’re grand now, your hair has grown back', the PTSD of surviving cancer

Cancer survivors talk about how difficult it can be to re-adjust to life after treatment.

IT WAS A relief to hear what it was, the name of the cancer. Still I don’t think it really hit me for a couple of weeks that ‘God, I have cancer’. I think when you’re going through the treatment you’re looking at it thinking ‘I’m going to beat this’. You live week to week and you don’t really deal with the fact that you have cancer until afterwards, when the treatment finishes and you go into remission.
That’s almost when the second battle begins because that’s when you’re dealing with what’s just happened to you and you’re dealing with the side effects. It’s kind of like a lonely world because no one gets it and everyone thinks you’re okay so they kind of just leave you to it, and you’re like ‘This is when I need the help most’.

Lyndsey Connolly was diagnosed with Hodgkin’s lymphoma in November 2013, at the age of 25. She was in hospital with meningitis when when a chest X-ray revealed the extent of her illness.

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She recalls ‘explaining away’ symptoms such as exhaustion and infections due to the fact she was doing an MA and working at the same time.

“I don’t think you ever think you’re going to be told you have cancer so young.”

At the time she was diagnosed, Lyndsey’s mother Donna had been in remission from breast cancer for two years.

Lyndsey (now 27) is from Blessington in Co Wicklow. She underwent treatment in Tallaght Hospital for about seven months. She had 12 sessions of ABVD chemotherapy and fertility treatment.

Radiation therapy was not suitable as her tumour was so close to her heart.

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“It was really hard, I think I was the poster child for all the bad side effects – every single one of them I got: the hair loss, the sickness, the blood clots – you name it, I was getting it. At one point my doctor said ‘I’ve never seen anyone so sick on this treatment’.”

The pain of chemo is a pain I’ve never experienced before. At one point I just wanted to die because it was so painful. I couldn’t deal with the pain anymore. It was so hard.

At this point she said “flight or flight kicked in”, and she fought.

“I knew I was going to lose my hair. I was very stubborn with my hair because I thought that was the only thing that I could control. There was nothing else I could control so I wanted to do it my way.”

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She shaved her hair off and donated it to the to the Little Princess Trust.

Lyndsey says getting the all clear on 27 June 2014 was “incredible”. However, she has struggled to re-adjust to life after cancer.

It’s like feeling you can breathe for the first time again. You’re holding your breath for so long … but that’s when the second battle begins. Where do you go? You’re changed completely. It’s like you’re broken and you have to pull yourself back together. And it’s when you need people and you need support and it’s not necessarily always there.

“I was tested over the summer and I can’t have children … because I had blood clots throughout my treatment, I’d be a very high risk pregnancy. That was a bit of a blow because I’d always thought that would be okay. It was hard to hear on top of everything else.”

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Lyndsey also has bad nerve damage, noting: “I’m in pain every day but nobody can see that.”

She thinks there needs to be more of a focus on the facilities in place for survivors as more and more people are beating cancer.

“My Daffodil nurse was absolutely incredible the whole way throughout and afterwards. We’d have cancer chats or different chats. If I wanted to scream or cry or laugh it didn’t matter – so she was fantastic for me.”

IMG_0035 Her 10th round of chemo.

Lyndsey knows she was lucky to have received the aftercare she did, as not all people do.

She has helped to set up YouCan Ireland – a support group for people in their 20s and 30s who have undergone or are undergoing cancer treatment.

People just think that because you’re okay you’re going to go back to the way you were before, and you’re not – it changes you completely. I had PTSD when (my treatment) was finished. I just felt like I had nobody because all my friends just disappeared – they thought ‘Oh, you’re okay’ and when you don’t want to do thing that they want to do, they’re like ‘What’s wrong with you?’.
‘Sure you’re grand now, you’re finished your treatment. Your hair has grown back, you’re fine.’ Oh, you want to punch them in the face.

“The best support you can have is someone who can say ‘I’ve walked in your shoes. I understand.’ That’s what you need.”

IMG_6361 Lyndsey today

For anyone that’s going through it, you’re not alone. You can do it even when you think you can’t – just reach out to any of the supports that are there. I want people to know that just because a person’s hair has grown back doesn’t mean that they’re okay. Don’t just abandon them. That’s when you need someone to hold your hand.

Lyndsey works at LauraLynn, Ireland’s children’s hospice.

Gerard’s story

Gerard Ingoldsby was diagnosed with stage 3 bowel cancer in January 2005 at the age of 42.

“I’d been having problems for probably nearly a year-and-a-half before that. I had a full colonoscopy which didn’t find anything, but the symptoms persisted – the bleeding and the discomfort. I suppose I knew something was wrong.”

A second colonoscopy about 18 months later found the cancer.

“I was extremely lucky that it was caught … because I listened to my body.

“They said to me ‘We can fix you but it won’t be easy’, and the treatment was very difficult.”

IMG_6356 Gerard

In order to shrink the tumour, Gerard underwent four weeks of daily radiotherapy, combined with daily chemotherapy during the first and last weeks. Major surgery followed in May 2005 to remove a portion of his bowel. This left him with a temporary stoma and colostomy bag. He then had more chemotherapy for several months before his treatment was complete.

Gerard too noted that the period after he found out he was in remission, in April 2006, was extremely difficult.

That was the time that I really struggled and I didn’t really know what was happening. It was a feeling of impending doom. Eventually I said it to my wife and she said ‘It’s like something awful is going to happen, but it has already happened’.

Gerard (now 52) says he was “totally focused on the physical aspect (of having cancer) and thought ‘If you fix the physical aspect everything will go back to normal’, but I was struggling terribly. I could feel the anxiety. I needed help”.

Gerard is from Tipperary, but lives in Ballincollig in Cork.

His oncology nurse – “one of the angels that I met along the way” – recommended he visit the Cork ARC cancer support centre.

“I can safely say that it was the best thing I ever did, probably the most important thing that I ever did in the whole cancer journey. From the minute I went in there, I could feel the weight start to lift.

“They directed me to all sorts of holistic treatments such as tai chi and meditation. I use some of them still … From there on I haven’t really looked back. Things have not been easy, don’t get me wrong, it was no bed of roses. It’s been a struggle in an awful lot of ways since.”

Gerard says there are a lot of resources out there but many people are not aware of them and it’s “very dependent” on where you live.

He tells us his wife Mary has “been my rock right through”.

Gerard plays the drums, and also finds music to be very therapeutic. He returned to work for a few months after his treatment but had to give it up due to chronic fatigue.

He now volunteers with the Irish Cancer Society’s Survivors Supporting Survivors group, which pairs newly-diagnosed people with others who have had the same cancer and been through the treatment process.

“Being able to give something back has been fantastic,” Gerard notes.

The postcode lottery that’s failing patients

Dr Paul D’Alton is the head of the Department of Psycho-oncology at St Vincent’s University Hospital in Dublin.

He thinks the current support system available to patients isn’t good enough.

“We see people at diagnosis, during their treatment, at surgery, chemotherapy and during their rehabilitation and also at times of relapse and when treatment hasn’t been successful and at end of life.”

One of the things that I’ve learned over the years is the importance of psychological and social support for cancer patients. At the moment we have eight cancer centres in the country and only three of those cancer centres have psychological services.
So there is a huge gap in the care of our patients and it absolutely depends on where you live, there’s kind of a postcode lottery to whether or not you will get psycho-oncology care as part of your cancer treatment. As a result people’s treatment is inferior depending on where you live, and that to me is not good enough … There needs to be standardised care.

Paul says Lyndsey and Gerard’s stories are replicated in the cases of many patients.

3c71305 Dr Paul D’Alton Source: LinkedIn

“Often I refer to it as the post-treatment syndrome … that idea that when people finish their treatment, their active medical treatment, then very often the emotional impact catches up. There’s almost an emotional or psychological hangover.

Treatment, treatment, busy, busy, busy, surrounded by nurses and doctors, and then suddenly it ends. And it’s kind of like all of the emotional experience begins to fall out of the attic at that point and you go ‘Oh my god, what have I been through?’

“One of the things that we can be really proud of in Ireland is the tremendous improvement in treatment and our survival rates are increasing significantly. But one of the problems with that is we’re not providing the care for people who are surviving.

So we’ve created, if you like, 140,000 cancer survivors in the country – but we’re not providing for their rehabilitation, for their reintegration, and they’re very often having to live in a very compromised way because cancer has huge implications for people.

Paul says the upcoming cancer strategy in 2016 “has to, as a matter of urgency and a matter of priority, provide services to the people who are surviving”.

“We’re making them well, but we’re not providing care.”

The Living Well With Cancer Conference continues at the Aviva Stadium in Dublin today. More information on the Irish Cancer Society can be found on its website.

Read: Louise McSharry said F**k Cancer – and so did a lot of other people

Read: ‘My family and I have had many conversations about my impending death’

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Órla Ryan

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