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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.
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.
“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.”
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.”
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.”
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.”
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 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.”
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.
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.
“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.
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He deffo needs to set himself aside from the torys on this or he will be sent to the waste bin also
@JG: he’s appealing to the uk public. They don’t like strikes or union leaders and politicians on picket lines waving copies of socialist worker about. Its why Corbyn lost in a landslide.
@Tom Quin: Every poll on the rail workers strikes had the public in support of them.
I take it back a YouGov poll didn’t. Savanta Comes poll of 2,300 58% of the people questioned said the strikes are justified, with 34% deeming them unjustified.
@FiannaFáilness FineGaelness: No it doesn’t.
@FiannaFáilness FineGaelness: The only ones showing support I can find are the ones carried by or for the RMT. No suprises there.
@Tom Quin: The Savanta ComRes poll wasn’t Carrie out for the RMT. Its funny how we only see what we want to see isn’t it Tom?
@FiannaFáilness FineGaelness: It must be the only one then, an outlier. An online one rigged by activists probably.
@Tom Quin: The IPSOS one was equal support at 35% to opposition at 35%. Doesn’t show the British public detesting unions. The only reason the Tories do so well is because the Brits use FPTP elections. It’s well established UK Labour would come out on top with PR voting. So no the British people don’t hate the left.
@FiannaFáilness FineGaelness:
Keeping in mind that, despite the name, YouGov is a private polling company founded by a conservative party member who is now a conservative party MP.
@David Bourke: Absolutely, good point that!
They sabotaged their party from within with their revolt on Corbyn. It’s no wonder they’re a bit lost for direction these days when they promoted a fence sitter to party leader.
@Rochelle: With FPTP electoral system and a very hostile media, Corbyn was never going to get in.
@Rochelle: Corbyn handed the Conservatives their biggest majority in donkeys years. He let Boris off the hook when he was suffocating to death through the pressure of brexit and a minority government. Corbyn showed the worst judgement of any leader in modern history when he agreed to that election. He then bombed out un the election campaign. He will be remembered as one of the worst Labour leaders in history. His decisions, scandals and his unprecedented unnecessary election defeat will ensure that.
@Rochelle: Corbyn lost to a Tory landslide, the uk public do not want left wingers. Starmer is trying to win an election in the real world.
@Tim Dawson: Corbyn was utterly railroaded by the media.. Even the BBC photoshopped a Russian style hat onto him on their backgrounds. He was absolutely hounded out of his position. The recent report shows how much the New Labour (Blairite) side of the party and the NEC completely shoehorned him. 100′s of thousands of people joined the Labour Party because Corbyn was the leader and the NEC screwed that membership over.
@Tom Quin: The UK public are too easily led by their right wing media barons.
@FiannaFáilness FineGaelness: the british public have only ever once voted for a socialist government that was after ww2. The media did not give Boris that huge landslide.
@FiannaFáilness FineGaelness: that’s very, very weak. you thinking the uk public are so thick because they did not vote for the guy you wanted them too is the sort of arrogance that switches people off the left.
@Tim Dawson: To be fair he didn’t get the support of the higher up’s in the labour party,the papers were all against him,his own wanted him to fail,he was elected by the people on the ground in the labour party,not saying he was perfect but he never had a chance,look at the head of labour now.
@Tom Quin: They voted for to leave the EU,yes they have a huge amount of badly informed people that believe lies and think the empire is still alive.
@Daniel Roche: No they just voted the way you didn’t like. It’s not a crime to leave the EU.
@Tom Quin: Who said it was a crime? Clearly you’re just a troll.
@Tim Dawson:
I’d love to hear about the Corbyn scandals. Please provide the details
@FiannaFáilness FineGaelness: So people who disagree with you are not just thick and gullible but also trolls?
Forgetting that working conditions would still be in the dark ages if it wasn’t for Unions. This isn’t simply a matter of one mp not abiding by party protocols, starmer has been on the fence all along. His fear of the electorate and the right wing press could be considered cautious and prudent but not at the cost of handing everything to the Tories on a plate. Surely it is easy enough for him to highlight that transport issues are created initially by the govt and not by the unions?
@alan: the brit public do not support unions and lefties like Corbyn. Starmer needs to win them over to get the Tories out and going full on Corbyn will give tories another landslide.
Starmer must’ve thought, the Tories are ripping themselves apart with this leadership contest, we can do better than them!
Labour party for the working class there’s a joke
If I understand it correctly, he wasn’t sacked for supporting the strikers, but rather because he said it was Labour policy to advocate for a pay rise in line with inflation. Which would a) would make no economic sense – increasing wages in line with inflation will only lead to further inflation, and b) clearly would be a major policy proposal, and as such if someone just says it is the party position when it isn’t, that person should be sacked. Such a proposal is ludicrous, and would just give the Torries the chance to portray Labour as some kind of looney left part that would end up bankrupting Britain, hurting small business owners, etc. etc. Right now, Labour just need to sit back and quiet while the Torries destroy themselves.
Always the same with Labour, when the Tories are on the ropes they proceed to shoot themselves in both feet. Fairly much unelectable as they’re perceived as differing factions all adopting opposing views. Should just split into three different parties and be done with it.
Starmer did the correct thing to sack him. What are all these whingers going on about?
Shouldn’t Labour ya know, be on the side of workers. I’m guessing that day has long since past since Tony Blair and ‘new Labour’. Moderate Tories in disguise
Unable to govern themselves anymore over there…Maybe we should tie in with India and jointly go in to save(colonise) them and restore good governance … ;)
Bye bye Keir
Like our own labour party. Labour supposed to be pro worker.
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