As its funds have dipped to a ‘critically low’ level during lockdown, Cancer Focus NI has issued an urgent appeal for help. Here, Marie Foy finds out about some of the important work it’s been doing despite coronavirus restrictions.
Bangor dad Richard Irwin (50) lost his wife Joanne (48), a teacher at Grange Primary School, to cancer last November. The couple have three children, Scott (20), Ben (17) and Rachel (12). Richard says:
Joanne was diagnosed with cancer of the bile duct in the liver just over a year ago. She had been complaining of a dry mouth for a couple of weeks but didn't think a huge amount about it. She went to the doctor and had some blood tests. She got a call the next morning to go to A&E which rang alarm bells. She was taken into hospital over the weekend and had more tests and was told she had one of the more rare types of cancer. It came absolutely out of the blue.
It was pretty rough news to take in, how someone so fun and healthy and loved could suddenly have a disease that was incurable. We hoped that with new developments and treatment she would still have years but more tests revealed that the cancer had spread to her bones and lungs. She was already at stage 5.
From July onwards she was in and out of hospital as she had to be on a drip to regulate her calcium levels. She lost a couple of stone in weight and eventually wasn't strong enough to have more chemotherapy. That was a real kick for us all but she was a fighter and wasn't going easily.
The cancer spread to her neck and it became painful for her to sit up and she gradually deteriorated. We knew things were very serious when she came home in early November but she was able to spend time peacefully with her family and friends before she passed away on the 20th.
Of course, it has been very difficult for the family, you just want to protect your children and wrap them in cotton wool. It is difficult to know what they are going through at times.
Before Joanne died, Rachel Smith from Cancer Focus NI came to our home and spoke to me. My main concern was how and what could I tell my daughter Rachel. The boys, being older, understood a bit more but it's difficult to know what they are going through at times and to know if they have the vocabulary and maturity to express themselves.
Rachel (Smith) and I had an excellent conversation. I'd spoken to a few different professionals but I felt an immediate connection with Rachel. She knew exactly what I was talking about. You can sit down and tell her exactly what you're thinking and ask the hard questions. She was very, very clear with her advice. Thanks to her, I spoke to all three kids individually that night, and I'm so glad I did. They have coped extremely well with everything.
Up until then I think I was operating on automatic pilot, just dealing with stuff without thinking. I had a number of conversations with Rachel (Smith) and she invited us to a family night at Cancer Focus NI in the new year, which we got a lot from. It was good for my three to be able to speak to other kids in the same situation. You know they get it.
Unfortunately, meetings were hit on the head with lockdown. Rachel has held Zoom meetings with teenagers but my kids hadn't had time to form new friendships so were a bit wary of that. However Rachel (Smith) and I kept in touch with other parents weekly via Zoom and my daughter Rachel crashes in on them occasionally.
We get to chat about various things. Sometimes it gets quite emotional and sometimes we just have a bit of a laugh. We've formed some good friendships, which I've found really supportive.
Rachel then suggested we do some writing - she would send emails each day with a poem or quotes and we took 20 minutes to write down our thoughts. I'm not really a writer and thought I would struggle but didn't at all. It was very good. It's easier to write stuff down and then bring it up in a group conversation.
You can be totally and brutally honest. Sometimes your emotions aren't that nice and you think you shouldn't be feeling in a certain way. We have a private Facebook page where we can share these thoughts, if we want to. It's very helpful reading other people's words and to realise you are not alone. It's reassuring to know that what you are feeling is quite normal and to have people who get it to bounce your thoughts off.
I'm so glad I had that service to fall back on, especially during lockdown when you might not be as in touch with other people as you normally would. One week I could be a car crash and not in a good place. The next I'd be feeling much better. Cancer Focus NI was there for me during the bad weeks and in the better ones. And I like to think I might have been able to help some of my new friends as much as they've helped me."
Ex-smoker Leigh Mallon (32) is a project manager for a software company and lives in north Belfast with her partner Fionn McGlinchey and their dogs Rosie and Poppy. Leigh had just started a Cancer Focus NI stop smoking clinic when lockdown happened. She says:
I've been smoking since I was about 21. I'd tried a few times as a teenager but didn't like it at all. I became friends with a few smokers and when they went into the garden for a cigarette I didn't want to be left behind. So I started with an occasional cigarette to be sociable and gradually increased the number.
I was never a big smoker. If I'd had a really stressful day I'd have eight or nine but more usually it was five or six a day. I still wanted to stop though and have had a few unsuccessful attempts. During one attempt I broke my leg so that was me back on them.
When Covid-19 arrived I decided that this would be the time to give up for good. A nurse at the Shore Road Surgery told me about the Cancer Focus NI stop smoking clinic held there. I was just in time for my initial consultation with the stop smoking specialist Allison before lockdown.
Instead of face to face meetings, Allison rang me every Tuesday to give me advice and just check up on me. She was always very encouraging and supportive, and reminded me of the money I was saving and of the health benefits and it stuck with me.
I found that I didn't want to let her down by giving in. That one call a week was enough to keep me on track.
I was on Champix tablets which help relieve the cravings and withdrawal symptoms, which was a great help. It also helped that I wasn't going out for a drink or two, which is when I'd be tempted to smoke, and I wasn't at the shops as often so couldn't buy cigarettes. I found it hard at the start but soon adapted to my new routine working from home.
Lockdown turned out to be a good time for me to quit although I would have struggled a lot more without the expert advice, support and motivation from Cancer Focus NI.
I'm very glad that I had the option of phone support and it was an excellent way for the charity to keep in touch with people."
Retired health service trainer Issy McManus (59) lives in south Belfast and has a grown-up daughter, Nuala. She joined the Cancer Focus NI Sing for Life choir after her husband Johnny died of a rare form of cancer, and says:
I was encouraged to join the choir by a friend who was already a member. When Johnny passed away 10 years ago it was devastating, very hard. My daughter had just started grammar school but we had to just keep going. I wish I had known about the choir sooner as I love singing but it might have been too raw for me to join then anyway.
Before I joined I wasn't sure it was really for me but I couldn't have been more wrong. I love it. It is an amazing lifeline.
I've met so many diverse people, made many friends and can talk to people who more recently find themselves in a similar situation to me. I think it is helpful to them to see that you can come through this. It is a fantastic social night out, I would come out of practice grinning from ear to ear. And standing up to perform at events is fabulous (though you don't have to take part if you'd rather not).
The choir stopped very quickly when the pandemic started as some of the members are vulnerable cancer patients. It left a big void in my life. I have rheumatoid arthritis and am shielding so I really missed the company.
I am very sociable and love to chat. When I heard the choir rehearsals were starting up again on Zoom I was delighted, like a child in a sweetie shop. It's lovely to see everyone's face again, to say hello and have a bit of craic. It's a surreal situation that we're in.
You do become concerned about those around you. It's lovely to see familiar faces each week and know that they are okay. They become part of your life. It's like a family that you belong to.
Fortunately, I have met an amazing man, something I never thought would happen, and we were married just before lockdown."
To find out more about the choir visit www. cancerfocusni.org/patient-support/groups-activities-cancer-focus-ni
Over the past months, Cancer Focus Northern Ireland has been doing its best to play its part to help the most vulnerable by remotely supporting those affected by cancer.
In a normal year, Cancer Focus NI supports 6,000 cancer patients, their families and carers across Northern Ireland. Due to Covid-19, however, the local charity was forced to put face-to-face contact on hold. But throughout the pandemic it has been providing - albeit in a greatly reduced manner - counselling and family support services to as many people as possible via phone, video and Facebook support groups.
The charity also plays a huge role in cancer prevention. It has continued its stop smoking service, at a reduced level, and its ever-popular Sing for Life choir recently began rehearsing again via Zoom.
Cancer Focus NI chief executive Roisin Foster said: "Our hearts go out to people who are trying to cope with the anxiety of coronavirus on top of dealing with a cancer diagnosis and the impact of treatment. Sadly cancer has not disappeared. We know there is a new wave of patients facing late diagnosis and more complex treatment going forward. The need for services like ours is greater than ever."
The charity is desperately worried that it will not survive and is appealing to everyone to make a donation today to help keep its doors open.
Roisin added: "Our income has plummeted to a critically low level and we fear we might not be here to continue to support thousands of people at one of the toughest times of their lives.
"We urgently need your help and we're appealing to everyone to make a donation or hold a social distanced fundraising event to save our services. Your support at this incredibly difficult time is extremely valuable and greatly appreciated. We can't do it without you."
You can support Cancer Focus NI by making a donation today on cancerfocusni.org/appeal, text FOCUS to 70660 to donate £5 or text FOCUS £10 to 70660 to donate £10, or visit cancerfocusni.org/events