A Priceless Gift

While radiotherapy treatment in itself is not too bad for many patients, it is often given after weeks of chemotherapy, when patients are exhausted and their energy levels depleted. Finding the reserves to start into several weeks of daily sessions, 5 days a week, therefore is daunting. If on top of that you have to travel to University Hospital Galway (UHG) each day for the treatment it is even more overwhelming. So the opportunity to stay right beside the hospital each week, in a place that provides everything you need, as well as a full oncology nursing service, is a precious gift. Cancer Care West provides this gift to 320 patients a year at Inis Aoibhinn, our residential lodge at UHG.

One of our patients, Maureen Healy, describes what it means to her.

“I am staying at Inis Aoibhinn for 5 weeks during my radiotherapy treatment. I have my own en-suite room, which has become a home from home, and my meals are all provided. I can walk over and back to the hospital each day and if I have any concerns the staff are wonderfully kind and helpful. All this means I am able to rest so much more while here so I am coping with my treatment really well. Then when we heard about the Cancer Care West bus, which takes patients to and from Mayo to Inis Aoibhinn, it was like another gift from Heaven for me and my family. I get dropped to the bus in Ballina on Monday morning and it takes me back to Ballina again after my Friday session. No one worries about me during the week as I am well looked after by the wonderful staff at the Lodge. Sean the bus driver is so kind and he makes sure the journey is comfortable and safe. I get all of this for free but really it’s priceless and my family and I are truly grateful.”

 

Good Luck and Good Judgement

A huge factor in the likelihood of a positive outcome following a cancer diagnosis is early detection. Given that many cancers are initially symptomless, early detection can often be more luck than judgement. As was the case for Lorraine Cuffe when she took her new baby girl, Leah, for her 6 week check up in October 2020. While with the GP Lorraine mentioned an itchy patch on her breast, thinking it had something to do with the recent birth. Her GP wasn’t too concerned but took the precaution of sending Lorraine for a mammogram. The test showed something was not right so Lorraine had further tests which confirmed it was cancer but it had not spread. The treatment would be a course of radiotherapy but no chemotherapy would be required. As well as baby Leah, Lorraine also has three young boys at home so, even though it was cancer, she was immensely relieved with this diagnosis as this could possibly be undertaken without the boys even knowing what was happening. However, a technician in the lab was not comfortable with the initial result and did some further tests on the sample. Following this Lorraine then got the news that the cancer was a type known as HER2-positive and she would need to do a course of chemotherapy.

Facing into the grueling regime was very difficult but Lorraine found the inner strength from somewhere. With energetic little boys ages 10, 8 and 6, as well as a new born, she says it was her support network, headed up by her husband John and some good friends, that got her through it. The most traumatic incident for the family was the loss of her hair but soon she and the boys got used even to that and life continued as normal as possible. Luckily Leah was a placid little baby who fed and slept well so even though home schooling arrived on top of all this they all got through it together!

Post her chemo Lorraine came to Inis Aoibhinn, Cancer Care West’s residential facility for radiotherapy patients. It’s fair to say that by this time she was at a low point. As the radiotherapy treatment is given daily 5 days per week over a number of weeks Lorraine needed to stay Monday to Friday at the facility. While it was hard being away from the family, Inis Aoibhinn provided an important break for Lorraine from everyday life. Lorraine explains “When I started radiotherapy I felt I could see light at the end of the tunnel. However I was so exhausted I wasn’t sure I had the physical reserves to get through it. This is why the care I received at Inis Aoibhinn was so important to me. I could relax in my own room after my treatment every day. Everything was provided and if I did need anything I only had to ask. When I went home each Friday I was happy to see the children and be “Mammy” for them. Yes it was hard being parted from them, but I quickly learned that it was the best possible thing for everybody. I was so grateful that this was available to me at such a difficult time in my life.”

Lorraine’s cancer could so easily have gone undetected except that she mentioned the itchy patch, her GP didn’t dismiss it and the lab technician was diligent in their work. As a result, her outcome and prognosis are extremely positive. As she and the boys say a little prayer each night Lorraine thinks about what could have been and knows overall she was lucky. Her final reflection though is that it’s not just down to luck you also have to make the call to watch for symptoms, report them and do the follow up. It is Good Luck and Good Judgement.

 

Just When You Think It’s All Over

Most people are familiar with the basic routine of cancer treatment. It’s a tough regime, regardless of the format and severity of treatment, so the end of treatment is a momentous day and thanks to advances in cancer treatment it is often seen as the day a patient can press the re-start button and begin getting on with their lives again. However, this is often not nearly as easy as people think, so while family and friends and oncology teams see the patient in recovery and doing well, the patients themselves are often struggling to cope with the aftereffects of the regime and the build-up of toxins in their system.

Vera McKeon talks of her experience with breast cancer with this very point in mind. “I was diagnosed with Her2 positive breast cancer in 2018. As a nurse myself I was familiar with what would come and made up my mind very early on that I would take this head-on and work my way through it in as positive and confident a manner as possible. I employed every trick in the book to keep my positivity going, even dressing in the brightest colours with full make-up on to attend appointments and the treatments! Finally, the last day arrived, we celebrated quietly. It was over, my chances of it returning were very low and now I could get on with “normal” life.”

However for Vera and for most other patients the end of treatment is not the end of the challenges of cancer. Over the next few months Vera tried hard to return to her normal routines, taking daily walks and each day trying to do a little more than the day before. It wasn’t working. “The fatigue was so debilitating I could not manage even the small everyday tasks and over the course of 2019 and into 2020 this really started to affect my mental health and my life in general. I was so frustrated that just when I should be having a massive pick-up in my energy and activity and living life even more to the full than before, I was actually spending hours every day resting after short walks or light tasks. This was compounded by disturbed sleeping patterns which left me more fatigued and further eroded my ability to break this pattern.”

Having reached a point where she didn’t really know who to turn to, especially as this was during the COVID pandemic, Vera phoned the Irish Cancer Society who, together with the National Cancer Control Programme(NCCP) and Cancer Care West, had formed “Together For Cancer Concern” a network of support services which operates nationally offering online and telephone support for cancer patients throughout Ireland. Vera’s call was relayed to Cancer Care West who were offering Psycho-Oncology counselling to cancer patients and their families. Vera was duly contacted by Cancer Care West and started counselling with Dr. Cathy O’ Sullivan.

“It really was like the beginning of the beginning again” Vera remembers. “Through my sessions with Cathy I developed a much clearer perspective on what I had and was still going through. I began to understand that I was putting too much pressure on myself and setting my expectations too high. The road to recovery was not short, straight or easy. I don’t think I was really prepared for that in the same way I was prepared for the actual treatment.” Vera also started sessions with Emma Houlihan, a physiotherapist at Cancer Care West, who specialises in cancer rehabilitation physiotherapy. “Again it was like a lightbulb moment for me. Emma explained that I was trying to do too much too soon. This was causing me to constantly go beyond what my body could cope with and causing me to regress instead of progress. Through Emma’s guidance I developed a programme of exercise that worked for me and slowly but surely I built up my resilience and stamina until I was finally taking my much loved long walks followed by quality time with my family. The final element of my recovery programme was my Yoga sessions with Pauline, also at Cancer Care West, which helped to restore my spirit, another often overlooked aspect of cancer rehabilitation.”

Vera is now in a much better place in her life. Her energy has returned and her daily routine is pretty much back to normal. She is anxious though that others in her situation may learn from her experience. “My advice to anyone in my situation is as follows: The effects of cancer do not end with treatment; getting the right support is key to learning how to move forward; wonderful support like I got at Cancer Care West is available and is free but you must find it and avail of it; do what they tell you to do because it works; don’t be too hard on yourself as you cannot improve in leaps and bounds but with baby steps and small wins.” And a final word “Thank you Cancer Care West for supporting me on the final stages of my cancer journey. I could not have done it alone.”

Receiving a cancer diagnosis is probably one of the most difficult incidents any one will face in their lives. It is particularly cruel when it comes after one of the happiest times in your life, the birth of your first child. For Sharon McClean this became a reality in October 2020 when she was diagnosed with breast cancer a year after welcoming baby Zoe into her family. At only 46 Sharon could not imagine that the few symptoms she had could be cancer, indeed she attributed most of them to the ups and downs of life as a new mother. The resulting shock was enormous.

Life quickly became a whirlwind of tests, results, procedures and treatment plans. The medical side of dealing with breast cancer in Ireland is hugely advanced and works extremely well, even during COVID-19. Sharon was brave and strong and went into it all with energy and determination, not least because she had a beautiful little girl at home who just wanted her mammy. While physically Sharon was coping well with her chemotherapy at Letterkenny University Hospital, the psychological effects of her diagnosis were starting to show and her oncology team recognised them and recommended she attend Psycho-Oncology counselling. Sharon reached out to Cancer Care West in Letterkenny and was offered counselling with Dr. John Donohue a Senior Clinical Psychologist.

As Sharon looks back at those first few weeks she says “At first I was not sure what this was all about and how it would help. John was very quiet and let me do most of the talking. While I am quiet good at that I didn’t know if it was getting me anywhere”. Soon however the benefits of these chats with John became very apparent. She describes it as “having a place where you can name your worst fears out loud and not scare someone to death. I could talk about seeing my own grave and then once the words were said it stopped being so horrifying and I could start to mentally deal with what was happening to me.”

Despite the fact that Sharon never met John initially, due to COVID-19 restrictions, the remote counselling was a huge benefit to her and really helped her to move into a better place mentally. Then as she finished her chemo she also signed up to sessions with Emma Houlihan a Cancer Rehabilitation Physiotherapist with Cancer Care West. Emma is helping Sharon manage her physical rehabilitation so she understands her body’s needs and works within her limits while slowly working back to the full-on life she had and will soon have again.

Sharon is now approaching the end of her radiotherapy treatment. Her hair is already growing back and she is feeling much better and stronger as she starts contemplating the future. “I believe that I am mentally and physically stronger post my diagnosis, thanks to the wonderful support I received at Cancer Care West. John and Emma have helped me understand my new reality and to deal with it, positively and constructively, so I am in a great place to move on now.” Her husband and her rock, Gregor, and baby Zoe are thrilled to see the wonderful wife and mother that Sharon is, prepare to take on the world again. We at Cancer Care West are looking forward to meeting Sharon in person, post COVID-19, and meantime we wish her well as she once again embraces life to the full.

It’s never too soon to check.

The statistics on breast cancer rates are frightening as, in Ireland, one in nine women will be diagnosed with the disease at some time in their life. The good news is that 4 out of 5 women with the disease will survive and continue to live long and productive lives. One startling figure however is that, of the 3,700 women who will receive a breast cancer diagnosis this year, over 1,000 of them will be under the age of 50. As BreastCheck Ireland starts screening women from the age of 50 this means these women are only diagnosed when they are symptomatic, often leading to poorer outcomes, unless they have been vigilant and found early evidence of abnormality themselves.

If you are a 44 year old, healthy and fit vegetarian, who rarely drinks alcohol and has never smoked, you might think your need to be vigilant is not so important. After all you are doing all the right things to keep yourself healthy, how likely is it that it will happen to you? Well as Anna Kasperowicz can tell you – it can happen to anyone. “Even though no one in my family, either on my mother’s or father’s side, had cancer, my mother always insisted that I was vigilant about checking myself every month. Thanks to her it became a habit in my life so even through I was keeping all the risk factors low I did it every month, just in case. In September 2020 Anna found a lump. She waited another month of her cycle to make sure it wasn’t a temporary swelling before going to the doctor. As it was during COVID and GP’s surgeries were busy Anna contacted her gynaecologist in Dublin, within a week she had her diagnosis – Stage 1, Grade 1 breast cancer.

Of course it was a huge shock. “When something like this happens to you it’s very hard to take in. At this time you see professors, oncologists, doctors and nurses and you receive so much information. While I have lived in Ireland for 16 years now and my English is very good I found it hard to understand and remember everything they said. It was a very anxious and confusing time for me and my husband Janusz. Everyone was so kind and supportive through. Professor Keane in Galway told me that, because I had found it early, he was sure the follow-on tests and results would all be good. He and I were both delighted when he was right!”

Thanks to her vigilance Anna’s cancer was found early, removed quickly and treatment could be kept to radiotherapy and hormone therapy only i.e. no need for chemotherapy. Anna attended University Hospital Galway for her radiotherapy. As she lives in Sligo and the radiotherapy sessions took place daily over 4 weeks, she stayed at Inis Aoibhinn, the lodge owned and run by Cancer Care West on the hospital grounds. Richard Keane, an oncology nurse at the lodge, said “We look after a number of young women with breast cancer here every year. For many the prognosis and treatment is much more difficult as the cancer is more advanced when found. Thankfully Anna was aware of what she should do and conscientious about doing it. As a result her treatment was brief and less invasive and it wasn’t long before she was ringing the ‘End of Treatment’ bell. Even through her treatment followed COVID guidelines and was interrupted by the cyber attack on the HSE, she was such a positive and happy person to be around. We will miss her here but are thrilled to see her get back to her daily life.”

Now Anna is looking forward to when she can travel back to Poland to hug her mother and thank her. It was through her insistence that Anna developed the routine habit of checking her breasts regularly and ultimately this was to lead to such a great outcome. Anna, Janusz and their son Patrick are looking forward now but Anna wants to spread the word “No matter who you are and what your lifestyle, know the symptoms and check yourself regularly”.

 

Gone Fishing

A story all too familiar. Peter Biddulph was a reasonably fit and healthy man in his 60’s. He was working with his GP to keep his type 2 diabetes in check so his diet was restricted but otherwise he had no health issues. He was leading a near perfect life – working 3 days a week at his dream job in the Galway Aquarium and spending quality time with his wife, Marie-Noelle at their home in Clifden, Galway. When Peter first noticed some digestive problems he put it down to his new diet but as the symptoms grew he realised that all was not normal. He went to his GP and over the course of a few months, he underwent some tests. Meantime the symptoms worsened so by the time Peter went for an MRI and colonoscopy he suspected that something serious was happening. In the end hearing the diagnosis of colorectal cancer was a huge shock but maybe not such a huge surprise.

Peter remembers the moment well “you are going along fine with life and then you get a sudden reality check – you are mortal and the man above is watching you”. A master carpet designer, who designed carpets for the Dáil, Peter uses an apt phrase “The rug was well and truly pulled from under me”. However Peter goes on to say that what happens next is probably less traumatic than you might expect. “Everyone in the system is so incredibly kind and caring. I put myself in their hands and am following their treatment plan and just getting on with it now. It’s a mixture of oral chemo and radiotherapy currently, with chemo via infusion to come, followed by surgery”. None of it is pleasant but Peter is taking it all in his quiet, unassuming way. Above all he is grateful for the wonderful support he is receiving from the oncology professionals who are looking after him throughout his cancer journey.

Among the various supports Peter is availing of is the offer of accommodation at Inis Aoibhinn, Cancer Care West’s lodge at University Hospital Galway (UCH). Peter stays at our lodge Monday to Friday while undergoing daily radiotherapy. Recently in their effort to catch up on treatment schedules delayed by the cyberattack, UCH radiotherapy has been operating over the weekend too and Inis Aoibhinn has also opened its doors on the weekends with Peter staying a few Saturdays as well. “It’s a fantastic place to be able to come to each week. The nurses and carers are beyond kind. Two of my sons live in Galway so can visit me (under COVID restrictions) and my colleagues from the Galway Aquarium have been so fantastic dropping over and picking me up in the van and taking me to visit the fish – one of the great passions of my life”.

The staff at Inis Aoibhinn, like Peter’s colleagues and family, admire his quiet way of getting on with what life has thrown at him recently. His down-to-earth manner belies the severity of his condition but his grace and humour shine through it all. Day by day he is getting on with his treatments and we hope that very soon he is back to his “paid hobby” with the fish and back to his normal life with Marie-Noelle in the heart of Connemara. Meantime it has been a privilege to have Peter in our care at Inis Aoibhinn.

Cancer Care West – Donegal Support Centre

I am a service user of Cancer Care West since summer 2017 since going through my chemotherapy treatment and surgery. From January 2017 to August 2017 and before I had my radiation treatment, I realised I needed extra support to recover from my diagnoses of breast cancer. I attended a counsellor in the Cancer Care West’s support centre in Letterkenny and she was very good at helping me cope with everything going on. I had a good network of family and friend’s but sessions with the counsellor helped me deal with everything at my own pace. I also used the centre for manual lymphatic drainage. This is a great service as there are very few practitioners in Donegal. When I finished my cancer treatment, I took part in a mindfulness course. Here I met a lovely bunch of people and we still meet on an ongoing basis. We all have CCW’s support centre as our link. The Support centre also provides yoga and reflexology for users both of which I have availed of. But for me the centre means more than a place to go for treatments. It has a lovely feel to it and you just feel better after a visit and a cup of tea there. I was re diagnosed this year and the centre was my first stop off point to help me get my head around the news. Cancer is growing in our society and places like Cancer Care West’s centre is vital for any patient or survivors and their families.

Letterkenny and Co Donegal are blessed to have these services available which are free to all who use them and are funded by donations.

Home Away From Home 

 

Eugene Mullen from Easkey in County Mayo was delighted to finish his eight week course of radiotherapy for prostate cancer. Thankfully it all went to plan and Eugene is doing well with little or no side effects. As Eugene’s treatment was delivered every day from Monday to Friday he needed to stay near University Hospital in Galway where he would receive his treatment. He and his wife Ruby were delighted therefore when we were able to offer them accommodation at Inis Aoibhinn, our lodge run by Cancer Care West on the grounds of the hospital.   

Ruby was especially happy to be able to stay over with Eugene throughout the eight weeks. She describes the accommodation in Inis Aoibhinn as “beyond expectations” going on to say “the food was first class, the beds so comfortable and the staff couldn’t do enough for us.”   

To avoid having to ask family or friends to bring them to and from Inis Aoibhinn every week Eugene and Ruby travelled on the Cancer Care West bus from Ballina to the lodge on Monday mornings and back to Ballina on Friday afternoon. Ruby tells how delighted they were with this service also “It was a straight run to and from, with no stops, and we could be home in two hours on a Friday evening without disturbing anyone. To have all of this provided for free and with it to be shown such kindness and support was really marvellous.” 

Here at Inis Aoibhinn we were glad to be able to help this lovely couple and thrilled that Eugene is now finished his treatment and doing good. We wish them well as they board the Mayo bus for one last journey home but hope to see them again for a catch-up chat in the not too distant future.  

With a little help from Bluebird 

 

Dealing with a cancer diagnosis and all that goes with it is never easy but for Terry Jackson it is especially hard as he is wheelchair bound and has few family close by to support him through this time. When the time came to do his radiotherapy treatment Terry was worried about how he would get to and from Athlone to University Hospital Galway every day for the treatment. It was such a relief therefore when he was offered a place at Inis Aoibhinn, Cancer Care West’s facility at the hospital. The facility offers free lodging and meals to radiotherapy patients for the duration of their treatment allowing them to stay over near the hospital from Monday to Friday each week.  

Terry found the service above and beyond what he ever imagined it would be. “I was so comfortable at the lodge and everything was done for me so I didn’t have to worry about a single thing. On top of having all of this made available for me I also had access to a  service from Bluebird Care whereby someone came every day to accompany me to my treatment at the hospital. As a result, what I had feared would be such a difficult time to get organised and get through was actually a really good experience.”  Terry says that it was his daughter who had heard about Bluebird and was delighted when they confirmed they could offer this service. “It was such a relief for her that I was so well looked after, as she too could relax and not worry about me.”  

Terry completed a six week radiotherapy program and is now back in his home in Athlone. He remains very grateful for all the help he has received during this time and is clearly delighted with how lovely all the people were to him.  

In memory of Nanny Mary

While Christmas 2020 was a difficult one for everyone, it was especially difficult for the Killeen family from Kiltullagh, Co. Galway. Their beloved Nanny Mary was taken to hospital in London, where she lived, and soon after she passed away leaving her husband Seán bereft and lonely. As it was during the COVID-19 crisis, Seán’s son John and his family in Ireland could not travel to be with him as he grieved for his beloved partner of 63 years. His then 16-year-old grandson, Philip, was especially upset to see his grandad so distressed and he was longing to do something for him that might bring a bit of light and cheer into his life again.

Over the next few weeks Philip worked on various ideas about how to reach out to Seán across the miles until finally settling on a virtual cycle to see his grandad. Philip worked out that it was 775km from Kiltullagh to South London so he created a chart that marked off the kilometres in 10km sections – 77 and a half of them. Calling grandad Seán he told him “I’m coming to see you grandad on my bike! It might take a while but I will get there.’  Philip knew that this gesture would mean a huge amount to Seán but he decided to take it a step further and make it mean a huge amount to others too. So he set up a GoFundMe page called ‘Cycling for My Nanny’ and added ‘and Cancer Awareness’ and chose Cancer Care West to be the beneficiary of the funds raised. His target was €1 for each kilometre – so €775 in all.

Starting on Sunday the 10^th January, Philip hit the roads around Kiltullagh, crossing off the kilometres covered each day on his chart. Day after day, in rain, wind and occasionally some Winter sun, Philip got further and further from home and closer to his grandad. When the weather turned too bad he turned to Raheen Woods Gym in Athenry and asked for the loan of a stationary bicycle which they gladly donated. Philip continued to grind out the miles.

While Philip was doing all the hard labour his sister, Layla, decided to throw her energy into helping him but more wisely maybe did it from the comfort of home and on her laptop. Layla composed an email, detailing Philip’s efforts and sent it around to various news outlets and online forums. Soon Philip’s efforts got some attention and the coverage flowed in. Two of the highlights were when Eleanor Mannion of RTÉ interviewed Philip, Layla and Séan over Zoom and posted a lovely video of them online with an article detailing Philip’s challenge and when Jennifer Zamparelli on 2fm also interviewed Philip on her morning show.

For most of January and all of February and March Philip stuck to his commitment, cycling every day and making regular calls to Seán updating him on his progress. As all of this was done within the 5km COVID-19 restrictions limit it has to have taken a special dedication to grind through the daily cycles.  Finally at the beginning of April the end was in sight as on Monday April 5^th Philip virtually reached Barriedale, London – the home of his grandad.

At Cancer Care West we think Philip is an exceptional young man with a big heart. His challenge highlights how much can be achieved within a 5km limit, with very little support and with just your family in Kiltullagh and London to cheer you on every day. Philip also credits the wonderful support he received online through his Instagram diary and Facebook page. ‘Such kind and supportive messages really helped me to keep going.’ We are delighted that Philip did keep going and we are very grateful for the funds he raised as the initial €750 target was blown out of the water as the funds received topped €5,000!

Our thanks to Philip, Layla, Seán and the Killeen family. We know that Nanny Mary is looking on with such pride and there is no doubt that her spirit lives on in the amazing bond she and Seán have with their grandchildren.