Clocking Up The Miles 

The Story Of Edward McDaid

No matter who you are or when it happens if you hear a doctor say the word cancer it is an incredible shock. Very suddenly everything is turned on its head as you try to get to grips with what cancer you have, what stage it is at, what options you have, the next steps, where do you go from here and a million more questions come to mind. Add into that the negative impact of COVID on the HSE’s cancer programme and even more perversely the ramifications of a Cyber attack on their computer systems and Edward McDaid describes an incredibly difficult first few months trying to get to grips with his prostate cancer diagnosis and getting his treatment plan started. Thankfully he finally started his treatment in November 2021 and once in the system his experience really improved as over the next twelve months he completed his radiotherapy treatment and moved onto oral chemotherapy. Managing his treatment, and the side effects, has been a fulltime job but Edward is incredibly positive about his situation and tries always to see the lighter side of everything especially when he tells his young grandchildren how his tablets can help him sing and dance better.

But cancer is an insidious disease says Edward. Mostly you cannot see it, touch it or even feel it and there you are going about your daily life thinking all is good but all the time it’s there inside you. The physical side of the disease is what you immediately deal with, getting on with getting it under control. At this stage the psychological side of what is happening is often much less of a worry. Edward didn’t even think he needed to look for help with this aspect of his disease. “I am not the kind of person who has ever considered doing counselling. I am a reasonably successful business man and I have always been very much in control of my life, planning and managing everything that has come my way. I just didn’t see that I would need help with managing this.”

However the loss of several close friends to cancer, over a short period of time, brought him up short. “Like a hammer blow I was severely affected by these deaths and struggling a bit to come to terms with everything. Janice Richmond, my oncology support nurse suggested I talk to Dr. John Donohue at Cancer Care West. John is a psychologist specialising in supporting oncology patients and their families. I went to see him and I was just amazed by the difference my sessions with him have made on my life. Firstly John creates a safe place, a sanctuary, in which you can say exactly what you feel without fear of making someone else feel worried, anxious or even alarmed by your thoughts. He really listens while gently helping you to explore your feelings and make sense of them. In my case I was angry with myself that I had cancer and frustrated that I couldn’t control it. I was beating myself up even though it wasn’t my fault and blaming myself for what was happening. John helped me see this and to readjust my thinking and to stop being angry with myself. Then secondly John has helped me build more trust in the system that I am depending on to help me. I am feeling so much more positive about handing over control of my life to others who can help me get through this. These two things mean I have let go of so much that I was bottling up inside and I have a much more positive outlook on my condition and my future. John’s intervention has been a very powerful and positive impact on my cancer journey.

Cancer Care West offers support like this to anyone who needs it on the West coast of Ireland and the sessions are all provided for free. Edward concludes “I would say to anyone who has a cancer diagnosis – do not underestimate the psychological aspects of this disease and more importantly do not underestimate the power of counselling to help. I am so glad I got the help I needed and am very grateful to Cancer Care West for being there for me.”

My Cancer Journey

The drive from the beautiful Inishowen peninsula to Galway is approximately 300 km and takes nearly four hours. It was not a trip Terence Hegarty expected to be doing on a regular basis, but following a diagnosis of prostate cancer in late 2021 it became a familiar part of his life. Fit and seemingly healthy Terence had no idea this would happen following a regular check-up with his GP. He remembers “I was shocked to learn that the PSA levels in my blood were elevated and further investigation would be required.” At this point Terence had no symptoms, was working full time and exercising regularly.

Two weeks later and just before Christmas, Terence had an MRI scan, followed by a biopsy and his diagnosis was confirmed. Electing to have his treatment in Galway, Terence started his regular trips to his oncologist who determined that surgery to remove his prostate was the best option. Following surgery Terence started working on his recovery with the aim of being back to work and back to his regular fitness routine as soon as possible. “It all happened very fast and after the tests were complete I had the surgery, which was about 4 months after my initial GP visit. It’s hard to get your head around it and I quickly realised that to recover well I needed to work on getting myself mentally fit as well as physically fit.”

From the physical perspective Terence commenced a course of physiotherapy specifically designed to help patients recover from cancer treatment. Getting support for his mental health was less obvious but he found just what he needed in Cancer Care West, a charity based in Galway and Donegal. Cancer Care West provides Psycho-Oncology services for anyone living with cancer in the West and Northwest of Ireland. Terence quickly found that talking to the clinical psychologists at the charity was exactly what he needed to help him put his journey into perspective. “Sometimes you need a stranger to talk to. Someone who listens as you work through the enormous impact this disease has on your life. I am extremely grateful that Cancer Care West was there for me. It means that now my recovery will be more complete and I can really get on with my life.”

Following his treatment at University Hospital Galway, where everyone he met was so supportive and kind to him, Terence is back to work at his painter and decorator business three days a week. He is also back to cycling, jogging and walking around the beautiful Inishowen peninsula. More importantly he is more at peace now with what he has been through. “I am coming to terms with the fact that I am now cancer free, both in my body and in my mind. I estimated that I travelled over 6,000 km to get all my treatment done but I am home now, my journey is complete.”

Know The Symptoms

Peter Biddulph was a reasonably fit and healthy man in his 60’s when his world turned upside down in 2021 as he was diagnosed with bowel cancer. Peter remembers “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 “Everyone in the system is so incredibly kind and caring. I put myself in their hands and followed their treatment plan starting with a mixture of oral chemo and radiotherapy, then had more chemo via infusion, followed by surgery.”

Among the various supports Peter availed of was the offer of accommodation at Inis Aoibhinn, Cancer Care West’s lodge at University Hospital Galway (UHG). Peter stayed at the lodge while undergoing daily radiotherapy. “It was a fantastic place to be able to come to each week. The nurses and carers were beyond kind. Then when I had my operation in UHG, I could see Inis Aoibhinn from the hospital window, where my journey all began. Almost like a full circle. Waking from my surgery was most strange, no pain whatsoever, as I had been expecting some, the epidural certainly worked. Tubes and pipes everywhere, five in total, and a strange bag attached to me, like a giant Tick. Just as in Irish Aoibhinn, the care was magnificent, even if I dreaded the visits from the physiotherapist’s, who it seemed delighted in dragging me out of bed for walking and exercise. Now I feel I’m really getting there. Still a little tired but getting better every day. Best of all, I got the All Clear, from the surgeon, so I am currently Cancer Free!”

When Peter first noticed some digestive problems, he put it down to a new diet to help with his diabetes, but as the symptoms grew he realised that all was not normal and immediately went to his GP. His prompt action was an important factor in his positive outcome. In this month of bowel cancer awareness Peter urges everyone to be aware of the symptoms of bowel cancer and if you have any concerns don’t hesitate to go to your GP.

Peter Biddulph with his chemo wig!

 

Help is at hand.  

Life for Jennifer Peoples in early 2021 was good. Despite the ongoing pandemic, she was content, living in a COVID bubble with her partner Malcolm and her daughter and three grandchildren who live next door. So the suddenness of an ovarian cancer diagnosis at the end of June was so unexpected it rocked her to the core. In a matter of weeks she went from presenting her symptoms to her GP in Letterkenny to attending an oncologist in St James’ in Dublin, who immediately recommended surgery followed by chemotherapy. The surgery, which was long and involved, took place at the end of July but thankfully all went well. Five weeks later Jennifer started her chemo.   

Jennifer remembers how incomprehensible it all seemed. “Nothing was sinking in. While I knew the reality of it and I was keeping up a brave face, it just didn’t seem that this could be happening to me. It was too big a thing for me to process and I just shut down a bit and held it all in. It was my way of coping initially.” Early September Jennifer started her chemotherapy in Letterkenny University Hospital. At the hospital she was given some leaflets with information on where she could get some support. One of the leaflets was from Cancer Care West, who have a cancer support centre in Letterkenny, and Jennifer decided to give them a call and see what they could offer.  

Very quickly Jennifer started availing of Cancer Care West’s counselling service with Dr John Donohue at the centre. Describing the effect the counselling had on her she said “It’s hard to describe but it was like I could leave down a big load I was carrying. Suddenly I could breathe. I felt lighter, calmer and more able to cope. It didn’t take the worry and stress of the situation away but it definitely helped me manage it better.  From the beginning I knew that this was what I needed.” John was able to prepare Jennifer for much of what she would experience over the coming months.  He was also able to provide the outlet she needed to vent her anger, discuss her fears and put words on the many emotions she was experiencing. Jennifer had regular sessions with John right through her chemotherapy but also after the treatment was finished. “I didn’t know that feeling well and being well are two different things. After six months of surgery and chemotherapy I was happy to be alive and felt I could move forward and on with my life but it’s not so easy. The physical and emotional aftereffects are much stronger than I expected and here again I found the counselling extremely helpful.” 

Jennifer is now picking back up the threads of her life post this traumatic period. “I have a different perspective on things now and that’s something I am learning to live with. I know that starting counselling with John, as early as I did in the process, was the best possible decision I could have made because I really couldn’t have coped as well as I have without that support. The care I have received from Cancer Care West has been amazing. They are such a small charity, providing so much help to cancer patients and all for free. Looking back I am almost surprised I made it through it all but I know that the counselling I received made a big difference. I am happy to share my story now and my message – don’t hesitate to seek help. If you have cancer it will make a difference to your story too.” 

 

Walking the Journey Together

Early detection of pancreatic cancer is rare as symptoms most often appear after the cancer has spread. Lynne Stickells was one of those rare cases however and she believes that this was more than just luck as she explains “When my symptoms, some digestive problems and unexplained bruising, did appear I thought they were related to an existing heart condition so called my doctor thinking my medication would need to be changed. He advised me to go straight to the hospital. Soon after I was admitted to University Hospital Galway where very quickly I was diagnosed with pancreatic cancer. However the oncologist did say there was some very positive news as he had never seen a tumour like this so small, given they usually go undetected. I felt as if God was on my side, looking after me.”

Lynne’s treatment plan was to start with chemotherapy and then to follow with surgery. The plan got off to a bad start. Lynne contracted an infection following each of her first two chemo sessions, which resulted in several weeks in hospital. She recalls the oncologist visiting her as she recovered from her second one. “He told me that they could not continue the chemo and to me this set off alarm bells as I knew the chemo was required to shrink the tumour enough to make the surgery viable. Imagine my relief when his face lit up with a smile as he told me that the first two chemos had worked though and now the tumour was operable. No more chemo, I just had to get well enough to have the surgery.”

The lengthy operation known as The Whipple Procedure, was successful and Lynne was soon on the road to recovery. “It’s a slow road and a long one but day by day I am getting stronger.” Lynne has remained remarkably positive throughout her cancer journey. “Yes I was concerned but I don’t dwell on fear. If you let it take over you will lose the battle. So I was firm with my family and friends. I only wanted joy, laughter and positivity in my life as I embarked on my cancer journey and they were amazing. I don’t wish my journey on anyone but it’s true to say that I have gained so much from my experience. Especially as a wonderful depth has blossomed in my relationships that gives me so much pleasure, strength and comfort.”

From the beginning Lynne’s two daughters, Janine and Taryn, have been her rock, walking alongside her step by step. They have looked on with horror and admiration as she has faced up to and gotten through so much. Lynne thinks the worst day was “the day my son-in-law gave me a number 3 buzz cut. Once it was done however the worst was over and already I could start looking forward to it growing back. We got through it all together and it’s made us even closer, we are a strong team and we know now we can face anything.”

Another member of Lynne’s team, walking beside her on her journey almost from day one, is Cancer Care West, who Lynne’s daughters contacted. “From the beginning they have supported my psychological needs through therapy while also helping me deal with the physical side of my illness. It was not just their expertise we valued it was also the care with which they provided it. They have gone over and above for me and my daughters and I think they are amazing.”

Lynne is in a good place now, looking to the future and determined that her dream of writing a book some day will happen. As a South African living in Ireland she plans to learn a lot more about her adopted country which “is perfect except for the rain!”. The last words from Lynne on her cancer journey are for those who may be embarking on their own. “Do not let fear take over, otherwise you will look for things that aren’t there. Talk to the professionals, tell them how you feel and follow their advice, they do incredible work. Look for joy and positivity in everything because even in the darkest moments it’s there.”

 

Remote But Not Alone

In June 2020 Kathleen Brennan noticed a lump under her arm and didn’t hesitate to contact her doctor who immediately sent her for tests. Despite the COVID-19 restrictions, things moved very fast and the tests soon confirmed she had cancer. While the cancer was of Unknown Primary (CUP), it had spread to the lymph nodes so in the third week of July Kathleen had surgery to remove the affected nodes, followed by chemotherapy and radiotherapy.

Throughout her cancer journey the hardest part for Kathleen was the isolation. Kathleen and her husband live in a beautiful but remote spot overlooking the Atlantic Ocean in County Donegal. Due to the pandemic almost everything was closed and, as a result, they couldn’t avail of any of the normal services and supports. Being able to meet people who are going through something similar is a huge emotional support and without this kind of contact both Kathleen and her husband felt very alone as they tried to come to terms with her diagnosis. Luckily enough in addition to a very supportive family, they were surrounded by good neighbours who made sure they had what they needed and great friends who called them regularly to have the all-important chats. These gestures of kindness were vital to their emotional well-being and made a big difference to their lives at the time.

Around this time Kathleen became aware of Cancer Care West in Letterkenny and the services they offered. Soon she was able to participate in their online support services which became her lifeline. “I thought I was going mad some days. I was really anxious and stressed about the treatments and side effects. One of my most important contacts was Dr John Donohue at Cancer Care West who I spoke with every few weeks. John listened to all my worries, answered my questions and helped me to put things in perspective. He was also really helpful in giving me ideas on how I could deal with my emotions so I could remain calmer and more positive throughout the months. Patricia Doherty at Cancer Care West was another key member of my support team, always available on the phone to listen, patient and kind and again very helpful with my questions. Then as I got a little stronger I started remote rehabilitation physiotherapy with Emma Houlihan at the charity and this was the beginning of me getting back on my feet and regaining my independence.”

As patients go through cancer treatment they can often feel very cut off and adrift from everyday life. Having professional support to deal with all of this is really essential and makes a huge difference. Kathleen knows that her journey was especially difficult because of COVID-19 but she is just amazed at the supports Cancer Care West provide. “I was so grateful for the regular contact, it made everything more tolerable and sometimes felt like it kept me sane. Meeting the team in person has been great now but it was the remote services I used the most and for me they really did make an enormous difference.”

Kathleen’s world is very different to how it was back then. “The cancer diagnosis and treatment changed everything for me. I look on life quite differently now and treasure every minute I have. It’s been a tough year and a half but now I am looking forward to life with renewed energy and hope.” We at Cancer Care West wish Kathleen and her family the very best going forward.

 

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.”