‘You know your own body and know when something isn’t right’

When Margaret Wall (known as Addie) was told by her doctor that the crippling pain she had been suffering from was down to haemorrhoids she was surprised but relieved to have a diagnosis.

However, when the pain continued, she knew there was something else wrong and it wasn’t until she passed out in her doctor’s surgery that investigations into her condition were taken further.

“In April 2015, I started getting severe pains [in her back passage] and when the doctor diagnosed haemorrhoids, I took the painkillers she prescribed, but nothing seemed to help,” she says. “I went back again and was sent for an X-ray, which revealed some sort of ‘mass’ that the doctor believed confirmed her suspicions, so I was put on medication.

I went back to the surgery and said I wasn't leaving until someone examined me

“But the pain continued and was so bad that I couldn’t sleep and was losing weight. So I went back to the surgery and said I wasn’t leaving until someone examined me. Apparently, I passed out from the pain as the next thing I knew a different doctor was in front of me and brought me into his consulting room. He told me that he was going to send me for a CT scan immediately.”

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Addie, who is married to Michael and has three daughters and four grandchildren, underwent a scan and a biopsy, and subsequently received a phone call with the most unexpected news.

“The phone rang while I was driving so, I pulled over to hear a voice saying they were the cancer nurse calling from the hospital,” she says.

“I was totally stunned and asked if she trying to tell me that I had cancer. She told me that my GP surgery had been told, but they mustn’t have got around to telling me yet.

“I sat there feeling totally numb and didn’t know what to do. I tried to continue driving, but I just couldn’t do it. So, as Michael was at work, I called my friend Fatima and just said ‘I’ve got cancer’. She asked me where I was and came to get me. It was such a surreal time.”

Upon receiving the official diagnosis, the 53-year-old was extremely relieved to be told that her cancer could be dealt with swiftly with surgery and some chemotherapy tablets. However, it wasn’t long before she got a phone call saying she had received the wrong diagnosis and should return to the hospital.

“I couldn’t believe this was happening and the consultant said he was very sorry, but it seemed as though I had a rare form of cancer which was inoperable and very aggressive and would require both chemotherapy and radiotherapy,” she says. “I was in total shock and there are literally no words to describe how I was feeling at that moment.

“I was told that the cancer was late stage (3) and they needed to start treatment as soon as possible.”

Very rare

Addie, who lives in Waterford, was told she had to undergo the maximum amount of radiotherapy along with an intense course of chemotherapy.

“They told me that I had a very rare form of cancer and there had only been 500 cases of it recorded since 1880, so there hadn’t been a lot of research and the success rate wasn’t very positive,” she says.

“This was not good news. I was also told that the treatment was really severe, and I would be admitted halfway through to be put on palliative care pain management and to take a short break from it.

“But my youngest daughter (who was 14 at the time) begged me not to go as I had been in hospital for six months some years before when I went in for an operation and ended up catching MRSA, and she was terrified that the same would happen again.

“So I started the treatment, and ten days later, the burn started – it was so unbelievably painful, and I was raw both inside and out from my thighs right up through my hips. My oncologist wanted me to go into hospital, but I refused so they sent the palliative team to the house.

“I had only been married a few months at this stage (I had also been widowed and lost my son) and my poor husband regularly had to come and pick me up from the bathroom floor where I had passed out from the pain – it was a very tough time.”

After the treatment programme finished, Addie went back to hospital for a CT scan and as doctors had warned her that it was very difficult to treat, she wasn’t expecting good news. But everyone was stunned to discover the that the tumour had actually disappeared.

Everyone was in shock as they really didn't expect this outcome

“When I went in for the scan on September 1st, 2015, five months after I was first diagnosed, I had geared myself up for the worst, but was told that the tumour had gone – they couldn’t find it anywhere,” she says. “Everyone was in shock as they really didn’t expect this outcome and we were so stunned ourselves that we almost felt completely flat with the news.

“My consultant said he had seen only four people in his career, including me, with that form of cancer, and I was the only one for whom the tumour disappeared completely. He believed that because I didn’t take a break from the treatment, it may have been more successful than they had expected.

“But even with the good news, I was afraid to be hopeful and was still in a lot of pain. However, I decided to come off the morphine, cold turkey, which in hindsight wasn’t the best idea. It took a while to get over everything I had been through, and I’ve had a couple of scares since but thankfully the cancer hasn’t returned.”

Although she has been cancer-free since 2015, Addie has had a lot of side-effects and says she wishes she had been warned in advance as she would have known what to expect.

Muscle spasms

“The one thing that annoys me is that no-one told me to expect after-effects from the treatment,” she says.

“I developed fibromyalgia not long afterwards, then two years ago, I was in the car when suddenly everything began to swell up – my hands, feet, tongue – I couldn’t breathe, and it was terrifying. I managed to dial 999 and had a cardiac arrest when the ambulance arrived.

“Thankfully I was okay, but I have had another one since and am having a router fitted so I can be monitored. I also suffer from severe muscle spasms and have damage to nerve endings in my fingers and toes – so it would have been good to know about these things as I wouldn’t have been so scared every time something happened.

“So I would advise anyone else who is going in for some sort of treatment to ask as many questions as possible. Don’t be worried about annoying the doctors, I’m sure I do all the time – it’s their job to answer your questions.”

The mother-of-three says one of the most difficult aspects of her whole ordeal was learning how to cope with what she had been through.

I thought I wouldn't be able to relate to them

"There was no support offered to me afterwards," she says. "I was totally on my own and felt completely isolated as I had such a rare form of cancer so had no-one to talk to. I discovered the Survive and Thrive programme from the Marie Keating Foundation, so decided to give it a go and thankfully, was accepted. In the beginning I had my doubts and almost left as 95% of the people on the course had been through breast cancer so I thought I wouldn't be able to relate to them.

“But the more we got talking, the more we discovered the similarities we had experienced. It was so good to be able to discuss things so openly and there were no issues with sharing anything at all.

"I have found it so beneficial and met such a great bunch of people – in fact, we are all meeting up for the first time in person soon, so I am looking forward to that." (Beginning September 14th, the foundation will be hosting a new series of Survive&Thrive workshops. To sign up, see mariekeating.ie/events)

“I also went to counselling recently and that has helped a lot and made me realise that the whole experience nearly broke me, but I am in a much stronger position mentally now. Physically, I do still have some side-effects and am often very tired. But I made the decision to come off the heavy pain killers and sleeping pills as I don’t like to be too heavily medicated.

Honours degree

“Sometimes my mood is down, but I know I am lucky and the upside to it all is that I also achieved something I never thought possible as I went back to college and got a first honours degree in social care. And, I have also started volunteering for a helpline as, although my energy levels are very low at times, I want to give something back and to help others.”

Addie says she would advise others to seek advice if they think something is wrong and get a second opinion if they feel their concerns are not being taken seriously.

“You know your own body and know when something isn’t right,” she says. “People are often afraid to ask, but they need to keep pushing if they feel they are not getting the answers to their questions.

“I’ve been through a lot and for a while I would look in the mirror and wonder where I had gone as I had lost my sparkle and the real me. But I have learned to accept things and am so grateful that I am fit and strong – I’m still a mother, a wife, and a grandmother. And I’m still here.”