DELAYS in accessing appropriate bras for Clare women who endured the traumatic experience of having a mastectomy have been condemned as unacceptable by a prominent public representative.

Councillor Patricia McCarthy said she was shocked to learn that some Clare breast cancer sufferers experienced difficulties obtaining the standard allowance of two mastectomy bras from the Health Service Executive (HSE).
She made her comments after a number of breast cancer patients highlighted difficulties securing appropriate bras at a public information meeting in the Old Ground Hotel, Ennis on Monday night.
The Mid-West HSE stated it is national policy that all breast cancer patients should receive one prosthesis and two bras from the hospital they had their breast surgery in, regardless of whether they have a medical card or not.
After this, patients with medical cards may get their next bras and prosthesis from community services, while those without medical cards must bear the cost themselves.
Councillor McCarthy said everything possible should be done to help any woman who goes through the traumatic experience of having a mastectomy.
“Providing two mastectomy bras should be automatic, hassle free for the woman, who should also be given any other aids and counselling where necessary. No obstacles should be put in their way. A woman should not be made feel she is begging for something she is entitled to. It can be difficult for women to adapt after a mastectomy and it is important they are left with a sense of worth and value.
“The HSE are encouraging women to go for mammograms and to check themselves regularly. If women are experiencing difficulties getting mastectomy bras, where is the encouragement for them to be proactive about their own health? A woman’s shape changes after childbirth, so what if an extra mastectomy bra has to be provided for these women?”
The public meeting was organised by the Clare Women’s Network as part of a schedule of events for the week of International Women’s Day.
Thirty-six-year-old Aileen Delaney, who got breast cancer in September 2008 when she was five months pregnant with her second child, said she had a full mastectomy on October 31, 2008.
“After the mastectomy, I was given a bra but it was like a vest and I couldn’t wear a mastectomy bra until I was not as sore.
“It took until the week before Christmas to get the mastectomy bra and prosthesis. It was a nightmare. I was going around with cotton wool in this bra they gave me. It was very frustrating waiting so long and even though the nurses and doctors were brilliant, I did find some of the ladies I spoke to in the HSE about my prosthesis and mastectomy were abrupt,” she said.
After the birth of her second child, five weeks early on January 6, 2009, Aileen ran into some difficulties, as the size of her breast had reduced, which resulted in the prosthesis being too big.
“I was asked why I needed a prosthesis again so soon, why couldn’t the one I had do? I tried to explain I needed it due to the birth and so on.
Eventually, after many phone calls and letters from my GP and oncologist, I got my second prosthesis.
“I do feel there should be a better system in place for women after a mastectomy. You shouldn’t have to wait almost two months for a bra and then your allowance is only two bras for the year. They are not cheap and I think it is very unfair. I don’t know of anyone who wants to be in this position of losing a breast and having to get a prosthesis and mastectomy bras.
“I felt like I was asking for something that I wasn’t entitled to. It is our right and it should be in place after your surgery. I got four hours home help from my public health nurse, which was a great help.
“I didn’t even know I could get it. There was no information on this or even where to go. I would love for a more efficient system when you get sick.
“It is such a terrifying time, with so much to think of that something like a bra and prosthesis after a mastectomy should be in place, as well as more information on what services are available for you before and after treatment,” she said.
She also revealed she was initially turned down for a medical card because her husband was working full time but got it after obtaining different letters from her consultant and medical people.
A number of other breast cancer survivors at the public meeting expressed concern about difficulties securing a medical card and what they believed were their entitlements. Women claimed they received a letter from the HSE after getting two bras, stating it was not the policy for the HSE to pay for them but the agency would do this on a once-off basis.
Another women claimed she was told by the HSE she didn’t have enough
PRSI to get a medical card after having a mastectomy following breast cancer.
However, one of the guest speakers, Marie Skerritt, who outlined her own difficulties securing appropriate bras after breast cancer, stated she was entitled to a medical card on medical grounds after getting cancer.
The Mid-West HSE stated it complied fully with the national policy concerning the availability of bras and prosthesis for breast cancer sufferers.
“The HSE have a stock of bra and prostheses here in the breast unit that is provided to all patients once they have had their first fitting appointment post-surgery with the breast care nurse. Items which we do not have in stock are ordered in a made-to-measure fashion with our supplier and these orders are expedited as soon as possible for our patients’ comfort.
“The particular concerns of Ms Delaney will be addressed once we have had an opportunity to speak to all involved in her care,” the HSE stated.

Long road to recovery for Aileen

AILEEN Delaney’s frank and revealing account of trying to cope with an unexpected cancer diagnosis drew large applause from the crowd at the public information meeting at the Old Ground Hotel, Ennis on Monday night.
The 36-year-old Ennistymon native moved to Ennis about eight years ago. In 2008, Aileen was busy worrying how she would cope with having two small babies under two years of age when she was five months pregnant with her second child.
That September, her husband, Nigel, noticed a puckering on her right breast while she was putting on her deodorant. Little did she know how much her life would change.
She was trying not to worry but had a niggling feeling there was something wrong. “I kept saying to myself, I am 33 it can’t be cancer. There was no history of breast cancer in my family but I was still frightened,” she recalled.
On the way to her ultrasound appointment, after the puckering hadn’t gone away, she learned her grandfather had died and was preoccupied with the funeral for the next few days. She went back to a doctor in Galway a few days after for her results and found there was a tumour growing inward, which required a biopsy as soon as possible.
Forced to wait a week for results, she described it as the longest week in her life and said she never prayed so hard. The doctor confirmed it was cancer.
“I was in shock trying to listen to what she was saying but I couldn’t focus. I looked at Nigel and Ailbhe, my little girl and started crying. I cried during the whole consultation.
“I had to decide that day on my surgery because my tumour was oestrogen positive and as I was pregnant, I had plenty of it, so the tumour was growing quite quickly. I felt my heart breaking and our world was falling apart. I was so frightened for myself, my daughter and my unborn baby,” she said.
“I was told that a full mastectomy was the best option. I couldn’t have a reconstruction as it would be too long under anaesthetic for my baby. I had my mastectomy on October 31, 2008. It was terrifying and I felt everything was happening too fast.
“It was a tough operation but I was concentrating on the baby and felt I would do whatever was asked of me to stay around for my children. I wanted to be a mother for so long and felt that by some horrible twist of fate, it was being snatched away from me. My family found it difficult and I got every advice going, from second opinions to stories of every kind,” she added.
Her little boy, Caiden, was born five weeks early on January 6, 2009 and she had to have chemotherapy in the Galway Clinic five days later.
Caiden had to stay in hospital for nearly three weeks and Aileen said it was “awful” coming home without him. She spent her time going to hospital in Galway for treatment and then down to St Munchin’s Hospital, Limerick to spend some time with Caiden.
She found chemotherapy very difficult. In addition to the constant nausea and tiredness, she lost all her hair and eyelashes, which she found really tough, having worked in the beauty industry. For her, losing her hair was the final sign to everyone she had cancer. She didn’t like the way she looked and was very conscious of her appearance, having put on weight as a result of steroids.
After chemotherapy, her husband, Nigel, had to go back to work and she believes this was the time things started to fall apart. The hospital appointments were less frequent and people were visiting less.
At home with two small babies she started to feel overwhelmed. The enormity of what had happened to her was hitting home.
“I spent most days crying. I couldn’t enjoy the children and every task felt so difficult. I would go to town for a few items and came home with nothing. My brain felt like mush and everyone kept saying ‘the hardest part is over you, you are better now’ but for me it was far from over.
“I had five more years before my all-clear. I was on hormone tablets that brought their own side affects. I am in menopause so that the cancer doesn’t come back.
“The hot flushes are the worst but after a few months of trying to hide my feelings from everyone, I admitted I had a problem and went to my GP. I went on anti-depressants. Not everyone agrees with them but I felt I couldn’t cope and felt my children were losing out and deserved better,” she said.
In February 2010, she had reconstruction surgery and it helped her to get back some of her self-confidence and self-worth. She now believes there is life after cancer, even if it is a fight to stay alive to do the daily chores, raise children and get your confidence back without having to worry about every pain and ache.
“I have the battle scars to prove I have fought and won. I have two and a half years of more treatment. August 2014 will be my five-year mark and  all I want is that all-clear verdict,” she concluded.