Published in GALWAYnow Magazine May 2008
Marie Todd was diagnosed with breast cancer last October. She underwent a mastectomy in November and has just completed her last chemotherapy session last month. Marie, who is an advanced nurse practitioner in diabetes, is planning reconstruction at a later stage. Marie has three children, all girls, and is also a grandmother. Here she talks to Jo Lavelle about her experience of breast cancer.
“It was a devastating blow when I found the breast lump and I knew from the word go that it was malignant, I just felt myself it was. I didn’t tell anyone and within a week, I had the mammogram and the biopsy. Then I went home and told the children that this had happened. It’s really made me take stock of my life and sit back and take time out for me.
“I had split from my husband some months before I was diagnosed. My counsellor believed that it was very significant in my recovery with the breast cancer; I had been through so much trauma that it actually gave me the strength to deal with the challenges I faced with breast cancer. I think it was significant, we were still in a state of shock and we had another shock and improbably the worst day of my life was the day I had to tell my children. And from day one I’ve been honest and open with them. Even the schoolteachers say you’d never know anything happened in your house this year because the children are so well adjusted. Because I’m upbeat and I’m fine they just act accordingly as well. Don’t think there were times there weren’t tears, but they’re very short-lived because there’s so much living to do now.
“I’d always view that the glass would be half full rather than half empty, but it’s given me time to reflect. Every day, instead of jumping out of bed, I reflect and I’m thankful for the things I’ve got in life - my beautiful children, my grandson my family, my friends, my colleagues, my patients. The page of life is now clear for me to write my own script and I’ve learnt through all of this that nobody can create happiness but yourself and that’s what I’m going to do. And I look to the future with complete optimism and blue skies. Now, I’m not that naive as a health care professional to know that people cannot get recurrences, but I just feel you take the treatment let the health care professional deal with the management of the cancer and my job is to heal myself from within, which I have been doing all the time.
“I would say to anybody that it happens to, firstly, the key is early detection and diagnosis, even though it’s frightening; you don’t want it to be happening to you. Then have a balance of rest and exercise, social activity and diet and do something for yourself every day. I might put music on and dance – that’s what I like to do. Some other people might read or watch a movie. But I think it’s time for you to take something back and I think throughout it all you’ve got to accept what you can’t change and change what you can’t accept and say ‘no’ a little bit more, which I had never done in my life. So this has been the positive and I was so overwhelmed by people’s generosity, of their thoughts, and flowers and gifts. The one thing I keep thinking is, ‘Well I didn’t have to die to realise I was appreciated’, and I’ll always be thankful for that. There’s more thought now between family and friends. You know we’re all really busy and it’s easy to say I can’t do it, I can’t see her, I can’t be there, but that’s all changed in my life. We now spend more time with family and friends. It’s not perfect, everyone will have their ups and downs but we just view life very differently.
“It’s been such a positive experience, but you do need help. You need to get help from professionals, counsellors, you can’t get through it on your own and anything you don’t want to do, you just say, ‘Well, I’m just not going to do that anymore’ and anything I do want to do I just do it. My motto now is I wake up each day like it’s the first day of the rest of my life and I’m dying to live, I’m not living to die. And it has been a fantastic experience, although there has been times when there’s been not so good days but you’ve got to succumb to that as well because that’s what happens. It has given me time to reflect on life and change my direction and really embrace and enjoy the rest of the years that I have. Something’s going to happen to all of us and all we can hope for is hopefully a peaceful and pain-free death but life is for living and I’m going to live everyday as if it’s the first day of the rest of my life. It’s been marvellous in many respects and people have been so good.”
“I’ve been given a chance to reflect on life and move forward and I’m very grateful for that, very grateful.”
Published GALWAYnow Magazine and LIMERICKnow Magazine
March 2009
The long, dreary winter might be over, but living in such turbulent times can bring its own darkness. Jo Lavelle looks at the devastating consequences of depression.
We all have periods in our lives when things aren’t going so great - but we can usually pick ourselves up and dust ourselves off. However, for thousands of others who are prone to getting down, these fallbacks can be the start of a long and treacherous battle with depression.
Particularly in these uncertain times, when jobs are on the line, financial worries are rife, and with little stability ahead, incidences of depression are set to become a lot more common.
Depression is a seriously debilitating and devastating illness. Affecting over 400,00 people in Ireland, its affects on the sufferers and their family and friends are more disturbing than many imagine.
Fifty-four-year-old Maeve suffered from severe depression for four years, which culminated in her attempting to take her own life. The downward spiral of Maeve’s depression began when she was encouraged to take early retirement, having worked for almost 30 years in the same job.
“At the time I used to run marathons; I was constantly on the go, but then I developed an injury and I became a lot less active. So that, coupled with the fact that I wasn’t working for the first time in 30 years, and couldn’t find work to match my skills, I began to think, ‘At my age, who wants to employ me?’ It doesn’t take a lot to start to feel very bad about yourself.”
Recounting the effects that depression had on her, Maeve says it basically robbed her of four years of her life. During this time, she was fatigued, couldn’t get out of bed, could barely wash or dress herself, describing such small daily tasks as “mammoth”. “Depression stole from me my self-esteem, my self-worth, my energy, my vitality, my will to live. We all experience a little bit of the blues now and again, but when the Monday blues turn into the Tuesday blues and goes through the week onto the next week and goes on forever, it turns to black. Feeling down all day, every day - that was me.”
“I only slept for about two hours a night for four years; I was constantly waking, constantly walking around the house. The only time I’d have any comfort would be during the night because the phone wouldn’t ring, the doorbell wouldn’t ring and people wouldn’t be asking about me. My concentration went completely - that was one of the most frightening things. And I was completely indecisive. I couldn’t be bothered to pay bills. I lost about two stone. I had no interest in food; it all tasted the same - of nothing. I did everything out of character. I spent a year apologising for things I had possibly said to people. Depression changes your way of thinking - I underwent a complete personality change. And I upset so many people. Life was completely dull. My self-worth was completely gone. Life didn’t mean anything, I just wanted a way out basically. I can only describe it as like being down in a dark, dark barrel with a lid on and you can’t crawl up out of a barrel very easily.”
It was during her six-week stint in a psychiatric unit following an attempt to take her own life that Maeve began to recover, very slowly at first. One of the major catalysts in Meave’s recuperation was befriending another lady in the unit who was suffering from depression, but was also battling cancer. From channelling her energies toward helping her friend, Meave says the depression slowly began to lift.
Five years on and Maeve has recovered from her depression “100 per cent”. She now spends her much of her time doing voluntary work for Aware, and stresses the importance of support and counselling in getting through depression, which she says assisted her in getting her life back on track.
According to PRO of Aware, Sandra Hogan, there are coping skills that can be developed to help get you through a rough period, and help to prevent the likelihood of developing depression. “Difficult life events will happen to us all, but we can learn new ways to cope with difficulties and minimise the impact they have. Don’t bottle up feelings: talk to someone about them. A good diet and regular exercise is essential for both physical health and mental health. Alcohol and drug use do have a negative impact on mood so be aware of this. Get enough sleep, and address any causes of stress or anxiety in your life.”
If you or anyone close to you is experiencing any of the below signs, seek help as soon as possible by contacting your GP or by contacting one of the organisations below.
- Name has been changed to protect identity.
Are you depressed?
The signs of depression:
- Changes in mood e.g. if they seem very down or are crying a lot;
- Low energy levels;
- Changes in sleep pattern;
- Excessive tiredness or fatigue;
- Difficulty concentrating;
- Loss of interest in pastimes or social life;
- Being self-critical;
- Communicating a loss of interest in living, or feeling that they don’t want to continue to live.
(Aware)
Support:
Aware Support Group 1890 303 302 www.aware.ie
Samaritans 1850 60 90 90 www.samaritans.org.uk
Positive Mental Health 091 596567 www.positivementalhealth.ie
Schizophrenia Ireland 1890 621 631
OANDA 01 833 8252
Grow 021 277 520 www.grow.ie
Recovery 01 668 1855 www.recovery-inc-ireland.ie
TeenLine 1800 833 634 www.teenline.ie
Childline 1800 666 666 www.childline.ie
HIV - The Chilling Reality was a winning entry in the Crystal Clear Health Literacy Awards 2008.
Published in GALWAYnow and CORKnow Magazines March 2007
The first time we heard about HIV was in the 1980s, and along with it, horrifying images of gaunt people on death’s bed. It was a frightening sight, a frightening time. Here was a new disease, something that literally sapped the life out of the infected person and ensured a slow and very painful death. Almost worse than the imminent death though, was the shameful stigma attached to the disease and the fact that those who contracted it were shunned, considered to be dirty and untouchable. HIV or better know as AIDS at that time, was the modern day equivalent of leprosy.
Since then, remarkable progress has been made in the treatment of HIV. But there is still no cure. People who have acquired HIV can now expect to live a long life with new medications that have been discovered. So while a little less doom and gloom is now attached to the illness, it is no longer associated solely with homosexuals and drug users. Today, heterosexual infection is more common than homosexual. HIV is now everyone’s problem.
In fact, the infection has come so close to home that we know there are at the very least 100 people in the West living with HIV/AIDS. 4,251 people in Ireland are listed as being HIV positive. But considering that it can take up to ten years for someone who has contracted HIV to even begin to see symptoms, there are undoubtedly hundreds more people out there who have been infected and who are not aware. These people may be sexually active and infecting others unknowingly.
Orla Nugent Irwin, general manager of AIDS West, believes there may be at least a thousand people currently living with the virus who are unaware that they are infected. “If you contract HIV today, and are tested tomorrow, the virus will not show up. It will take a minimum of three months for you to have a HIV positive result. If you don’t have a HIV test, you may not know you’re positive for many years and chances are you won’t find out that you’re positive until you start to become ill - that could take ten years, fifteen years, it could take five. For instance, someone who is using heroin and living on the streets, abusing alcohol and so on, would progress at a faster pace than someone who has been living a healthy lifestyle and takes care of themselves. HIV is a virus that attacks the immune system. If your immune system is being attacked by other things, HIV will progress at a faster pace.”
It’s a frightening thought and Orla believes we underestimate the rate at which HIV is being contracted.
“When HIV was first reported, it was considered to be a gay and drug- user infection. Today, the heterosexual community is at the highest risk. The most recent HIV statistics show that there were 927 MSM (men who have sex with men) infections whereas heterosexual infections were up at 1,200; that’s quite a significant difference. We need to remember that it’s in our community, it’s urban and it’s most definitely rural. It’s present and it’s not just a gay or a drug user’s infection.”
According to Orla, young females in their early 20s are more susceptible to contracting the infection. It’s easier for a man to pass it on to a woman than it is for a woman to pass it on to a man.
“I worked in the area of HIV in the States from 1993 to 1999. Through my work I met lots of women who were HIV positive, many didn’t know what to do when they were diagnosed. So I set up a women’s group called Darma for what we called the invisible women. They felt like they were the invisible because they didn’t fit into the stereotypical image of HIV. They had either been infected by their partners, or a needle stick injury, their partner had been a drug user and they never knew or their partner had had sex with somebody and they didn’t know about it. They were your housewives, teachers, nurses and mothers who no one thought could be HIV positive - yes these people do exist. There was one lady who had been positive for ten years and she never had any inclination at all until she started to get sick. She never felt she had cause to have an HIV test as she never associated herself with risky behavior. That’s why I always recommend that if you’ve previously had a sexual partner and you’re moving into a new relationship, sit down with that person and suggest that you both go and have a full sexual health screening, because everyone has a past.”
In addition, Orla believes that the number of people with the HIV virus is also under-reported due to the massive stigma attached. “When someone is initially diagnosed, I would say the first year is just like a roller coaster for them - the fear of death, the fear of what they are going to do. It would take at least a year for them to accept that they are HIV positive. Some of them don’t ever accept it. How do they deal with it? Some of them don’t, some become extremely depressed, because of the fear of telling family and friends. The stigma is huge. There are people in Galway who are HIV positive; they’re not going to disclose their status and I don’t blame them. I would never recommend anybody disclose their status without sitting them down first to discuss the consequences of disclosure, as the response may be negative. There are always ignorant people out there who believe that it’s God’s punishment or you deserved it. Remember, it’s hard enough dealing with the condition without dealing with that mentality too.”
Due to the fact that alcohol abuse has reached crisis point throughout the country with less and less care being taken by both women and men to protect themselves when having sexual encounters, coupled with the fact that so many infected people are unaware that they are infected, HIV is spreading at an increasingly alarming rate.
“I would say that in at least 70 per cent of our helpline calls, people stated that alcohol was involved. Thanks to funding from the Western Regional Drugs Task Force (WRDTF) we have just employed a new Drugs, Alcohol and Sexual Health Education Co-ordinator to address this problem. You can promote positive sexual health all you want but when alcohol comes into the scene on a night out, it’s extremely difficult. That’s why it should be inherent in us to use condoms. During the winter, you wouldn’t put on a shoe without putting on a sock first. It should just be the norm to use condoms when having sex. Until that happens, we’re going to see the rates of HIV and Sexually Transmitted Infections (STIs) climb.”
So, while HIV is considered to be the most serious infection, according to Orla, other STIs can have a profound effect on people’s lives.
“By the year 2005 over 85,000 cases of STIs had been diagnosed in Ireland (since 1989). The yearly figures are on the increase rather then decline, and show that many people are taking sexual risks. 85,000 people infected with STIs indicates that either people are just not listening to the safer sex message or are so unaware of the risks associated with unprotected sexual intercourse, that they take risks. Though all STIs are notifiable, many are not reported. I believe there are a lot of infections not being notified which indicates that the 85,000 may be a conservative figure.”
“STIs can be broken down into two categories, viral and bacterial. Bacterial STIs such as Chlamydia, Gonorrhoea, Non-Specific Urethritis, Vaginosis etc. can be treated with a course of antibiotics. However, with Chlamydia (known as the silent infection) between 50 and 80 per cent of women who are infected may not know they are infected and due to this, don’t get tested until they have developed further complications such as pelvic inflammatory disease. Viral STIs include Hepatitis B, Herpes and Genital Warts and are more difficult to treat.”
An STI with more long term and psychologically damaging effects is Herpes, which although it can be treated, can come back repeatedly throughout a person’s lifetime, says Orla.
“If somebody gets Herpes at the age of 19, both the medical and emotional consequences may stay with them for the rest of their life. Though the Herpes lesions can be treated, the virus stays in your system and may come back repeatedly, especially if you have a suppressed immune system. What you do at age 19 may affect all future sexual relationships. By right, you should inform any future partner about the infection, giving them the chance to take precautions. This may sound easy but when do you tell someone you have Herpes? Before the first sexual encounter or wait until the relationship is well established and you feel that a partner is able to handle such news? Remember, you are putting them at risk of contracting the infection; they have the right to know. There is sometimes a feeling of guilt and the questions we commonly get asked are, ‘how do I tell my partner that I picked up a sexually transmitted infection maybe eight or ten years ago? Do I tell my partner prior to sleeping with him or her? Are they then going to stay or leave? Do I sleep with them for a while and use condoms, in the hope they don’t get it before I tell them?’
However, while the majority of STIs are easily treatable, Orla says that people are sometimes reluctant to get tested. “There may be a sense of denial, or they may be worried that they will meet someone they know in the STI clinic - remember going to the STI clinic and having a full sexual health screen does not mean you have an infection, it means that you are taking care of your sexual health, the same as one should take care of their mental health.”
“The service that both the HIV and STI clinic provide in Galway is fantastic. They are totally confidential and free to all members of the community. If you are concerned, I suggest you either give our helpline a call or call the STI clinic for an appointment. Clinics are also available in Portiuncula Hospital Ballinasloe, and Castlebar.”
“In relation to telling people about the risks of STIs, sometimes you feel like you’re banging your head against a brick wall. You’re trying to get the message out there and yet again you’re trying to get it across in a positive way. We are all born sexual beings. It’s inherent in people to have a sexual drive. We need to promote positive sexual health, where people enjoy the act but are also responsible. Sex with a person you care very strongly about is much more fulfilling and meaningful then a one-night-stand. Communication is so important and people need to feel comfortable with each other to talk about sex.”
So, in a country where condoms were only legalised in 1993, along with the decriminalisation of homosexuality, sexual freedom has advanced at a very fast rate. But this rapid so-called advancement of our society has not left time to prepare people for these changes. Orla says that while we are now a very sexualised, modern and advanced society, we are still so behind in terms of how we deal with our sexuality; it is still a taboo subject.
“In the 1950s, and 60s the Irish sexual culture was one ruled by the Church. Sex outside marriage was shunned and the act was for procreation rather than recreation. We were told it was against the rules of the church to use contraception - many people listened. Then come the late 60s and early 70s and we had a sexual revolution. Things started to change, travel became more affordable and people started to holiday in other countries. Around this time we started to see an increase in the spread of infection. It would be wrong to say the infections were not there prior to this time, as they were, but as sexual activity changed so also did the incidences of infection.
Within a period of 35 years, we as a society have gone from one of being overly conservative to sexually awakened, it is a massive jump in such a short period of time. Remember, condoms were illegal before 1993, to get them you had to prove there was a medical necessity. Today rather than condoms being illegal, they are just outrageously expensive making them unaffordable to some members of the population.”
“Sometimes I think, we’re still not getting the message across but then I have to think of the growing population size. Our helpline calls are increasing which indicates that people know services are available free of charge. But unfortunately, they usually get to us at a stage where they have had unprotected sex and may have contracted an STI. So really, it’s trying to get the message across that it’s ok to talk about sex and sexuality. We need to normalise it and it’s only when people start to do that will we see a decrease in the spread of HIV and STIs.”
Looking to the future, Orla says that she has great hopes for the prevention and treatment of HIV. Microbicides, a cream or a gel that a woman can inset internally to prevent the spread of HIV is due to come on the market in the near future. “This is a major advancement for the developing countries because in a lot of those regions, condom use is not acceptable. But with the microbicides, women can take control of their sexual life without men necessarily knowing. Work is currently being done to find a microbicide that will prevent HIV and allow pregnancy, and a microbicide that will prevent HIV and can be used as a form of contraception as well. We really look forward to that day.”
This is an extract from “Anna’s Story” a story of HIV and hope which will be published by AIDS West for Irish AIDS Day, June 2007
I’d been to see Dr O’Brien again that January and he suggested that I should make an appointment with the doctor in the hospital. He also said it would be a good idea to make a list of questions that I wanted him to answer for me. The clinic was in a very old part of the building and offered no privacy; two different doctors sat at two separate tables in the same room. They were making do with the only premises they could find for this new infection. It was a cold place and not very uplifting. My first impressions of this doctor, I have to admit, weren’t up to much but armed with my questions, I started. ‘How effective was the treatment? How would I know when to start treatment?’ I plodded along asking them one by one until I got to my final question. “What is the likelihood of me developing full blown AIDS?”
“I’ll put it to you this way,” was his answer, ” you’re dying”.
I was so shocked I didn’t know what to say to him. I got up and walked out the hospital gates. All that went through my head was “I’m dying. I’m dying”. I could think of nothing else for days and at some point I must have rang Jean, my befriender and told her the news. She was as shocked as I was. “How does he know? Does he think he’s the almighty? How does he know he’s not going to be dead before you?”
I laughed. Jean couldn’t believe that someone in his position could still be so un-informed about the virus. Had we come nowhere in the past ten years? Had people learned nothing? Jean soon settled me down. She was always there to listen and offer sound advice.
My next encounter with the doctor wasn’t any better, but this time I was ready for him. I was again in his clinic for a check-up, when he said, “I think I need to refer you to our Social Work Department.”
“And what do I need to see a social worker for?”
“Because you’re destitute and in need of help.”
“Destitute? Where are you getting ‘you’re destitute’ from? I’m by no means destitute. I’m a young mother with young children and I’m HIV positive. Not destitute. My name is Anna, Anna Mahon and I’m not just another number on your chart. Do you hear me? My name is Anna and I’m not destitute, just HIV positive. Ok?”
Taking off his glasses, he stared at me. I could feel his eyes going through me. I didn’t move. “I’m sorry Anna. You’re right.”
I replied; “I just want you to see me as a person, not a number. Numbers don’t have feelings.”
I needed him to see that I was still a person; that I wasn’t the virus nor was I ever going to be the virus. HIV was something in my life that I was going to have to live with because there were so many more important things in it already, my children for one thing. I was not going to be labelled by anyone, no matter who they thought they were.
From then on Mr Doctor and I got on just fine.
HIV- the facts
HIV (Human immuno-deficiency virus) is a virus that affects the immune system. AIDS (Acquired Immune Deficiency Syndrome) is as a result of both the progression of the HIV virus and the depletion of the immune system over a long period of time.
No one has ever been cured of HIV.
HIV can be passed from human to human through:
Sexual contact, heterosexual or homosexual involving the exchange of body fluids with an infected person.
Sharing injection needles and equipment with an infected person
From an infected pregnant mother to her baby
(Health Service Executive)
High Risk
Having unprotected sex with an infected person
Having oral sex with an infected person
Being unaware of your partner’s sexual history
Abusing intravenous drugs, particularly if you share needles
Having a blood transfusion in a country where screening services are inadequate
(Health Service Executive)
STI Clinics
UCHG 091 525200 (Monday and Friday by appointment only) Wednesday - walk- in clinic, please phone for details
AIDS West - Information, Education and Support in Sexual Health, Ozanam House, St. Augustine Street, Galway. Telephone 091-566266, Helpline 091-562213. Opening hours: 9am to 4.45pm - Monday to Friday.
