Still Lopsided
December 16th, 2007 by roos
It is now nearly two years ago since I had the mastectomy and reconstruction. I am still waiting for the breast reduction to balance me out again.
Untill now I have one DD cup and one C cup, which is rather annoying. I have a silicone shell, which I have been putting in my bra for the past couple of years and I have enough of it.
A month or so ago I received a letter from the HSE proposing that I would opt for treatment abroad, in order to cut the waiting list down. How on earth do they expect me to accept that?
Away from home again, in some hospital I never heard of, to be operated by a doctor I have never seen before?
Not for me, that one. If they had given me the option to choose which hospital I’d rather go to, I would, of course, have chosen to go to Belgium, but somehere in the UK? No Thanks!!!
June, a woman I know from Ballinadee, where I lived before, has been diagnosed with breast cancer. She had a radical mastectomy. She called me a couple of weeks back. It is strange, how you immediately have a bond. I know what she’s going through, and she came to me for help. Strange how friendships can be created…
The cancer was detected quite early, I think she’ll be alright.
friends, mastectomy, reconstruction supportOur Dirty, Bad Hospitals
November 15th, 2007 by roos
What can one say? The news of the last few weeks has just been horrendous.
The poor women in Portlaoise …. I know what it’s like to be diagnosed with cancer. I don’t know what it must feel like when you were first wrongly cleared of the disease, after being worried when feeling a lump, only to be told months later that you actually have it, now more advanced than when you were first tested.
Have these politicians who are responsible for this nonsense no shame? What if it was their wife, their sister, or mother? Would they brush it off like they did now?, blaming it all on one radiologist?
Next the state of the hospitals. I’ve said it time after time again. They are dirty, and now it is finally made official.
Your life is in danger when you go to a hospital in Ireland. Dirty germs are waiting for the perfect victim, hiding in dirty toilets, in hairs in the showerdrain, on your bed or your bedside table, on the doorhandle or even your food tray, the fork you eat with, the doctor’s hand you shake, the nurses hair.
I am totally speechless, because I have a feeling, that apart from a lot of noise in the Dáil, and the media, nothing much will change. The whole system needs to be reviewed. Mary Harney just wants to push on with her two-tier health care system, politics is politics, not decent healthcare management.
I’ll keep my options open in Belgium for the future, and hope that none of us will need the hospital in an emergency!
Hospitals and Doctors, HSE, politics public WardsI Won!
October 22nd, 2007 by roos
I got a phone call from the MRI department in Cork this morning. They have scheduled an MRI on November 6th. No explanation, but I’m happy anyway. I don’t know if this is a one off to keep me sweet, or if I am on an MRI screening roll now. Anyway, it pays to stick to your guns in this country!
I am lucky to know more than is comfortable for some doctors, and I can ( sometimes) fight my way to what I want. A lot of women don’t and they are left with treatments and screenings of the past….
breastcheck, fighting spirit, Hospitals and Doctors, HSE MRITo MRI or not to MRI, that’s the question
October 20th, 2007 by roos
It has been written about a lot and it has been accepted by most medical professionals now: a woman who has had breast cancer should be screened by MRI, rather than mammograms on the opposite side, in order to detect a second breast cancer earlier. Because MRI ’s can show the start of breast cancer much sooner.
That’s what they do now in the US and also in Belgium, and other countries I am sure. But not in Ireland.
The first time I asked about MRI’s is when the oncologists talked about the second tumor that was found during the second operation. I asked him if they would have noticed this tumor had they done an MRI instead of a mammogram. He said, possibly yes.
So I could have been spared two of the three operations. I had 3 tumors, of which only one was noticeable on the mammogram, that was the one I could feel! A year before nothing had been seen.
The second time I asked was when I read about how screening breast cancer survivors with MRI’s will save more lives. Then there was a sigh from the doctors, yes that is the golden way… but not here.
I have been thinking about it ever since. My sister has had MRI’s for the past two years now. Ok, the first time there was a little doubt , some unclear images that might or moght not have been cancer. That was a transition period from mammogram to MRI. Since then, it seems very straight forward.
If she would have the bad luck to develop another cancer, they would be on to it straight away. I, on the other hand, get the mammograms, even though when I had cancer, only 1 of the three tumors were visible on the mammogram.
I went to my surgeon’s visit three weeks ago. As I am a public patient, I only get to see one of the registrars, who doesn’t know anything about me, just prescribes another mammogram, prods my right breast a bit, and then sends me home.
This time I asked him about the possibility to be screened by MRI. He tried to laugh it away. ‘ Oh, but the golden standard is still the mammogram! ‘. ‘Oh no it isn’t ‘, I said, and I told him all I knew. He started to become a little agitated. I could see him thinking. ‘Oh my God, one of those annoying patients who think they know it all!’ so he said, well here they do it with mammograms, and filled out the form for the X-Ray department.
I didn’t give up.
I asked him why my sister would get more chance then me? When all she had at the start was 1 small tumor that only needed removing and some radiation therapy. I have been through the lot,etc., etc.
This time he got really nervous. He stormed out and got Mrs. O’Hanlon, the surgeon in. She came in, and started explaining to me that only in very special cases do they do MRI’s, but if there was the slightest doubt on a mammogram, they would do the MRI then. I had to explain again, that there had never even been a slightest doubt when I first had cancer. The other two tumors had simply never been seen! I mentioned Belgium and my sister again. ‘ It must be part of some study’, she said. I told her that NO, it is normal practice over there, and again that my sister had more chance than me.
I was the difficult patient. Dr. O’ Hanlon brushed me off by saying she would discuss it in the next meeting of the multi-disciplinary team, and sent me to the breast-care nurse.
I didn’t understand why I had to go there. The nurse looked concerned when I arrived . She had obviously been informed about that patient with the crazy ideas in her head. I repeated my whole story again. She took note and promised me she would disscuss it a week later in the multi-disciplinary team meeting, and then she’d call me.
That’t the last I’ve heard of that.
And I am wondering now, is there any way I can get my screening done in Belgium?
I don’t trust this country and it’s medical force any more!
breastcheck, fighting spirit, Hospitals and Doctors, HSE, MRI, recurrence supportSusie Long
October 16th, 2007 by roos
And so she passed away, the woman that touched us all. I remember her phoning life-line on RTE. I remember the shock when I heard that she had to wait seven months to be diagnosed with colon cancer, because she was a public patient. She was a young mother.
And now she died. Not because she wasn’t careful about her health, but because she didn’t have private insurance!
Shame on the HSE, shame on private consultants, shame on the whole system!
It could have been me, I was lucky enough to live close to Cork , to have had Dr. Kelly, and the medical team who made no difference between private and public patients.
My thoughts are with her and her family.
The logical thing to say now would be that maybe her death was not in vain, maybe something will be done about this. But I am afraid that is not the case. I am sure more people face the same problem as Susie every day.
cancer, Hospitals and Doctors, HSE, private Health Insurance, public /private patients, public Wards, support, Susie Long treatmentBreast Cancer Awareness Show
October 16th, 2007 by roos
Are you as fed up with it as I am? All these beautiful young models with their pink fashion items, which most certainly create awareness of… the companies who make them and the (semi-) celebrities who wear them.
I am sure everyone is aware of breastcancer by now, the real question is, what can we do about it. if anything.
I was delighted to find I am not the only breast cancer survivor thinking that way. I found the website ‘think before you pink ‘, which says exactly what I’ve been thinking for a long time. I would love to start a European branch of this site. If any one wants to help me with this, I am all ears!
Another good website is the cancer project , this month it dutifully follows the masses in supporting think pink, but it is a great site full of information. I especially like the weekly recipes for cancer survivors. They are based on vegetarian healthy foods that help prevent cancer or recurrence of cancer.
Rather then helping companies get richer through pretending to be concerned about our well being, it might we better if we support the organisations that have decided to DO something about it!
breast cancer awareness, cancer survival, fighting spirit, nutrition and cancer survival, recurrence supportBack at the Computer.
September 6th, 2007 by roos
I’m still there. I’ve been away for a while now, for no other reason than the summer holidays. The weather was so bad, it was pretty hard on the children and the parents trying to keep them happy.
Now the kids are back at school, the sun started shining!
In the mean time we still have the gallery , and that has had its ups and downs as well.
The pictures are selling, the artists are great, but the landlord decided to double the rent! Something inside me says it could only happen here! So we are now moving the gallery to Kinsale, where it should work well.
This week I got a letter from the HSE, inviting me to avail of treatment under the National Treatment Purchase Fund, where the HSE would pay for my breast reduction operation in a private hospital in Ireland or the UK.
Honestly now, which mother of four young kids could opt for an operation in the UK? I can’t organise that.
And who would operate? I would have no say in that!
After the events of the last few weeks, which have shown the true value of private hospitals, there is no way I will avail of this offer!
Jane Tomlinson died, she was a great and very courageous woman, another one on my personal list of great women who have passed away! Unfortunately, this list keeps growing.
Jane Tomlinsom was given 6 months after being diagnosed with terminal breast cancer, and lived for seven years after that.
Jane has been an inspiration, she has shown us all what real courage means. She inspired me to start exercising again, after struggling for so long, and she has shown the world that you can beat the odds.
MRI scans
May 26th, 2007 by roos
I am in a research programme in the South infirmary. They are testing out some new medicine, I am not getting it, I am in the group who doesn’t take the new medicine, so the results can be compared.
The advantage of that is that I will be followed for up to ten years after start of the chemo. I get to see the oncology-research doctor every three months for the first five years, then every six months.
I hope at the end of the research, I’ll be in the survivor’s part of the statistics!
So, still upset about the Irish Times’ blunder, I asked the doctor about the possibility to get MRI scans instead of mamogrammes , as is now the case in Belgium and the USA, amongst others.
The doctor tried to brush it off, by saying “we do an MRI scan, if there is the least bit of doubt on the mamogramme. ” “But,”I said, “that is just the problem. Last time you didn’t see anything on the mamogramme, a year later I came back with a 2.5cm , tumor that had spread to the lymph nodes. It was a very aggressive cancer, and that is exactly the indication for MRI screening of the opposite breast. ”
The doctor was lost for words. “And,” I said, “my sister in Belgium is being screened by MRI scan for the past two years.”
” Yes, that is the golden way.” she answered with a sighh. The research nurse sighed as well and said,” it will take minimum 10 years before we can do that here…… “Are you still so proud to have voted the same governement in?
breastcheck, Hospitals and Doctors, HSE recurrenceMy Musings of Today
May 24th, 2007 by roos
Life is slowly getting back to some kind of normal, I have the odd visit to the hospital for check-ups and screenings.
The children still get anxious when they hear I have to go to the doctor, but I think that anxiety will never go away. I just hope I’ll never have to come back with bad news again.
I read that Farah Fawcett’s cancer has come back. The media had reported she was “cancer free” only three months ago. What an ill-considered piece of nonsense.
Calling someone cancer free the day he/she walks out of chemo therapy is something no doctor would do. We all know cancer can come back, and it often does. Poor Farah, it must be extremely hard to have to deal with this.
I try not to think of recurrence too much, but I am worried about it.
In the mean time, the gallery’s opening is only a week away, have a look at it here. We are still decorating the place, but we’re nearly there.
I am so pleased that we’ve found something we both enjoy and may even keep doing untill we’re old. To be surrounded by beauty every day,and to be in touch with the artists, who are all intelligent, sensitive and incredibly interesting people feels like a dream.
Haydn has also successfully proposed a film to RTE , they’ll start working on it soon. Everything seems to be coming together at last!
Pour vue que ca dure!!
emotions, Family, recurrence, relationship WorkIreland and Breast Cancer Treatment
May 22nd, 2007 by roos
Today, the Health Supplement of the Irish Times has the News story that Barbara Clark, the English woman who had to go to court for the right to get Herceptin treatment, praises Ireland for its good breast cancer treatment.
“Ireland leads Europe in fight against cancer, claims activist.” is the title of the article.”You’ve got so much going for your health service [in Ireland] that although it doesn’t always work, it’s still working well for breast cancer,” Ms Clark said.
I am very grateful for the treatment I got over here, I got the Herceptin, without a problem, as did every woman who needed it in Ireland. But let’s look at a few other points.
First of all, Europe is much bigger than the UK and Ireland. I wonder if the Irish Times and Ms Clark realise that. For as far as I know, nobody in Europe has had to go to court for the right to get the right treatment, because these issues are not decided by politicians. The UK has a bad record for treating people. Apart from refusing Herceptin ( which they don’t any more) they also refuse to fund hemo dialysis for people over 65,and I am sure other treatments are hard to get as well, it is because the NHS is organised and politicised in such a way, that these things are allowed to happen. They are shocking facts to most other Europeans.
Let’s look at Ireland now. The treatment is great if you live near a big city.
For people who don’t, it is a totally different story. Although the treatment is there, the way to get at it is a form of torture . When I was going through the radiation therapy, I met a woman with breast cancer who lives in Charleville. Her treatment hospital was in Limerick, but because Limerick doesn’t have the radiation therapy unit, she had to come to Cork for that.
There were days that she had chemo therapy in the morning in Limerick,( 1 hour drive away) and then a few hours later, she had to be in Cork for her radiation therapy.( 2 hour drive away from Limerick)
She was completely exhausted. Would you call that a good treatment? What about the women in the West, who choose a mastectomy, rather than having to go through treatment, because of the distances involved.
The psychological services, like the Ark cancer support house are excellent, but impossible for most of us to reach!
What about screening? It is now clear that women who have had breast cancer in one breast, should have the opposite breast screened with MRI, because it shows the starting cancer much sooner. I can’t get the MRI screening here, my sister has had it for the past two years in Belgium.
In places like Belgium, you would be treated by a breast surgeon, who is highly specialised, followed by a breast-ocnologist in a breast-ward.
Now, consider this comment I received on one of my posts on this blog, we are a long way from getting the kind of home care they get in Bristol.
I think the Irish Times should have considered their article, or at least the tiltle a little better. Could this have anything to do with the elections?
Another report from the last few days is the pole that shows that the majority of people would agree wit the proposal of Mary Harney to build private hospitals next to public hospitals to provide public beds if needed.
Why do people agree? Because they don’t know the better way forward, and why do they not know? Because the politicians don’t, and why don’t they? Because they are politicians, and haven’t got a clue what goes on in hospitals, what is needed and how the health system should be organised.
Although you can get all the treatment you need over here,which is commendable, the health system is so badly organised , that it borders on the ridiculous to claim that Ireland leads Europe in cancer treatment.
emotions, herceptin, HSE, politics, support treatment
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