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posted by Margaret78
29 May 2014

My first experience with how the system works

Last reply: 06 September 2014 20:38
Hello , Perhaps it is merely my reflection but health care system seems to cover only those who are either well off or very poor. I do not qualify for medical card, saying that by no means I am doing well, struggling is more appropriate word to use and my twice a year visit to GP is something I need to wisely incorporate into my budget. I had an opportunity to do a cheap mammogram when abroad. I took it. €20 including CD and narrative...not a bad deal and having already enquired after mammogram in Dublin I knew I am just a bit too young to get a free one and too poor to go privately . Unfortunately, the result was not "all clear". Something has been detected in my left breast and I was being advised to follow up with an ultrasound. So I went to GP and was being refereed for ultrasound. Since I am just over 35, it is free too (Yuupeee ). I was told by my GP that in two weeks I should be contacted about my appointment. There was no phone call or any letter for another two months so I started making enquiries and found out (after many fruitless conversations) that consultant, based on short note from my GP and without requesting to see my mammogram or anything else concluded that I am a low risk and my appointment is for December (10 months later). After many phone calls to my GP and hospital it seems that December is the best they can do and I can either humbly accept it or do ultrasound privately. In a state of panic I asked my GP if I can pay to speed up the process (I asked myself...how expensive it can be....€50, €60? After all I have a genuine reason to do it). When I expressed the wish to pay for it, I was called by the hospital nearly straight away, to my surprise, I was being offered next day appointment and other days that week were also available. Talking of jumping the queue. The price was the last detail mentioned and it was either €130 or more, not sure that is how shocked I was. Of course this is only ultrasound, consultation before/after ultrasound would be most likely another costly affair. I called back half an hour later and cancelled my appointment then I broke down crying. It is my first experience of how things work and though I did not have high expectations I guess, I hoped things are bit better organized than that. 10 months long waiting list sounds like a dead sentence for those who actually might have a cancer and 10 months long mental torture for all including those who are lucky enough to get "all clear" at the end. What saddens me most is that 10 months, in the same place, can be reduced to 24 hours as long as you are willing to splash the cash...now when thinking of expression “duty to care” I dare to add “for cash payees only”. It angers me that whomever assessed my case decided, by looking at one line long note from my GP, that I am a low risk. I could respect that decision if followed by review of the mammogram CD but they never bothered to ask for it or showed any interest in it. Instead they based their whole diagnosis on a short note. It is scary to think that it is how present days professionals assess patient’s health, no facts, no figures just a reasonable guess. One can only wonder if, in the same circumstances, the daughter or mother of same person who reviewed my case would be put on 10 months long waiting list. I will be going abroad to visit my family in three months and I will organise ultrasound and whatever else is necessary when there. After 10 years of being in full time employment, paying taxes, levies and all the rest I am forced to seek medical help abroad because only there I can afford it. It is all very sad and depressing. I wholeheartedly hope I do not have anything to worry, after finding out it takes 10 months to get ultrasound to check a lump for cancer I am dreading getting sick in here. This whole experience seriously scared me. It is sad when only rich can afford decent care and next day appointments while the rest of us is forced to wait on a 10 months long lists enough from me, just needed to get it off my chest. M
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posted by Josephine
31 March 2014

Letrozole/Femara

Last reply: 05 May 2014 14:47
Hi again I took Tamoxifen for a year and didn't find the side effects too bad. I could blame weight gain on it but that would be helped along by eating too many goodies ( as in poor me, I deserve a cake) I've been changed to Letrozole/Femara for 5 months now since I had my ovaries removed. I'm finding the joint pain and stiffness really bad. At first, I didn't realise it was a drug side effect and I thought I was developing some form of arthritis. My feet and hands don't work at all in the morning when I wake up and I have to shuffle across the floor to get to the loo and keep squeezing my hands to get them moving. I have to lean against the wall and go one step at a time to get down the stairs. I probably sound like I'm 87 but I just recently turned 47! The stiffness wears off after about a half hour but as the day goes on it all starts up again especially if I sit down for a while. I love walking but if I go for a walk and then sit down, I feel like I've run a marathon with the pains in my legs. I spoke to the oncology team after 2 months and was advised to take a Glucosamine supplement but I haven't noticed any improvement. More recently, I spoke to the Oncologist and he said if I can't tolerate it that I can go back to Tamoxifen. It seems up to 30% of patients react badly to it. But, he said Letrozole was better for me by a few percentage points. So I'm afraid of dismissing any percentage points that will keep me well but also don't know how I can put up with feeling like this for 5 years. Has anyone had a similar problem with letrozole/femara and have any solutions? Thanks, Jo x
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posted by Josephine
31 March 2014

Cost of letrozole/femara

Last reply: 02 April 2014 22:01
Hi again After all my questions, here is some helpful info. For anyone who has to pay for Letrozole/femara like I do,you may have been shocked to discover that a months supply is so expensive. I paid over 87 euro for my first pack (of the generic letrozole) at my local chemist. I then discovered that a " large well known pharmacy chain" charges 59 euro for the generic letrozole. Then I rang that chain in Northern Ireland and they charge 5.60 sterling for a month's supply! I got two packs there for 10.55 sterling. You can just bring your Irish prescription there (or to any EU country). With that saving, you could stay overnight, if like me you don't live anywhere near NI, just a thought Also the new chemist in Dundrum shopping centre is supposed to be selling drugs at NI prices so it might be worth investigating. Hope this is of use to someone.
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posted by Snoozy20
06 April 2014

Infection with expander implant

Last reply: 08 April 2014 06:59
Just wondering if anyone has had any issues with an expander implant. Mine isnt settling , Ive already had an Cellulitis which cleared but now it seems to have a fluid buildup in a small area, kinda like a blister. I dont want to have to get it out but it may be the only option
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posted by spudburf
08 April 2014

Post Chemo question

Last reply: 09 April 2014 19:30
Hi all, I finished my chemo 2 weeks ago YEY!! I was on Taxol for 12 weeks and am still on Herceptin until November. My question is did anyone develop any rashes? I have a rash on my face which is extremely itchy and my body skin is very itchy too. I've taken a non drowsy antihistamine which isn't great but I'm wondering is this normal or maybe its to do with the drugs leaving my system?? Anyone with this problem?
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posted by kazoo
08 April 2014

tamoxifen and supplements?

Last reply: 09 April 2014 08:08
Do any of you take supplements with tamoxifen? I have started taking calcium with vitamin D and cod liver oil to see if it can help the aches and pains I have some days Now someone has mentioned glucosmaine, apparently a new report says it can add years to your life My GP doesn't seem to have any advice on supplements and I've seen varied reports online about whether they do any good...
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posted by Active
10 April 2014

Relaxation classes

Last reply: 12 April 2014 21:24
I went to a Stress Management/Relaxation class for Cancer patients . During the relaxation session I found myself in floods of tears instead of in a state of peace and calm. I have never had that problem before at ante natal or yoga classes.Has anyone had a similar experience ? Active.
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posted by Georgie123
14 April 2014

Chemo stopped due to side effects

Last reply: 27 April 2014 11:10
Hi, Hospital decided to stop chemo as I have been experiencing some side effects. Only 3 taxol left out of 12. As much as I hate the sessions, I am more annoyed at nit being able to continue. Worrying factor is have I had enough to do the job. Side effects are nails discolouring and seeping, i will loose one or two toe nails.i a few nose bleeds along the way, aa nd bits of nausea with tiredness. asked day doc to continue but whe would not allow this. Has anyone elsa e had their treatment shortened for side effects? An appointment will be made with my onc doc, but could be 2/3 weeks away. Hope everyone keeling well. Georgie.
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posted by happymum
28 April 2014

finishing radiotherapy

Last reply: 05 May 2014 22:50
Hello Ladies, Haven't been on for a while, life has been very busy here. I will finish radiotherapy on Thursday.Hard to believe the 30 went so fast , on my 3rd booster tomorrow.My sister in law passed away almost 2 weeks ago, she had been suffering from a brain tumour aged 42.All of a sudden everything is coming to an end , my treatment , the constant demands on all the family that go with having a terminally ill relative.Our whole lives have revolved around helping, minding and organising everything for her and her children for the last 6 months.It is very strange trying to adjust to this new life again, time is more our own again to a point. My final day of rads coincides with my next appointment with medical oncologist who I have not met since I was referred to Radiotherapy.The delightful Tamoxifen awaits me now.Hopefully that will go well, My "sunbed sessions" went quite well no major issues with it apart from tight armpit and sore side of breast.Tiredness wasn't bad either apart from last week but I think that was part combination of funeral and sunbeds.I must make a list of questions to ask on Thursday, but reading through your posts herre I think ye have covered most of them for me.Haven't gone back to work yet and to be honest it was great to be away from there while all going on with my sister in law.Sorry ladies have gone on a bit here.Hope everyone is doing ok .
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posted by spudburf
29 April 2014

Eyebrows

Last reply: 29 April 2014 16:51
Hi all, I'm 5 weeks after my last chemo (yey) and am still on Herceptin but my eyebrows have just started falling out!!??? What's going on?? Is this normal or have any of you had this experience? I didn't lose my brows or eyelashes during chemo - just my hair! They did thin out though...any advice ladies???
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