• tinkerbell replied to the topic Teeth. in the forum Side-effects 9 years, 8 months ago

    As a member of the dental world the advice that we are given is – routine dental treatment ie consultations, restorative treatments and scaling and polishing are fine to have carried out by your regular dentist while having Zometa. The reason that extractions are carried out in a hospital setting is the risk of osteonecrosis of the jaw bone…[Read more]

  • tinkerbell replied to the topic Shingles in the forum General 10 years, 3 months ago

    Hi Jean,
    Life is never easy and watching those you love suffer is so difficult. My pain from my shingles can be anything from an itch to a deep almost burning sensation. I was really quite sick and even now I still have scars. I am still on aciclovar as tablets now and I to stop the shingles coming back. IV is intra venous where they hook you…[Read more]

  • tinkerbell replied to the topic Newcomer in the forum Carers 10 years, 3 months ago

    Hi Zoe,
    Sorry that you've had to find this site and that what should be the most exciting time of your life is being blighted by this disease. I am one of the under 50 gang having been diagnosed at 35 with two young children – that was four years ago. This is a tough journey but take it one day at a time, keep talking to each other and ask…[Read more]

  • tinkerbell replied to the topic Shingles in the forum General 10 years, 3 months ago

    Hi Jean,
    What a rough time your having – hope by now you know whether Frank has shingles. I had shingles last summer and from the rash started to when it was apparent that it was shingles it took a few days – I looked up pictures online to help with the diagnosis. I am still on pregabalin and take 125mg twice a day with no real side effects but…[Read more]

  • tinkerbell replied to the topic HELP in the forum Newcomers 10 years, 4 months ago

    Hi Nicola
    Sorry to read about your Dad.

    My sister is a ward manager and having been an in patient myself I know the limitations on the nursing staff in hospitals but the majority of complaints result from relatives or patient's not speaking up. My advice would be speak to the ward manager about the meds etc and they can in turn ensure that…[Read more]

  • tinkerbell replied to the topic headaches in the forum Side-effects 10 years, 4 months ago

    Hi sarah,
    I am just about to stop CTD after eighteen months on and off it and over the last three months have had quite severe headaches which I discussed with my consultant last week. I am experiencing frontal headaches which we both felt were as a result of stress (mm has relapsed and caused quite significant bone damage. Since being off work…[Read more]

  • tinkerbell replied to the topic Hot Flushes in the forum Side-effects 10 years, 7 months ago

    Don't want to be the bearer of bad news Debs but following my SCT I did indeed have an early menopause which started with hot flushes as you describe. There were all sorts of things that you could get to help with these. I was a similar age and like you had no intention of adding to the brood but it was still something else to cope with. I had…[Read more]

  • Hi everyone,

    We are trying to organise the 2nd Glitz and Glamour Ball in the Europa Hotel Belfast on Saturday 8th October from 7.30pm. Tickets cost £45 which includes dinner,and entertainment including stand up with Mr Tim Megarry aka Da From Give my head peace! Tickets avalible by emailing or by calling 07914818458…[Read more]

  • Hi
    So sorry to hear about your Dad's diagnosis and you can feel lonely especially in Northern Ireland. I'm also in NI and have to say that the treatment that I've had and all the staff I've encountered so far have been wonderful.
    Hope you get to enjoy a wee bit of the sun we seem to be having this weekend Pamela xx

  • tinkerbell replied to the topic 2nd SCT in the forum Treatment 10 years, 11 months ago

    Sorry to hear that your both having such a difficult time and really hoping that things start to get better for you both soon and that someone can offer some advice about effective pain relief.
    Take care
    Pamela x

  • Hi Angelina,
    Sorry to hear that you are all having such a rough time at the minute. When I was diagnosed three and half years ago my MIL had died just six months previously and I know that my daughter really treasures the memory box that we made her. At that time I investigated Winston's wish after watching the Mummy Diaries on TV they have…[Read more]

  • Hi Renee,

    I know that the diagnosis is so difficult and so is the mass of tablets that you are faced with taking. I remember the pile of tablets on the first morning I took chemo with a glass of water and 45 minutes later the pile was gone. My sister who is a nurse offered me a piece of great advice to pop the tablets into a yoghurt and eat…[Read more]

  • tinkerbell replied to the topic SAD DAY in the forum Off topic 10 years, 11 months ago

    My MIL died four years ago aged 69 and I understand what you mean as it never felt that she was nearly 70. She got her wish to die at home after six weeks in hospital with the help of Marie Curie and the local hospice. The coordinator from the hospice arranged for a hospital bed and for Marie Curie Nurses to help during the night.…[Read more]

  • Dear Susan,

    I am so sorry to read of Kevin's passing, I followed his journey with interest. I trust that you are surrounded by friends and family at this time.

    Pamela x

  • tinkerbell replied to the topic My Wonderful Husband Patrick in the forum General 11 years ago

    Dear Tina,
    So sorry to learn that Patrick has passed. I hope that you have the support of family and friends at this time.
    Pamela xx

  • tinkerbell replied to the topic tiredness in the forum Carers 11 years ago

    The wedding was amazing and Tracy and Vincent had an amazing day – the hard bit as you know is living together. I am having a little pain at the minute in my spine and legs but I think it's old damage so will discus with Dr Kettle on Friday but otherwise feel really well – counting the day down to that cruise.

    I've had lots of MRI's mostly…[Read more]

  • tinkerbell replied to the topic tiredness in the forum Carers 11 years ago

    I often think that those around me have a harder time than me – I am lucky to have been diagnosed over three years and although I have periods of real illness on a daily basis I am capable of looking after myself. The support of my family is amazing and my hubbie, sister and wee brother all offer so much especially when things go wrong.

    Jean…[Read more]

  • Hi Liz and Kev,
    SCT is difficult time more so for the carer than the patient from my experience. I was in and out in a little under three weeks thankfully but only when I was totally recovered did my husband tell me that he was really concerned as I got a chest infection. I just kept taking the meds and stuck to my sister who is a nurses advice…[Read more]

  • tinkerbell replied to the topic Info Day in the forum General 11 years, 1 month ago

    Hi Dai,
    I've been to two info days one in Belfast and one in London. Both days were very different and I gained lots of information at both and am considering attending the next one in Belfast in October. My only advice is if you have specific questions write them down so as you remember to ask them, enjoy the day and have an open mind. Like…[Read more]

  • tinkerbell replied to the topic Pain in side in the forum Carers 11 years, 1 month ago

    Hi Jean,
    It could just be a pulled muscle I'm assuming that they've given pain relief for this so watch carefully and see if this has an affect. My first signs of illness were lack of appeitite – it felt like I had to force food down and I really had to motivate myself to cook(Not like me I am a typical Irish country mother who loves to over…[Read more]

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