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 (where it dies, this is less likely the more sterile the enviroment you work under (obviously be quite difficult to have your own mini theatre in most routine surgeries) and the antibiotics are prescribed afterwards to try and prevent the osteonecrosis. This is a rare condidtion but a recognized side effect of IV bisphospenates and less likely to happen if you are on oral bisphospenates. The hospital team are more specifically trained in dealing with this type of medical complication in the same way that your GDP is better at preparing and fitting a crown or making a set of dentures – it takes everyone to make up a team. Hope this helps
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 up to a drip – although just like Frank I'd do anything to stay out of hospital and away from the doctors.
I hope that your GP has some answers for you both tomorrow although I have to say that mine is not keen to do or prescribe anything without the say so of the team in the hospital.
I'm doing okay relasped again but getting my head around that and getting on with the treatment – have had a few difficult months getting my head around relapse but finally thinking there is a future again.
Take care
Pamela x
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 questions to your team so that you can make informed choices. The drugs can make you feel really rotten and do things that you would never dream of doing otherwise. Hope that you all get to enjoy the joy and hope that a new baby can bring. Pamela x
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 I did have patches for pain relief which affected me really badly. I am still on aciclovar 400mg still as a dose to prevent my shingles returning but there is still pain in two areas. Shingles was the worst pain that I have ever experienced and I think I have quite a high pain threshhold. If you are in any doubt call the helpline I didn't and ended up being told my dose was really bad and I should have had IV anti virals. Hope you know we are all thinking about both of you, your brother and family x
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 the nurses don't leave him to take these himself.
I hope that you all find some peace through this journey and wish you strength to help your Dad. He's really lucky to have the support of a loving family. Pamela xx
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 for Christmas these have been much less so maybe you could try something like a lavender oil and water infusion in your bedroom to help relaxation especially as the bone marrow biopsy approaches. Hope this helps Pamela
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 hormones tests to confirm that I was infertile and these were to be repeated after a year but I now don't really see the point as I've come to terms with it. If you need to talk give me a shout. Pamela
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
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 little memory cards that I'd like used at my funeral where you place them in the pews with pens and people who attend can write memories of the person and they can be collected and kept and I hope added to the memory boxes that I've been making for my kids for ages anyway. I've bought two wooden boxes with hinged lids from B&Q and just put things in there that are special and hope that perfume and hopefully hand prints can go in there to. I know that if you haven't seen this programme you can still get it on line and Winston's wish has some good idea's that have helped us as my kids were 5 and 8 when I was diagnosed. Hope that today has been as good a Father's day for you all as possible – take care Pamela x
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 them for breakfast. I'm still doing that and it's so much easier. Hope that all goes well.
Pamela xx
Bridget,
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. Iris was home for about 10 days which were tough but she got her desire to die in her own home. Do you have Marie Curie nurses or have you had advice from the hospice staff about what you can do to be able to have your FIL home? Thinking and praying for you all – we all know how tough this bit of the journey can be Pamela xx
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
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
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 privately only one at the city and as I was having significant pain Dr Kettle had requested that it was read urgently (just before Christmas and discovered the two wholes in my femurs that needed nailed) so he had answeres the next day. I think it differes as there isn't always someone to read the scans that day but if there is a major problem they will track you down quickly. I also go once a month so only have to wait a few weeks at most – I'm sure if you ask they'll be able to give you an idea of when the films will be read.
Just be careful I know that I lost confidence in Dr Drake because she made bad calls when I needed treatment and delayed but Frank will really now when he is ready for treatment to begin. Good luck tomorrow make sure you get a good seat people watching can also be good for passing the time in the hospital.
Must post pictures of my wee brother who ran the Belfast marathon for myeloma Uk in 4.5 hours a great time for his first marathon and has just registered to do the Dublin one in October. So far he's raised over £500 so really proud of him.
Will be thinking about you both tomorrow.
Pamela x
