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 – Frank will be fine going through the magic polo mint as I like to think of the MRI scanner. If you are going with him bring a good book and go for a coffee in the cancer centre (better buns. Take care and don't get too stressed the radiologist's give nothing away even when it was obvious that I had two fractured vertabrae and a knackered spine they told Trevor that I had a very vurved spine.
Love Pamelax
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 – she told me my job was to get washed and dressed every day. I managed that, kept my teeth clean (I'm a dental hygienist married to a dentist) and got out of bed so she could strip it every few days. I did feel rotten and ate so little for the three weeks, like Kev needed platelets and blood but made it out and am now 27 months later. I have relapsed and am on maintemance thalidomide packing suitcases today for our trip to Rome in less than two weeks to see my wee sister get married and have spent the day in the garden. Hope that you all realise there are so many people here who are willing you all on and hope that Kev gets home soon. One tip when he comes home if he has lost his appetite don't be too upset if he can't eat too much I'm now nicely overweight again. In thoughts and prayers – onward and upward. Amazed Tom didn't advise you to have a vodka or two xx
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 Debs has said the day passes in a flash and really isn't as long as it seems on paper. Hope you enjoy.
Pamela
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 feed people) and tireness that I can only describe as I felt as though someone had pulled the plugs from the soles of my feet and everyone else noticed that I had lost my motivation to do anything. Glad that at least for the minute I've got it back. Fingers crossed that this is only a blip and not the beginning of needing treatment. Have you written a list of questions for Dr Drake – I find it makes it easier when your sitting in the consultation room. Take care xxx
Made me laugh to although I though the punchline might have been something to do with a washed out grey creation!
Oh Dai,
I know how this feels this is the situation I found myself in last year with rising light chains which did plateau after a few months but caused a massive amount of bone damage in my case. Like Min says I am considered a failure with 11months remission so it's been suggested I consider an allo. I've had four cycles of CTD having had VAD as induction therapy and am currently having thalidomide as maintenance. Listen to your team and they will guide you and I hope that you can get your head around all this it's really difficult I know. I set myself goals, first was to see my daughter through her 11 plus, second to see her start secondary school, third to see my sister married (26th April this year) and next goal my son's AQE which is next November and then secondary school. I find on the dar days focusing on my next goal helps. Sending you positive vibes and hoping that you do plateau.
Pamelaxx
Hi Mrs L,
As you know I was discussing this option last Monday with my consultant and one of the questions I asked was how many are carried out in Belfast per year and the answer is approximately 10 for all diseases. There are 10 isolation wards in Belfast so not a very high percentage of people here are having allo's. There are 2 people I have been told have achieved a 10 plus years remission from an allo though – not sure who they are and obvioulsy they took the chance when there were far fewer drugs avaliable.
xx
Hope your daughter had a lovely birthday Bridget. Bottoms up and all the luck of the Irish!!!!!!!!!!!!
Hi Gaye,
I hope that they've managed to get your drugs sorted as this is the last thing that you need on top of the pain you are suffering. My femurs are getting more comfortable every day following my RT which is six plus weeks now. I also have taken tramadol 50mg as required for pain and found it to work quite well. Fingers crossed that the treatment starts to relieve your pain soon.xx
Hi Tracy,
I'm now three years since my diagnosis and the six months before were spent having numerous blood tests which only showed up a B12 deficency for which I was prescribed injections. There is a family history of being B12 deficent so this did seem like a more likely cause of my tiredness as all the other blood results were normal. It's difficult to accept that there is no one cause for myeloma and just one of the many parts which make it hard to get your head around the whole thing. Good luck with the CTD. x
Hi Sarah,
I was allowed to bring a duvet which had to be new so something you might want to check with the ward. This was a really comfy option and made it feel a little more like home. I brought my laptop and enjoyed reading the newspapers on line as couldn't concentrate on a book. As others have said lots of PJ's and underwear and sweeties to suck if you feel like it. Wishing your mum a smooth journey. x
Hi Keith,
This was one of the first things that happened to me and still does but only occasionally. My toes spasm more regularly than fingers and I have found that Q enzyme Q10 does help with muscle spasms when taken regularly.
Hope the hopsital were able to shed some light on whether your treatment is the cause of your spasms.
Pamela
At last some positive news Sharon I have to admit to refusing to not walk the six steps to the toilet on my own which with hindsight could have lead to all sorts of problems but as I was out treking around Rathlin Island the Sunday before my admission I was being a bit pig headed. Getting home to your own enviroment is lovely and away from the daily routine of hospital no matter how lovely the staff are is a blessing and the kids will be so glad to have you back. Fingers and toes crossed that your on the mend and get back on your feet soon – you certainly have been through the mill.
Pamela xx
Hi Bridget,
This is the final dex day for me in this pulse and I know how you feel it is such a necessary evil. My face had changed colour within two hours of taking the first dose and I have now resolved to having a round face and the fact that my bridesmaid dress in April will fit but am disappointed that it is a size bigger than normal but I am happy that I am going to be in Rome to see my wee sister get married. I've spent all day in work and as it's half term had kids with me (joys of owning your own buisness) and my laptop got a virus and after an hour I was really ready to chop Sam's head off as he went on and on and we needed to wait for his Dad to finish with the patients. We splashed out on the M&S valentines meal as I knew I'd be knackered after a full busy day and I have to say everyone else enjoyed the spread and I was trying to stuff it down as my taste buds have gone. The only plus side of dex for me is that it helps loads with the residual inflammation from my femur nailing operations and my mobility is better on dex days. Thinking about you and noticing that even on dex days your still here for everyone else who's having a tough day – you are amazing! Take care Pamela xx
Hi Sharon,
Hope the radiotherapy works quickly for you as mine did for spinal cord compression last June. I knew something was wrong needing painkillers on a regular basis and a numb feeling in my left leg caused me to go and see my consultant unfortunately she was very flipant and told me to go off and get a scan privately. This uncovered my spinal cord compression and I like you was immediately admitted and on bed rest for a week – felt like a bit of a fraud being pushed up and down corridors. Thankfully the problem did seem to resolve quickly and helped loads although I always knew that my remission was over as my light chains were climbing at that stage but the RT allowed me to delay chemo until the kids went back to school. Fingers and toes crossed that you are up and about soon and that the leg numbness gets better. Thinking about you xx
