Do any other carers out there find that they are very tired all the time? My husband has had Myeloma for 2 years and at present is doing well after a sct, but I am constantly tired and on edge. I try to treat him normally, but even if he is in the loo a long time, I call out to see if he is ok! His paraprotein is only 3.1, so we have nothing to worry about for a while, but I am even uneasy if he is in the garden on his own. Am I losing the plot, or is this a common reaction?
If you are loosing the plot then so am I. I am a carer to my hubby Frank diagnosed Sep 2006 with SMM. He is not on treatment, but at last visit she discussed future treatment. Also sent him for skeletal Xray and tomorrow he is going for an MRI. I watch him like a hawk If he pulls a face I'm asking whats wrong!! For a long time after diagnoses I could not go out and leave him. Only in past 2 years I can go out with friends. Even then I can't wait to get back home. I am the opposite to you – I have difficulty sleeping – spend quite a bit of the night opening up this site to see what is going on. I watch Frank when he is sleping to make sure he is still breathing!!! When his mobile rings I admit to eaves dropping – I always think it is the hospital with ba news. His mobile just went off and was consultant secretary to say skeletal xray clear – thank God, just tomorrow to get over. I feel uneasy most of the time – so to answer your question (took a long time)if you feel like that and I do – must be par for the course. I hope your husband continues to being well for a long time
Best wishes Jean xx
Thanks for your reply, I feel positively normal now!!
Hi Kathlean and Jean no wonder you are tired and on edge I really do think its easier being the one with mm , husbands and wives are the ones who shoulder the burden .I am about to make a sexist remark so all males please close your eyes!! I think as wives and mothers we are used to being in control of our loved illnesses I am sure you know what I mean , we buy the medicines , make appointments and cook nice things to eat So when something like myeloma comes along it must make you feel more helpless and anxious However I for one could not manage without Jeff , not because he does any of those things very often but because he is by my side when I need him and I am sure your husbands feel the same . I do think you should try and make time for yourselves though , have a few treats , shopping a hairdo or a night out with friends or family , you are just as important love Bridgetx apoligies for the sexist belief by the way
Thanks for that. I do admit to being a nut case!!! I was much worse but counsellor sorted me out. How is your pain?
Remember Frank pain in side. He kept saying it was muscular and turned out he was right. Hope you got your pain sorted.
MRI scan tomorrow scares th cr**p out of me. You would think that I was having it.
Hope you are feeling better.
Love Jean xx
I know exactly what you mean.
I have found myself sitting watching the tv with clenched teeth and the muscles in my neck going into spasm. The annoying thing is its not even a programme to get uptight about. Just cannot relax. More recently realise a glass of the hard stuff helps but cant be doing that all day every day so will one day have to get some counselling or diazepam…
I know what you mean. The doc gives me diazepam 5 mgs. He gives me 28 at a time, but
I only take them when a G and T stops working. Packet lasts me about 10 weeks.
Love Jean xx
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.
Great to hear from you. Been looking at wedding photos on Facebook. Looked like everyone had a great time. I hope you are keeping well (know that is a stupid thing to say – but you know what I mean). I will be going with Frank – poor man can't go any where without me!! Did you ask them how long it would take for results to get to Drake. Did you have to wait untilyour next appointment or did she ontact you? He never asks about resuls – rekons she will be in contact if anything to report. I will be on enderhooks until I hear the resuls. Frank has had words with her secretary as he could not get hold of her – she was on holiday. Mind you he still thinks she is the greatest thing since sliced bread.
Take care and hope your good days far outweigh your bad ones.
Love Jean 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.
Hi Jean nothing wrong with being a nutcase !! sorry poor humour sounds like counselling was really helpful for you Myeloma affects so many people not just the patient , my poor mum is not the same person since I got mm and she worries so much it affects her health too Snap I have an mri tomorrow too , I hate them !!Pain has disappeared since yesterday when I had my steroids so am waiting to see if it comes back when they wear off love Bridget x
Doing this from my phone as lost connection on lap top! Sorry to hear that you are having pain. This is such a shi**y disease. Hope you loose the pain soon. Frank and dr have had run ins. The last visit it was like watching top dogs vying for position. She said she thought he had cracked a rib he told her she was wrong and he knew his own body. Xray showed no sign if it, but I am glad he was sent for xrays.
That is brilliant of your brother will look out for photos. Tell him well done.
Hope we can still go on cruise. But Frank can't get insurance till 2 months before cruise so have to wait until 17 may. Hope results come through before.
Thanks Pamela and take care
Love Jean xx
I can understand how your mum feels. It's bad enough watching a loved partner ging through this horrible illness, never mind watching your child.
I hope all goes well tomorrow and I will be thinking of you and you will be in my prayers. Do let me know how thing go.
Lov Jean xx
You are perfectly normal. My husband had his SCT in September 2010 and has made the most amazing recovery. I have to pinch myself when i think about how poorly he was this time year. However I was weeping at the drop of a hat, and fearing for him all the time, watching him like a hawk and looking for any possible symptoms or tiredness, anything. I realised that I was dragging him down as all he wanted was to feel normal (as much as possible) again. I also realised I was spoiling our 'good times' with my fears. I went to see a counsellor arranged through his consulatant in our local hospital. This has been a great help and I am now much calmer. We can enjoy his remission without me worrying all the time.
I do hope you find a way to live with this awful disease as calmly as possible, I know how hard it can be,
Love Mari xx
Thank you so much for all your replies. It has really helped to know I am not over reacting. I am slowly learning to stop all the "what ifs", and just appreciate that he is well at the moment, and that we still have more treatment options. All in all, we are in a good place at present, even though we have this cruel disese hanging over us. Thank you all, xxx.
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