sukie

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  • #123127

    sukie
    Participant

    Hi Mervyn,

    I hope you are feeling OK today and coping. After having put off going through the SCT process for the past 7 years, I am about to embark on it in the next few months. I have had various treatments during that time: Velcade, Revlimid, Velcade again and have now run out of options so I am taking the plunge. As I live on my own, it has been a big decision so I welcome any tips that you, or anyone else, can give me to help me through the process.

    I am about to start on a course of DHAP (normally used for lymphoma patients, apparently, but also being used for myeloma) to reduce the amount of cancer cells. Once they are down then the SCT will take place. Not looking forward to it but needs must, as they say.

    Best of luck with your treatment.

    Sue

    #118847

    sukie
    Participant

    Amanda, I am certainly no expert on benefit claims as I don’t receive any state benefits myself apart from my state pension. However, do seek advice from the people who understand these things. Macmillan in my area are wonderful and if there is a Macmillan nurse in the hospital your husband attends then I wouldn’t hesitate to ask her advice.

    Hope you get this sorted very quickly,

    Sue.

    #116279

    sukie
    Participant

    Hello, Treakle.

    Finding out that your Dad has myeloma must be scary but he and you will cope with it. I was diagnosed, aged 58, in August 2007, just a year after my husband died, so I have had to cope with the various treatments and attendant problems on my own. Yes, I have a wonderful family but I can’t and don’t expect them to run round after me. They have their own lives to lead and knowing that I can call them in a crisis is enough. In fact, I would go so far as to say that dealing with this rotten illness has made me stronger. From the sound of it, your Dad will cope wonderfully once he gets over the shock.

    Don’t try to whisk him away on holiday immediately. He will have enough to contend with coping with the initial treatment. He is bound to feel a bit off colour but it’s doable. Once he finishes the first round, then he will probably be offered a stem cell transplant. I didn’t have one because I couldn’t face the thought of being ill and stuck in the house on my own, but he may decide otherwise. Making your own decisions is very important so talk things through with him but leave the ultimate decision to him, no matter how hard it is.

    I have undergone a series of different treatments and they have all been bearable. I have also travelled abroad extensively and certainly haven’t locked myself away, fearful of catching all sorts of bugs. With two small grandchildren and a lot of friends, I am out and about as much as possible. Yes, my life has changed. I have several fractures to my spine, plus extensive  damage to my ribs which obviously has had an effect, and I get tired more quickly but I enjoy a very good quality of life. Your Dad will too.

    This isn’t the end for him. It’s just a new phase in his life, one that everyone wishes hadn’t happened, granted, but he will learn how to deal with it as you will too.

    Good luck to you both.

    Sue.

    #114231

    sukie
    Participant

    Hi Carol,

    Thanks for replying. I was starting to think I was the only person in the UK on Pom seeing as I had no replies!

    So glad to hear that Pom is working for you. As I said, I am one of the lucky ones as each new treatment has been highly effective for me. That’s why I was growing so downhearted when the Pom failed to do anything. That plus the horrendous muscle pain and stiffness I have been suffering from. However, I am relieved to say that the pain etc is starting to ease off. I am on cycle 5 so maybe it needs a certain length of time before the drug starts to work. I’ve no idea if it’s zapped my pps yet – they were still at 20 the last time – so I shall have to wait another couple of weeks to find out.  Fingers crossed!

    Best,

    Sue

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