[laurorParticipant]

My dad was diagnosed a week ago today which has been a devastating blow to our family as the only words I only really heard were ‘cancer’ and it is ‘treatable but not curable’.

He’s 65 years young and up until seemed healthy (ex-postman, retired but always on the go with his various hobbies). This was until a few months ago when he became really fatigued, breathless and could ruin a hankie from a nosebleed pretty much every day.

I’m so thankful that the GP who saw my dad in person (thank God) listened, observed and recognised that something wasn’t quite right instead of fobbing him off. It wasn’t just Covid-fatigue. It was something else and within a day he was getting checked out in hospital. My dad called it a ’65 year old MOT’.

My dad seems in good spirits and looks so much like his old self after several blood transfusions, CT scans, MRIs, lumbar punctures and a wee cheeky blood cleaning session. He’s just about to start on his first round of treatment (I haven’t got the abbreviations or drug names down yet). I just really hope he keeps that positive energy going but also communicates when something doesn’t feel right instead of sitting on it. Has anyone had husbands, brothers or fathers that struggle to vocalise what’s going on with them? Did this diagnosis change them to be more open about how they feel?

I’m trying to be positive outwardly but away from my mum and sister I’ve been stressing out about the news, panicking about how long do I have left with my dad, how long until he leaves a big gaping void in our family?

But after coming across this site and this forum, I just wanted to say ‘thanks’. Thank you to anyone who has replied to newbies with positive stories about their own battle with this horrible disease. It is helping tremendously to turn me from a negative Nancy into a hopeful Hannah.

And whilst this might be one of my only posts on this forum, I will 100% be lurking in the background to keep as informed as I can.

Thanks again,
Laura

• This topic was modified 2 years, 10 months ago by  lauror.

[kevinParticipant]

Hello Laura

I was diagnosed in 2006 and at present after 3 treatments in full remission. It is treatable and not curable with new treatments all the time, many since I was diagnosed. My personal situation is that I am positive and have no doubt each time it tries to have a go at me I will just beat it again. I have not delved into the fine details of it and the only thing I about are the paraprotein numbers. I let my consultant deal with the nitty gritty and when he tells me my bloods are ok and paraprotein not detectable that’s all I need to know. I have no trouble talking about it and no problem answering any questions about it as long as I can and on how I feel. I don’t think it has changed me a lot other than a few decisions I have made that with hindsight would have changed. also as I get older I cant be sure how I feel (physically) is because of it or old age or both. Saying that I intend to grow very old very disgracefully.
Best wishes to you and your Dad
Kevin

[mulberryParticipant]

Hi Laura
I was diagnosed almost 4 years ago at age 60, and it’s taken a long time to really understand that “treatable” is more significant than “incurable” in myeloma. I had feared that I was on a sort of slippery slope health-wise, but that really hasn’t been the case. During treatment I was quite fatigued, lightheaded and lacking in energy, but now my disease is not active, ” in remission” I have a perfectly acceptable quality of life, I can do anything, but perhaps not quite everything- that is I have to pace myself. But perhaps that’s just my age.
Myeloma is a particularly individual disease with different symptoms, challenges & responses, so one person’s experience is not necessarily going to be your father’s, but for all of us, the pace of drug development is incredible, treatments that extend life to the extent that for some of us myeloma will be a chronic disease like diabetes rather than a death sentence.
It’s important to try to keep hope alive and keep worry for the times you have something specific to worry about.
Unlike Kevin, I’ve found it helpful to “know the enemy” and have learnt alot about myeloma. There isn’t a right way of dealing with this diagnosis, just a way that works for us and for our families. Hopefully you will have your father by your side for a long time, perhaps a very long time. I know someone who has dealt with this disease for 18 years (& lives life to the full) and there will be many more of us diagnosed in recent years, who have access to recent treatments, who will still be around in the 2040s.
While I would never have wished for the diagnosis, I can say that good family relationships have strengthened and poor relationships have withered in my family since my diagnosis. Your love, care and concern will support your dad and your relationship will grow even stronger.
With best wishes, Jane

[tony642Moderator]

HI Laura, I am one of the peer group volunteers. I was diagnosed with MM 3 years ago. It hit me like a ton of bricks, as it also did to my family. However, my medical team were fantastic, and even though I was very ill with multiple failures, and complete kidney dailure they got my cancer under control with 6 rounds of VTD drugs (Velcade, Thallidomide and Dexomethazone if you were not aware). I was then offered ASCT (Autologus Stem Cell Transplant, Autologus meaning that you harvest your own stem cells rather than having to have them donated by another person) which I elected to have due to the likely positive outcomes it can provide.

This teatment was also very succesful and I am now able to lead a normal life. The cancer has been inactive for over 2 years.

The word Cancer is awful and strikes the fear of God into you when you hear it, but is does not always mean it is a death sentance. With the right tretment, and I think with the right positive attitude, there are a lot of people who have lived for many years with the condition. Of course everybody is different, and there are no guarantees, but there is always hope! I found that the support of family and friends to be absolutely vital in me getting my head around things and putting them into perspective. It has also changed the way I view things and appreciate what is important to me.

I wish your father well and hope that he feels better soon.

Regards, Tony

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