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Hello all,
I am a newcomer to the site.
My dad -who is 46 years old – was diagnosed with multiple myeloma at the end of last week. For 3 months he was severely unwell and was repeatedly sent home from the GP with painkillers for the “pulled muscle” in his back. After force from the family, my dad was chaperoned to the hospital and told that he is suffering from pneumonia and his back and ribs are in fact covered in small fractures. I am devastated by the news that the strongest man in my life is suffering from Myeloma – and the irony? June 21-28 2014 is Myeloma Awareness Week according to this site.
What concerns me from reading up on the disease is the apparent inability to lead a normal life due to continued treatment, and fear of infection. My dad lives alone, and I don’t know how this is going to work going forward. Does anyone have any guidance?
Secondly, I have always wanted to take him away to his favourite place in the world for a little father-daughter bonding. I am now done with my studies and in employment and the dream was getting close to becoming a reality. Is travelling abroad ever going to be realistic for my dad?
I know that everyone is different, and most probably no two people will react the same way; however I am hoping that you can provide me with a little bit more insight than the standard “facts” on every website out there…
Thanks in advance.
Good evening, so sorry that you have to be part of this group.
You have every right to be concerned, this disease is a bugger and effects us all differently. I hope that the following will give you and your dad some encouragement,I am 70 in August, was diagnosed with myeloma in early 2012. Was put onto the myeloma XI drugs trial, that lasted for 5/6 months, in early 2013 I had a stem cell transplant. The summer of that year we went on holiday to Spain, have had more than a few UK holidays and have been to San Fransisco and Hawaii. So don’t think that life comes to a jarring halt, it doesnt!
The various treatments can be harsh and some of the after effects are difficult but believe me they are doable. I am sure that others on this site will tell you their own stories but be assured we are on your side and all of us will give advice and encouragement.
Many of us tend to disregard many of the other sites, much of their info is outdated and rather scary.
Wish your dad all the best, tell him to remain strong, and I bet that in the nearness of time you will be taking him to his favourite place in the world.
Regards
Tony F
Hi Treakle (love the name)
As before sorry that you are on this site but there are plenty of positives. I was diagnosed in April 2014 after a number of months being treated for muscle strain by my GP (you can see my initial joining intro “Start of a long Journey”). Initially there are plenty of hospital visits but once the cycles begin, mine are down to every 28 days to pick up pills and potions, then you can start to plan. It might not abroad (I had to cancel a holiday to Cyprus) as my doctor was not happy for me to fly once the Thalidomide was started. It is not easy at the start, with pills at certain times and the monthly infusions but there is time off. Look for the positives, plan the holiday you want, but while you are getting into a routine why not have the bonding session in a cottage or such like. Does your dad work still. I was lucky in the fact I was due to retire anyway. Do you or other family live close to attend any appointments with him as even now when I come out my wife will sometimes correct me on what was actually said. You will read some stories that are sad but that is the nature of the disease but there are plenty of good ones as well. It is a shock to start with and there will be some downtime. If lucky (like me) a good cry and support gets me over the worse. I hope this helps you on the start of this Myeloma journey.
Regards
Graeme
Hello Treakle,
I was diagnosed in 2007 just coming up to 42, had the chemo and STC (Stem Cell Transplant) that year and I have been in remission since. We gave up looking at the internet at the time as there was so much information to take in from the hospital let alone all the added problems the internet was adding. I had a Hickman line in my chest feeding me the chemo over 3 days at home, the balloon was the size of a hand grenade and it didn’t stop me standing at the pub bar or going for a curry but flying was out during treatment due to the cabin pressure affecting the balloon. I think I was advised not to fly while the Hickman line was in, not sure though. Life went on as normal and the anti-sickness tablets were fantastic, I only came close to being sick once in the Marsden during the whole treatment. Living with the Hickman line became normal day to day life, you work round each problem as it comes, you have to.
From what you have said so far my first concern is your Father lives on his own, I would hate to go through that again living on my own let alone for the first time.
Don’t think ANY question is stupid to ask here or at the hospital, if anything is causing you any concern just ask.
Mike
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.
Hallo Treakle
I would like to offer a couple of tips. Encourage your father to attend appointments with a friend or relative. There is always so much information to take in and it is difficult to remember everything. The other is, he should try to always get a printout of his blood results if he can. I find this empowering as I then have a basis for questions. It also enables one to gain a picture over months of how the MM is responding to the treatment.
I hope your father soon gets settled on a form of treatment that he can tolerate well.
Annette
Hi Treakle, I hope you have gleaned from the above posts that life does go on, as normally as possible, once the initial treatment has sunk in and when you manage to get your head round it all – it is, however, a slow process to get to that stage. For me, (diagnosed at 51) the first few months were spent grieving for the loss of my old life, dreams and my future but you do become settled, take it in your stride, and start planning ahead. You will note on here that couples tend to go to all appointments, treatments etc and it seems all consuming and you take on their journey as well. For me, I went to all appointments, treatment alone, when I had my hickman line in I drove there in the morning and drove back later – I do have a supportive husband but he had work and why share the misery of it all? I felt. I tried to make it just part of a routine and shield my family as best I could – your dad may choose to do the same. I much preferred going to consults on my own, I bought a discrete Dictaphone off ebay so I could play it back later and not miss things (which I did a lot of) and my husband could listen if he wanted but I just filled him in. If I’d had him, or close family with me, I would not have concentrated on the consult as much, asked the “hard” questions which I wanted to know but not necessarily my family did. Guess I’m saying doing things on your own felt easier, for me, as I just focussed 100% on me without worrying about what the other person was thinking/feeling. So don’t insist that his illness is your illness because it isn’t, it’s your dads and you must respect how he chooses to deal with it, whichever way he turns. He will need your support but remember you are his daughter and dads try and protect daughters – just give him time and allow him to run his own race. My greatest desire from diagnosis was, and still is, to live a normal life and I have achieved this. I am 6 months post SCT – which I am sure your dad will go through – (and you will need to move in with him for a couple of weeks on discharge of SCT) and living life normally. My advice would be to don’t overly crowd your dad, let him get his head round it all, but do spend more time together dong normal things, nothing special, just time taking his mind off things for a while. Your mind, for a long time, is inevitably swamped by it all so diversions are nice. You will both get through this but remember this is a marathon not a sprint.
Best wishes, Rebecca
Note from WebTeam
Hi Folks
All the notification email to Treakle’s email account are bouncing so she won’t be receiving notification of your replies. There seems to be something wrong with the email address.
Treakle, if you read this can you please send an email to webteam@myeloma.org.uk so I can check the email address we have for you in the system.
Regards
Stuart
Myeloma UK WebTeam
Hello Treakle
I’m the same age as your Dad and was diagnosed Jan 2011, since diagnosis i’ve been to Portugal, Cyprus and a cruise so as others have said life does go on.
Don’t get me wrong its going to take a while (if ever) for your Dad to get his head round the illness but unfortunately it just becomes a way of life. I had my SCT in Sept 2011 and was in remission until last year. I’ve not long finished Velcade treatment and for the last 3 months have been drug free.
There are so many drugs coming out all the time to treat Myeloma so you need to be Strong & positive for your Dad as I’m sure He will be with you.
I work full time, i did have time off during my treatment just because I was so tired all the time – i still am now but its something that I know I have to live with so i just try and get on with it.
Like Rebecca I go to all my consultations on my own because I don’t want to have to worry about what anyone else is feeling and can ask my doctor questions that I don’t want my family to know the answers to.
Be a support to your Dad but give him time to digest what is happening to Him. Keep in touch on the forum because there are so many positive stories which will help you come to terms with things
Regards
Julie
Good Evening All,
Stuart was right, I mistyped my new email address out and didn’t receive any notifications so apologies for the delay.
Thank you all so much for taking the time to share your experiences with me. I am happy to read that each of you seems to be doing well, and long may it continue. You have no idea how much it has helped me to realise that this is not necessarily the end of a normal life for my dad and I hope that he too will one day have advice that could help someone in this position.
He gets home tomorrow. Exactly 8 days after diagnosis, and 2 days after starting chemotherapy. Still feeling very sceptical about it all – since he has 17 pills to remember to take each day (and 36 on special occasions). I have Laryngitis – from the stress, I would imagine – so I’m not allowed to see him until Tuesday and I cant be there for him with the transition. Its so frustrating! There will be someone staying with him for a couple of nights and then after that it’s learning time for us all.
Watch this space…
Thanks again.
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