This topic contains 9 replies, has 7 voices, and was last updated by 
Hi,
I am new to this forum, and after reading so many of your stories about your loved ones who have MM it really put things into perspective. My dad was diagnosed with MM in July 2013 after a long 6 weeks in hospital with what the doctors diagnosed as a kidney infection. My dad obviously took this news terribly, he is not one to talk about problems anyway and he certainly didn’t want to discuss this with me. Over a year on, and I still feel like I haven’t had time on my own with him to talk and share our feelings; I don’t live with him which I suppose is the main reason as to why getting time alone with him is so difficult. I am only 18 and I suppose this is another reason as to why my dad may be finding it so hard to come to terms with his illness and sharing his feelings with me as he doesn’t want to hurt me.
I don’t want to feel like I’m troubling anybody, but some advice on how to have this conversation with him would be great. As I’m sure the majority of you of had to sit down and discuss this with a loved one.
Thanks,
Rhiannon
Hi Rhiannon,
After reading your comments, my heart goes out to you and at such a young age, you should not be facing the situation with your father and his illness. Myeloma like any other cancer, knows no boundaries.
I too am a MM sufferer but at the moment, I am still at the smouldering stage and trying to do what I can to stay there. I have two sons who also live away so there is some physical distance between us. It was difficult for me to tell both of them what I am suffering from especially as my eldest son lost his wife to secondary cancer at the age of 31, around 18 months ago, so he was pretty devastated to learn that his father also had another form of cancer.
We have always been a close family and talk on the telephone/FaceTime on a regular basis so am lucky in this respect even though I don’t see them face to face as often as I would like. It must be more difficult for yourself if you father does not want to discuss his issues with you, but if this is his wish then it’s something you have to try hard to understand and respect – but I can appreciate it is not easy.
All you can do is be there for him as much as he wants and just let him know this. Pick up the phone as often as you can and tell him the things that matter to you and perhaps he will at some point open up and tell you the things that matter to him.
My thoughts are with you.
Regards,
Robert
Hi Rhiannon,
you sound like a fantastic young man,strong of character, and a real credit to your dad. I have a hunch that your dad thinks that by not talking to you, he is protecting you.
I am 64 and have had MM since December 2012. My children are 40 and 43 years old, and I have grandchildren of your age.I went through the motions of trying to protect the people I love from the ‘ins and outs’of it all and kept my feelings well hidden.However,at some point I realised this was worrying my family more, so we talked openly about it, and supported each other through the first few scary months.
Have you told dad that you need to talk it through with him for your own sake, so that you can be of support ?
My advise (as an oldie), would be to phone him often,tell him you love him often and let your dad’s emotions unfold little by little.
As for your remark about not wanting to trouble anybody…..well, you can put your questions and feelings on this site at any time without fearing being a trouble . People on here are wonderfully supportive .
Take care,
Lesley
Robert – Thank you for your kind words and advice.
If you don’t mind me asking, how long have you had MM? Its fantastic that you and your sons have such a great bond and are in contact regularly. Your son sounds like a tough individual, characteristics he has inherited from you no doubt! I’m sorry to hear about the loss of his wife, like you said.. it shows no boundaries. I can imagine how devastating the news was for him, but more so for you I’m sure. I’m a strong believer that every cloud has a silver lining and no matter how hard and exhausting times get, family are always there to strengthen and support you.
My thoughts go out to you and your family,
Thank you again.
Rhiannon
Lesley – Having spoken to several people, they have all said the same thing. That by keeping me out of this part of his life, he is protecting me. But that still doesn’t stop the confusion and hurt from my part. I understand his intentions are good, him wanting to protect his only daughter.
With you experiencing similar/if not the same emotions as my dad its refreshing to know that you let your family talk with you about it as I can only begin to imagine how scary the first few months would of been for you.
I haven’t spoke with him about it for a long while now, and for several months I have just ‘brushed it under the carpet’ and kind of hid from it, which I know is very wrong. I’ll take your advice and contact him to talk about it.. let him know I want to be involved and care for him as much as his other family do.
Thank you, I really appreciate it.
Rhiannon
Hi Rhiannon,
I am 62 years old and was only diagnosed some 4 months ago. I had a MRI scan for a long standing back problem which by the way, was totally separate to the Myeloma which they actually found during the scan, so a real shock. As I have said, I do however, consider myself one of the lucky ones as I am still at the smouldering stage but saying this, I wake up every morning wondering if this is the day that I will start to feel any different.
We do indeed have a very strong family bond as for many years we lived and worked in the Middle East where although there are huge problems, we learnt that family is everything. I firmly believe that because of our exposure, we have the family bond that we do, which is indeed something very special.
When I read your plight, I felt an extra sense of empathy towards you, as you are exactly the same age as my wife was when she found out that her mother was suffering from cancer – and guess what, it was Myeloma. This was in 1970 and she lived for 10 years and sadly passed away in 1980. It’s over 40 years since she was diagnosed and although huge steps in treatment of the symptoms of the disease have taken place, there is still no cure.
Put an arm around your father as much as he will allow which is all you can do. Just be there for him and I know that in time, he will also know that the time is right to allow you to get a little closer.
Stay positive and both you and, your father are in my thoughts.
Regards,
Robert
Hi there – I’m 52 and my daughter is 16 and as the old saying goes you “protect those you love” we don’t share any of this part of my life (actually I don’t share it with anyone) – I don’t want her worrying and I always look so well and am active so I guess/hope she thinks I’m ok as I act it. Read all you can on Mm and if you want to have that discussion then perhaps start it based on your research – if he knows “you know” he may be much more open to discuss it or upset…I never discuss my condition with anyone except on this site – I choose to lead a normal life and, as such, do not want to taint it with such discussions. I have to say I have never felt “any better” by discussing things personally but if my daughter really wanted to talk I would – but only for her benefit not mine – so you have to really think what you hope to gain from it all. Like me, I am quite sure your father accepts his condition and just wants to lead a normal life – cancer sucks so why give it air time? – I would much rather just have a lovely time with my daughter than talking about doom/gloom/death. I tend to block everything about it out of my life – it is a “compartment” that is opened when necessary. Think carefully what you hope to achieve – do you want your dad to know how much you love him? if so then tell him – have those conversations – you don’t have to link it to MM. I suspect your father, like me, doesn’t really require your extra strength and is coping Ok, in his own way – everyone has to run their own race and we all differ how we do it. Be quite clear what you hope to achieve – write a list and then analyse the ways in which you can achieve those objectives – is it all linked to talking about a chronic condition or can you get what you want by having other discussion? there’s always more than one way. Good luck
Rebecca
Hi Rhiannon,
I lost my dad to MM in July. He was diagnosed at 44 and died aged 63, which was an amazing length of time, one which i hope other sufferers can follow. I grew up from age 12 with my dads illness and even then we found it difficult to talk about it, i think mainly due to them wanting to protect you, something all parents want to do. Also it is a very scary time for him, so he is maybe just trying to get his own thoughts and feelings under control before feeling comfortable to talk about the situation. In all honesty though, my dad never spoke with us about it, it was his way of coping and you might have to prepare yourself for that type of situation. For some people its better to just look forward, and not discuss their fears or concerns for fear of it consuming them. Cancer did not define my dad, he didn’t dwell on it around his friends and family. Im sure he had some very wobbley moments but the key for him was to change his attitude and decide that this illness was not going to effect the person that he was, so you never heard him complain, even when things were really bad. to him cancer was an inconvenience that stopped him from doing some of the things he loved, so instead he would try other things. You have to take your cues from your dad, let him know that you are there should he want to talk about anything at all, then give him the time and chance to determine if he does actually want to discuss it. Its hard on you I know, believe me, all I wanted to do was ask Dad, was he scared? did he need to talk about anything? but dad never did, he rarely spoke to my mum either, it was just his way. You will know soon enough what ways your dad will adopt to cope and then you just go from there. If you find that you need to speak with someone, maybe someone not as emotionally attached, I’d suggest the Macmillan nurses at your local hospital or hospice. They were a godsend to us, not just for my dad but for my mum and sister and myself. They were practical and caring and able to give you all the information you need, and of course this type of forum is great to be able to chat with carers, family and people actually suffering from MM.I hope this has been a wee bit of help for you, stay strong and keep chatting with your dad, in time you may find he opens up about everything but he will appreciate knowing that you want to help,
take care
hmj
Hi Rhiannon, I think that I know how your dad feels- he’s probably desperate for you to lead a normal life and to be as carefree and lighthearted as any other eighteen year old. I’m mum of an eleven and eight year old with smouldering myeloma and i can’t bear the thought of ever telling them because i’m scared of the burden that they will have to carry. I just want them to lead normal lives and to be free and happy and to spend their childhood laughing and enjoying the innocence of youth. I feel terribly guilty because I will inflict pain and suffering on them and the thought of this breaks my heart. Having myeloma makes me feel like a bad mother – my children don’t deserve to have to deal with this. I’m smouldering so I look and feel healthy and as long as this remains the case, I can hide the terrible truth.I’m not afraid of eventually dying but I am afraid of leaving young children to fend for themselves. I want to be there when they choose their options at secondary school. I want to be there when they open their exam results. I don’t want them to stand aside and watch other mums and feel sad. I don’t want them to cry every mother’s day. I want the absolute best for my children and I know that I’ll fail them. I would do anything to avoid leaving them. Every day, I watch them laughing and having fun and I think to myself – laugh hard now, enjoy it while you can.
Hello,
My mum was diagnosed a couple of years ago and is at the moment very healthy and enjoying life but having seen the horrendous pain she went through being on the strongest chemo I have to say I am scared of the future. I appreciate you cant worry about what may happen and when but I find it hard at times to imagine going through all this again and seeing her in pain. I dont yet have a family of my own and as all mothers do my mum wants me to be happy and settle and have a family and she really cant wait to one day be a grandmother. I dont want her to miss out on these things and It just doesnt bear thinking about loosing her. She is so strong and positive and an inspiration to me and others but how do you live without fear eating you up inside and how do I know she is ok without making her upset by talking about it all.
The topic ‘Still finding it extremely hard to cope with my dad being ill’ is closed to new replies.
