My dad is having a relapse

Hello! I'm new to this forum, found it online looking for places to find support. 

So,  a bit of context. My dad was diagnosed in May 2012 with multiple myeloma. It was a surprise because he didn't have any simptoms, it was diagnosed by chance when his diabetologist was running a bunch of blood tests. He was always fine, drove himself to his chemo appointments and all, so it wasn't that hard to deal with. In early 2013 he had a SCT and a few months later was told he was in remission. Now, we were told from the start that this was a cancer that came back, so we knew it was going to happen but it's one of those things that always catches you off-guard I think. 

Fast forward to the final days of September 2017, my dad is having severe back pain. One day he tells my mom to take him to the ER as he can't get out of bed. We were told it was probably a relapse from his MM so we called his oncologist right away and next week we were in his office. Long story short, he had 5 compression fractures in his vertebrae so he had to get surgery for that first. Right before his surgery he got a PET scan and it wasn't good. His spine lit up like crazy, and the doctor told us that meant he had a lot of cancerous cells in his bone marrow. Anyway, he got the surgery, recovered from the pain for the most part and it was back to the oncologist to start his treatment. However, he can't start just yet because he's risking kidney failure, so he's on some medicines and December 26th we're seeing his oncologist again to see if he can start chemo. He's optimistic that my dad can make it through again this time, but he wants to take a very aggressive route with his treatment because the cancer is very advanced. 

I'm so scared he's not going to make it. Last time it felt like he didn't really have cancer, but now he's so frail and weak that I can't imagine him going through all of that again. I look at him and I don't see how his body can take all of this. I want to be there for him but all I can do is sit around and cry and it's hard to focus at work and life. I know the doctor says he's going to be fine but it seems like he's hiding things from us. Then again, my mom is the one who takes my dad to appointments so maybe she's the one not telling me things. I don't know. I don't even know which stage he's in but I'm assuming Stage 3 based on his simptoms and tests results. I just can't deal with my dad dying. He's just 59 years old, he has so much to live for. He was this energetic person full of life and now he's a just a shadow of who he used to be. 

I just don't know how to have a life and go to work and out with friends when my dad might be dying and there's nothing I can do. 

  • Hi there hunny ... bless ya, it is so worrying when you love someone so much and you feel so helpless ... but my son was the same as you when I found out I had cancer ... and I did a fare bit of panicking too .. but my daughter in law got the two of us, and said o.k you've got cancer, stop the what ifs, face everything as and when it comes up, and we will face them together... it snapped us both out, and because my son stopped panicking, so did l ... and true to her word, she has held my hand through tests, and ops .. and 5 months down the line, I'm so much better, for having that advice... 

    So my advice to you, is get on this journey with your dad, hold his hand, and stay in the day ... and if they can see your coping, they may open up to you more ... even the strongest of us have a few tears and low days ... but then carry on together ... 

    If you can live in the day, you will be more help living your normal life, keep working, it will take your mind off things ... cancer wants us to lay down and cry forever, it has no compation, it wants us broken .. but if you get stronger, and face whatever his journey throws at you, you'll be putting two fingers up to cancer .. 

    Make as many good memories as you can, live every day, it's not weak to admit your all scared ... lots of hugs, and share a few tears too .. I'm living each day, making the most of things, and me and my son still find things to smile about .. I'm so glad to get his strong support ... sending you a big hug ... Chrissie  xx 

  • So sorry you are having a rough time.  We tend to take our parents for granted - even when we are grown-up they seem to be invincible and likely to go on and on for a good time.  Then something likes this hits them.  We think about all the years, how they have loved us and cared for us even when we have been a pain in the a... and we want to howl.

    Perhaps you could ask your mum to bring you up to date with al the information that she has - not in an accusatory way (you mention your feeling that she just might be hiding things from you).  Make a clear list of things you want to know when you see the oncologist.

    Nothing can alter the fact that this a very hard time for all concerned so I am hoping that you manage to get things straight and that you will all help each other with your love and mutual support .  I hope your friends are being kind and supportive as well.

  • Sorry for replying so late! Thank you for your words 'm trying to be with him and supporting him, I guess the hardest part is that we don't even know how bad it is because he hasn't started treatment yet. I'm hoping that once chemo starts and all, it will get easier but right now the uncertainty of it all is the hardest part.
  • Hi CC,

    I've been in remission from myeloma since Feb 17. Diagnosed in Oct 16 and now recovering from and getting used to side effects of treatment. Some will never go. 

    I couldn't have a transplant but managed to get complete response after induction, one of the 13% who do. Will have an average time of 2 years before relapse, so about 14 months to go. That's working from the statistics of course, which have nothing really to say about the individual, Could relapse next week or in years, so it seems pointless pondering on it or worrying. Hope your dad achieves another remission.

     

    Best Regards

    Taff

  • Offline in reply to Taff

    Thank you Taff and Annieliz, 

    My mom is taking my dad to see his oncologist on the 26th. I probably won't be able to go because of work related issues but she promised to write everything down and to ask the doctor any questions I might have so I'm working on that. We're doing our best so he gets better. 

    And Taff: I'm so glad you achieved remission!! My dad seemed to be more lethargic after his treatment, but overall he felt really good until the cancer hit again. I'm hoping you're feeling well!!

  • Offline in reply to CC_

    Hi CC,

    Lethargic I know, I've been fatigued all along, it's never gone away. After chemo, I did start to have short periods during the odd day when I felt 'good' but haven't felt it since the sepsis in June.

    Am fairly anaemic at the moment, haemoglobin at 96, just a bit above the 85 threshold that would trigger blood transfusion. I get short periods throughout each day when I feel very faint and nauseous but these pass in minutes. Just a case of eating more and getting stronger. As I tried to say before, we can go from very well to very ill to very well, almost as if there's a switch somewhere.

    I'll be looking out for your report after the 26th

     

    Best Regards

    Taff

  • Offline in reply to Taff

    Thank you so much Taff!! Yeah, my dad was lethargic and anaemic following his treatment but I felt he bounced bakc a little bit afterwards. He was always more tired than what he used to be but he could still have a normal life. I'm hoping thos moments of feeling very ill become less and less frequent tho! Wishing you all the best, CC. 

  • Offline in reply to CC_

    Same same.

    Another thing. I feel quite lucky in one respect - having myeloma, rather than any other cancer. Strange thing to say I know but true nonetheless. Some cancers are truly horrific.

    It seems that it's not like most other cancers. The tumours we get, plasmacytomas, are different from other tumours and, when we're responsive to treatment, appear to be relatively easy to get rid of. Not so if we start getting extra-medullary (soft tissue) ones but that's when we've got it seriously bad.

    For me, the side effects of treatments are the ongoing problems rather than the cancer. Don't have to think about the cancer until relapse. Until then it's all about quality of life.

     

    Regards

    Taff

  • Offline in reply to Taff

    Yeah, I feel you. First time around my dad had barely any symptoms so it didn't really feel he had cancer. Even now the cancer part it's not that bad, mostly the side-effects on his bones and all, that was the worst part for now. Still waiting 'til after Christmas, crossing my fingers he can finally start treatment then. That's the one christmas gift I'm really hoping for!!