Any advice on coping appreciated

Hi Andy,

I am so sorry to read about what you are going through, it sounds truly horrendous.

Have you got someone outside of your family you can talk to? I always think making sure you’ve got access to a support network outside your wife and children is a good idea - I’m sure you’ll all have lots of difficult emotions and sometimes having some space to talk about them outside of your immediate family can be very helpful - please use this space as much as you need it, talk to friends, GP, anyone basically.

I can only offer a patient’s perspective, and yes whilst I’m sure your wife is going through a truly dreadful situation, you should never feel any guilt whatsoever that you are letting her down in any way. I spent a long time in hospital and hated being away from home and I’m sure my wife felt guilty, but there was absolutely zero reason to feel this. It is the situation to blame, not any person. It is crap, terrible, horrendous, but you are not letting anyone down, you are doing your best in a situation that would be horrendous for any human being to deal with. Sometimes clinging on is the only thing you can do. Living in the moment is also very advisable - don’t over-think, don’t fast-forward to some imagined future, try to focus on what you can do in the present. Keep yourself actively distracted.

My heart goes out to you Andy. I am almost 5 years post-treatment now and the memory gets fuzzy, but I’ll never forget those darkest times, they were truly horrible. I’m hoping for some positive developments and sending you as much strength as I can muster.

Greg

Thank you Greg.

I have two work colleagues who have become more like friends who I talk to on the telephone and internet video calls a couple of times a week but it is difficult to talk sometimes.  Neither of them mind if i break down or have nothing to say.  Of course at the moment socialising is impossible so it's mainly me and "the kids" at home.

Your heartfelt reply was good to read, and made me realise i am partly focused on the imaginary end, not the here and now. I will try to think differently.  I think it's the not hearing anything sometimes for days on end that makes it more difficult.  I often think the old addage "no news is good news" then i get a call and it seems to have gotten worse.

Like everyone going through this says, there are good days and bad days.  At the moment they mainly seem bad.  The good news though is today my wife is in a normal ward having been discharged from ITU. The bad news is they dont know why she keeps crashing.

I am glad you are 5 years post treatment, that gives me hope too. May you stay in remission for many years to come.

Andy

Thanks Andy.

I am pleased to read about your wife coming out of ITU, I really hope that it is a positive sign of better things ahead. I did all of my treatment when Covid didn’t exist so I can only imagine it must be incredibly difficult to go through all of this with that added in on top. The bad days can seem never-ending, but they will end. I definitely learned the hard way not to try to imagine when or how they will end. It’s incredibly hard, but if you can train your brain to focus on the present, I definitely found that to be the best way to help get through some really rough times. I tried to acknowledge that today is really bad and just tried to muddle through it the best I could with the trust that the bad times can’t and won’t last forever.

Sending you and your family all my best wishes.

Greg

Greg you are wonderfully kind to always help out on this site. 

I understand every word you have written. My husband has just had his 56 th birthday in hospital in February m. He has been in hospital since end January with aggressive myeloma. He had a caught 2 infections since admittance and struggling. Too poorly to start his aggressive chemo regime. Our fear is will his body be strong enough to cope with what’s ahead. 
We also have two young  adult children at home and I am also off work with stress.
I hope we find some support/ answers on here too as it is lonely and so overwhelming. 

Hi 162,

Thank you so much for your kind words and I am really sorry to read about your husband, what he and you are going through sounds really awful. Whilst I have not had experience of the specific situation you are in at the moment, I do have the experience of the body being really poorly and wondering what the next day holds, and I also have the experience of the body recovering and getting back to where it used to be, so I am really hoping that this will soon happen for your husband. The real key is to get on top of the infections so that he can start treatment, as when treatment starts and it starts to get on top of the myeloma, I have seen lots of people improve really quickly. Here’s hoping that the medical teams will be able to get on top of the infections really soon and that he starts to get on top of the myeloma once the treatment starts. I know it is really hard to do but I think all you can do at this point is focus on the day to day. I am sending you loads of warm wishes at this very difficult time.

Greg

Greg what an excellent ambassador you are on this forum. Kind generous with your time and supportive. God bless your good heart. I drank in every word you wrote as I needed each one right now. Thank you. They are starting him on the PACE today. Please pray.