Well hello….

HI  Likka    welcome,   a few great  forum users will respond,  but you are so right,  that the treatments for MM are great,  the staff that deliver them of course,  but often our Mental Health  can be overlooked,   the   guilt,  the frustration of not being able to do the things that were so easy before.    i am male 69,   2.5 year post stem cell transplant,  and    have to say,  the new life is good,    MM  is still at bay,  with no  treatments now,     the side effects from the treatments   are the worse,  Neuropathy,     i have  frequent blood tests and  4 month check up with consultant.     life is good,     you seem positive,       treat yourself to good things,  that helps me,  a simple coffee out,  with a newspaper,      as you say,   life is good just a bit different,    and the people that love you will care for you anyway !   Kevin

Thankyou for your very supportive reply sweetie, it makes me smile to know there is light at the end of the tunnel. 2.5years is fantastic… here’s to many more xx

Hi Likka  and I am dropping in past to give you a warm welcome to this corner of the Community and to an amazing group of people. I am Mike and I help out around our various Blood Cancer groups. 

I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a very rare (8 in a million) incurable but treatable type T-Cell Low-Grade Non Hodgkin’s Lymphoma……. eventually reaching Stage 4a in late 2013 when a second, also rare fast growing type of T-Cell High-Grade Non Hodgkin’s Lymphoma was presenting…..

So although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well…….. especially as I have had 2 Allogenic (donor) Stem Cell Transplants (June 2014 then Oct 2015)…… I turn 71 next morning and I am continuing to live a great life…. there is indeed light at the end of the tunnel.

As always the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hi Likka.

You are indeed far from alone!

A couple of tentative thoughts and suggestions:

Firstly, you are some way through treatment already. There is light at the end of the tunnel! Then the fatigue will start easing off. 

I understand the guilt of feeling like a burden. I do what I sensibly can, when I can - although I have been in remission for well over 3 years, the maintenance leaves me with a little residual fatigue. I also have a condition called POTS - Postural Orthostatic Tachycardia Syndrome (don't think that I have mentioned that on this forum before) - which means that I struggle to stand in one place or bend over for long. This makes a lot of household chores difficult, impractical or simply impossible. You wouldn't believe how long it takes me to unload a full dishwasher!

I try to help the rest of the family with the things that I can do. I do most of the shopping, lots of admin, and I drive people around locally (such as to/from the local railway station). Meanwhile, I am simply around for them, such as giving advice and information to my kids, encouraging them in studies and work, congratulating their successes and commiserating with them when things don't go so well.   

In life, we all need help sometimes. It's nothing to be ashamed of.

Hi Mike, thankyou so much for your kind comments, and your positivity, it genuinely means a lot x I’m usually a very positive person, but lately I can’t shake this doom & gloom feeling so I love hearing from others, like yourself who are absolutely bashing life x 

Thankyou for your reply sweetie, you are right with regards to other things I can do to ease their burden. You sound so positive, I love that, and look forward to those days. 3 years in remission is amazing, here’s to many more for you x

Hi Likka  when I was first diagnosed way back in 1999 the then median survival for my first Lymphoma was set at 3-5 years….. all these years on the development of treatments for blood cancers, not just Lymphoma has developed significantly….. turning the tide on many cancers.

Trust the system to do its thing for you.

Hi

My name is Jo and I was diagnosed last Autumn and began treatment in January.  Welcome to our Forum.

I can relate to your feelings of guilt but wanted to add to what others have said.  I firmly believe that people only help if they want to so it’s important to accept help and even ask for it when you need to.  

There is light at the end of the tunnel and difficult though it might be, it is possible to learn to accept help without feeling that help needs to be repaid. 

I send you my very best wishes and, as you’ve acknowledged, life can be different yet still be good. 

Oh my… 27 years! I am in awe of you already!!! 

I’m a great believer in trusting the system sweetie, just wish I could shake this low mood… its driving me mad, hopefully after the SCT I’ll be back ti my old self :) 

Thankyou for your kind reply sweetie, I am feeling so much better today, my hubby & daughter are amazing, i am just used to being the one looking after them, so finishing relinquishing control a little difficult x 

Sending love x