multiple myeloma

Hi Skippy,

Welcome to this corner of the forum, although I’m really sorry for the reasons you have joined.

i am a similar age (41) with similar aged kids so have some understanding of how difficult these last few months must have been for you.

I’m pleased to read that you are in remission but understand what you say about still having a big hurdle in front of you with the stem cell transplant around the corner.

You’ll probably have already found out that with myeloma, it is a marathon not a sprint and I find not thinking about things too much also helps, just one day at a time and dealing with what is right in front of you.

Just wanted you to know as well that I am now over 4 years treatment free after my SCT, and things have pretty much got back to normal, so I’m really hoping that once you are through the SCT, you will experience the same.

Greg

Dear , I am sorry to hear you had to wait so long for you diagnosis, but don’t feel singled out as this is a common problem in myeloma and it’s something that needs to be improved. Well done on getting through your induction treatment but sorry to hear you have experienced what sounds like peripheral neuropathy which will hopefully clear up in the near future. Myeloma is a much of a emotional challenge a a physical one, so as greg has said you have to pace yourself and don’t try to predict the future. Just keep moving forward and when you reach an obstacle the doctors have many solutions to help you get round it. Research in the USA into myeloma is at at all time high with many new drugs waiting to get approval so being diagnosed in 2019 you are already at a big advantage in terms of options for the future, so there is lots to be hopeful about. But for now focus on a successful sct and your recovery afterwards as that’s quite enough to deal with for the moment. I assume by your forum name and greeting of gday you are in Australia, are there any support groups in your state ? A diagnosis of myeloma is a big thing to get your head round and will take time, but as Greg has stated the goal of treatment is to return you to a normal life even if it is a new normal, and he should know as he’s been there done that and bought the T-shirt as they say and is one of the most courageous people I have come across with myeloma.

Gday Jane 

lovely to  hear that thank you 

I’m Australian but reside in the UK now I’ve felt very alone in this process  so far until I joined this group last night already feels different as I can say what I feel and as I don’t know about you but I found a lot of people have left me too it so to speak as they don’t know what to do or say but staying away altogether is harder and you feel you don’t want to upset anyone either so difficult then I thought I just might be selfish and looking into things too much as now I found I have a lot of time on my hands

also haven’t had a great run with nurses and doctors as feel they have done there job now that’s it 

It seemed so rushed the whole process really one day I was in and out within 6 mins for my chemo injection even the appointment lady’s were shocked and told my doctor about feeling as I have gone back to before I started chemo he didn’t seemed to bothered and said it’s probably just side effects 

I am struggling at the moment emotionally as the last 2 years have been horrific as my wife lost her mum to cancer and we cared for her to the end which was one hell of a journey then her dad also got cancer and lost him last year then last Christmas our beloved dog had be put to sleep so it’s been a rough time now all these changes financially and the little things seem to be big things now like our car just blowing up and we are in a village so and been in the house for 3 weeks but as you say and Greg on day at a time I like to think normally I’m a positive person and put on a good front sometimes lol but I am suffering with a lot of pain at moment so may have to get that looked at but wasn’t sure if it was stress lol 

steve

Gday Greg 

Thank you 

you sound you are doing amazingly and I can relate to everything you say thank you nice to hear it from someone like yourself 

yeah im

just trying to focus on what’s coming up plus I have dentist in January as I haven’t been able to have the bone strengthening drug until that’s done just one day at a time and don’t worry about things that have no solutions at this time 

steve 

Dear it’s good that you able to open up about what you have been through and I think it will help you not to keep all your feelings repressed. A diagnosis of myeloma is like a emotional earthquake, there’s the initial shock waves followed by lots of after shocks but eventually the ground underneath you will settle but the landscape will look a little different then before. I can relate to your remarks about the perfunctory nature of receiving out patient treatment at the hemotology clinic, I was lucky to have a fantastic nurse who became a good friend during my treatment, she has left the clinic now and I have noticed the difference straight the way. I am currently working with my hospital to get better emotional support for blood cancer patients as I feel the issue has been somewhat neglected. I assume you have been taking steroids and it’s well known they can cause low mood, a heightened emotional state and insomnia so don’t be hard on yourself if you are all over the place. The thing to remember about hemotologists is they are more scientist than traditional doctor and they can be lacking in soft skills so it’s sometimes necessary to look outside for emotional support from people who understand what you are going through, whether that’s a myeloma support group or here in the forum. make sure you get good advice about any benefits you may be entitled to especially after your transplant.