[thesaintParticipant]

Hi there, my names Beth , just before the weekend I found out my father had been in hospital for a week without telling my sibling or myself ( my sibling was away and therefore they thought it better to find out exactly what was going on with my dad . He has never been ill always a healthy man so has my mother and always active but I felt so annoyed that they hadn’t told me at least . I feel they know more or if they don’t they are keeping it well concealed but it’s making me feel powerless . Today being Father’s Day I was supposed to be visiting then the time of the texts changed to come down at 1 to oh actually I don’t think he wants visitors come yourself ( not my whole family) to then I’m phoning nhs24 and she’s still not had a call back and that was hours ago . Apparently he’s suffering pain in his stomach ? I have been researching myeloma as soon as they told me however I have been left with more questions than answers . I thought surely they must know after 10 days in hospital what type of myeloma it is ad I know it can spread etc and how far advanced it is etc but when I’ve asked they are saying they don’t know … this concerns me I used to be very close to my father and the thought of losing him is awful. He is going to receive his first session of chemotherapy tomorrow but he hasn’t gotten and medication or anything for the pain it’s ridiculous! I really would like some advice on this and if anyone can perhaps shed some light on what’s causing the pain in his lower abdomen for the past few days as he’s felt ill since Wednesday.. any help u can provide , any and all insight would be much appreciated … I need to feel like I know what I’m up against .Ive read something’s and watched videos but I’ve always felt speaking to people first hand is better for receiving the support and gaining the insight from their experiences ..

 

thanks in advance

 

Beth

[greg777Participant]

Hi Beth,

i noticed no-one has replied to your post so I just wanted to say I hope your father is doing as well as he can and that you have more information regarding what he is facing. I have learned over the past couple of years that myeloma can present in lots of different ways and can be a very individual disease (sorry I have not personally come across the lower abdomen pains). My advice would be to follow the lead of your father’s medical team as they will know what is best for him. And try not to read too much into Dr Google as it can sometimes be unhelpful. But please use forums like this, whilst myeloma can be an individual disease there are lots of lovely people on here who have or are currently experiencing what you are going through, so please use it as much as you need.

All the best,

Greg

[davidainsdaleParticipant]

Hi Beth

Sorry to hear about your father’s diagnosis of myeloma. Hope you are coping.

There’s lots of information availbable from Myeloma UK.  I would also suggest speaking to one of the nurses on the helpline if you have any questions, or attend one of the Infodays or make contact with a local myeloma support group.

I agree with everything Greg says above and how difficult it can be when myeloma first raises it’s head.  As a patient myself I was first diagnosed in 2013 and had a bad time to start with but quality of life is now much improved. They say that it is a very individual disease so it is sometimes hard to compare one person’s experience with another. On the positive side there are lots of treatment options available and new drugs on the horizon. They also say that having a myeloma is a marathon not a sprint.

Hope this helps.

David

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