keznmel replied to the topic Staging??? in the forum Newcomers 12 years, 1 month ago
Thank you Mavis – I tend to agree I think. If you have MM..you have it regardless!
I hope this finds you well – take care xxx
keznmel replied to the topic Staging??? in the forum Newcomers 12 years, 1 month ago
Hi Eve
Thank you for getting back to me with that. I have read lots of literature and have sort of worked it out myself ( i think). I understand the process of MM and what it all entails – I'm a bit of a researcher and send myself crazy looking up this and that! I also ask for copies of the information and always take my note book and pen and…[Read more]
andyg replied to the topic Two hospitals in one day in the forum Treatment 12 years, 1 month ago
Hi
I would like to thank everyone for all the good wishes. I must admit the thought of a sct had slipped from my radar and I was just coasting along. The meeting with the Prof. On Monday has brought it back into sharp focus. I knew an auto sct was off the cards for me and that an allo sct was ultimately the only way forward for me. Never the less…[Read more]
keznmel started the topic Staging???. in the forum Newcomers 12 years, 1 month ago
Hiya
I was just sitting here reading some posts and I just thought I would reach out and ask about staging. We haven't been told what stage Melvin is with the Myeloma. When I asked at the last consultation, I was told that due to Myeloma being an incurable type of Cancer, they don't stage it. basically, if you have Myeloma, you have Myeloma…[Read more]
keznmel replied to the topic SMM has become Myeloma – immediate treatment in the forum Newcomers 12 years, 1 month ago
Hi Peter…
You explained just how Melvin is. He said if it wasn't for the inability to work or resume normal activities due to the spinal cord compression, he would be able to live quite a 'normal' life while on the Dex. However – he suffers such a come down when he stops…like you, he feels so tired, almost lifeless. Only waking to eat most…[Read more]
keznmel replied to the topic Recently diagnosed in the forum Newcomers 12 years, 1 month ago
Hi Mike
I'm sorry that you are going through a tough time at the moment. It's my partner who is 39 who has Myeloma, and is also on the MXI trial, RCD. He is at the end of the 2nd cycle at the moment. I noticed that you go to the QE hospital in Birmingham. We live in Birmingham and Melvin will be having his SCT at the QE. What a fantastic…[Read more]
keznmel replied to the topic Any advise about organizing a fundraising event…. in the forum General 12 years, 1 month ago
Hi Tom
I have another person helping me with it all so I'm not totally on my own. Although I complain for being stressed at the moment, I feel like I need to inject all of my frustrations and emotions into something productive…if you understand what I'm saying. I may regret it, it may exhaust me but I feel I need something to focus on other…[Read more]
keznmel replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago
Thank you for your message Jo. People always say that I am coping really well and sometimes I agree. It may be the false smiles and 'I'm fine thanks' that I often reply when asked how I am. The way I see it – I have to cope, I have no choice. Who else is going to look after everything..Melvin and the children? Just sometimes, like now – I just…[Read more]
keznmel replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago
Thank you for your message Andy. It's very tough for all isn't it? Life completely changes when something like this sets up residence in your life and future. We have been referred to a Counselor individually and as a family, so our three children and myself and Melv can go. However..we haven't been yet as the Counselor cancelled the past two…[Read more]
keznmel replied to the topic So angry..fed up…angry….. in the forum Under 50s 12 years, 1 month ago
Thank you Helen..what a day I had yesterday! I do feel a little better today, although my moods are all over the place. Our twin boys, who are 11 years old have gone off for a little break with my mum. Suddenly my shoulders seemed to drop. We have a daughter who is 16 and she is still home with us but she is so independent. She is revising for her…[Read more]
keznmel replied to the topic SMM has become Myeloma – immediate treatment in the forum Newcomers 12 years, 1 month ago
Hi Sarah Jane..
It is my partner Melvin who has MM. He is 39 years old and like you had SMM and then one day went to the hospital to find PP levels had increased and he started Myeloma XI and also is on RCD.
Melvin is at the end of cycle 2 and I think he has coped quite well so far. Unfortunately he isn't working due to his L3/L4 vertebrae…[Read more]
keznmel started the topic Any advise about organizing a fundraising event….. in the forum General 12 years, 1 month ago
Hiya – I am in the process of organizing a Myeloma charity event in February 2013 and so far have got some very generous local dance acts and performers donating their time. I am wanting to do a raffle or an auction and want to approach local retail outlets and supermarkets for their support with donating prizes.
Has anyone else had any…[Read more]
andyg replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago
Hi Kerry
I think everyone has those feelings as a carer. I'm the one with MM but in a way my wife is suffering more. She has to worry about me, about her job which includes a hours drive either way, cooking, walking the dog etc etc and most of all what the future holds. I have damage to my back so I hardly ever drive now so I require lifts to the…[Read more]
keznmel replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago
Hi Eve – thank you for your message. I agree with you – I am grieving and I think going through each stage slowly. Today and right now I feel angry…the denial has been with me since 2010 when Melvin was diagnosed.
I hope you are well – take care and thank you again. xxx
keznmel replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago
Hi Vicky – thank you so much for your message. reading what you wrote was like I was telling the story…just how I feel. I have also thought about using all of this in a positive way, maybe volunteering somewhere or studying maybe?! Who knows.
I hope that Colin is OK at the moment – how are you doing?
Take care xxx
keznmel replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago
Hiya Tom – thank you for your message. We have something else in common..In May 2007 I was diagnosed with Fibrosarcoma, cancer of the soft tissue and I finally went into remission in June 2010 ..as Melvin was diagnosed with MM in the December. I have to agree with you regarding the comparison of feelings – I felt more in control when I was the…[Read more]
keznmel replied to the topic Still angry in the forum Carers 12 years, 1 month ago
Hi Lorna..
My partner Melvin was diagnosed with a Solitary Plasmacytoma on 15th December 2010, so our journey started nearly two years ago. Reflecting back to those days, I felt scared and unsure of what it all meant, I remember that. It was almost like I went through some kind of grieving stage??! Things have really progressed for Melvin now…[Read more]
keznmel started the topic I feel so miserable!. in the forum Newcomers 12 years, 1 month ago
Today I'm feeling suffocated! I'm frustrated and just feel like going upstairs packing a huge bag and running away so I can 'breathe'! My head is full off so much…'Has Melvin had his meds? How is his pain? What shall I cook for tea? Did I make the dentist appointment for Atlanta (our daughter)? How about the optitions for Dior (our son)? Has the…[Read more]
keznmel replied to the topic I feel so angry, frustrated, fed up…blar blar blar….. in the forum Carers 12 years, 1 month ago
Thank you for your message Jean. Guilt is a very powerful emotion isn't it? I think it can be a visitor in most situations. Unfortunately, I over think absolutely everything too and scrutinize myself..'have I done enough?' etc..
We have been referred to Counselling, although the last two appointments were cancelled due to the Counselor being…[Read more]
keznmel replied to the topic Two hospitals in one day in the forum Treatment 12 years, 1 month ago
Hiya – it seems to be all go for you at the moment. Fingers crossed that they soon find you a match. Best wishes Kerry and Melvin x