Well Karen, you’ve had some day – seems like everyone’s after your blood! It is awful finding that the hospital appointments take over your life. I felt like that at the start of this journey, but hopefully after the 22nd it’ll just be 2 monthly. Thank you for the info about the bloods – I’m not surprised they need an armful going by the number of tests they do. I’ll ask for the forms for my following appointment when I’m there.
I’m sorry you have the Haemachromatosis to put up with too, there’s always ‘something else’ isn’t there? Mind you, I think you were lucky only waiting half an hour at the clinic today, that’s an awful lot of folk to be waiting.
do you think you’re coping well Karen? I think I am, and then it’s as if ‘Cancer’ jumps into my head and won’t go away. I feel like there’s a gun at my head sometimes but nobody can see it. I look the same, nothing’s broken no-one knows, (I don’t know) how ill I am – or not. I think something quite simple could cause meltdown, doesn’t it just depend on what you feel like at the time. I’m still coming to terms with it, still confused. Had I stayed in Oz I would have had most of the treatment now but not here, watch and wait.
I did have a good hour today, Jo from Lavender Touch came to give me a massage, now that’s what I call being pampered. Anyway Karen, I’m glad you’re on the ‘up’ again I hope all goes well with your scan. Stay as well as you can be. Karen
Thanks Ted,
I’ll know what to ask for when I’m there. I realise the doc doesn’t know much about the Myeloma, she just goes by the letter from the Consultant. I only go to my GP for other stuff, like two chest infections in 6 weeks!!
i hope everyone is doing as well as they can be, I’m enjoying this glorious weather we’re having at the moment – no need to go away when the weathers this good. Stay well , Karen
Great news Susie, I hope they can sort out the compressions and help your arthritis. It’s sad isn’t it, I don’t think there’s one of us with just Myeloma, we’ve each other problems that don’t help very much! I was surprised you went in your MRI feet first , never heard of that before!
Enjoy your time before your next appointment, and I hope it all goes well for you.
I mentioned getting my bloods done before my appointment, that was a waste of time, doc said she wouldn’t know what to test it for! Maybe next time when I’ll be able to tell her then. Just have to wait till it’s all done and presume I’ll get a letter in the mail. It’s not till 22nd so I’ve a few days to wait. Do they let you know para protein levels etc. when letting you know your results? I thought Karen might know, I’m still new to this, almost 4 months and I can’t get it out of my head that word Cancer crops up a dozen times a day into my head and I’m still scared!
i hope everyone is coping okay and improving all the time, be well. Karen xx
Thanks Karen, I might have a word at the Surgery to see if I too can have mine done 2 weeks before. It seems a bit pointless going to see the Consultant without having had them done. You’re so right, the NHS is most definitely one of the best things this country has. I wonder why you have such a long wait though, I’ll have to wait till my appointment to see if I too have to wait that long.
Thanks Tony, you’re not interrupting our conversation, you’re joining us – we’re all pleased to have any advice, your input is appreciated. It seems the norm for bloods to be done beforehand, being a pincushion is just one of those things!
Hi Val, nice of you to join us. So young to be diagnosed and to have treatment. I’m so glad you’re in complete remission, well done. I hope you stay well and keep fighting.
Thanks Karen and Tony, enjoy this good weather while it lasts and stay well.
Karen
Hi Karen, that’s great – another two months eh? I hope you’re feeling well, making the most of this good weather that we’re having. Did you say that you might be going away after this appointment? If so I hope you have a lovely time.
I hope you don’t mind my asking – did you have your blood tests done before you saw the Consultant? I haven’t been told to do that, so I presume I’ll get my bloods done at the time and then have to wait a couple of weeks for the results ! Stay well,
Karrieanne
It is great Ted that you’ve been smouldering for 7 years and very unfortunate Nick that you only had 2 months before treatment. I’m newly diagnosed, I was okay at the end of May and I have my next appointment in July. It is scary, I also have Coeliac disease and osteoporosis, when I had mt Dexa scan to measure density I had a lot of bone thinning. I’m just scared now that the Myeloma could cause lyric lesions where the bones are thinnest. It’s worrying but I’m trying now to put it to the back of my mind, the radiotherapy treatment that I had for my shoulder pain has done the trick, I’m now able to go for a walk and do the jobs I couldn’t do for the last two and a half years, I can start driving again (if I’m careful with the painkillers) so I’ve got some independence back!
As you said Ted, everyone’s different, with a lot of luck I might smoulder for as long as you! Good luck with the treatment Nick, I don’t know how I’d cope if it were me.
I too love “the head is a shed” quote, that just about describes my head at the moment and probably a good few others!
All the best, Karrieanne
Hi Karen, thank you for your reply of 10th. I have had a lot of time to read the Myeloma UK site, it really is full of information.
There are an awful lot of people in a worse state than I am.
Two monthly monitoring to see how the Myeloma is progressing sounds good, now why didn’t I think of that? You have a wealth of advice for which I’m thankful. I’ve been a bit down, a bit scared and having no-one to talk to (my partner doesn’t want to hear it) hasn’t helped, but now I seem to be getting out of this rut, I’ll take one day at a time and try not to think about it! It’s a bit scary reading about others and their treatments and I really hope everybody gets well and doesn’t have an awful time with their treatment.
I will keep reading these posts, let me know how you’re getting on, I hope you stay well. If my status changes I’ll let you know.
Thanks again for your advice, Karrieanne
Thank you Karen for your reply, I was in Oz for 4months with my 2 boys and their families (my only family) when my back pain got so bad I went to their GP, within 2weeks I was diagnosed with MM. Had I stayed over there I would have started treatment the following week (March 31st) but I came home, had all the tests again and still the same diagnosis. The difference here though is no treatment, it’s watch and wait! Reading your earlier posts I can understand you feeling a bit battered and uncertain – that’s how I feel. This Cancer is frightening, can it go from Asymptomatic to Active in days or weeks? And I wonder what causes it to change. I feel very confused. I have Coeliac disease which in turn has given me osteoporosis but until now I have been well, my weight has dropped to 40kilos so I’m cramming in the chocolate! It’s interesting to know that you get hot too my Consultant said it had nothing to do with MM, I disagree, this came with the disease and it’s very unpleasant.
I can relate to how your friend says you look so well and yet an acquaintance can ‘see’ that you’re not. It’s one of those hidden things, if you can’t see it you haven’t got it. My sons weren’t shocked, they said they knew I was going downhill before I got to Oz, that’s the reason they made me go to the GP. If I hadn’t I would still be crying with back pain and getting nothing but more and more painkillers!
thank you for your support Karen, you’ve made me feel like I’m not alone I do hope everything goes well with your appointments, I hope we are Asymptomatic for a long long time. I will visit this site now and again there’s a lot of useful info, and to be honest it’s nice to ‘have’ someone to talk to now and again that’s going through the same thing. Keep us all posted how you’re getting on and I’ll do the same. Best wishes Karrieanne x
I’ll go by Karrieanne ( there’s another Karen ). I to have been diagnosed with Asymptomatic Myeloma, having had all the scans, blood tests and the bone marrow biopsy I’m. Now on two monthly appointments. I don’t know any of the figures, that is the para proteins and light chains etc., I didn’t think to ask for them. I’m wondering if it’s better not to know! I have had over two years of pain in my left shoulder blade, I have had radiotherapy, just one treatment, and I’m absolutely thrilled to say that the pain is almost gone. The radiotherapy and the painkillers have given me my life back. The. consultant said she didn’t think the pain was caused by the Myeloma but if it improved with the treatment then agreed that the Myeloma was the cause. Had I been diagnosed earlier I wouldn’t have had all this pain, which has had me in tears most days, unable to do normal things like ironing or standing , now I’m ‘back to normal’, I’m going to start driving again, I can stand a while and I can smile again!
A wonderful Charity called Lavender Touch, for people with Cancer in the Borders, have very kindly given me massage, a lovely lady called Jo has been twice and will be coming again to give me another four massages, such kindness. Myeloma, to me, is invisible – no one can see it, sometimes I have really bad days others are great but on the bad days I feel like a fraud. Does anyone get excessive sweating of your head face and neck? I have to change pillows through the night, sometimes pjs’, and it’s so uncomfortable. Is it a symptom of Myeloma? I would just like to know.
This is an awful way to live, two months at a time. I try not to think about it but it’s not easy. My eldest Son said treatment should start before I’m broken but my youngest Son says fair enough, they’ll be checking up on me regularly. I hope everyone using this site stays well, or as well as can be expected and I’ll be visiting regularly to see if you’ve got any tips for staying Asymptomatic and whether to ask for my results on these hospital visits. Thank you for reading this. Karrieanne x