[eveParticipant]

Hi Jean

Frank is so like Slim!!!!!,If Slim new about me talking on this web site he would,go off on one.He was a commando marine for 22 years,use to being obeyed the only good thing about him being so stubborn is it just might be the one thing that helps him on this journey.He is a fighter with the believe he can do it and in my own way admire him for it although many times I think he is wrong.
My way of coping is (his body his choice) ,although you might notice it is 4 oclock in the morning I am wide awake,he is sleeping like a baby!!!
He has always maintained in life, if you cannot change something why worry about it and it works for him.
Frank will end up not telling you when he has pains,if he think your are fussing,the calmer they are about it,the more you will come over as a fussing wife,
Slim has just woken up,I left him nice and warm in bed and 5 minutes ago you would think he has just stepped out of a freezer he is shaking so much ,I have tucked him up in bed and waiting to fill hot water bottles,must go now.regards to all.

[jmsmythParticipant]

You are so right Eve. Slim and Frank sounds like clones!!! Frank was a late baby ~(although has brother and sister) but his family doted on him and he always got his own way, and still expects to get his way. He really does not understand what is going on my head. I also think that his "on mindedness" (is there such a word) will help him with this disease. I do admire how he copes with this myeloma, I know I could not do it. When he is pain free, the dreaded word Myeloma or anything to do with the illness is never mentioned. We live from one onsultant appointment to the next.

Thanks Eve and everyone. I hope Slim is feeling a bit better today.

Love Jean xx

[BADGERParticipant]

Hello Jean

How is northern irland this sunny day I hope you are not feeling so worried now and looking forward to your holiday in Spain we have just come back from Grand Canary had a good time I know where Frank is coming from we just hope it will go way hard to admit we are ill fingers crossed he will be fine.

Enjoy Your Holiday

Love Jo x :-S

[jmsmythParticipant]

Hi Jo

Thank you so much for your kind thoughts. He is going to see GP tomorrow but our GP knows nothing about Myeloma. I admit that I am so scared, I wish he would see consultant, or at least go for and xray, but it is in Gods hands now.

Glad you enjoyed Grand Canary. Frank was saying today that he would like to go to Maspolamas in May!!!! He is he*l for making plans. (would not let mme post he*l)

Thanks again, I am off to have a large Gin and Tonic (again) to see if I can wind down.
Love Jean xx

[MinParticipant]

Jean
I strongly suggest you contact the help line and get a take two pack. It is for you to give to your GP in order that they can better understand MM it is produced by Myeloma UK and if it does nothing else it will help another poor should who might not get diagnosed until much later because GPs rarely see a case of mm therefore cannot diagnose it.
Hope the G&T calmed you down
luvMIn

[BADGERParticipant]

Hello Jean

hope the G&T helped we got stuck on the sand dunes at maspolomas in a shower of rain while we were there got soaked. I think its good to make plans otherwise life is always on hold
Love Jo x

[jmsmythParticipant]

Hi Min

Frank went to doctor and guess what – muscular. I asked him to ask dr for an xray but was told again (by Fran) that they only xray bones and not muscles. He is so looking forward to Spain. His appointment with consultant is 14 April so I will phone and ask for him to see consultant rather than registrar.

Min I bought that pack down to our doctor last year and he showed enthusiasm, told me he was going to photocopy it and give it to partners. When I visited again – he took time to show me that it was displayed and he thanked me. Now, whether he read it is another thing!!

I did enjoy my g&t and look forward to another one tonight.
Best wishes
Jean

[adminKeymaster]

If they do the xray it is to check the bones after all he does have Myeloma, so checkin on the bones is reasonble. They can also do Ultrasound and of course MRI

[jmsmythParticipant]

Nigel I know you are right but this is causing so much friction. I know if I keep going on at him he will not tell me anything about how he is feeling. He is so adamant that he knows his own body so I am having to put things on hold for 2 weeks and then have a long talk with consultant. He will hate that.

Min you are right about putting life on hold, but I don't want to tempt fate.

Bes wishes
Jean xx

[eveParticipant]

Hi Jean

I know its hard,but if Frank will not make his feelings known to doctor,you have to accept it is his life his choice.He wants to go on holiday!!If bone damage is there 14 days will not make any difference,If he starts wanting to be sick,then calcium is getting into blood stream its called hypercalciumer ,spelling might not be right but worth looking up.this leads to akd.takes time to get to this stage.My partner,has lesions,on shoulder blades and skull plus spinal damage.I have copy of mri scan and letter to my doctor,All indications say to me stage 3,told they do not do stages anymore???
Because I live with my partner,I had him write a letter to access his medical records,It keeps me informed and helps with questions to ask, knowledge is the key.
on a lighter note,g&t work wonders I have a saying no matter what time of day it is when things get to much,my attitude is its six oclock somewere.
It is hard Jean,my thoughts are with you.eve

[jmsmythParticipant]

H Eve

Thanks for the info, I will look out for that. Dear help him I watch him like a hawk. I have been trying for years to do it his way but I will have to try harder. He is not going to like it, but I have a list of questions to ask consultant and I will tell her about the pain. We are going to Spain but I would much rather be at home but I will try for Franks sake to appear to be enjoying it. Had a small g&t about 6.30, but wee eat late, and just finishd dinner and I am now going to have a large one.

Hope Slim is feeling better. Is he on treatment? I am not knowldgeable about the treatments, just what I read. Hope all is well

Keep well
Love Jean x

[eveParticipant]

Hi Jean

Yes Slim had been ill for more than 6 months,In a lot of pain,wanting to be sick,not eating,doctor put it down to tablets.Slims problem is he has a high pain threshold and an attitude a little bit of pain never hurt anybody.
I came across as a screaming banshie with attitude,not good when you know something is seriously wrong and doctor will not listen.no test done!!!!!
Saw another dr.in practice,who straight away said there was a condition were calcium leaves bones and gets into bloodstream.blood test,and hospital appointment took 2 weeks.Saw consultant was admitted with in 10 minutes with hypercalcuimea and akf.all test done over weekend.myeloma x1 trial straight away on ctd intensive pathway.nearly finished 2 cycle 21days in cycle on day 33.Feel guilty that I did not do things different,feel mad at Slim for not demanding test,but he did not realise how ill he was it had just become normal to feel so ill.
At the moment i am not in a good place, but g&t comes in handy.lol

have you looked at the under 50 site,they think oldies do not use fowl language.

sugar instead of s..t
basket instead of b…..d
fasting instead of f……
I think we should have a special one were we can swear.lol

[jmsmythParticipant]

Eve

I am so sorry to hear that Slim is having such bad time. Frank was diagnosed by accident (??) Went for something minor and dr did tests and and consulant after bone marrow sid Multiple Myleoma. I never heard of it. Our Dr did reseearch on MM but then retired last year and new dr hasn't got a clue!! A Good thing the other doctor took conrol of Slim. I do understand what you mean by feeling guilty – I did, and still do to an extent – I went to couselling and he made me realise that no matter what I did or said would make no difference to how Frank would handle this "fasting" disease. I know all about the screaming banshee, but it made things worse. I don't want to have the "what ifs", but I know that I have and will do everything I can do for Frank. Eve you have done all that you can, and I know about "that place". I have taken up wee Sports – and boy is it great for taking our frustration. Hey believe it or not but I joined the under 50's (just a weeeeeeeeeeeeeeee bit over the age – believe that!!!) They are a good bunch and when I was going through a bad patch it was 2 of the under 50's that helped me greatly. Will they mind if we us their shorhand? Sorry for rabbitting on, but Frank has gone to bed in the huff – do they ever grow up. Will dry up now.

My very best to you both and once again thanks for the info.
Lov Jeanxx

[tinkerbellParticipant]

Hi Jean,
It could just be a pulled muscle I'm assuming that they've given pain relief for this so watch carefully and see if this has an affect. My first signs of illness were lack of appeitite – it felt like I had to force food down and I really had to motivate myself to cook(Not like me I am a typical Irish country mother who loves to over feed people) and tireness that I can only describe as I felt as though someone had pulled the plugs from the soles of my feet and everyone else noticed that I had lost my motivation to do anything. Glad that at least for the minute I've got it back. Fingers crossed that this is only a blip and not the beginning of needing treatment. Have you written a list of questions for Dr Drake – I find it makes it easier when your sitting in the consultation room. Take care xxx

[jmsmythParticipant]

Hi Pamela

So glad to hear from you and am glad that you are feeling more like your old self. You have had a rough time. No Frank is not off his food – he has never been a big eater. No sign of sickness, but I will look out for it. He is all go – although he doesn't sleep much. We are ging to Spain on Friday, hew wants to to go Grand Canaria and he wants to do your cruise. He seems to have more energy than me. Sometimes i think it is for my benefit. I have my list of questions – Frank hates it when I question her. He has great faith in her and according to Frank if he needs to know anything she will tell him. Our son Steven said his dad had something like this pain last year. I cant remember!!

Rome getting closer. You will have such a lovly time.

All love and best wishes.

Jean ss

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