[susannahParticipant]

Hi Sat in my lounge time 5.55am been sat here since 3.30am. Michael is asleep, he seems to be asleep more than he is awake over thepast couple of weeks, its probably the morphine hes now on a very high dose as he is in so much pain.I sit here looking at the christmas tree just wanting to take it down, the christmas cards, although very few this year, even my neighbours of 30years havent sent one, infact I havent seen or heard from anyone for a while, apart from my 2 lovely daughters.
Im probably feeling sorry for myself, how selfish is that, i just want to run away. is this normal. all I seem to do is eat and cry im just a mess. Im so ashamed ive always been in control and now ive lost it. Today is another day brush myself down and start again.

Suex

[tomParticipant]

Aww Sue

I am sending you loads of Cyber Hugs Girl ((((HUGS)))) as that is all I can do from this distance.

I dont know how you feel watching Michael being in that much Pain and i dont understand why he is in pain?? am sure they must be able to stop the pain?.

Am sorry you haven't heard from folk for a bit am sure that would help you through the difficult time you are in.
Sue you have every right to feel sorry for yourself and have a cry as and when you want, pleased dont be ashamed of your feelings that you are going through at the moment you are a strong lady and you WILL get through this.

Lots of Love and Hugs sent to you and Michael.

Tom xxxxx

[TinaParticipant]

Dear Sue,

I know exactly how you must be feeling and I truy wish I could say or do something to make the pain go away. Michael is the love of your life and the very thought of not being able to enjoy the future together is absolutely devastating. You must roll with all your thoughts and feelings don'tever feel guilty for even the strongest will find this time too much to bear.
You have been very strong throughout Michael's illness and I know that alone can sap your strength from time to time but you will find the strength to carry on, I know you will.
Michael should definately not be in pain – this is completely manageable, maybe your macmillan nurse can help?

All my very best wishes to you and Michael – if you need to talk antytime please contact me pa.davis@virgin.net

Tina XX

[GillParticipant]

Hi Sue

The first thing Stephen was told when he became ill was that pain management is the highest priority. Do get on to Michael's medical team and ask them to re-assess his pain control drugs.

It cannot change much for you or Michael but I am sure that you know everybody on here is routing for you both.

Love from Gill xx

[susannahParticipant]

Dear Tom you are such a lovely man,thank you for my hugs.
Tina and Gill you have both been through so much, it really does help when I read your posts.
Managed to get some fresh air today, even if it was just to fetch a news paper, but it did clear my head a little.
Regarding Michaels pain. his GP is now in control of that, well hes on mst and top up oramorph. I have to keep a diary every week of his top ups and take them to his GP who then ups the mst.We only have contact with the hospital if he needs a blood transfusion, they are sending the phelebotomist (Probably spelt incorrect)once a month to take his blood.I do manage most days, but I dont think Christmas is helping. I do have contact numbers for the district nurses and the macmillan nurse for when I need them but I keep thinking i wont, perhaps im in denial.

Love

Suex

[eveParticipant]

Hi Sue

It must be very hard for you at the moment ,people do not know what to say,must find it very hard to send a card,wishing you a happy Christmas,but as Gill said we do understand what you are going through. At least you have your daughters around,I would suggest if you have a good friend reach out to her,no one wants to upset you,but if you make the first move you will be surprised how good people will be,

As you know I am in New Zealand at the moment,the time difference is 11 hours so if you want you can contact me through face book private chat or send e mail,it might help to just talk as I know about those 4am moments,your mind goes on a trip all by it,s self.

Michael should not be in pain,has he a driver fitted,I would speak to your district nurse as they now take over the care and are on call 24hrs. It is time to get the experts on board,a friend ,s husband said to me,the time will come when you have no control of the situation ,so my advice if you wish Michael to remain at home,you will need help.

I wish you the best possible Christmas that you can have,as it is important ,love to you and your family.Eve

[susannahParticipant]

Hi Eve Thank you for replying to my post, its 5pm here so i would think its about 4am there and hopefully you are both fast asleep.
ive never heard of a driver?
And your so right about making the first move with people, I spoke to my neighbour yesterday and she came round with some homemade scones today, which i might ad she has never done before, and we just looked at each other and laughed and then we both cried.
I hope Slim is keeping well you both so deserve it after the year you have had

love to you both

Suex

[jmsmythParticipant]

Dear Sue
I read your post on the day it went up and wanted to say something to you but was scared that I would say the wrong thing. I pray that Michaels pain is under control and that God gives you strength. I'm so glad that your neighbour came round and now you will have someone that you can talk to who is nearby.
I hope you and your family have the best possible Christmas ever

My love and best wishes to you and your family
Love Jean xx

[TinaParticipant]

Hi Sue,
Thought I'd answer your question re: driveras eve is on the other side of the world. A driver is a small portable pump which can deliver a variety of meds at regular intervals for symptom control. This could be morphine or any other med required.
Patrick had one fitted when he slipped into a coma. Morphine was given at intervals to ensure he was not in pain.
Homeade scones sound yummy.

Love
Tina XX

[tomParticipant]

Hi Sue
Hope you are all doing ok and Michael is having the pain under control, I am pleased that you have got scones and a new friend.
Love and hugs
Tom xxx

[MinParticipant]

Hi Sue,
Neighbours can amaze you when you least expect it.
I'm glad you have someone nearby,and hope it has helped you feel less alone.
Michael is still with you and now is the time to say what needs to be said, in order that you have no regrets. It is also the time to get Macmillan nurses involved as they are there for YOU too. Coping alone is soul destroying and having a Mac nurse will help you enormously and they can get someone in to give you a break for an hour or two.
Know that I and all your friends on here are thinking of you, and willing you the strength to bare all that this d*** disease throws at you.
If I can help in any way.
Min

[susannahParticipant]

Hi All thank you all for your replys, i feel so much better when ive been on the site. Tina and Eve if you read this post im having problems with my emails.
Michael had to have a blood transfusion yesterday the ambulance fetched him in his weelchair, as he struggles to walk now, but he seems quite well today very tired though.His pain ismostly in the lower back and hips, he has had his morphine increased again and he seems to be a little better,although I know he doesnt always let on what pain he has.

love
Suex

[tomParticipant]

Hi Sue and Michael

Am Pleased you are feeling much better this site is a godsend in difficult times as I know too well.

Give Michael my regards and Hugs to both of you.
Stay strong

Love Tom xxxx

[haytm01Participant]

Suzannah If you need to talk I am here I have just lost my Husband Tony age 57 he passed away on Dec 7th in hospital before i had a chance to say goodbye.
Funeral Tommorow so know how you feel.
Tony had myeloma for 2 yrs 3 months and we only just celebrated our 6th wedding anniversary.
Remember the good times and hold each other tight.
Christmas for us will be difficult but maybe we can support each other
love mary thinking of you xxx

[susannahParticipant]

Dear Mary Thank you for your reply, it must have been so hard for you. I cant imagine what pain you are feeling, my heart goes out to you
Love
Suex

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