Hi Gina
You rant all you like,I have done alot of ranting on this Forum,it does feel better once you get it off your chest,and it gives the people on here a chance to support you,it must be a worrying time for both of you.
I can only speak for myself but so many people have helped me,and I am so grateful.[ it is my husband with mm ]
At least you have had time to read up on mm and mentally prepare yourself,I take it you will have an appointment with consultant?Let us know how your mum gets on,from what you say its early days and has been found early which I think is half the battle. These myeloma trials offer a lot of hope.
good luck to you and your mum. Best wishers eve
Hi Bridget
I am curios too,Sarah posted on Off Topic,subject happy days,I replied,but got mixed up I thought Sarah was Gill,so reply did not make sense.I cancelled within a minute when I realised my mistake,went back to post,in left hand corner it says edit/delete so i did delete my post.then received post from Sarah looked and whole thing has vanished.
Waiting on Sarah to try on this post see if it does the same,is it just me or a flaw in the program. Does than make sense Bridget?
eve
Hi Sarah
Ido not know!!!!!!!I realised I was posting on happy happy days,got mixed up between you and gill with that thoughtful grandchild,so I deleted my bit.Just caught your reply,looked at it and it has gone,did not think I could do that,so so so sorry.
I only deleted on my bit were it says amend or delete may be I have a and error in the system,when you receive this, reply and post then go back and delete it and see if it all goes.
sorry again,please try that and see what happens,it might explain why some post goes missing eve
Hi Min
Just to let you know my thoughts are with you,wish I could offer more. Hope you find sometime in your mind to stop thinking about it all.Planning that kitchen might just help you hold thing together,Its not a nice place to be in at the moment.As you have helped and told me so many times, we do get past these awful times,Peter must be in with a good chance,otherwise,would the powers that be,even go there.
to you also Angelina,wishing you well,I can understand him refusing to go in hospital,just being home helps to have a feeling of being more in control of things,I hope your family are there to help you.
Wishing you better times eve
Morning Bridget
But Bridget I am not ill,My hair is like straw,bags under my eyes,trying to think when i last went to hair dresses!!!
Anyway not going to moan today,s-o-d the cleaning lovely day out there to good,not to enjoy.Going to make the most of it bit windy, but better weather than most places.
Have a nice day.eve
Hi
Sent e mail ,I wanted pull out larder and intergrated fridge freezer,looking at 1OOO just for units without fridge freezer. Settled for magic corners good ones,hold a lot of weight,£250 each,free standing fridge freezer argos £219 bush.Just put kitchen appliances in google lots come up,take phone numbers and ring direct with make and model even when they give you price,ask is any discount for buying more than one item,you will get it.they want your money,if not sure of make or model pop to curry,s have a look then you can go back with make and model.always look at custom,s comments.
Bridget this is what kept me sane in those early days,then G&T,and now pop pills,stops me screaming at people when they do not do the job properly.
Do not cry any more,upset Slim so much me crying.Lets face it,unless you are going through this,people do not understand,
As to plans Min,we should be on are way to Norway,Sweden and Denmark for the summer my mind goes there even if my body does not.missed out on new zealand two grandkids out there.I go on skype and talk to them you should try it Min,250 miles is a long way when you cannot get there,it cost nothing,and its so lovely to see there faces.
Anyway this is not getting my filing done,will have to shout at myself,so much rubbish sent in post these days drives me mad.
have a lovely day ,eve
Hi
When I saw that title I thought it was a rock band going on tour,silly me LOL
Have a lovely time,eve
Hi Min
Yes you are right Min,We tend to forget there are so many people out there fighting there own cancers,
Slims just aged twenty years in six months,and as for myself,when walking with Slim and a friend yesterday,someone thought she was my daughter,only three years difference in our ages.!!!! It made me realise I have not looked in a mirror for ages,solved my problem covered all the mirrors up LOL.
Started CTD yesterday waiting for Dex to kick in,he is on half the dose so may be it will not be as bad,
I saw someone who is on this forum at the hospital on Tuesday,he started about the same time as Slim,he looked great,looked if he had been on holiday no weight loss nothing,and Slim looked awful,I could not help but think why!!!
Anyway to day I am not going to go there,suns just coming round to my windows,going to make the most of the day,love to you all.eve
You have all started my day laughing,its going to be a good day,
Bridget be careful do not sit on those stools you might fall off!!!lol
Min I shopped on line for all my appliances a annd saved my self around a thousand pounds,because I have small kitchen,went for combi oven,and waste disposal,needed everything got good makes,delivery often next day could not fault the companies I dealt with,Often kitchen installers have to go through a franchise and they are expensive combi quote was 700 pounds on line I got same one for 350
enjoy your day everyone its lovely and sunny out there,best wishes eve
Hi Angelina
Now that is interesting,as Slim served many years,as a young marine on board ships,travelling all over the world,also the other ex marine same age as Slim served in roughly the same places at the same time.
I know the old navy ships were covered in asbestos and Slim said were they slept above them were pipes covered in the stuff,when all these wedge shape holes were discovered,they checked for tb.my immediate thought was asbestos,I do not want to go down the route of biopsy ,as what difference will it make,its there and we have to live with it,as long as it,s not tb,because that would effect the whole family.Thank you for your kind thoughts'
eve
Hi Bridget
I had one of those slobs,by nature, she was so bad even the spiders left home,cobwebs stayed and gathered dust.
Out of the blue,she left her partner of 10 years,who was a nice chap.Met another man,and within a very short time married and had 2 kids in 13 months,she is now an earth mother,spotlessly clean,you would not know it was the same person,so do not give up hope,my daughter shocked us all.
As to kitchen,and bathroom,enjoy it if I had waited for my council to help me out with bathroom,I would be still waiting,have been trying to get some help with care allowance still not heard,have gor some equipment,wheelchair to heavy for car,bought another from Halfords,light one for car heavy one for walking into town.
Looking forward to tomorrow,it is going to be another nice day,love eve
thanks Min
Always there with good advice,Slim and Peter seem to go hand in hand,only you are ahead of us.
Do you wonder whether it is related to being in the RAF,the reason I ask,is in my doctor,s surgery,there is Slim with Myeloma,and another ex marine with AMyloids,Facts are 3000 people a year get Myeloma,600 People get related condition of Amyloids how rare is that.Deal is a small town with a big connection to the marines.May be its me looking for answers again!!!!
I keep having to tell my self we are lucky,had a nice day today just pushing Slim in to town,enjoying the fresh air,and looking at the blue sky,joined friend this early evening,8 adults and six dogs,just enjoying an unspoilt spot,right by the sea walking,its a lovely place every one says good morning,and every evening its just the same,people are so nice,It,s not planned people just turn up for the last walk of the day.I feel lucky to live in such a nice place,but must admit I can see France from here.!!!
Hi Bridget
It will be worth it in the end,I had mine done just as Slim was diagnosed,had been arranged earlier and felt,I had to go ahead with it.
Believe it or not it kept me sane,I was so busy with kitchen and bathroom ,and Slim being admitted I did not have time to feel sorry for myself,saved a lot of money not buying gin lol.
After Slims last stay in hospital the bathroom realy came into it,s own,massive shower installed instead of bath,we both can fit into it,not for hanky panky,but for me to shower him. lol
Double glazing being done next week,waiting for summer to decorate
Bridget my cupboards in kitchen,still have a layer of dust in them.When things are finished I am going to get a cleaning firm in.never thought I would do that,learning from my daughters,They do not waste there energy cleaning.
Today in sunny South East Kent the sun is shining ,people are sunbathing on beach,Slim went out in his chair,and we spent three hours on the front,it makes up for missing the bluebells,and fields of rape,never saw them this year,only smelt them on my way to and back from hospital.
Have a lovely day Bridget
Hi Jo
No not possible round trip of at least 160 miles,journey alone with bone pain would be bad for him.
It,s not so much the myeloma trials,It is the conditions which seem to go hand in hand with it,Slim complained of pain in side for a long time,we thought bone pain, when the cat scan was done turns out lots of wedge shape holes plus blood clots,must of been there for some time. If he took ill,although you ring the team you still go through A&E if an ambulance is called you do not have choice of hospital.This is were it seems to go wrong. I carry a massive folder with me now,I get all the results of any test,bloods urine I try to get hold of all reports on any test carried out,even if I do not understand them,Google is a great help.
Six months on injections for blood clots plus three more rounds of ctd seems a heavy price to pay for the inefficiency of a hospital.I just cannot see sct being on the cards.
Hi Angelina
Yes I can relate to your post,not as bad but very frighting,Slim has had a few bad times,being an ex marine he has seen and been in many bad situations,but these nightmares he tells me are so frighting,had about 4 in itu,panic attacks they said ,but when we talked about them,they were nightmares.Must admit at time my thoughts were is it mm or drugs,as you say staff not to concerned,I personally think its lack of fluids effecting the brain.
Some funny ones were seeing a girls legs in riding boots walking on top of curtains,and wanting to build walls in itu so no one could get into his space his language was over the top too,He believed all this was real,the bad ones,are so bad I cannot talk about them.
On the serious side with Slim having lesions on his skull,and reading a post on here about someone who had mm in fluid on brain,it knocked me for six,Min was the one who dragged me back to sense.
Hope this is some help to you eve
