Hi Helen
It does seem worrying at first,but as soon as you mum starts the injections she will improve.
Slim had a mass of blood clots in lungs,no one realised as he did not get out of breath,plus holes from damage with pneumonia.He has been injecting himself for over 6 months now and we expect this to continue for some time.
If you put a word like blood clots in the box for finding related issues it will turn up post related to word,you might find this helpful,Love Eve
Hi Sarah
I live about 40 min from you,and Deal is frost free,on are way to Canterbury this morning you could see frost in the small villages low down of the road,but otherwise this little corner of England tends to have French weather.
I am glad you are going to have all the family,its so important the first year,if your worried about the out laws you could invite them to,At my daughters the children will have both sets of grand parents there.
You could always give the grandchildren an extra present from gran dad on the cloud,children might not say any thing but they are deep thinkers.They must miss him too.
I like your presents,I once got a ton of manure for my birthday,a spade to dig it in,Slims hopeless at presents I do all the presents some times even my own.its easier.
He enlist the girls to help him with mine,my daughters tell me I am a hard person to keep a surprise from.I find it easier to use the same perfume and body sprays then they have something to fall back on.
Hope your coffee morning went well,and made lots of money for Myeloma UK.
Now its getting a bit colder feel Christmas is starting.Love Eve
Hi Only me
Just to try and give you a little bit of support,i cannot help you as Slim has not had SCT,but am posting to say people who have been in your mums position,say it,s worth it in the end so hang in there,this post should take it back to top and more people might see it and reply to you.
Good Luck Eve
Hi Everyone
Well last night I did it, could not look at the moth eaten man any longer,so decided to get my scissors out,he moaned all the way through it,told him he was lucky I did not get the dog clippers out:-P
Have cut Slims hair very short to give it more body,he tells me,when he was a marine he never had it so short,think he is telling porkies:-P
It just seems to have stopped growing and looked so moth eaten in places,has always had a full head of hair,what is strange is that his Dennis Healey eye brows are still bushy and black he will not let me near them!!!!
Hoping it might improve for Christmas if not might get the boot polish out and do a shave and shine!!!! love Eve
Hi Carol
That,s wonderful news about your family,very hard on your daughter to make that trip,but she is so far away and the worry must be awful.:-S
My daughter could not get over how Slim looked so ill!!! but saying that has now put on 1st 8lb and looks so much better has his bad days when he tries to do to much,:-( but is OKish.
When Slim had those days I had to remind him the Dex was talking,try not to do to much,and listen to your body,some times Dex mask infections,so watch your blood pressure low blood pressure to me is a marker that Slim is not well.
Do you do on Skype to talk to your daughter,I found this helped a lot,when things were bad here,it kept her in the picture better.
CTD failed for Slim and is on 6 cycle of Velcade,and working:-) expecting to do full 8cycles:-P but as Dai says what ever it takes.!!!
Just in case your are to busy and tired,I will wish you a wonderful Christmas.Seeing your daughter will be just what the doctor ordered:-)Eve
Hi Jean
It sounds if you are going to have a wonderful long Christmas,make the most of it,as the family get bigger they start to scatter,so make sure you have a wonderful Christmas.
The weather here is beautiful,as long as the sun is shining ,we go for at least 2 walks a day having the dog,and for the end of November it is wonderful.
I have decided Christmas shopping starts tomorrow,Slim starts his 6 cycle tomorrow with blood test so i think I can get away with a hours shopping!!:-P
Love Eve
Hi Everyone
Plasmacytoma is treated with chemo unless it causing damage to spinal cord,Slim has tumour on spine plus lesions on shoulder blades and skull,when I asked about how long he had,had it,and what stage it was at,I was told,the do not do stages any more and they considered when it became painful was the start of it!!!!!
I can see why they told me this,but at the time considerd they were telling me porkies:-P,They also said,7 years and with trials looking at 10 years,but as you know from Slims journey,damage to bones,lungs plus 80% in bone marrow,I feel just lucky that at last the Velcade is working now down to 10% in marrow,plus no compromise with spinal cord.I just put this down to the fact as an ex marine he was very fit and can do pain.
Also being non secretor has not helped
When they first see you,they have to make a judgement,how much to tell,I found out most things by asking and reading up,I do not agree with time frame,but it is irrelevant as we just enjoy each day and talk about plans for next year.I suppose it,s excepting your limitations,and realising it could have been a lot worst.:-)
David you will make your 50th and many more,plus lots of nice care free holidays,look to the future and stay in front of that red bus.love Eve
Hi Everyone
DETRIMENTAL leaving TAL
Eve
Hi Everyone
You do make me laugh Tom,Slims hair looks a bit moth eaten and he has not had SCT,just 11 cycles of different chemo,but cannot complain it is starting to do the trick.
Helen it is so nice to hear you so cheerful,I thought I would mention a few products that might help eg: Polytar from boots, it help with itchy skin,.Aqua cream you can bath in,gets all flaky skin off.I thought after chemo they did not like you dying hair???could be wrong but would check!!:-(
Nice to see everyone so cheefull love Eve
Hi Jo
You must be so pleased,I am so pleased for you,you have been my beacon,for some time now,because of not having SCT,so I am so glad you are still in remission.
You have been doing so well,have a lovely Christmas Jo,and forget about the sword of Damocles. love Eve
Hi Sarah
Did not know you lived so close,Slim and I live in Deal in Kent.
I am a young 63 years going on 21 and a bit,Came from Liverpool to Kent 40 years ago.Love the south but miss the northern sense of humour. Eve
Hi Chrissie
Concerning the AL,you have to help you husband to get up in the middle of the night,and at his age needs to go more frequently ,you do not have much choice because he cannot afford to fall,if he brakes his hip you will not be able to manage him at home,if you do not get the full amount appeal.it will be back dated and his position concerning hips has added to his disability.
When needs must be,it does not matter,if its son or daughter,tell them you need help,if they do not rise to the occasion then at least you have tried.One of my son-in-laws made soup every morning and came in his lunch hour to ITU to make sure Slim ate wholesome food.
Sorry to sound so direct,its just they way I think and write,the pension people will always send someone out to help you or I believe Macmilan nurses are good.Slim still has the large blue cushions these help with comfort and ease to get up.
There is light at the end of the tunnel,just take it one day at a time.Eve
Hi Chrissie
just to let you know you are entitled to Attendance Allowance plus Blue badge,you should get about £73 a week,this will help,get a care agency in or pay a friend to just come round and take some of the strain off you,this is so important,have a word with your children tell them you are not coping,may be one of them can just come up for the weekend,to take some of the strain off you.
When you are in this situation,sleep does not come easy the slightest movement from your husband has you awake in seconds,so your sleep is broken,try to cat nap,as Min says forget about housework,if it gets you down pay someone to come in to do it.
have you got all the equipment from the hospital to help you,frame,toilet seat, cushions ,wheelchair,commode ,if you have not apply for them you might only need them for a short time,but it makes all the difference,It does clutter the house up,but you can only do so much and it will make your life easier.
Slim soon learnt he was better using these things rather than decorating the carpet we now have wooden floors,and I no longer spend my time on my knees cleaning up. lol:-P
It will get better Chrissie,All the equipment went back and Slim only uses wheelchair when he feels he cannot walk any further,getting out and about is very important,staying in will not help either of you.:-D Eve
Hi Tom
When you manage to put the picture on,let me know how you do it,because I havn,t a clue!!!,and I thought you might like like to see my magic draws lol.
In the kitchen of course I have a very small kitchen,so space is important,did a silly thing when Slim was ill and had builder round did not finish jobs completely,just finishing off bits,but Slim could not take any more,so paid him off,said he would come back and finish another time only couple of hours work,cannot get him to come back to do work he was paid for.
LESSON LEARNT do not pay for job not finished hold 10% back.
So Tom I could do with a lesson on how to get photo,s on here.:-) love Eve
Hi Chrissie
My name is Eve and I have watched my husband go from a very health man to someone who lost 4 st and lost 5inches in height,and yes I thought I was going to lose him.CTD did not work,Velcade is working for him.so I do have some idea how you feel.
You have to take it one day at a time,and when the good days are there enjoy them.his quality of life will improve if they can find the right drug,and you have to keep telling him he will get better.Lenalidomide has had good results,doctors are thinking, some times less more often is the way to go.
Look on here at the new trials starting it might help,also there is Susan husband and Bridget who are well ahead of your husband,think you might find it under treatment,It will give you some hope for the future.
I can tell you if they can find the right chemo,he will improve,you may not be able to believe it,but you will get there,I was told my husband might die in ITU,he survived, CTD did not work 80% Myeloma in bones,Velcade working 10% in bones now,still along way to go,but you have to have the believe,that you will get there,and every time he falters,you have to be strong.
This site and the people on it,has kept me going through the bad times,because you will always find someone on here who is ahead of you,I am sure Bridget will reply to you,it will make you realise that there is hope,you are just unfortunate to be on a longer journey than most,Its been over a year for us.We have only just received a little bit of good news. EVE.
