Hi Dai
I was watching an interview with Andy Murry,it seems his class were getting ready to go into the gym,when a teacher heard all the noise and went over to see what was going on.He was outside in the play ground.He did say he is able to talk about it,but his younger brother never talks about it????
He did say he wanted his win,to put a positive side to Dunblane.
You are right Dai,about shootings going on,I suppose until it,s on your doorstep the magnitude of the whole thing has no effect on the rest of Britain.its a sad sign of the times we live in. Eve
Hi Maureen
Isn,t Ian your toy boy:-) if he is under 65 he should be eligible for a car,under the independent living allowance,,I do not know much about it,but there are lots of people on her who can help you !!!
Maureen I think you have to make the most of the time you have left with Ian ,lets hope the Myeloma stays under control,and you both adjust to a different life style,it might be different,but you will find what ever time there is,is very special,even the bad bits when they are grumpy old men.
I know there is someone on here who had a compressed spine,and he has learnt to walk again,although I think he was warned he might never walk again I do not want to build your hopes up,but it,s not the end of the world,life will be just different
So glad you had a good time in London,and Dai must be feeling better lovely poetry. Love Eve
Hi Jo
I just hired it for Saturday and Sunday,which was enough,went out twice on Saturday,just to the path by the sea,was only fit enough on Sunday to go out the once,he said it was good to get out,but said he will be on his feet in no time.
Just to prove a point Monday walked about 15 yards,then on Tuesday he doubled that,by tea time his leg was swollen and lots of blood spots under skin,took him to doctors,ended up in A&E until 2am.back at hospital today,for scan,plus now you have to go to another clinic app 12 and 12.30 !!!!! 1. 25.still waiting for second appointment ,gave in took Slim home!!!!!
To cut a long stry short,Slim has a history of DVT now artery blood clots,but I think the blood under the skin,was because his platelets are 57,the strain on leg after operation then walking caused platelets to rise in the leg.
Another day gone,I think the hot weather is causing lots of problems with elderly people,they were packing them in,on the holding ward,so the wards must be full.
So glad to be out of that place,love Eve
Hi Maureen
Good for you needed that break,and you new Ian was being looked after,that break did more good I should imagine than a week in bed,mind you I would settle for I good nights sleep,at the situation,when I am to tired to move,Slim is awake through the night, hoping things will improve.
Ian has become institutionalised ,after so long in the hospital,you will have to start him home gradually,may be bring him home for a day,and increase it slowly. The hospital know this,so I am sure they will take it on board,
Now what about you!!!,are you going to carry on working!!!,are you getting everything in place!!!,if I was you I would get a cleaner for a few hours,plus start cooking meals you can freeze,as the hardest part will be at the beginning,until you have routine,make your life as easy as possible.
I know how much you want Ian out of hospital,but Ian will be worried about how you both will cope,if you have any doubts voice them,there are ways and means around everything,do not bottle it up.
I do a lot for Slim,and at times I found it exhausting,frustrating,plus the world moves on and some how you just do not move with it,I try to take Slim out everyday,once he is out he enjoys it,but its hard work,so look after your own health.Love Eve
Am I allowed to tell this horribly company to Piss Off,do not need this today. eve
Sorry I swore.
Hi Jackie
I saw this posting,and thought I am not going to waste my time answering it,but saying that I changed my mind,because you do need help,what ever floats your boat as people have suggested counselling !!! May be you need to look at your life!!! Magic little pill!! I take some every now and then when lif gets on top of me,no shame in it,keeps me going!!!
You should sit down and write every thing you are grateful for!!!
I am so grateful I have had 33 years with Slim,even if he is grumpy at times
I am grateful I have three lovely girls who I am so proud of
I am grateful we managed to get out to the woods and smell the bluebells as Slim has been in hospital seriously ill for the last couple of years.
I could go on,but I am sure you get the picture
Lock the MM in a cupboard,and decide what you want in life.Eve
Hi Tom
It went OK today,few hiccups ,nurse was good at finding vein!! So that was a good start,second attempt,had a problem with air bubbles in line,so had to be discarded,then some realised he had not had treatment,so male nurse toddled off to pharmacy ,the whole thing was finished by 4.30 so it was a good visit.
They took all Slims chemo tablets off him in hospital,but also took some prescribed by GP,so another visit.
I suggested it might be a good ideas to have bloods taken mid cycle as platelets only 57,bound to drop,so they are happy for me to arrange bloods through GP,and ring to see if he need any.
Managed to arrange appointments all together,so things are looking good,I am glad to say,I just have to keep Slim well enough to complete cycle.
We will have to wait and see about his memory,see if it has been effected by the artery blockage see vascular consultant mid Augest 😛
BMB on the 13 August,will know if treatment is working by the end of August.
No point in worrying ,just taking things on a daily basis ,took him down to the front in the wheelchair,he all ways thinks he can do more than he actually can:-S
The scooter came in handy,said he did not want one as he will,get better. Love Eve
Hi Annette
You are doing something for him Annette,you are being with him,and keeping strong in front of him,this is the time to sit and listen let your dad talk,if he wants to talk about death,do not stop him,just listen,he will not talk about it,if he thinks its going to upset you. It will give you the chance to say anything you need as well.
You are giving your dad the greatest gift you can,that's just being with him:-) many people can not do it.
Just do your best. Love Eve
Hi Everyone
Well we see what happens today!!!
Slim came out of hospital on Tuesday,vascular. Ward,haematology rang with appointment for last Friday,the consultant did not know anything about Slims stay in hospital,no notes from vascular although ward is 25yds away. He relied on my version of the situation.
Wanted Slim to start second course of chemo,so eventually off we go me pushing Slim in a wheelchair to the other side of hospital,.
Bloods taken and general ops,the nurse was going through his massive file looking for the last ops,I told her there were none taken,did not believe me carried on,in the end attached ops to and old one months before.
So here we are Monday,will be interesting to see what it brings,they now have a specialised haematology nurse,is she there for the patients!!!! or to organise appointments !!!!,I asked for her card as she will be my point of contact,interestingly my consultant has never met her,but she has been there years,just new appointment!!!!!!!
Revilidimide 2 cycle,told to come in 3 to 3.30 think if we go in 3.30 we will only have to wait 2 1/2 hours as department plus pharmacy shut at 6.. Will get my note book ready will let you know what happens. Eve
Hi Philip
Kidney,s to us is the danger as Slim was admitted with AKF but his kidney,s have regenerated so lucky there!!,but when he went to Kings in London,he found he had added complications with his liver,but for a man who has always loved his G&T plus wine,he totally went tea total over night,his body no longer likes the booze,.I think this is we're listening to your body comes in to play,it has always worked for us.
Also if I am in doubt about Slim at any time,I will question it,for example had SCT and after 6 months,I wanted another BMB done,the consultant said this is not normal,my attitude is Slimi is not normal,as no longer shows in blood. So I take the attitude prove my wrong,it had come back,no symptoms just gut instincts .
They may be experts in the field,I am an expert on Slim,very protective of him,it is a battle some times occasionally I get a bit of approval ,Dai would say I do not suffer fools gladly ,but I just want the best for Slim,and will fight his corner.
When you end up in hospital you have to remember ,not many know what Myeloma is!!!! And from being a complete novice 2 1/2 years later,you have gained an awful lot of knowledge.
CDR has worked for many on here,Slim is now on that as well but as third line treatment, had CDT then CDV then SCT,all considered failed,so third line treatment is CDR. With BMB every 2 months,the sad fact is what works for one person,does not mean,it will work for another person.
I hope you will be one of the lucky ones,many people sail through treatment,just try to do something positive every day,don,t sit there thinking have I drank enough liquid,its listening to your body that will get you through this,any doubts about anything,get it checked out,leave your dignity outside the door and pick it up on the way out. Eve
Hi
My husband Slim has a hard time with water in take,my attitude is why make your life miserable,as long as the kidneys are getting flushed through that is what matters,his tasty can change on a daily bases,so one day he drinks a lot of milk,another diluted orange,another fizzy drinks,he drinks a lot of tea,but if I put 6 bottles in front of him,it would become an issue,so a small full glass is buy his side all the time,going out I make sure drinks are put in freezer,so they keep cold.,it works for him.
Slim had 8 months on Claxane,recently started 40m of Claxane ,but it did not stop him getting a clot in his artery?????,So now on 100m talking about changing to new drug!!!!,I read an article that low platelets tend to thicken causing clots,so will have to do some research as Slims Platelets were 37 at time of clot .he injects himself 2 inches from navel either side working out ward,he does not rub his stomach ,every morning I moisturiser this area as well as any pressure points,it does help as Slim is by nature slim and at one point hit 60k. although no appetite ,a little and often in food and drink.
I think you will find hospital,s vary in there opinions,you can help yourself!! I make sure that Slim has 2bananas daily for potassium ,plus a mixture of nuts and fruit for magnesium ,I use to do meat and veg,but quickly went off fish and veg and heavy meats as he has been sick eating these,so put him off the food,but he will eat scrabbled egg and salmon ,once I gave him what he fancied the weight crept up slowly and now weighs 71.6 k.
My attitude is as long as he eats and drinks,also makes life easier,this bxxxxxxxy Myeloma is hard enough,plus all the pit falls along the way. Eve
Hi Trish
Good to know Peter has had op,
Velcade takes up time but Slim found less side effects,as you have family coming over from abroad can you not delay treatment for a week,usually they start you on a few Dex days,that will help in the energy department,and give Peter some quality time with his grandsons.
We all want treatment to start ,but some times I think it's worth getting off the round about and recharging batteries,will give him quality time,plus time to build up,ready for the next roller coaster ride,with or without pit stops.:-)
Might be worth asking,love Eve
Ps sorry I missed it was cycle 6,brain addled these days.
Hi Gill
Well I echo what has been said,no one wants to be we're you are right now, but we all know its coming.:-(
It is a shame,that dreams v
Have not been full filled,but life goes on,you cannot stop the world,you just get off the roller coaster ,but it does leave you a bit lost as that has been your life for a long time,
Gill no matter were you scatter Stephens ashe,s ,life must go on,you have done yourself proud ,just making the trip,Stephen had very faith in you ,you just have to find the courage to move forward.
My love and best wishers to you,make sure you keep lots of bubbly in the fridge,to raise a glass to Stephen,Eve
Hi David
You cannot help being a Dinosaur !!!:-P your lucky you have us to drag you into 21 century,he he he.
Great when you learn one thing new,all my love Eve:-0
Hi Babs
I know you have been having chest infections on the maintenance ,it is handy to have Laviinia,I like her a no nonsense woman,always contacted her if we had a problem,not scared to make a decision,
Slims no longer on trials,I believe they have appointed a haematology nurse named Jenny ,no Myeloma nurse!!!!!.
Slim was in Kent ward,very nice,so there are good wards as well as bad ones,.
I know you would not shun us,as treatments mount up,and Slim does not look to good at the moment,you can almost see people's thoughts,life just stopped at present,getting sun glasses out,that sun is blinding.took him down to Walmer castle to watch the world go by.Hired a scooter for the weekend,had a grumble but said he would take the dog for a walk!!!!!!
Did you enjoy NY,and when do you head off to Ozz??? Always had plans to do the figure of eight in motor home,Slim is an ex diver,but he wanted to do the barrier reef,one of the few he has not done. Go on girl get out there ,its a lovely world. Love Eve
