This topic contains 16 replies, has 5 voices, and was last updated by 
eve 10 years, 3 months ago.
Hi all
Wish I had a crystal ball,but will have to do with not knowing and what I would like!!!
Slim is home,and it’s early days,lots of deliveries and people calling,but slowly getting things done,paper work filed today. Carers coming,district nurse coming then I should be able to shut the door.sounds to easy.
A few complications concerning treatment,just about ready to start treatment again next week,but might have to put it on hold,in the mean time need platelet support from local hospital,told everything is being organised,just waiting on a telephone call let’s hope it comes before Friday as his platelets are 21. The need to keep platelets up for the wound to heal but not let the blood thicken so he does not have an artery clot is very important,a fine balancing act!!!!?,,so I am wondering why I have to do all the checking and hospital locally not to concerned????? What did we do before telephones and computers?????
Another lovely day in Deal,fantastic Weather,Slims had another new chair ,son in law built ramp,so he might just be able to get out and enjoy the weather.
Life goes on and every day is a gift,so I do not think I will worry about the next six months or even tomorrow,just enjoy today.Eve
Hi
I didn’t realise you were in Deal. My aunt and uncle live there. Our children are visiting for a few days in the summer and live going to play by the sea.
I’m sure with your experience so far you won’t be content to trust they do it right, but I hope they do.
Hi Princess Fiona
Yes lucky to live in a lovely place,we usually take the dog for a walk along the sea front,on a clear day France can be seen.
Hope the children have a lovely time when they come and this beautiful weather holds for the rest of summer.
The hospital visit was not great,4pm appointment got platelets just after 6pm,I think some one must have forgotten to order platelets from London,so nothing has changed locally,next week it’s the Marsden so things should go smoother. The local visit just reinforced why we go to the Royal Marsden .
Cannot complain,beggars can no be choosy,but it’s over now.Eve
Dear Eve
They certainly know how to make life difficult for you !, but I’m pleased to see you are still pretty chirpy and fighting Slims corner. Here’s hoping the treatment can start again soon. Is the leg wound very troublesome?
Love Helen
Hi Helen
I sent an E mail to you!,So my question is are you alright????,or just making the most of this beautiful weather.
Slim has had another spell in hospital,he comes home today!!!at peace with myself,would have liked ,the hospital to forget about ticking so many boxes and consider the patient and carer before they feel the need to send in palliative care team,with out me being there!!!!
These experts need lessons in communication,what happened to the theory of if a patients wants to know they will ask!!!!all of a sudden it’s the patient has to be informed,I wonder if it’s for there benefit or the patients!!!!!puts you off having experts on board,
So I hope you are not going through a blip???
Hi Eve
I’m sorry not to reply sooner, how is Slim taking all this palliative care? I’m guessing he’s still trying to tough it all out still? Are you managing to handle it all ok? It cannot be easy for you.
I’m ok. Relapsing again and this time steroids are not working well. I feel well though but my light chains are bouncing down then up rapidly with each dose of dex! I’m going onto Pomalidomide at some stage. I have severe back pain and am not feeling up to doing much, though some much stronger painkillers allowed me to feel near normal while we were away in Cornwall last weekend. I’m hoping it is just degeneration but it’s wait and see what the MRI scan shows now.
I’m totally fed up with being on meds all the time! I’ve had 4 months off in 3.5 years, move over Andy I’m right behind you using up all the drugs. I just hope the new ones in the pipeline hurry onto the market!
I’m sorry I’m not my usual optimistic self but it’s very wearisome at times.
Love Helen
Hi Helen
Good to know you are doing fairly ok,may be pomilidomyde will be the one for you!!!
Slim did well using Velcade second time round,knocked to 10 percent on 3 cycles,the platelets and artery blockages were the problems.
Once he realised what was going on,had an impact,but just wanted to get home,did not want it to be this way,but the damage was done !!!
They upped his OxyContin plus gave him Another drug,that resulted in a build up in the body,so had to have an anti dose ,not nice,plus had brain scan,no damage????
At this stage you do not have much choice but to cope,hence this at 0300 .
The realisation that you save the NHS millions of pounds by care in the community,and the package for care at home,has not been thought out properly.
They asked me would I be bringing him back to hospital near the end,and as blunt as I am,I asked why?? To spend 7/9 hours on a trolley and die in A&E,because of the complications involved I am trying to get a few things in place now.
I think they will offer hospice relieve,but do not think he will take it up now he is at home,they gave me no time to approach the subject slowly.
He is in acceptance ,ruling the roost at home,but I would not expect anything else of Slim,he feels if he can control it’s going to be ok.
I can only say to you Helen,just keep that determination going,it will keep you going,holidays,weddings,all thing to enjoy and look forward to.
Why worry about tomorrow and spoil today,love Eve
Hi Eve and Helen.
Helen I hope the strong painkillers didn’t spoil your trip to Cornwall. I know they work killing the pain but I find they space me out and zombiefie, if that’s not a word it should be, me. Back pain? Not feeling up to much? I think that is a complaint a lot of us have unfortunately.
I’m starting my 8th cycle of Pomalidomide and got my latest PPs results 8.48!!!!!! That’s the lowest they’ve been since I was diagnosed. I’m hoping it can keep up the good work for a long time.
Eve you and Slim always amaze me. No matter what this horrible disease throws at you you carry on making sure things are done your way. You both are strong willed and know your OWN minds. It must make arguing with each other a long and rowdy affair lol.
It’s good to know you’re starting to get your way and Slims at home. I hope the support you are now getting enables you to get a bit of rest.
Every day is a gift.
Andy xx
Hi Andy
They say opposites attract !!!!!! I took a instant dislike to Slims views in 1981 !!!!!
Still together all these years,he makes me laugh!!! That’s my excuse.
Slim is a very determined character,in a very quiet way,when he says something like do not let them put DNR on my files,he means it,and expects me to honour his wishers no matter what my feelings are,and I do,because he ask for so little, and this is all about Slims choice of how to die. I cannot say I agree with a lot of things he wants as I have a different view on some things,but he trust me!!!
This means I have the battles with officialdom ,some times with family and odd friends,( they think I will not let him go ,and should except everything ) but it is completely against Slims Wishers ,I cannot tell you how many times it looks bad,yesterday day was one,this morning he is reading the paper!!!!!,but we have been here so many times!!!
He has such a strong will,it defies nature,but I would not expect anything different from Slim,cannot wait to see the district nurses faces!!!sitting up reading the paper, lol.
Love Eve
Hi all
As I am on thought I would let you know what is going on in are lives,hope it’s not to frightening but it does not seem like this to me.
Slim is on palliative care,plus we have two carers coming in 4 times a day,plus district nurse to do driver,I have back up medican and I often have to call the district nurses out any time,they work 24 hours a day on call.
We have also had 2 palliative care consultants and doctor come in.they keep me well informed plus I have copies of letters sent to my doctor,and last but not least my wonderful doctor comes in.
Everyone is concerned about the amount of medication Slim is on,but he is having no bad side effects,just different levels of pain that cannot be controlled,if I may explain,it’s not so much Myeloma Pain although I am sure that is apart of it. It is the result of amputation and artery blockage which is advancing,plus open wound,this is what I do not want to scare anyone with!!!!!!?,
At the moment he does not want to go to the hospice,and I have to respect his choice,
We take every day as it comes,no tears or regrets,just enjoying what ever time we have,just made him a bacon butty and a cup of tea. Love Eve
Eve, so sorry. I am thinking of you both.
Regards
Tony F
Dear Eve
You really are a remarkable woman, I suspect Slim is very happy that he chose you to spend his life with. I hope he managed his bacon sandwich this morning. Are you getting out with the dog still?
I think about you a lot.
Love Helen
Thank you,for all your thoughts.
I very seldom leave Slim now,he has to be good before I think of going even to get a paper,today the district nurse came to change his driver and 2 carers came so I popped out with the dog,he knows he has to do a super fast pooh. Lol.
I have agreed to a hospice nurse for tonight!?, coming at 10 pm going at 6am,not even sure I will be able to sleep,Slim wants me in the room,so I am trying this reluctantly ,the DN tells me my body will eventually give in if I carry on,but this is not something that has just started,it’s something we have lived with for years,
He does go from one extreme to another,all I am doing Helen is making sure he gets what he wants and is not making decisions for the wrong reason,my youngest daughter goes away for a week on Sunday,we have told her to go!!!my other daughter has a holiday booked for the end of this month.
I have always had a believe that people pick there own time to die,and Slim still has a strong will to live,I would hate him to feel he is a burden to me. Plus time is just a number of hours,what does it matter night or day,it’s not really important in our world at the moment.
He loves being at home and ruling the roost,TV controls telephone,carers,loves his scrabbled egg with smoke salmon and bacon butties be it small quantities ,he had a bad day yesterday,today he is defying nature has been awake since 05.30 am,and has just decided to have a nap before the night nurse comes in!!!!!I would not change anything Helen. Love Eve
Hi Eve
I love that you are so relaxed about it all, I suspect Slim is hanging in there because he is so loved and cherished. The dog is doing ok too then? Wasn’t it ill too?
It’s good the family are continuing to do normal stuff.
Love Helen
Hi Helen
Dog is fine just an old man the vet said,not to feed him on are rich food,but he does like smoked salmon and scrambled egg plus bacon butties.
Legs collapse every now and then,will not leave house when Slim is very ill,would not go out yesterday,but today went to beach be it all 15 minutes.
Gammon steak in a cheese sauce tonight!!!!. Lol.
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