[eveParticipant]

Hello Everyone

I have decided to post on Slims condition as I have been on this site for three years,and often wondered why people stop posting!!! Now I do know why!!!

As most of you know Slim is on a downward journey,at Christmas he was told no more treatment locally!!!!,so we began are weekly trip up to the Marsden,and I can say it was the best decision we ever made,Slim has been treated there on Velcade and has responded well to treatment,last BMB showed Myeloma at 10 percent this was 4 weeks ago!!!.

Nearly three weeks ago he was admitted locally,with infection unknown on a Monday morning,after 7 hrs in A&E,a bed was found,wrong ward,but it was a bed,second day Slim was Diagnosed with C-Diff,so moved to a side ward,by Friday one leg was changing colour,I spoke to the doctor,and explained his foot was freezing and he had had an artery blockage in that leg befor,so I thought it was a artery blockage although he had low platelets!!! To cut a long story short ,he thought it was a DVT,because it was Saturday before they could rule out a DVT it was around 30 before a doctor looked at his leg again,day sister not interested because he was not a kidney patient,nurses kept apologising,so I took it on myself when I knew a doctor was outside,to go out and say in my loudest voice,will someone come in and look at my husbands blackleg,he came in ,and vascular doctor called in straight away.
He was moved to a medical ward under vascular surgeon,for decision to be made.He was in tremendous pain,because his leg was dying,in all honesty the vascular surgeon explained what he was doing from the start,he was trying to reduce the blockage by thinning blood with Clextane and getting Slim in a position to operate,but given the prognostic of Myeloma he was of two minds,understandable !!!!
The Medical consultant wanted to send him home!!! Were eventually the blockage would hit the kidneys,I think you can guess the rest!! Understandable again,it was his young doctor that did not listen to me,and made an error in not considering a blocked artery,

I could understand the vascular surgeon,Slim could bleed out in Theatre or infection could take over all to be considered and not taken lightly,but the alternative was go home to die,were the operation offered hope,loose half a leg,plus all the complications,but offered hope.
My admiration of the vascular surgeon knows no bounds,he operated on the following week,and it was a success,Slim is doing very well,he still has a little infection which they are trying to track down,and as long as no blood clots take hold,he should be out next week,minus a half a leg.

So he lives to fight another day,thanks to the vascular surgeon and Slims will power to want to live,never underestimate the power to live.

We now have to see if haematology will treat him locally ,until he is fit to travel to the Marsden!!!,his last BMB showed Velcade had worked again and took the Myeloma down to 10 percent,after 3 cycles,we want to carry on going there as although it’s a long journey treatment is all done in one day highly organised and efficient,but hoping locally they will be prepared to treat Slim the same as the Marsden until we can make the journey.

This is a long story,and I was in two minds to post!!!,one because I did not want to scare people but looking at it from a different perspective ,it should give you all hope.

Stand your ground and fight for your husbands right to live or the right to choose to die,his body his life,it’s not up to the medical doctors to decide if he lives or dies.
Sounds harsh,but Slim is a fighter and he made it clear to me he did not want DNR put on his file,with the knowledge that it’s only a very small percentage of people that survive for 6 months after resuscitation,

He is doing well and as Andy would say every day is a gift .Eve

[duskParticipant]

Dear Eve

I know you have felt very sceptical about me because I do not divulge personal information in the rare times I post. That is my right to keep a low profile in a public place.

But I wanted to respond to this post. Medical opinions in emergency situations in local hospitals are not always exact, with mostly junior doctors and agency nurses around  at weekends.

What happened to Slim may not have been avoidable even with vascular surgeon input earlier ( I have some experience of this with someone). So it is to be lauded that Slim is a fighter and you can shout out loud and you had a good medical input in the end. That is all we can all hope fo in the current system.

As for DNR’s these are difficult decisions and each of us different. Slim depends on you and you care very well for him. Many have no one and struggle alone and serious decline may not be ‘doeable’ for them. Inherently I believe doctors , the courts and those who make life / death decisions should not be allowed to do this. Ultimately it must be t he previously expressed or value wishes of the patient, or current wishes that count- as you say it his his life.

May the rest of the journey be peaceful and less of a trauma for yourself and Slim.

Dusk

[eveParticipant]

Hi Dusk

Well you have that right sceptical,but that’s my right too,it’s nothing personal!

I am aware it might of happened anyway,but even with a 30 delay,I have had a personal conversation with the doctor who was shocked. I told him I should have had a bet with him,I also consider it’s my fault as I new what it was,instead I said we will soon know when it turns blue,but because the blockage was in the ankle it was very quick. There is no animosity ,except he saw me as a fat little grey haired lady and did not listen,when you are 65 you are considered to have one foot in the grave any way!!!! Unless you look like Joan Collins.

I am also aware,if it was not this it could have been a number of things at this Stage of Myeloma,but it is my believe it’s up to the patient to choose,with all the facts known,Slim chose,I fight for it.
At the age of 65 I have some experience of death,so when another young doctor says his pain at home will be controlled,I asked how much experience had she had of people dying in there own homes,no reply was fourth coming.

I don,t want to dwell on this I was just explaining what happened,we have jumped that hurdle,and now look forward to enjoying some summer,and hoping we have the Haematology on bored,locally.
Dusk if we ever new each other I am sure we would sit down with a glass of wine and put the world to right,the only difference is opinions plus I have the courage to show my face,and take on board other peoples opinions,no offence. Lol.
No time for politics these days. Sending you my best Wishers on your roller coaster ride.Eve

[SalParticipant]

Oh my goodness, Eve, what a lot you and Slim have had to deal with – and still do. I’m sure all this has exhausted you but I am full of admiration for your determination to do the very best for Slim at the times when he’s not able to fight the whole battle himself. Stories like yours are important for others, like me, who are still getting to grips with our role in supporting a partner with myeloma. My decision at the beginning was that I would not let go of things if I was unhappy with them. I will always be polite but it doesn’t matter if they think I’m a pain or if they don’t like me: the priority is my husband. It’s hard to stick to that, though. Your experience shows just how important it is that we, whilst respecting the judgement of the medics, shouldn’t be afraid to get second opinions, get further help or whatever it takes, if we feel that is the right thing to do.

I’m sure Slim knows he couldn’t have a better ally than you and I hope you can both have some really good times as you both recover from this latest traumatic experience.

Sarah x

[jmsmythParticipant]

Hi Eve

What a terrible time you both have had and I’m so glad to read that he is doing well. Slim is a real fighter and I know you don’t like it said but I’ll say it anyway “he’s lucky to have a feisty woman rooting for him”. Hope he improves quickly so he can continue with treatment at the Marsden, they seem to know what they Re doing

Know what you mean about not posting. We went away for two weeks and I promised not to go on site while away. We are back a week and I have just come on today. Seems I have a lot of catching up to do.

My very best wishes to Slim and take care of yourself Eve as well

Jean x

[HelenParticipant]

Dear Eve and Slim
I think you are quite right to push for what Slim has chosen. Each one of us needs an advocate and he has a champion in you. It is very easy, given the incurable nature of myeloma and the complicated path it takes, for us to almost be written off when things become grim. The closer I get to the scarey decision making about the next step, the more I appreciate every second of every day. I know I too will squeeze every last minute out of my life. I have to take my hat off to you Eve and hope you have some happy and peaceful time ahead, with treatment locally too!
Love Helen

[eveParticipant]

Hi Everyone

Thanks for your best Wishers ,we will make the best of what ever time we have,consultant from Haematology has not been near us,although he was in on Thursday and Friday,his off ice is across the corridor from the ward Slim is in. I was told decisions would be made at a meeting and they would come and see us,I waited all Thursday and Friday,no show.So I am not holding my breath.

Slim is doing great Minus half a leg,he is completely looking after himself,plus doing transfer over to chair,pushed himself to cafe and had a bacon butty,gets very tired by the evening,only problem we have now,is finding the right ramp to get him in and out of the flat,plus shower at home is a problem,but I am told it’s the start of social services financial year,so we might be lucky.

Helen your last paragraph sums up everything Slim and I Feel,and I don’t think people realise it until something like Myeloma hit them,we are just great full that he is alive and recovering so well.you have the right frame of mind Helen and it will take you a long way on this roller coaster.
This is one of the reasons I posted,to give people hope,trust your judgement,plus in my case follow your partners Wishers. I was told by a doctor who brought up the subject of DNR,that in the end we might have no choice,I told her,no matter what Slim would come home.

Good luck to you all,and Jean carry on cruising Love Eve

[PhilipandfionaParticipant]

Dear Eve,

Please can you clone yourself at least 2x, then send one clone round all the hospitals in the country teaching the doctors, whilst the other doubles up for you so you can rest from time to time.

I take my hat off and bow deeply to you, and hope that if and when necessary I shall be as good an advocate and carer for my husband as you are for Slim.

I know you said you felt it was your fault, but honestly, we are so indoctrinated to believe the men in white coats and authority that it is so hard to question them, even when you’ve had to do it before, you always hope that this one is ok. and the younger doctors think 45 is old – 65 is positively prehistoric!

thank you for posting.

[eveParticipant]

Nice to hear from you Princess Fiona

My husband says my daughters are clones of me!!!!but I see them as children I am very proud of,so cannot complain.they hate to hear that they are like there mum. Lol

We had good news today,Slim is coming home tomorrow ,have arranged Slims new appointment at the Marsden,thought I had arranged with consultant locally a programme for Slims blood test and platelets to be done locally until appointment at Marsden,only to find he changed his mind,says he will not need platelets before the 17 June ,!!!! It’s scary.

Looking forward to Slim coming home,and the dog also,he has been at my daughters,.

Fiona,you will step up to the occasion !! Because you have no choice,you can only do your best,believe in your self at the end of the day you are the expert on your husband.
My fear was Slim would think he was making my life awful,and give up,you have to be firm,I told Slim if he gave up,because of me,I would hate it.
There is so much goodness that has come out of this situation,so plod on,Slim is one of the people that SCT has not given him much time,the future is getting better and better so keep buying time,as much as you can,.Love Eve

[PhilipandfionaParticipant]

Hi Queen Eve

Myeloma sucks doesn’t it!
We had the routine appt yesterday with the consultant – unfortunately it’s detectable again, so we’re waiting to see how quickly the numbers go up before deciding what to do. Before Velcade it went up quite quickly so we’re hoping that at least velcade is pushing back a wee bit so that it slows down.
We’re 2 years 1 month from initial diagnosis and so far have whistled through CTD, SCT and VCD. I’m looking forward to the next set of initials with great anticipation. The question of an allo transplant has arisen againand looking like that’s going to be in the nearer rather than the farther fuure, however, we’re still looking at a future, so for now …onwards and upwards.

[Author]

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