[eveParticipant]

Hi Everyone

Slim was taken into hospital on Saturday,woke up a few days earlier with pain in leg,thought he had pulled a muscle,took me 2 days to try to get him to see a doctor,I had a £50 bet he would be in hospital by the weekend,if he paid mr for all the bets I have I would be a rich woman by now:-P

He was operated on,on Sunday,had a large blood clot in the artery,managed to clear it,but doing ok,His feet are nice and warm,better than they usually are,he has been taking a prevent dose of Claxine,this did not stop him getting a clot.

We wait to see if he goes back on CDR!!!!!!!!and what position this leaves him in,still waiting to see someone from bloods team!!!!!!!!:-( >:-(
This roller coaster is starting to get tricky .LOve Eve

[jmsmythParticipant]

Dear Eve

poor Slim. Sorry to read about the clot but so glad that he has you on his team. Good to hear that it has been sorted. Hope by now he has seem the haematologist and they have good news for you both. This is such a shitty disease

Keep well Eve
Love jean x

[bandityogaParticipant]

Hi Eve

Sorry to hear you are both having a hard time of it again. Here's hoping Slim will be out of hospital soon and on his way to beating this awful cancer.

Love Maureen x

[eveParticipant]

Hi Jean and Maureen

He has just rung me to say all Chemo stopped until we see consultant,I was expecting it to stop.
Now its when do we see consultant,I was never happy about the CDR as when he was on CDT the Myeloma increased!!!!It is a spin off,of Thalidomide,plus known to cause clots.:-(

With Slim only getting 6 months remission after SCT,he is just buying time now very much like Dai,but if he does as well as Dai,it will be worth it.:-S

We have the summer to look forward to,when it comes, how are things with both your hubbies????? remember to look after yourselves ,it takes more than a good nights sleep to stop fatigue, Love to you both.Eve

[meganjaneParticipant]

Hi Eve,

Hopefully the consultant sees Slim soon so you will both know what the next steps are. Thank goodness you got him to the Doctor, I hope the roller coaster calms down a bit for you.

Megan

[tonyfParticipant]

Oh Eve, I feel really sorry for both of you. Slim seems to be having a very rough patch at the moment.
Hope you get to see the consultant soon.
In the meantime, chin up!
Tony F

[sanParticipant]

Hello Eve and Slim, sorry to hear that Slim has had a bad time of it, i so hope that all is better for him soon, my Mum saw the Consultant yesterday chemo has been stopped [the rcd trial] because of the rare liver complication which the chemo drug caused apparently, she was on fragmin when she had revlimid for clots, her pp's are 3.3 at the moment but not sure how long it will stay like it now, my very best wishes to you both, this illness is hard on everyone!! take care San xx

[eveParticipant]

Hi Everyone

Slim is home now,have not spoke to consultant,but CDR is questionable,Slim already had a liver problem,plus kidneys ,his colour left a lot to be desired,but looks a little bit better today.

The doctor at the hospital prescribed paracetamol ,although I told her about his problem, I said not to take Chemo drugs or paracetamol ,the nurse said if the doctor prescribed them he should take them, I was very polite,!!!!,in the end they just accepted it.
Interestingly the vascular surgeon understood my problem,junior doctor prescribed pills!!!,you have to check and double check,were Myeloma is concerned purely on the side effect plus damage done to the body,.

Anyway home and sleeping,would not take a zimmer out of hospital,hiring a buggy for a few days until he feels better,he said don,t bother you can push me in the wheelchair ,ha ha ha, no way,nearly killed me off last time.,so buggy it is. Love Eve

[tomParticipant]

Aww Slim and you Eve

Aint nothing simple with this bloomin MM, am sure you are near fed up with it all.

Am pleased slim is home and on the mend, I bet he his happy you are on the ball. Let Slim keep the bet money he owes you if he promises to listen to you straight away as am sure he knows you know best :-).

Stay Well Slim and stay away from the hospital (unless Eve tells you different)

Love Tom Onwards and upwards xx

[eveParticipant]

Hi Tom

Tried that its likes talking to a brick wall,but there again he is admired for putting up with me!!!! 😛

It's very hard to know we're to draw the line,I know he does not feel save in hospitals, I know he gives them a hard time, I am pleasant ,I do appreciate the problem they have with him. It,s not just a chemo brain,his short term memory is not there and with op,it did not help,minor strokes spring to mind,this brings fear into the equation ,plus trust:-P

The doctor said I could call any time(thought I was fussing) I assured her,they would be phoneing me first,if I could not visit until 2pm. Lol guess what they phoned me!!!:-)
It is very sad to watch someone who has a very strong character being reduced to a shell,all that loveliness fading 🙁

Anyway we wait to see what the experts come up with:-P On ward and Up ward Tom Love Eve

[BADGERParticipant]

Hi eve

sorry to hear about Slims leg he should listen to you as i bet you know as much as some docters by now this is all you need more worry i hope he makes a speedy recovery and you can get him back on track buggys are great i was speaking to a lady who lost her leg from cancer and she had an all terrain one marvellous got her almost any where they had a ramp to get it in a van they had we have just come back from swanage had a week of good weather so that was a bonus
Tke care love jo x

[eveParticipant]

Hi Jo

Good to see you are getting a break ,I suppose as long as it,s not raining ,we call it good weather,would really like to see some sunshine were you can sit out in the garden in the evening and enjoy the sunset, I do miss my sunsets and sunrises not the same in this country.8-)

Jo with the buggy I have just got to get him in it!!!!!:-P attitude with in the mind. I know once he tries it,and knows he can scoot of with the dog doing catch up,he will enjoy it, to him its another nail in the coffin.So waiting until Friday hiring one for Sat and Sunday.;-)

Ex Marines,stubborn. As hell.cannot live with them,cannot live without them!!!!,any one married to a service man,will tell you the same,I think they brain wash them,mental attitude leaves a lot to be desired ,but it is a good thing in these circumstances .

Good to know, you are still going strong,you never complain,so I take it your hospital is brilliant !!! Love Eve

[DaiCroParticipant]

Hi Eve & Slim,

I have been there but they didn't give me a 'T' Shirt or an operation… which sounds good.:-)

I had a full blown DVT in my right leg in June 2011, followed by a course of Clexane: 150mg, for 6 months, reduced to a maintenance level of 40mg, which lasted until July, 2012 when I had a perfectly matching DVT in my left leg. They upped the Clexane back up to 150mg which I am still on to this day. A ward Doctor told me that only 60% of the dosage is effective… so 90mg of the 150mg and only 24mg of the 40mg dose are effective… in his words the 40mg will never help repel or stop a DVT. (Forgive my maths if I am wrong but hopefully you get the idea)

Both times it took approx. 3 months to get each leg back to normal. I found that driving long distances caused my ankles to balloon but relatively short distances (40 miles or so and I'm Ok).

As I said a few weeks ago, the Hospital, or rather one of my Lead Nurses, supplied us with a long term basic wheelchair which pleased Janet and I have come to accept it as an aid rather than a proof of my body failing to do its duty. As far as I am concerned it is a form of freedom… for both Janet and myself, allowing us to go to places beyond my walking range… although we know that even those journeys will have to be planned to avoid too many gradients etc., because while Janet is delighted to have the chair, going uphill is no fun.:-P

I hope that Slim's mental capacity improves while off the Chemo, of which he has had his fair share and I am utterly convinced that the side-effects of the medications make up for circa about 80% of the problems with our quality of life.:-(

I wish Slim well and while I never made it into the Armed Forces (I tried when I was 17 but failed the medical with blood issues…) I did manage 14 years as an underground miner and learned a lot of hard lessons from some very hard (but always fair) men. 😎

Don't take any crap from him while he is suffering… you know that if he was anything like his true self he would not be proud of how he sometimes reacts to your care efforts.;-)

Much love to you both.:-)

Dai.

[eveParticipant]

Hi Dai

Good to see you are getting about,have you tried a scooter,you can hire one see if you like ir first!!! I know some one who fixed a board on the back,the same way as in prams,his wife hops on ,problem solved!!!:-)

Slim has had the blood clots on lungs,this one was in his artery rather than the vein in his right leg,watching his foot ice cold going purple!!! When we got to the ward it was full of men with only one leg:-( and some were still scooting off outside to have a cigarette 😛

I do appreciate that a lot of it is the effect of the drugs,also his world has got a lot smaller,and he does not have much control over anything,so small things like doing his own drugs,is a major. Issue,!!! I can also appreciate that the nurses have to keep drugs locked up,plus they do not know how is state of mind is after op.!!!,but all he needs some time is an explanation ,!!!!

These things are not taught in hospitals any more,I think they should class it under dignity,not of the physical body but the mind,the surgeon was excellent,it was basically nursing staff, as for me Dai ,I am just the carer,ah ah ah. Love Eve

[mhnevillParticipant]

Hi Eve

Sorry to hear Slim is having a bad time again. Tell him having a buggy meant I could go to Luxembourg and get around with my grandchildren and I only grounded it once! Tell him the freedom it gives far outweigh s any embarrassment.

By the way,for all out there with wheelchairs, did you know that for a few hundred pounds you can get a simple to attach motor that makes life so much easier for the pusher!

Love to you and Slim.

Mavis x

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