Hi Carol
Well you got there,,now for SCT,if you can I would have a holiday while you are waiting,will recharge the battery,s read for SCT.good luck.Eve
Hi Sara Jane
Well done,you have nothing to loose going on maintenance as you were on CDR anyway,you will not find any results for maintenance ,you could try the Myeloma Beacon,as US is always ahead of us.
It's time to start planning ,all those things you keep putting off,good luck.Eve
Hi John and Tom
slim had a tooth removed in the middle of treatment,just had to have had Zometa at least two weeks previous ,dentist would not touch it,hospital. Dentist took it out,said Zometa not as effective as time went on!!!!
As for the pain John they do zap it when the pain is intense or causing cord compression,so all good you should find relief soon,much better than taking heavy medication.
The problem with pain and medication,is only you know how bad it is and how it effect you,this is why people will tell you to listen to your body,and try not to be superman on the Dex.Good luck with the rest of your treatment .Eve
Hi Lolly
How are you getting on,could not reply to your private e mail,as your profile on this site does not allow it.
We had the same thing about beds at Kings,they do not understand some people have travelled for hours,and also have to get back!!!,I was so angry as the bed was available but area not cleaned,so told the sister I would do it myself!!!the cleaners were soon there.
This 4 hour journey will take its toll on you Lolly,and you are going to need all your energy and strength when Steve comes home,when Steve sleeps try to get your head down in the chair,you do need to rest.
SCT are the norm there!!!,it goes on everyday ,so he is getting the best care,it will kick in this week,do not worry about him not eating encourage him to drink,if he fancies something like milk or ice cream,go to the kitchen and ask for it!!!,
Tears will just wear you out!!!,Steve will be in his own little world,getting the best care possible,in a few weeks you will be looking back and just be glad it's over,once Steve starts recovering,it will be very fast,you will see the change over night.
Love Eve
Hi Maureen
This is something you could have done without!!!,I suppose it depends on how big the op is on the recovery rate!!!
As secretary knows nothing about it,if you do not get that call,make sure you ring again.
Ian must be feeling low!!! It's very hard to keep smiling when things go wrong,just keep thinking it can only get better!! Eve
Hi Dai
Did I read this correctly ,you have 2 special haematology wards,internet connection!!!!,it's worth putting up with arms like a patch work quilt, just for the fact that you have a bed in a haematology ward.
I just dread Slim being admitted,have no choice it's A&E,but usually a battle to get the ambulance drivers to take him to his own hospital,the last time one asked me had anyone spoke of a hospice to me,right in front of Slim!!!,then A&E for hours,then if we are lucky,a bed can be found on Braebourne Ward which contains only 6 beds!!!!,nurses are excellent .
So Dai count your blessings,lay back enjoy and get well soon,Janet will have time to catch up with all the washing.Eve
Hi David
Like everyone else I was wondering were you were,but in some things we are are a private bunch,but glad to see you have not kicked the bucket.
Well it seems to be doing the job which is the most important thing,so you most be pleased,
A few more cycles then maintenance,should work well for you. Wishing you the best Eve
Hi David
Well I have to reply to your post, Bump can I put daisy on the end,as in Bumps a daisy!!! Eve
Hi John
It is important to get your teeth checked out ,but also Zometa will not cure your problems overnight,you will have this pain for some time until chemo starts working effectively .
You are on some heavy drugs,which have to be taken correctly to get the best relieve ,morphine zormorph dose 40m,plus liquid,and paracetamol . If you take the paracetamol with the morphine tablets it makes them more effective,if you are having to use the liquid as well,the tablets are not doing the job they should be doing,most people would be very lethargic with those quantities.So I would see your GP or ask to see a pain doctor.
If you are trying to do things,like lifting heavy things,or car journeys,or even light work,then you should stop,rest but walk about,your body will improve given time,I know it's not the answer you are looking for,but like everything time is a great healer.
My husband could not lift anything,and was in so much pain on car journeys,even just standing caused pain,so you have to listen to your body,rest when needed,and walk about to keep muscles in your back working.Eve
Hi Ann
I have a Braun,found it cheap on Amazon,did not bother with caps as only Slim uses it,and caps are about hygiene !
I take it into the hospital sometimes,when they check Slims temperature ,I check mine shows the same reading!! Just in case.,same with BP machine,needs to be checked at least once a year .Eve
Hi Gill
Well you did it,come hell or high water,good on you,you did make me laugh !!!!!
A few tips Gill!!!
Buy a spare wheel,this new thing about not needing a spare is not on,specially taking on long journey,s !!
Be careful parking in Calais !!!,if you take the road to the left nr dock,keep going and sea on the right follow sign for campsite and air de services,keep going lots of parking on the front free,nice restaurant you could have spent hours in!!
You now have 5 days to have your dogs checked and passport stamped,so it could have been done nr the village your house is at.
Next time contact me I live 9 miles away from Dover and I am sure we could come up with something to at least start you off early from Dover than London.so you will get more time on road,I am on your Facebook or private message on here.
Last but not least I think you have done wonderful,would like to here about your return journey
Deep breaths Gill,hope you bought plenty of plonk home,onwards and upwards.Love Eve
Hi Dai
Glad to hear you are coping and still have a sense of humour,my first thought was all that washing and drying,in this weather I do resort to the local laundrette ,it's usually on my way to the hospital then collect on return all done and folded for £9 a bargain.
District nurses on board!! All good news specially for Janet,let's hope a ripple mattress works,the cushions are good for travelling as well as sitting on to help with the pressure sores.
Looking at your last blood results they are looking good,so you must be very pleased,let us know how you get on with this trial,as you seem to be the only one on it at the moment ,on this forum.
Good luck .Eve
Hi Sarah
I forgot to mention,Slim is on CDR,at a half dose!!! Should start his 6th cycle today,but cannot see it:-D ,as we do not know if it's the Revliimid or Myeloma that is effecting his blood readings,as the only way to tell with Slim is a BMB,so waiting for results.
Every one is different,and as I said if it buys a little time.Love Eve
Hi Andy and Steph
Well it's 02.28 am,and I am not on the Dex:-P think I need it to give me some energy:-)
Slims been up as usual I wake up and worry about him,he,s now in bed asleep,and I am wide awake listening to the storm,grateful I am not in a plane or on a ferry!!!!
Travelling to Canterbury today,Slim needs platelets they were 13 on Friday,so wrapped him in cotton wool all weekend,just in case of fall or bleed,dreading travelling as the road has lots of mad foreign drivers on it,they are good at side swiping,the lorry drivers just do not see you.,and the back roads will be blocked if this storm reachers it's height at 6 am.>:-(
Have you had any full body scans or MRI lately ,as your pp are fixed at that level for a long time!!! Might be worth finding out what is going on in the bones,that is if you want to know!!! I have mentioned it because as you know the only true way to tell with Slim is a BMB,just had one waiting on results!!!!:-S
Well just going to make a cuppa Andy,and watch the storm!!!! Love Eve
Hi Sarah
This is a hard one!!! As no one can predict what is going to happen,doctors might have a general idea in terms of the Myeloma,but your mum might have other ideas,I would fight along side your mum,for every minute she has left.
You mum will chose to die when she wants to,and that's the way it should be.
Slim has had 3 stays in hospital this month,two for Sepsis,and the one thing he made clear to me is,Do Not let them put a DNR on his file,so my job is clear,he wants to keep fighting no matter what!!!!
We are waiting on results,but his platelets are not holding,we know he is on a downward path,but we have not given up hope or enjoyment of each day,you can pack a lot into a day .Eve
