Hi Ivan
Just picked up on your post,welcome to the journey,may i say it is a massive learning curve,try just to take one day at a time:-)
I cannot add much more than has been said except to say,thing will get a lot better,this site will help to give you insight,and advice there are people ahead of you on this journey.
3000 people in uk a year and 20000 people world wide every year. It is a rarer cancer,but there are world trials going on at this moment Myeloma X1 is the latest.My husband is on this one.If you have a chance I would consider it.:-D
Good Luck ,Eve
Hi Sharon
You should never have got to this position on the trials,my husband is on myeloma X1 trials CTD.When you go in for blood they ask you how you are,you have to tell them the truth,and ask to see your myeloma nurse who should be there when you see consultant ring her up.
Yes you are having a bad time,and trying to look after two kids plus your home,something has to give!!!!what support do you have!!!relatives friends,even a social worker.Open up and let people help you.Money wise you should be entitled to some help,this could take some of the strain of day to day living.i hope this is of some help.
you can come off trials anytime you want,but i think trials offer you your best chance,It is not easy and things can get on top of you,don,t think you are a wimp,be honest with your team,they are there to get you the best treatment,every one reacts different to the drugs.It will get better and feel that there is light at the end of the tunnel.
Keep posting you have people on here who understand what you are going through and can help you. best wishers Eve
Hi Dai and Min
This is the same with Slim.Pain in heel then calf.I took him straight to Ashford hos.it was Sunday,new DVT clinic had opened.A&E.had stupid nurse telling me there was no clinic,made her go and check,agreed with me but kept us waiting 4 hours by then DVT clinic closed.started treatment injections had to come back next day for scan.no clot in leg.
The following week ,Easter Saturday again A&E sent home,then Monday emergency
admission .ITU ten days 12 days on ward.CAT scan only done because Slims blood test showed,infection had not reduced enough,never out of breath,never coughed even though he had septic pneumonia all over his lungs.Took everybody by surprise he had mass clots all over lung,plus wedge shape holes!!! takes a long time for that damage.6 months on heparin injections.
What I do not understand is some people are automatically put on injections with chemo treatment,some are not an injection cost £15 a day,in the grand scheme of things it is peanuts.
If you get no joy from doctor,go and park yourself in A&E,doctor should have sent you for you peace of mind,go to A&E and take that book with you just incase.best of luck Eve
Hi To You All
I am awake at this stupid hour,so I thought I would pop in,have been awake for awhile so gave in ,up made a cup of tea and here I am,wish i could get in to a good book,but my prolific reading days went out the window when mm started,Slims happy about that,as he could not get a word out of me when my head was stuck in a book:-0
Bridget can i recommend slidingrobes 0% interest,10 year warrant,having laminated floors look the real thing these days,and they do not scratch as wooden floors do.been meaning to do all this for years,never had the time,
:'-( I am itching to start painting,but i know Slim would not be able to just sit and watch me and you could knock him down with a feather right now.
Min sometimes i do not want to remember life before MM,mainly because it makes me feel so guilty,yes i want my life back,but it is not going to happen ,I admit it was not a normal life but it was stress free,living and travelling in a Motorhome for 8 years,unless you have done it,you would not understand.We both worked hard all our lives,so we sold up,and travelled,decided back then to spend the kids inheritances.no regrets.
This hammer blow of MM has smashed our lives to pieces,
Anyway time for another cup of tea,and to put the demons back in the box,cup of tea,then walk the dog. love Eve
Hi Everybody
Jo that is a lovely part of Wales you went to,only problem to many scousers,LOLthey have all emigrated from Liverpool.surprised about the weather you must have just been lucky.:-P
Bridget you seem to be going through a bad time,I know when Slims legs were swollen the more time he spent on his feet,then rested them,it helped the swelling to go down.I would agree you have become an expert on yourself,you know what is best for you,qualifications mean they know the theory,not the patient.
Did they do a good job on your kitchen Bridget!!!:-
Min hope your kitchen goes to plan,working on wooden floor and doors next,plus sliding wardrobe,like to keep my self busy i wonder why!!!!
Best wishes Eve
Hi Jean,
So glad you managed a good holiday,good to get away from everything,are you sure you just have not holiday blues,specially as you had such a wonderful time,it must hit home coming back,When we go away,coming back is hard,Lovely to see the kids,but then I want to go off again in motorhome.:-S
In theory I have no reason not to be positive,and I am not thinking the worse I am wondering why I do not feel either of those things,I think possible it is because i have no control over the out come,and Slim is coming to the end of his stage of treatment,and he will start on another path,depending how the team consider how well he has done!!!
Life goes on and at the moment,some of the post on here is making me realise how lucky we are,my thoughts are with all the people on here going through a rough patch.Were is Tom with his onwards and upwards,growing his
cucumbers LOL.:-) Eve
Hi Sarah
Just putting the same message on here in case you miss the one on b badge. Hang in there Sarah it is 3 am when you sitting there wondering how this will turn out,worst time, Awful time,thinking of you.Eve
Hi Sarah
They can do so much these days,I am thinking about both of you,i try to hang on to the believe that were there is life there is hope.
Sarah,be strong for Gordon,He has to believe he is going to make it.
I look at Slim now and think about those days in ITU.my heart goes out to you. love Eve
Hi Martin
Know one can answer your question,!!! it would not matter if your dad was young or old,the fact is how much fight has he in him,I would agree with Min,we do not give enough credit to older people.Do not write them off!!!!
Jo is a fine example of having Myeloma,with kidney damage,and she seems to have a good quality of life.
At the end of the day,a life is a life until that person says enough,no matter what the age,circumstances ,or what other people think,you have to respect this person.( no offence )
I hope this helps.my best wishers to your father. Eve
Hi David
So you had a lovely holiday.Did you see any motorhomes on the banks of the river,it should have been me,but must admit if Slim was well we intendered to do Norway and Sweden:-(
Have another lovely holiday with the family,nice to hear someone doing so well best wishes Eve
Hi Peggy
Nice to see you have picked up a bit,its not to bad once you start with the pills,Slim is on myeloma trials ctd side he has to inject himself ever day,remember not to rub the site it will cause bruising!!.
no side effects with steroids!!!(not a little bit high):-P full of energy;-)
Enjoying food:-)well i believe you LOL.
Did you get a little bit of fun out of your birthday?if not celebrate it again before Sunday.
Keep Posting to let us know how you are getting on.Eve
Hi Gill
Cannot agree more,at times i do not know how i would have managed our hospital parking,is so so so bad,plenty of spaces for staff,then patients,very little for disabled!!!
I do not use it when Slim uses Sticks because i know how my daughter feels about people using disabled spaces,my grandchild has a large chair and needs lots of space,often when my daughter has been trying to park she finds people without b badge in parking spaces,she has been known to block them in!!:-P
Were i live you can park any were in car parks and its free for disabled.:-)
Blue badgers unite Eve
Hi Keith
Will be thinking of you,hope every thing goes your way for 2sct.
Best wishers Eve
Hi Everybody
My little fix it was on prescription,I can only say it has worked,:-S 😛 🙂
just taken one heee that made you laugh.it does help.
I can honestly say normally do not touch tablets,but you cannot keep crying or raging,it worked for me!!!
Love Eve
Hi Jet
I wish you all the luck in the world,it is good to see someone doing so well,
as you know from post some people struggle, when you are in this position it is not very nice!!!!!.
There is an old saying (who wants to live till there 90,the person who is 89) so I do not think it is different what ever your age,I think you are very lucky!!!
Eve
