Hi Gill
Glad to here Stephen managed his 2nd SCT
It is awful when you are stuck at home,first the hospital,then home I felt Spring came and went with out me knowing,and Slim has not got to the hard part yet,on 5th cycle ctd.
Sleep is the worst thing my body clock woke up if Slim moved!!!!!then in the day it just went on,bath toilet,fetch and carry,every time i sat down he seemed to ask for something.cleaning went out of the window,Friends helped out a lot,with dog,shopping,a friend cleaned the whole flat for me.
Cat napping helped me,and forward plannning,helped take my mind off Slim for a little while.
Hope you turn the corner soon,best wishers Eve
Dai
How can you say that,I am a scouser,born and bred!!!!! warm hearted,lovely person and if you don,t agree i will do a Margaret Thatcher on you,I will hit you with my handbag:-P
PS got a plum in my mouth now stuck some were between my wisdom tooth!!!!
Dai
i have to say it,you have a wonderful way with words.eve
P S. Slims done 22 years of yomping in Marines just told him to go and join up again, lol
Thanks Stuart
Done and dusted next has to be photo,still learning promise not to say naughty words.lol
Hi Min
You sound about were I was a month ago,and it did not help people telling me to get some rest,
I lost the plot a few times,had to go to doctors,saves money not buying gin, lol . It did help to pop pills kept my temper under control,tears stopped flowing,saved a bomb on tissues.Only take them when my demons rise to the surface.
I have to admit,since Slim has been so ill and unable to do things,i have had to take on so much more,it has made me realise how much he did do.
I am guilty Min,have never,never Ironed in 30 years,Slim says,I am hopeless at ironing,folding,stacking dishwasher,washing dishes,you name it,its never good enough,(lol)but i am thick skinned.you need to be if you take on a service man.
S-o-d the ironing,break the hoover,and cat nap when you can,your energy levels will rise,I shouted at Slim,told him straight,I am shattered too,takes them awhile to realise how much you do on very little sleep.
Getting my own life back a bit,went to lunch with girl friends first time I have been out for over 4 months,it does get better:-)
As for weather what keeps you up there,have you close family there?
Nothing worst than bad weather,I used to have a saying before Slim got ill.don,t do rain,hail or snow we just followed the sun, Now have no choice,but the weather is beautiful, on the S E Coast
I for got to say,take the fuse out of the telly too nothing worst than watching the war,have you own war,and may be he will open up,must be feeling very down,.love Eve
Hi Min
Where are you on the roller coaster!!!!,at the moment I feel i am on a nice level bit!!!! feels like heaven.
Bridget seems to have gone off the radar !!!
I think every ones gone on holiday and left us behind LOL
Glad to see you jumped the hurdle, love eve
Hi Christin
I found i had to ask questions,information was not very forth coming,I think they try not to bombard you with lots of information. i felt if they were keeping information from me,but it is just that they do not know you and do not know what your reaction will be.As time goes on this will get easier,
Your dad has a right to see any results,I find it is easier,to get it on paper than have them tell me about it as I am deaf,and thing just do not register sometimes.Personally i think this should be the norm,but it,s no;-) t
On the day Slims mm was confirmed with mri scan,I bombarded a lady named Marie,with questions,her face was a picture,by the time i finished,she asked me had we met before,I think I took her by surprise,so do not be scared to ask question!!:-S
It means nothing when a doctor says theres no compression on the spinal cord,you want to know what is there,eg tumours,lesions on bones,protein levels,type of myeloma the more you understand,the more you can help your dad my husband just wants to put all his energy into getting better,so I have taken the rest on board,so I do all the research on his condition.
Hope this has been some help to you best wishers Eve
Hi Bellis
Just thought I would pop in and say hello,and offer you a welcome
I cannot help you with your posting,
I am assuming your mums twin will donate stem cells!!!!!.
If it is ,it sounds wonderful to me,I hope it works out for your mum,and someone is able to give you some help,Any advancement on treatment,is something we all like to know about, keep in touch and let us know,what happens.
best wishers Eve
Hi Andy
I have a slight problem,and do not know who to ask so i have come to you handy Andy,
Do not know how to change my name on this site,as I now have a different surname,can you help.
kind regard Eve
Hi VIcki
We were told if have little side effects on first cycle the rest are usualy the same but everyone is different.
You do not say what type of Myeloma your dad has,they take bloods and get 2 cycle within days,Once your dad starts on bone infusions the pain will easy but in the mean time make sure you tell the clinic it is very important for them to know any side effects.because sometimes it,s not bone pain,could be infection,steroids hide infection,I can only describe it as going down hill slowly,you know someyhings not right and you tend to think it is the chemo.
We learn,t the hard way,never again will we just think it,s chemo,check anything out your not happy with. Dex does give you a boost,its after the 4 days,mood swings,lack of energy.its agood idea just to keep a note of thing,eg,bp,temp,weight,general how your dads feeling,if things start to go down hill,you will see the changers on the chart,[just an idea]I do it once a week unless Slim says he is feeling ill.
Do not expect quick results,Slims on 5th cycle of CTD with break for 5 weeks with septic pneumonia [not nice ] will do 6 cycle before he sees consultant.Saying all that he is 500% better and it,s lovely to see.
Post if you are worried about anything if you feel you cannot bother the hospital,the hospital will tell you to ring.they do understand it is hard to make that call,but they would prefer you to call if you are worried.
keep in touch Eve
There is all so a good side for example I changed my gp within the practice because i felt I needed someone who would listen to me.The new gp is a lady and talking to her,she told me on mondays she does her home visits in her own time before she starts surgery,i bet not many gp do that.
When Slim was going to ITU he was rambling on about getting married,and a lovely nurse arranged the wedding ,It took afew hours to arrange and we were married that night,These are just a few of the nice things that people have done,
My friend Ann who had my dog for 22 days,is another one,her husband has lung cancer ,yet she finds the time to help me out with the dog,so there are lots of good people out there,may be we should celebrate ,all these nice people who go that extra mile to help people!
When my daughter was expecting another child after Matty,the consultant sat her down and promised he would personally be there at the birth and he was.
Also another doctor,apologised to her for the dreadful time she had,although it was nothing to do with him.
The people who raise money for myeloma.
I have a believe that if we learn something from a bad experience it has not been in vain,and it makes us better people.
I will leave you with those thoughts love eve
Hi Min
It makes me so mad when I read about some of the things that go on in hospitals,but glad Peter is eating,a good sign. Its all just awaiting game hoping every day he will get a little bit better.
It will get better Min,look at us,2 months on slowly Slim is feeling better every day,and does not remember much of the bad times.At times i thought it would never happen.
I think children,some times are in denial it,s the only way they can cope with what is going on,no one wants to voice there fears in case it becomes reality.So they carry on with there busy lives,as i said Min its a lonely place.but,as you said to me,it does get better,peters just got to get over this hurdle.I agree with you about dog walking,My friend who walked my dog,says its the only thing that keeps her going,
Keep Posting love Eve
Hello Meika and Christin
Just to say a welcome to you,
May i suggest you look at the post[ a ray of hope ]then go back over the old post,you can do this by clicking on photo.
It might give you some hope and encouragement.
best wishers eve
Hi
Thought of some more stupid remarks,
When Slim was in A&E,being sent home,I pointed out his bp 60 over 40 told it did not matter!!!!!!
|Fathers Day went to barby,first time out with people for a long time,daughters sil,came over saying Slim you look rearly well,I expected you to be looking,ill and grey looking,did not comment on his 5inch height loss or weight loss of 4 1/2 st.:-S
The best one was when he came home from hospital,a friend who I had not seen for 6 months,Slim had gone to lie down,as he shut the door ask me had he made a will LOL
The ones i like they see you pushing a wheel chair,quick look,avoid I contact and cross the road,i think there scared they might catch it.
Bridget my grandson,is now 15,he cannot talk,and has eye problems as well,connection to brain rather than eyes not working,He is a fine example when a midwife is not fit to do her job,they waited until the court case was over before they got rid of her,but she still retired early on a full pension,grrrrr you can accept mistakes happen,its just the lies that followed
now you might realise why I question every thing,there even getting use to me in the hospital,I no longer have to ask for results of,bloods klc,mri,cat scans.Feel if i have some control,also helps if you can produce results quickly,they tend not to believe you if its verbal.
best wishers Eve
Hi Min
How are things going with Peter and yourself,is he starting to pick up ?
Have you far to travel to hospital ,It all takes so much energy,It is suppose to be a nice day today,although its raining right now,lets hope the sun comes out,I find things all ways seem a little bit better on sunny days.
This is just to let you know,I am thinking about you,it can be a lonely place at times,it always leaves me,wondering how much the body and mind can take before we give in,so many having such a hard time at the moment,It makes you realise were your strengths lie,I try to think of it as a big learning curve,the bad thing is we do not want to be on this journey,but it does teach you so much about yourself,
Lets get to more practical things
How is that kitchen going,the only problem with on line buying is you have to be there for deliveries,hope you have someone close who can help you out with things,I was lucky a friend took my dog,but the poor thing new something was not right,mind you he did not want to come back:-P he was getting five walks a day!!
If you need any on line support you have my e mail address,not to good on phone as,quiet deaf,believe it or not it helps at hospitals,it brings other senses out,you can read faces when you ask a question!!eye contact is a wonderful thing,most people cannot do it when there telling porkies:-|
love eve
