Dear Rachel
I am so sorry,Paul seemed to be doing so well,and if any one should have been able to get extra time,it should have been Paul,as he was one of the younger and fitter one,s on this forum,my thoughts are with you and his parents.
I lost my grandson with an infection all so unexpected,the shock and numbness,leaves you drained,I think time just gives you an acceptance that there was no more that could have been done.I know how much Paul enjoyed the out door life,I hope you will have wonderful memories to cherish.Please also remember you are also not alone.
Take care of yourself,I wish you a good future.Love Eve
Hi Kerry
Welcome to the site,14 years is a long time,so your mum is doing very well.
What little I know about Zometa is Slim having a tooth out,was not a problem just had to be 2 weeks clear of having Zometa,told only 1%| of people get osteonecrosis very rare,so nurse or computer your best bet.I do know as time goes by Zometa does not work as well.That is why 2 years is the average that people are on it.IF your mother has been on it for 14 years,it is a long time.Eve
Hi Helen
I was wondering were you were,good holiday shame about chest infection,i think there part and parcel of having a SCT,leaves your immune system so low,I think with winter coming on,I might just dose Slim with vitamins although he will moan about more tablets.
I enjoyed Venice when we went,but not to Slims taste hated the queues,went over by boat from one of the arms,surprised how many private beaches there are.
Next time will leave the philistine at home. lol. Eve
Hi Mary
Slim had Claxane injections for 8 months and Thalidimide was reduced by half,he remained on the Trials ,It is a complication of the Meds,and did result in damage to his lungs,but still had SCT.
Eve
Hi Andy
I know it,s taking a long time Andy,but it is getting there,you look back at that year and wonder how you managed to get through it.
I can remember thinking about are first year and saying to a friend it cannot get any worst and it b—-y did,laughing now but at the time it just was so awful,but got through it.the body can only take so much physically and mentally,everyone is stronger than they think.
I hope by the time you are posting 2 years on,you will be like Slim in remission,and a long one as well .Love Eve
Dear Mari
This is when you need this site,the ones who have been there understand what you are going through,I have been looking at Slim the past three months thinking it is not working taking to long to recover,the letter that we received a copy of read like someone ready for there coffin,all old complaints and new ones came to the surface because the system is so low.
Slim still weighs 62k I stopped cooking meals,such a wast of time,just kept snacks in.Six months they say before he starts eating as before,but I can see he is getting better slowly,
You have it harder because you are working,and you are worried about Stephen and your Dad,you did it last time and you will do it again,it is just going to take longer.
If you are at your lowest ebb there is only one way to go,and that,s up,Even the hospital realise this is a hard time on the family,Half Term soon,just except you cannot do everything,rest as much as you can. Eve
Hi David
Thank you,I have grand children out there,So it is a must,its never to late David.
How are things going with you???
Will not be long before you crocuses will be showing in the lawn,make sure you take a picture for us,what colour did you do in them. Eve
Hi Tom
Thanks for the info on Dai,new something was up.
Tom you are brave,its lovely to see grand kids,but they do tire you out,but were would we be with out them!!!.Your just braver than me.
You are doing so well,I can understand now how people feel about the 3 months,it is not until you walk out of the consultants room,that you suddenly realise how relaxed your body has become because of the good news.I went home and enjoyed a good bottle of white wine,poor Slim had a taste,and declared he is still off the wine.( more for me:-P )
Let us know how you get on Tom.Love Eve
Hi Pat
Nice to see your face,took me a while just to learn how to get a picture up,I agree with you,I am growing old disgracefully,we are lucky to have a good bunch of people on here,when my husband was going through a bad time,I could not have managed with out all the help and advice I received. Time has gone on from when I joined and faces have changed ,but the site is still helping many.
I think with Velcade it is having to go every week to hospital for blood and Velcade,the hours you put in there is the worst,the sooner all hospitals start using subcut the better.Slim had 2 injections a week strength 2.3 never changed but bloods had to be taken before for quantity that was given,except for being awake at all hours he never had many side effects.I think it was the combination not so much the Velcade that caused the side effects.
Hope you do not have to have too many cycles .Eve
Hi Jo
If your on face book please become my friend,and I will enjoy a game of scrabble with you,i play with Jean.I would love more contact in general and play a game of scrabble.it is interesting to know about people outside the bubble.You will find me under my full name.I feel I already know you anyway.
Mike if I had to choose it has to be the South Island,My daughter lives in Ruby |Bay,we hired a camper van and did most of NZ except the far South of the Island,that has to be a must,we are bird watchers in a small way,so the wild life is great.Spent 3 months out there last time.Love Eve
Hi Mike
Yes mike it is like someone has switched on a light bulb,and you can see a way forward.8-)
I think at the moment we will settle for this time we have, and try not to look to far back or ahead,as both are not a nice place to be,I see the Myeloma Trials helping generations ahead,in a cure,for people who are here now I only see it buying time,but it should not be dismissed as time is so important.
Were are you going in NZ,it is a beautiful place,last time I was there,I met up with my brother who I had not seen for a few years,we live about 380 miles from each other,but some how managed to be in the same city in NZ,have not seen him since and that was 3 years ago.Just never in the same place at the right time.Love Eve
Hi Tom and the family of Lappins
Will be lovely when it is 3 months appointments,already been told if we want to go away for any length of time,it can be arranged around Zomita.
It is a good feeling,just to know we are in this position,we will just be doing everything a bit slower as Slims body has taken a battering,and is still on pain killers,gut and bowel medication.but he is alive and I do not have to do a Bates job on him ( psycho ),for his pension lol,he now wants a divorce claims he married me under duress (ITU ).
Lovely pictures of the kids,your a brave man having the kids to stay,have you heard from Dai or Helen at all,I think they are having a holiday.
I do hope people who are going through a rough time get some comfort,that it can be done even when you have problems along the way,and you cannot see any light at the end of the tunnel. Love Eve
Hi Mavis Megan Joanne and Jean
Yes it is all good,I realised how I felt right through Slims treatment and how many people helped me through the many months with all Slims problems,We seemed to live in the hospital at one stage,and it is so nice to have this extra time to enjoy.
Jean I think Slim would be the same about going,I think they feel they have enough to cope with,they think it will be all doom and gloom,it has taken all this time to get Slim to occasionally read post,he is beginning to realise you can learn an awful lot,he tends to worry for days then mentions what is bothering him then I can tell him its either normal or we should mention it when we go in.Its called being a man.love Eve
Hi Tina
Well I have to say Slim never found the energy to get dressed until near the end,and lots of clothes just got thrown away,you will not expect them to be taken home.
Take things in that are around you at home,like your favourite mug,I would also take anything,that you like to drink in,as this is so important,as food and drink do not taste the same,taste buds go.
There is not usually a great deal of room,and if things are not in reach,you cannot find the strength to get them,let people bring thins in as you need them,you should be allowed out of your room for a few days,then will have a period were you cannot leave it,then as you pick up they will allow you out to walk in the corridors,so you will not be held a prisoner for long,and the exercise is good for you. Love Eve
Hi Joanne
Sorry you Dad is having a rough time of it,at least they found out what it was,and he is on his way to improving,just forget about the Velcade for a few weeks,just work on getting your dad in better shape and in the frame of mind to start Velcade,because that will be the last thing he wants to do.
Slim had pneumonia and was 21 days in hospital,unable to walk much ,he was exhausted,had to get a wheelchair,slowly got him walking again,mentally it is a bad place for your Dad to be,exhausted,treatment not worked,this is were you have to help him get on his feet,
This all went on with Slim,CDT not worked 80% Myeloma cells in bones pneumonia,then on to Velcade 6 cycles later,5% in bones SCT and now well on his way.STill skin and bones but every day gets a bit better,beginning to plan holidays,and getting back our life after 2 years.Eve
