Hiya Vicki,
Yes you are just behind us!!
My thoughts with you, I don't like to comment on what you could expect, as it's such an individual disease and everyone is so different.
Sometimes I've read things on here (won't look at any other website !) and it's not happened to my Mum. So be prepared but stay positive, your Dad, will have the best care.
It's definitely hard being one of the carers, I had to keep my Dad upbeat and busy and he struggled with it. I struggled seeing Mum poorly but I kept thinking of the outcome and seeing her better!!!
The Melphalan and the stem cells being fed back, this bit wasn't too bad, Mum just felt bit sickly, and sucked on the lollies, which helped her mouth, but week later the throat became really sore and she gagged with drinks, but we've been told, it will go in time. Think she's got ulcers in her throat.
It was about day 6 after cells were fed back, she began to feel sleepy and boy did she sleep!!!
The sickness and the diarrhea, I suppose depends on the individual but Mum had problem with both again from about day 6!! But please ask for help if your Dad needs anything, because I found out, it's better to get the sickness under control, than trying to be coping with it!! Also the diaorrhea, they kept checking Mum for signs of any infection and as long as she hadn't got one they gave Immodium and it eventually kicked in!!
Any advice I can give is to look after yourself and your Mum and if your Dad is really sleepy, leave him to sleep and do shorter visits if that suits..
Don't be afraid to ask the staff if you are worried or concerned, because to them it's all normal and to be expected, they seem busy and at times I was desperate to get re assurance and once they gave it, I felt a little better.
I hope all goes well and I'm thinking of you and sending you lots of love
Only me
Xxxx
Thank you to you all and your kind replies.
mums count started to rise on Monday.0.2 then yesterday 0.3 what a difference….
I am very grateful for all your replies. This forum, has helped me and my family so much. I know some things I didn't want to read, but rather read and be prepared, than be 'in the dark' and wonder whether all is well!!!
She was supposed to be discharged today, but her potassium levels dropped, altho she felt ok, they weren't right, so she is staying in at Notts for another night, but rather everything was ok than otherwise. The team at Notts have been fantastic and I hope the story is the same with everyone else.
I can't thank the staff enough for their care and expertise.
I've met some wonderful people, and we've all been there for each other at different times.
Can I also say how much I can recommend the new Maggies centre at the City hospital, Notts. A wonderful place, that has just opened. It's aimed at helping Cancer patients, whilst having treatment or their carers who maybe lost for somewhere to go. It has quiet rooms, if you so want some time on your on, or a big hearty kitchen, that has the kettle permanently on!!!
There is always somewhere there to talk to and it can be peaceful or you can have chat with one of the staff.
It looks like a big green apple!!
I found it, whilst having a walk out whilst Mum was on one of her sleeping stints!!! It did me good and it was good to have a non clinical environment, to go and sit in!! It's only open Mon Fri 9-5 but please go and have look, I found Kate, wonderful!!!
Let's hope Mum is out tomorrow.
Thank you for all your help and support, and my love to everyone of you.
Stay strong and positive
Only me xxxxxx
🙂
Hi am sorry to hear of your journey.. It may or may not be the same as what we have just been through with my mum.
If you look at one of my earlier posts it explains what happened.. My mum suffered a huge seizure (hyponatremic seizure) and was in intensive care for 4 days. The first day she was unconscious and on ventilator. It was the most distressing thing to experience. it took the ICU dept a long time to correct the sodium levels , we were all stunned.
However after what seemed an eternity ..7days after …my Mum came back to being herself, with no lasting adverse affects. Which relieved the whole family..this was only two wks ago and we are still coming to terms with this event.
If I can help you I will do, I was at my wits end throughout, but seeing my Mum now, you would never know it had happened..
Please stay positive , I know it's hard.
If you want to talk or e mail I would love to send you positive vibes
Xxxx
Only me xxx
🙂
Hiya… been wondering how you and your Dad are getting on…. We are at the same point I believe… My mum started at the same time… Mum has had nearly all the same side effects and is battling on and we are all so proud of her… Few little flutters with her atrial flutter but we are hoping that it is being looked at by cardio spec.. Fingers crossed .. last readin of pp was 26 to 14 so we well on the way..
We are all still taking day by day and hoping for the same outcome at the end…
Hope you are coping ok too..Its always giong to be a worry for those looking after their nearest and dearest, I am little bit nervous of the next stage if we get the go ahead.. but am sure with this site we will all battle through regardless!!
My mum doesnt want to know too much, so thats prob a good thing.??
Anyway stop babbling and I am sending my love to you
Only Me
xx
Hi been wondering how your Dad is getting on .. As started on our journey together !! My mum is doing really well pp is down to 14 … Awaiting next 3 wkd to see how we get on .. Over halfway on 6 courses if CTD …we've had few episodes where mum has had bad days but on whole time is flying by! X how is your dad coping ? And just as important how are you ?
Lots of love
Only me !!
Xx
Hi H…
Sorry to to hear you joining us but a welcome from all of us…. I am the daughter of a Myeloma sufferer…..
I cant offer you any advice as I am still learning about different things but pleased to say how positive you sound after hearing such news…
Stay positive and stay smiling
Regards
Only Me
x
Hi how are you and hows your Dad doing???
Just a little note to see how things are going at your end??
mum is doing ok finding some days harder than others..
Been thinking about how you got in in the end?
Regards
only Me!!
x
Hi what a lovely re assuring tale and I admire you, for what you have both been through and now having the strength to look back and re assure everyone else it can be such lovely outcome…
I am going to read this over and over again, when my mum finally goes in for the SCT… it will give me such boost…
Well done to both of you for getting to this stage.. and also well done to all the team that has nursed Sam through the difficult stages..
They all must work so hard..
Kind regards
Enjoy your anniversary
Only me!!
x
Hi Clara,
If I can pass on what I learnt, whether it will help you at all, I dont know, and I suppose each case with MM is different so am not sure if your Dad will be the same..
But My mum is 67 and like your Dad, is quite a young 67!! So when I went with Mum and Dad for the appt, I was expecting three boxes …consisting of the CTD!!.. What we were told in that first meeting was quite a lot to take in!! … Not only was there the CTD, but there were tablets for protecting the stomach, tablets for protecting the kidneys and tablets for protecting the lungs, also tablets to protect from gout, anti sickness tablets, asprin, and the Zomeeta injections, that were going to be arranged monthly that strengthen the bones during treatment… They explained that the chemo drug is obviously highly toxic and is to be handled with gloves, kept safe etc etc… Also diet was explained and we got a booklet on Neutropenia.. what to eat and what to avoid!!
They went through the next 21 days and explained that the blood tests need to be done at day 14,(they give you the blood test form then, that you take with you on day 14!) so that the results are in for the 21 day check up.. Then all being well on your appt on day 21, the next prescription for the next 21 days is given and that gets started the next day… and so on …and so on!
We werent told that there was a chart coming with the treatment.. and when we came out we asked the nurse to re cap it all with us!!Then the pharmicist arrived and went through it all with Mum and showed her the charts and weekly grid that shows you what to take each day!!! I had the idea of the pill organiser, but the pharmicist, said some of the drugs are so toxic, and you need to handle them with gloves they are best staying in original boxes until needed!!????
Anyway, looking back I am glad I went.. I work and like you it isnt going to be feesible, for me to go with Mum and Dad to many appts, but at least I was at the initial one and although it sounded daunting, please let me re assure you that after couple of days it does all make sense!!!!
I feel a lot more relaxed now knowing what the course entails and how after three days of it Mum is a lot chirpier and happier… I want to send that positive note to you that, once started it will all fit into place…
I hope that this helps you in making a decision, and your Dad gets underway very soon…
Good Luck
Only Me x
🙂
Hi,
Thats good news that you back on track too and feeling good again after little dip!!
You make sure you look after yourself and get lots of rest.. I am sure the time will come for you to be wonder woman again!!!!.. We all like to think we can keep going and are ok when deep down our bodies know differently!!
Take care and keep in touch!
Only Me x
Hi.. thank you for your comments.. yes the booklet is beginning to make sense.. and the tick chart is making the medication easier to administer…
I am wanting my mum to make a diary… only 'few words' on each day so she can see how she responds to the tablets.. and can see if pattern emerges!! but its probably too early days yet…
I think I was in shock when the "medication" was handed to my mum (and dad!!) it seemed so daunting A) to see how big the bag was and B)to take in what was required to be taken and when!! but it is making more sense now and and I think its all fitting into place..
Mum had minor set back with treatment on first day as she felt wobbly as the day progressed but after a couple days in hospital her potassium has been assessed and Mum has received a few welcome bags of saline and is now looking lot better and is laughing and joking and wanting to come home!!
(I, meanwhile, received a few welcome bags of G & T on my return home!!)
Dad meanwhile is re charging batteries and is ready for her to come home tomorrow!
So on a big positive note… all is looking like we are on the right track!
Phew!!!
Love and best wishes to you all and will be back on here am sure next week…
Only Me !!
x
Hi all thank you for your kind wishes…
Well a little setback…Mum felt bit unwell after day one but we are back to normal and doing really well.. Mum is in hospital with low potassium levels, but is going to be coming out tomorrow and is feeling lot chirpier!!! All been rectified and after a few bags of saline, we back on course and things are looking alot better….
Dad is coping admirably and is re charging batteries.. Am so proud of them both… Hope that you are all doing well and I am now going to progress to the Treatment pages for new updates..
Lots of best wishes to you all
Once again thank you for your kind comments….
Only me!!!
x
Hi Hope that you are ok..
Have been thinking of you today as we seem to be both at the same point …. you with your dad and me with my mum !
Sending you best wishes to you and your family… Lots of love to your dad and hope the chest gets better very very soon..
We have just started the CDT today, athough boy is it minefield.. but am positive in a week or two all will become clearer!!
Keep in touch and will follow your story too
regards
Only Me!!
x
Hi Clara … Can't answer any of your questions … But what can do is send you lots of love as you battle your way through things … I am new too so can identify with all the initial queries … Good luck tomoro my mum starts cdt tomoro too xx take care hope u get answers u need xx
Hi just wanted to send my best thoughts back to you too…
It is daunting and frightening, and this site is very re assuring as we can find things out if we choose too… I am hoping you are geting the info you need..
Regards
Angie
x
