Hi Charlie,
Glad to hear you're doing ok and back on treatment. Yes it certainly is more reassuring mum is in hospital whilst on her chemo, I can understand your wife keeping a very close eye on you, things change by the minute! Mum is doing ok, she's just getting through it, that's about the best way to describe it.
Best wishes for your PP results and decision about SCT, which I'm sure comes with yet more worries! I am very much looking forward to reading that fantastic phrase 'Remission' from yourself at the other side of this journey!
Emma. X
Thank you very much for the above post, very helpful and reassuring.
Emma. X
Hi Charlie,
How is 2013 so far? I see from your other post you're back on your drugs. What did you decide on? Mum is now starting her 4th cycle of CDT, she's still in hospital, having good days and bad, feeling pretty rough but half way through now. Like you we're hoping for a good result at the end of the treatment so we know the hard times have been worth it. I'm glad she's been in hospital for the majority of her treatment so far as she's been quite weary. She's now Neutropenic so she's in a side room to hopefully keep away from infections!
Do you get any info about your PE? We know mum
Has blood clots and they're just having to go naturally but we have no idea how they can tell if they've gone/going. Her blood pressure is still very low too.
I'm glad you're back on treatment and hopefully this time it will be less eventful.
Emma. X
Sal,
I'm so sorry to hear of your dad's passing. My thoughts are with you and your family at this time. The treatment is very tough on even the strongest of bodies. The fact your dad was able to have the choice of whether to continue his treatment is good and I'm glad you were satisfied with the care he received. It is very tough on those loved ones left behind.
Take care,
Love Emma. Xx
Email sent Sharon,
Thanks for thinking of me! Let me know if you don't get the email.
Emma.x
Hi Charlie,
Mum's doing ok thanks. The dr's and physio's are happy with her progress, a little too happy as they seem to be trying to get her out of hospital! She's in no way ready to go home yet, she still has low blood pressure, blood clots and a broken hip! So it might be that she gets moved to a community hospital for rehab in the meantime until she has her op. I hope they don't send her home as she's lost her confidence and would need someone there 24/7 which just isn't possible. Anyway she's on tinzaparin injections for the foreseeable future, these won't prevent blood clots but will stop them travelling to the lungs again.
Has your dr said anything about you having similar injections or warfarin to help stop/prevent another PE? I'm not sure how much thalidomide my mum is on she takes 2 tablets at night and 50mg seems to ring a bell. You have a few options to consider, it's tough knowing what was working was also having very serious side effects. I'm glad mum in in hospital where they can keep a close eye on her now I know how quickly the blood clots can develop and she had no idea until she collapsed.
Best wishes in whatever you decide I really hope you can get some peace of mind from your doctors as now they know you are vulnerable to PE they can keep a closer eye on you.
Emma. Xx
Hi Charlie,
How are things going with you? Have they decided what treatment you will
be having? I hope you were able to have a peaceful Xmas and new year.
Emma.x
Hi Sal,
Your dad's journey to diagnosis sounds very similar to my mum's. She was diagnosed in Oct 2012 after weeks of awful back pain and feeling low. She had a fractured vertebrae and poor kidney function. She stayed in hospital for 2 weeks until her kidneys improved and then had radiotherapy on her back. Her kidneys improved significantly after leaving hospital, she took to drinking 3 ltrs of water a day really well. She's now on CDT and unfortunately been back in hospital over Xmas due to a fall and breaking her hip!
Your dad really is in the best place getting looked after and I'm sure they're working on getting his kidneys back up to scratch. All of the coughs and colds flying around outside at the moment are not what he needs, we all had them over Xmas and mum was glad she was away from us! Lol. Best wishes to your dad and your mum, it's easy to say it but look after yourself too.
Emma. X
Oh Sharon I'm so sorry to hear about your dad, what an awful shock for you all. Life is just so cruel. I really hope you and your mum can find strength through the support of each other and your family and friends to help you through this. It sounds like you certainly need some time away from work at the moment, I went to see my GP when mum was 1st diagnosed and ended up having 7 weeks off as my head was just not with it and the thought of work just added to the stress.
I'm glad you parents have been staying with you so you have been able to spend time with your dad and look after him. I'm sure he was so happy to have his family with him.
I sent you an email wishing you and your mum the best for Thursday and just an update on my
Mum. I sent it to your message box on the profile page on here. If you click your photo/name it will take you to your profile and on the right hand side it says messages, click on that and it should be there. I put my email address in so you can keep in touch.
Again I'm so sorry for your loss.
Love Emma. Xx
Sharon,
I've sent you a message to your inbox on your profile page.
Emma.x
Hi Sharon,
How are things with you and your mum? I totally understand how you feel I'm up and down at the moment. Mum is constantly on my mind. Myself, my husband and the kids have just had a 4 day trip away and at times I forgot about mum being in hospital and having MM, but quickly snapped back to reality and felt guilty for having forgotten momentarily!
Mum is doing ok in hospital, we both know she's in the best place. We know it's a long road ahead and just hoping it has a happy ending. I don't tell my mam how I feel about things as I just want to keep her positive and get her better. I find though I'm racing around sorting out kids, work and life in general I'm not really talking to anyone. I keep checking on here as I think thats where I get the most comfort and information. With Xmas almost on us I'm thinking about that and the kids too and juggling hospital visits so mum isn't alone. It's truly a pants situation for my poor mum but we can't dwell on it, just got to get on with it and hope Xmas 2013 is a better more healthy one! I need to put a smile on my face and get on with things I think!
Best wishes to you and your mum. X
Hi Sharon,
Yes being an only child and a mother at that makes things so difficult as there are very few people to step in and ease the pressure and share the load. I want to be there for my
Mum as much as possible but kids and work make it difficult. What treatment is your mum going to have? My
Mum is on CDT. She's currently in hospital due to blood clots on her lungs from the chemo which resulted in her having a fall and breaking her hip! I keep saying to her, 'if it's not one thing it's your mother!'. She's still on the chemo and hopefully once that's out of the way she will get her hip fixed. I'm really hoping for good news after cycle 6 so we can forget about MM. At the moment it is in every thought!
Hope you have some support as I have also found this totally devastating. Myeloma uk has been great and the people on this forum are truly fab and can offer so much advice and support.
Love Emma. Xx
Hi Vicky,
Thanks for asking, mum is doing well. She had a couple of very low days after the 4 days of dex but she's ok at the moment. I've been a very good daughter and given her a foot spa today. It's the little things that I hope will keep her spirits up! Her tongue and throat are much better, seems the mouthwash is helping. Got a bit of a fright yesterday as she had a pain in the right side of her chest which came on all of a sudden. ECG showed no problems with her heart do either blood clots moving around or wind!! Myself and my husband are taking our boys away for a few days to winter wonderland at center parcs. Mum's going to have plenty of visitors and I'll be ringing her regularly to check up on her. A few problems with nurses not giving her the right chemo…. 3 times now. I'm not happy! Luckily mum is on the ball and keeps them right!
How are you and Colin doing? Xx
Wishing you and your family a lovely Christmas and healthy 2013. Will be keeping an eye on here to see how you're getting on. I hope you manage a red wine tipple over the holidays!
Emma. X
Hi Helen,
Mum wasn't too good yesterday, her tongue was better but her throat was very sore. She's using the mouthwash and says its helping. She is now on her 3rd day post dex so I'm hoping she has a bit more energy today, she just wanted to sleep yesterday but managed to get the energy to get up out of bed. I only stayed 30 mins yesterday as she was so exhausted. Me and my husband are taking the kids to center parcs on Mon, it's been booked since Jan. I'm nervous about leaving mum but arranged plenty of visitors and going to get her tv and hospital phone up and running so I can keep in touch. Just hoping she's ok while I'm away. I'll be back on Friday so not too long away.
Xx
