What a faff on getting into this new site! Please forgive me I’ve been off this site for a while as my mum has been doing well and we’ve tried to put MM to bed for a while so we could enjoy the Xmas period considering last year was pretty pants. Now catching up and discover you will be going back on treatment. I always think about you so…[Read more]

Mum is mobilising really well. She's using 1 walking stick and has had her shoes build up so she's even after losing 2 inches in height. She certainly seems better in herself now and I think it's just a relief for her not to be talking all of those tablets. I'm glad the weather is picking up now, she came home on a lovely…[Read more]

Mum came out of hospital 3 weeks ago and came back home. She's doing really well. It's taking time for her to settle and build her confidence again after 4 months in hospital. She had her appointment with consultant this week and we received the good news that CDT has done the trick and now she's on 3 monthly checks. We are all very…[Read more]

I've not been on here for a while and am just catching up now. Sorry to hear relapse has been confirmed, however it ends the limbo period of uncertainty. I'm glad you feel generally well and hope they can get on top of your pain ASAP. I look forward to reading that Velcade does the trick for you and hammers the nasties back into…[Read more]

Congratulations, such nice news to read before I close my eyes for bed. My mum finishes her 6th cycle of CDT on 5th April and am keeping everything crossed for positive results!

Love Emma.x

So sorry your mum has been diagnosed with mm and acute kidney failure, however you really have come to the right place for advice and support. It is my mum who was diagnosed with mm in oct 2012, it is such a massive shock and one which is difficult to come to terms with especially when doing Internet research and reading some very…[Read more]

We initially asked for a referral to the dietician at the hospital to monitor mum's weight and things. Since then they've been great. Mum has ensure supplement drinks and although its not a replacement for food really helps On the days when she has struggled to get food and fluids into her. On her steroid days she tries her best to eat…[Read more]

Yes mum is still in hospital, 4 weeks of CDT left. She initially lost 2 stone but has put a stone back on. She's had anti biotics regularly for suspected chest infection and urine infections but she's been ok. They're not going to operate on her hip so she's doing physio to get better mobility.

So glad your mum is coping well…[Read more]

It's tough news to come to terms with, it is my mum who is 64 who was diagnosed with MM in October 2012. If I can give you one piece of advice that certainly seems to be a common theme on this forum….Positive mental attitude. My mum has remained positive throughout her CDT, she is now on cycle 5 of 6 and is doing really well. Just…[Read more]

Love Emma. Xx

Love Emma. Xx

I'm just looking back at your old posts regarding your journey on CDT as mum is now on her 4th…[Read more]

Thank you for your response, what I meant was mum does not want an overnight carer. As far as I am aware mum would need to pay for an overnight carer if she felt one was required, but my mum is a very proud and independent lady and does not want a stranger in her home. Unfortunately I would not be able to stay overnight with her due to…[Read more]

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…[Read more]

Emma. X

Mum is now on cycle 4 of CDT, she has been in hospital since the beginning of December due to having a fall at home and breaking her hip, it was then discovered she had blood clots on her lungs. We were informed the blood clots would need to disperse naturally which would take at least 4 months. As a result, the decision was made that a…[Read more]

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…[Read more]

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…[Read more]

Thanks for thinking of me! Let me know if you don't get the email.

Emma.x

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…[Read more]

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

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…[Read more]

I've sent you a message to your inbox on your profile page.

Emma.x

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…[Read more]

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…[Read more]

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…[Read more]

Emma. X

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…[Read more]

what a time mum's having but she'll get through it. They've decided she needs to wait at least 4 months for the blood clots to go before any surgery. The surgeon is happy with that and says mum can get up and try to
Mobilise in the meantime. She'll be in hospital for that length of time but as long as she has something to work…[Read more]

We met with mum's Dr and the orthopedic surgeon. Basically the decision is that mum will remain in hospital for at least 4 months to get rid of the blood clots before any operation. She will remain on chemo during that time and will be monitored closely. The surgeon has said she can get up and mobilise using either a wheelchair,…[Read more]

Will hear what has to be said tomorrow and take things from there. One step at a time, no point in me trying to predict what will be said. Mam was in good spirits tonight as she's settled on a ward now. Will keep you all updated.

Thanks again for your support.

Emma. Xx

Helen, mum is still in medical admissions and we were told yesterday she was going to the haematology ward, (same ward she was on when diagnosed). The 1st call Made when she was taken in on thurs was to her nurse to inform mums haematologist that she was in. The meeting on mon is with the orthopedic consultant and…[Read more]

Vicki, both you and Colin have been through such an emotional and physical rollercoaster I'm grateful you…[Read more]

I visited mum this afternoon and tried my best not to get upset infront of her. We will wait to hear what the Dr's have to say on Monday, I am just hoping they are willing to deal with her blood clots and blood pressure issues and delay the operation until she is more stable. I know they have to tell us all of the risks…[Read more]

It appears Thalidomide has not agreed with my mum either. Just over 1 week into her 1st cycle and she collapsed at home yesterday. Unfortunately she broke her hip in the fall. At hospital her blood pressure has been very low and low oxygen levels in blood, she has pain in her chest and they are now treating her for a suspected…[Read more]

Thats's great news for your mum and for all of you! I'm so glad your mum is doing so well after her SCT, it is really encouraging to hear there are great highs to come from such lows. My mum has just started CDT today after her diagnosis in October. Her kidneys have significantly improved therefore she has been allowed thalidomide.…[Read more]

We saw the consultant last week who was surprised mum's dosage of dex had not been reduced by the Dr we saw for the radiotherapy, therefore were told mum's body was addicted to dex and she needed to be weaned off it over 2 weeks. That's all done now and she's handled it really well. Luckily we asked for copies of the letters between…[Read more]

I have been looking at the big pill boxes and suggested getting one to my
Mum, so I'm glad you've recommended getting one. I'm also looking at getting mum a thermometer, having read so much advice in this forum I think it might even been a comment from yourself about an ear thermometer to keep an eye on temperatures for signs…[Read more]

Best wishes to you both. Hoping all goes well, will be keeping an eye on your updates.

Emma. X

Emma. X

Thanks again to you all for sharing your experiences with MM with me. It seemed such a lonely place on Tuesday having heard the word 'Myeloma' for the first time. Your honesty is much appreciated, we know this won't be a walk in the park, but as Tom says it's 'Doable'. I've already prepared my mum for the 'Dexattitude' I have…[Read more]

I've been reading the forum every night for a week looking for answers to my questions. I felt it was right to join so I can talk to others in the know. Even before I wrote anything I felt like the forum had helped me understand what was going on a bit more and what we are likely to face in the future. It has given me hope…[Read more]

Rachel, thanks for…[Read more]