Thanks Helen I'll speak to them about thrush today. She's on the haematology ward so that's what was worrying me that they made mistakes but I'll not dwell on it I'll just make sure I keep an eye on it. Mum's haematology nurse is really good and she is visiting mum everyday. Unfortunately she was off sick yesterday but I made sure they contacted mum's Dr to let her know about the mistake with the meds and seek advice. Basically one nurse only gave mum 1 dex instead of 10 and another didn't give her any cyclophosphamide at all! This is the last week of the 1st cycle so I reassured mum by letting her know 1 down 5 to go!
Xx
Hi Charlie,
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 towards (mobility) she'll manage it. I'm just so glad she's not going to be stuck in bed. She's staying on the chemo and having tinzaparin injections. Her pain is being managed well so far.
She's become very assertive all of a sudden especially now she has to rely on others to help her. She's fiercely independent which I think will be a good thing as she'll be determined to crack on with physio. They got her up and into a chair today and she was happy she did that.
I hope Thursday goes well for you and not too uncomfortable. I hope you get some answers and they get you back on a chemo regime that doesn't cause you anymore hassle/worries. Here's to a peaceful Xmas for you and your family. Myeloma is not invited!
Emma. Xx
Hi all,
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, zimmer or possibly crutches. This was a positive thing to hear and gives mum something to focus on over the course of the 4 months, physio and getting herself up and getting some mobility and independence back. It's the simple things you take for granted like nipping to the loo and getting a wash/shower etc in the privacy of a bathroom.
There was the option of an operation now if mum wanted it, however this came with significant risks at this stage. On hearing the surgeons views that mum should be able to mobilise (with her pain being controlled) and that waiting 4 months will not be an issue in respect of the operation, mum agreed she felt more comfortable knowing the blood clots would be sorted 1st and she will hopefully be in a better position for surgery then. Of course this will all be reviewed in 4 months and things may change, but at the moment that's where we are at and we can only take one day at a time.
Bad time of year for this to happen, but when would there ever be a good time for something like this? At least mum's Dr told us the chemo is causing the blood clots (something I already knew but was struggling to get the Dr's to accept). We know at least for now she is in the right place, she is being monitored, her pain is under control and she is staying on the chemo to tackle this bloody awful MM. The Dr's get to travel to her rather than her having to go to appointments and sit in waiting rooms and outside pharmacies for lengthy periods! Hopefully she will see good results from that and it will spur her on and keep her strong.
Thank you for all your advice and support over the last few days, it certainly has helped me vent my worries.
Emma.xx
Thank you Jean, Jo and Tom,
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
Thank you Tom and Helen.
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 haematologist. Not sure about more radiotherapy, all questions to be asked I expect, I'm petrified at the moment and dreading the meeting tomorrow. They have ordered the part for mum's hip so I suppose they must think its possible. Mum says she feels like a car being told a part has been ordered.
Every time I think about the possibility of her not being here I just get so upset and then I think about the alternative of her being here but with no quality of life i get upset too. It's a rock and a hard place but so hard to deal with at the moment. How on earth can you go to theatre with the thought you might not come back to your family. So distressing to think this will be on mums mind.
Xx
I must say reading David's post has made me laugh for the 1st time in days! Thank you. You know what that is exactly the type of thing my mum would say. I'm so glad to hear your op was a success and you can wipe your own bum!! 😀 xx
Vicki, both you and Colin have been through such an emotional and physical rollercoaster I'm grateful you have the energy to contribute advice. I really hope Colin is improving and doing well after his SCT. You must be worn out with worry.
Everytime my husband asks me how I am or what I'm thinking I either burst into tears or shrug my shoulders. This site really is a godsend. I feel bad though as my mum doesn't have access to the internet, I do tell her about the site though and the comments from people.
Emma.xx
Thank you Mavis,
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 regarding the operation and am expecting them to paint a very bleak picture as you had on your fourth operation. I know mum will want the operation if it gives her the opportunity for a decent quality of life and she will be willing to take the risks as you did. We are taking it one day at a time but I am scared that they will ask her to decide on Monday and then go straight to operation on Tuesday.
Mum is already frustrated as she cannot get up, move about and do things for herself however this is making her so much more assertive which is not a bad thing!
I have told her she is of sound mind and knows exactly what she wants and needs, I will not make decisions for her and do not want the Dr's to ask me what I think she should do. I am there to support her in whatever decision she makes. I'm trying my best to stay positive and keep her positive but it's a struggle when we understand so little about what is happening at the moment.
I hope you are well Mavis and thank you for taking time to reply.
Emma.xx
Hi Charlie,
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 blood clot in her lungs. They are linking it to the Thalidomide. All sorts happening at the moment with mum in hospital, not sure how long she will be in or what the plan of action will be regarding the CDT, I'm hoping with blood thinners she can stay on it, she was doing so well until she felt dizzy and collapsed yesterday. Having read what's been happening with yourself it seems quite similar to mum.
I hope they make decisions about your future treatment soon and you get back on the fast track to remission without any more bumps!
Emma.x
Hi Ali,
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. She's still getting pain in her back so they've changed her pain medication which I'm hoping will help. She's on day 1 of the 21 day cycle so should not start cycle 2 until boxing day. I just hope she feels well enough to enjoy Xmas day with us and her grandsons. She's been up and down since getting out of hospital and as the boys have had cold, she has only seen them once in a month 🙁
Best wishes to your mum, what fantastic words….'complete remission'.
Love Emma.x
Thanks Jet,
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 the consultant and GP as that has informed us mum's kidneys have improved significantly and were in a very bad way when she was admitted to hospital. I think we caught her Dr on an off day last time as this info was not shared with us and we were left feeling a bit bewildered after that appointment, having been told there were still uncertainties about what chemo mum could have due to kidney issues. The letter states due to improvement in her kidney function she is eligible for CDT and looking to start tomorrow 27th.
Mum's nurse is great thankfully.
Emma. X
Thank you Eve,
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 of infections.
I'm keeping an eye on where and when the info days are as I certainly think it would be beneficial for us to go. We're up in Northumberland and I think we just missed one in Sept, prior to us having any knowledge of MM.
Thank you again for your advice,
Emma. X
Vicky and Colin,
Best wishes to you both. Hoping all goes well, will be keeping an eye on your updates.
Emma. X
Thanks Vicki and Colin, good luck for next week and the following weeks for Colin's SCT. Hope all goes well, will keep an eye on your updates.
Emma. X
Hi everyone,
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 about on the forums. I'm not used to seeing mum anything other than strong and independent, so seeing her emotional will be difficult. I have informed her it will be the meds making her like that so not to worry she's not going soft!
Peter and Tom – mum has never been overly impressed with the set of teeth she was born with and thinks if anything she may get herself a new set of pearly whites out of this!x
I'm so glad to hear everyone is not letting MM get the better of them and their sense of humour. Ali – great to hear your mum is doing so well. SCT is something I know very little about at the moment, the DR mentioned it to mum but said she thought it was all a bit too much to take in just yet. I think our parents cope with this diagnosis better than us children, because at the end of the day, even though I'm 34, married with 2 young children I still don't feel old enough to deal with this sort of thing and think mum is too young too. It saddens me to see that this disease effects people of all ages as I have discovered on this forum.x
Nicola – Good to hear the treatment is obviously working for your dad, proving all the horrible bits are worth it when you see results like that.x
Mavis – It's great your PP are nil and bloods nearly normal. I totally understand how Kate feels, especially now being a mother myself your whole outlook on life changes and we all worry about our kids, as I'm sure you worry about Kate. You stay strong and continue to defeat this thing, your grandsons will have you around for a long time to come! When talking with the DR about the damage to mum's kidney's from Naproxen we were told that, diclofenac and ibuprofen were all no no's for her. Keeping everything crossed for the radiotherapy.x
I'm not able to get into hospital to visit mum today, there's a sickness bug on the ward and guess who's got it….yep that's right ME not her!! It is a worry though, as we have been told her kidneys are picking up but still need more fluid I don't want her to get ill with this bug.
Best wishes to you all, stay strong and healthy,
Emma.xxx P.s Tom – Mum is Cathy.x
Thanks Joanne,
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 which in turn I can pass on to mum.
Hope your dad is doing well.
Emma x
