This topic contains 17 replies, has 9 voices, and was last updated by 
tom 11 years, 11 months ago.
I'm really worried and scared about things that are going on with my mum (64 years) at the moment. She only started CDT on 28th Nov and we've had a big setback already. She lives alone although just across the road from me so I pop in often and keep in touch via phone. I just returned to work on Thurs after 7 weeks off since mum's diagnosis. Unfortunately mum had a fall in the house on Thurs and luckily managed to dial 999. She's broken her hip. The same hip she had replaced in April 2011 but in a different place. Her blood pressure is very low and low oxygen levels. She had been feeling relatively well before the collapse. Tests and scans have revealed blood clots in her lungs and myeloma in her broken hip. They're now trying to treat the blood clots but have said they need to discuss the risks involved in surgery. It certainly sounds like these are significant risks and I'm just devastated. They want to speak to us both on Monday.
Mum has said she cannot be wheelchair or bed ridden, she wants a quality of life which I totally understand. She said she is not going to throw in the towel as she'd always said she would give cancer the best fight possible especially as she wants to see her grandsons grow up.
I just feel so upset that we're stuck between a rock and a hard place. She's still on CDT and lots of pain relief. Initially they said the clots were as a result of thalidomide but now they're abit reluctant to say that. So worried and confused, I just wish she hadnt broken her hip as they may have been able to deal with the clots and get her home.
Emma. Xx
Hi Emma
Sorry your Mum is having such a grim time. I can understand where she is coming from about quality of life.
One thing, as they have already identified blood clots they will be extra careful in any procedures. I have had four hip ops – at least they can do them by epiduaral. I had such dire warnings before my forth operation (I was very over weight and had blood pressure issues,) that I altered my will and transferred money to my husband. However, I still wanted to go ahead just because of those quality of life issues. I would rather have died than carried on as I was. Fortunately I survived and that was eight years ago. Little did I know I had MM waiting in the wings, but such is life!!!!
We all have to make our own decisions and take our own risks, BUT these decisions are VERY difficult so I feel for your Mum and all the family.
Lots of love.
Mavis x
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
I can only offer my support Emma.
3 years ago I faced the possibly of becoming a Quadriplegic. When the surgeon came in to discuss the operation I said to him, ?if it all goes tits up don?t bring me around, I am not having my wife wipe my bum?. He just said, ?fair enough? and walked out. The next time I saw him was sitting on the end of my bed just after the operation with a big smile, and he said ?she won?t have to wipe your bum!? You have to take these gambles in life.
I wish your Mum all the very best she sound a real fighter which is what she will need to be.
Kindest regards ? vasbyte
David
Hi Emma,
Really sorry to hear about your mums current situation. I won't say keep,calm or try not to worry because I'd be the same. Although not sure what the issues are, I know that the medical teams always give you the worse case scenarios and will never say 100percent that everything will be ok because they did not do that when I was so worried about Colin.
I know won't be much help to you, but as your mums says, quality of life is so important, especially for someone who has been used to doing things all for herself.
Best of luck and we really hope things work out for you both 🙂
Vicki and Colin x
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
Hi Emma and Mum
Am so sorry your Mum has had a fall and I hope its soon sorted.
Your Mum is a fighter as I recall when she found out about the MM she said "Onwards and Upwards" and that Emma speaks volumes about your Mum's strenth.
I do hope the consultant ask's your Mum what she wants and just lets you sit and listen because it is your Mum that is going through the treatment and still has her own mind 😀
Emma please tell your Husband how you feel when he asks as am sure he wants to know and help, it might be hard for you to tell him but am sure you both will feel better.
Love and Hugs for you BOTH and Good Luck on Monday
Love Tom "Onwards and Upwards" xxxxx
Dear Emma
This really is tough for you all and I hope your mum is able to make the right decision for her, whenever and what ever they decide. I' d get prepared for Monday, pen and paper and every question you can think of written down in advance. You need to know what risks there are involved in each option, no surgery yet might mean higher risk of more blood clots for example, high mm levels in the bone might mean difficult or impossible surgery. I presume your mum is on an orthopaedic ward? Does her haematologist know she is in? Will she need radiotherapy to her hip? And has there been a multidisciplinary meeting about her options? I know these all sound very worrying and I don't want to frighten you but the situation is very complex, I used to work as an orthopaedic ward sister and I'd be wanting as much information as possible. You may not want so much but do have an advance plan that you and your mum can use on Monday.
Love Helen
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
Hi Emma
Like Vicki I cannot say anything that will be of help to you. But I know what you are going through and I hope you get some comfort that there are many thinking about your mum. And wishing her well. Good luck for tomorrow
Take care of yourself
Love Jean x
Hello Vicki
I am sorry i cannot be me help but my thoughts are with you never give up stay strong
Regards Jo x
Hey Emma am sending ciber hugs for you and your Mum I hope they will give you some comfort during this difficult time, I hope Monday works out good for you both and will sit and say "Gosh why did I worry about that"
so big big ((((((Cyber Hugs))))) for you both
Love Tom "Onwards and Upwards" ((((HUGS)))) xxxx
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
Dear Emma
It is an anxious time, and yes you do have some of these procedures done, not knowing what the outcome will be. However the risks of not doing anything can sometimes be worse than the treatment. The important thing is to be sure that the choice your mum makes is one that she is comfortable with. I really hope tomorrow goes ok, keep in touch.
Love Helen
Oh my gosh Emma
I have just been catching up with things on here and came accross your post. Im so sorry you to read your Mum is in hospital. What a worry. No advice to offer im afraid, I just hope you have gone on ok today with the the consultants.
Im sending a really big hug to both you and your Mum.
Ali xx
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