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Help or Advice needed

28 REPLIES 28
rosie53
Member

Re: Help or Advice needed

So sorry to hear your mum has lost her battle to this nasty disease Lesley.
Sending you my love.
Hugs Janette xx
stresshead
Member

Re: Help or Advice needed

lesley, so sorry to hear about your mum. Cant really say any more than the others have said. vsincere condolences to you and your family.x

Daisy1975
Member

Re: Help or Advice needed

Sorry to hear about your mum Lesley. I lost my mum to breast cancer almost 4 weeks ago and it's still hard to believe if. Feels like yesterday.
Xx
Salzie
Member

Re: Help or Advice needed

Sad to hear this, love and hugs to you all💞💕
Marirose
Member

Re: Help or Advice needed

So sorry to hear you lost your Mum at least you made her last days more comfortable for her it would have meant alot to her. I lost my cancer buddy through the same thing we buried her yesterday. My heart goes out to you your farther and family and friends I feel so emotional for the family because I know one day I will put mine through this through that awful awful B*****Y disease

 

May your memories give you comfort in the days ahead and remember your mum has gained her wings Lesley may she fly high with no more pain

Love and (((((hugs)))))  xxx

nicky08
Community Champion

Re: Help or Advice needed

So sorry to hear that your Mum has passed away but it would have been a great comfort for her to know you were there with her - as I'm sure it will be for you and the rest of the family.  Look after yourself and come back on here at any time - you know you're in safe hands.

Nicky x

scratch
Member

Re: Help or Advice needed

Lesley thinking of you and your dad.sharon❤
Carolyn52
Member

Re: Help or Advice needed

Hello Lesley
Sorry to hear about your mum ..its such a cruel disease and it robbed me of my mum too at age 52 ...
Take time to grieve and remember the happy times ..
Sending you hugs xxxxx
helen44
Member

Re: Help or Advice needed

Sending you big hugs Lesley, really so sorry to hear about your mum. Thinking of you and your family xxxx
Dinkybaby1
Member

Re: Help or Advice needed

Hi all
My brave mum lost the battle last night but was surrounded by those she loved!
I just wana thank yous all on here for the invaluable advice and help I received during the battle with this wicked disease! Let's never give up on finding better and better treatments and one day THE cure!
Love to you all
Lesley
Moijan
Member

Re: Help or Advice needed

Good to hear that mum is comfortable at home. I am sure you are a great comfort to her. Yes, normality is a great thing

 

huggy thoughts

 

Moijanx

Dinkybaby1
Member

Re: Help or Advice needed

Thank you all so so much! The support here is fab and it's lovely to know that others care and think of each other even tho we've never met!

Mum is comfortable at home for now and we are just trying to be as normal as possible ! Thankfully there's no pain or nasty symptoms so I hope this continues!
Thanks again yas all!
stresshead
Member

Re: Help or Advice needed

Dinkybaby, so sorry to hear your news. As i said before we went through it with my mum. I was the first to be told and then my dad but he didnt want mum to know (she was also deaf and had the start of dementia, but i think dep down she knew) which was hard as we couldnt ask macmillan or anyone to help. She did have nursing care towards the end though which was a big help so please dont be afraid to ask for any help and support you need. Just be with her..it will be enough for her to know you're there...and remember, we are all here for you. Massive hugs to you both. xx

Moijan
Member

Re: Help or Advice needed

Hi Dinkybaby, thinking of you both...sorry mums condition is worse, give her a hug from me

 

We are all here for you, keep us posted.

love,

 

Moijanxx

Dinkybaby1
Member

Re: Help or Advice needed

Thank u so much Nicky!
Mums not in pain, thank goodness and is just her normal self too! I'm probably the one with more issues at the min, so so angry at this dreadful killer disease! But I will never give up battling for cures and treatments! I'm gona keep on with charity things me and mum support!
nicky08
Community Champion

Re: Help or Advice needed

Sending you and your Mum some gentle hugs. Very sorry to hear her condition is deteriorating at a far quicker rate that you had thought. Hoping that she is as comfortable as she can be and to say that you are being such a huge support for her. Take care

Nicky x

Dinkybaby1
Member

Re: Help or Advice needed

Thank u funnyface !
Luv to u too
funnyface
Community Champion

Re: Help or Advice needed

Dinkybaby1, I'm sorry your mum has progressed so quickly. My mom had mets to the liver from small cell lung cancer. She was doing great one week then the very next week her liver wasn't functioning. I couldn't believe how fast things changed. Hugs to both of you! FF

Dinkybaby1
Member

Re: Help or Advice needed

Hi everyone
Wanted to keep yous all up to date as you have been so supportive and helpful! Unfortunately mums prognosis isn't good. Onc has confirmed that for watever reason the liver functions are quickly deteriorating and that with the high calcium mum won't live much longer. Now she didn't want to nailed down with a time frame but we could tell by her face that things were a lot worse than what they were saying.
I can't believe that this has happened soooo out of the blue it seems. I just thought it would happen more slowly and steadily!
Thank you all for listening and we can never give up fighting and battling this hateful killer of a disease!
Lucy21
Member

Re: Help or Advice needed

Dinky baby1

I don't post very often , but read most days . As others have said are you able to get to either the Royal Marsden / The Christie ? I went for a second opinion there two years ago then transferred my care there .

I know of people that do come from Ireland so it maybe an option if you are able to .

I'm sure there are more treatment options available to your mum .
Good luck x
stresshead
Member

Re: Help or Advice needed

Dinkybaby, so sorry to hear your news. My mum was diagnosed with primary two weeks after me and she had a mastectomy and radiotherapy but refused chemo (or as my dad says was advised not to have it due to her other medical problems and her age ..79????). I was diagnosed with SBC in 2014 but mums checkups were always clear, although ahe was getting very frail, losing lots of weight etc. They eventally called her in for some tests as she had chest/breathing problems but i'm not sure wat they did. We werecalled in the next day and told that her cancer had spread to her lungsand iver and there was nothing they could do. She died about 6 weeks later, this time last year, so she actally lived for 4 years without any form of treatment. As you can gather from that i totally understand how you feel to get such news. I would agree with the others and seek a second opinion. There are usually more treatment options than she seems to have been given but obviosly we dont know her background/history. All i can say is my thoughts are with you both . Please keep posting...we are all here for you.x

Dinkybaby1
Member

Re: Help or Advice needed

Thank you all for your advice and hugs!
Mum is getting to see her own Onc hopefully today! She's at the hospital to get fluids as her calcium levels were high yesterday. She's feeling well enough in herself today so I'll keep yous all posted! Thanks again I really appreciate you all and it's so lovely to not feel like the loneliest person in the world! Xo
Moijan
Member

Re: Help or Advice needed

Hi dinkybsby, 

i abdolutely agree with stillhere. You can, by the way try,  for a second opinion and that opinion possibly at the christie  or the marsden might help the doctors locally to make decisions on a new option. I am sorry sbout the info you have recieved. And sonetimes junior doctors are less experienced at explaining things

 

Maybe your first option/idea might be to phone the consultants secretary and explain that you'were left feeling a little 'unclear' about what you had been told and ask if you could get an early appointment to  see the consultant.

 

Please keep us updated, Moijanxx

Stillhere
Member

Re: Help or Advice needed

Hi Dinkybaby, so sorry to read about your Mum's horrid experience. It's difficult to advise when I don't know your Mums clinical details but it seems as though there should be more options for her. In your shoes I would think about getting a second opinion over here at a specialist centre, as others have said. The Christie hospital is in Manchester, is that a possibility for you?

 

Wishing you and your Mum lots of hugs xxx

Dinkybaby1
Member

Re: Help or Advice needed

Awk Nicky thank u so much for ur info, unfortunately we are in Northern Ireland so not many opinions available!
I'll keep yous informed!
Thanks for all the hugs etc
nicky08
Community Champion

Re: Help or Advice needed

Hi dinkybaby1

What a shock for you and your Mum, and it sounds like it wasn't delivered in a very sympathetic way. Although I have been around this forum for many years and have read about all sorts of treatments it is difficult to suggest what could be done with your Mums treatment form now on. However what I do suggest is that you get a second opinion, at a different hospital. I have requested this on 2 occasions to check that the treatment I am about to start is the correct one and have both times gone to the Marsden. Depending where your Mum lives there are other centres of excellence for cancer such as The Christie (in Leeds I think) so hopefully there is one relatively near to her that you can travel to. As a patient you are entitled to a second opinion and although I found my oncologist was not completely happy with me asking for one as far as I am concerned it was 'tough, it's my life, not yours'!

Good luck and I hope there is someone out there more sympathetic and comes up with a new treatment plan.

Nicky x

Dinkybaby1
Member

Re: Help or Advice needed

Thank you Helen!
You guys are a real source of help and love!
Xox
HelenAquarius
Member

Re: Help or Advice needed

Hi Dinkybaby1 - gosh what terribly horrid news. It does sound a very bad prognosis considering what her mets are. Many on these threads, including myself, have "extensive" mets. My bones are "riddled" according to my GP but I'm pretty sure (fingers crossed!) my prognosis is better.  The things we don't know is how aggressive the cancer is - ie how quickly it is increasing. I don't really know the answer but it's often when you come out that you start wishing you'd asked more questions about what they tell us.  I'm sure others on here will add comments but you could get a list of follow up questions and call the breast cancer nurse to get some clarification. 

 

My thoughts are with you and your mum, I am sure you are going to make the most of this precious time with her. 

 

Sending MASSIVE ((((hugs)))) 

Helen xxxx

Dinkybaby1
Member

Help or Advice needed

Hi all
My poor mum has had the worst day ever! Basically a junior dr has told her that there is no more treatment as Navelbine has failed! She got this all from blood tests alone as CT scan results are not ready yet! On top of this the Dr told my mum that she's looking at surviving only a few months now! My mum has 3 liver Mets and 1 bone met in a vertebrae! No symptoms at the minute, no pain etc! Has had Femara, Xeloda and now Navelbine since Christmas but surely there must be other treatments we cud try!
Thank yous for letting me rant!