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My mate
Evening all
I feel the need to reach out to someone/somewhere and find some answers and hope/reality.
My dearest friend is fighting. She had her secondary diagnosis (primary breast, secondary bones liver lungs) 3 years ago (I was with her when she got the 'wonderful' news)and 12 days ago she was admitted as an emergency and the diagnosis was toxicity (she had been popping painkillers on top of the morphine)and pneumonia. Last Monday we were told that she had 2 days left without the 98% oxygen or one week with. She fought like a trooper and now they are talking about "safe discharge" to home with 24/7 palliative care. I am so confused. I so want her to pull through but am a pragmatist. I spoke at length today with the Palliative Care MacMillan Nurse and yes, there is no healthy prospect but she is defying the odds, apparently.
My head is mashed.
Any ideas?
confused.com
Hello. I'm not sure if I can be of much help to you, but I didn't want you to feel ignored.
I have a family history of BC and my partner has just been diagnosed, plus I am an ex-hospice chaplain and ex-nurse, so perhaps my experiences might be useful.
Until close to the very end of a person's life, no-one can be sure when someone will die. Patients do often surprise the professionals; some would call it a miracle, others put it down to the patient's positivity (although others find that quite offensive, due to its implications for those who do not recover/improve).
You will do what you will do. All I can say is that, if this was my friend, I would be praying for her day-to-day comfort and peace, rather than trying to 'insist' on a particular outcome, and I would make every attempt to get one tiny piece of happiness into her life on each remaining day, whether that turns out to be two days or two hundred.
I'm so sorry you and she are going through this.
Sass xx
so sorry to hear your post.
i have no words of advise but wanted to send a hug and my thoughts and prayers
kaz x
No advice either, but you are both in my thoughts and you sound like a wonderful friend.
Vickie
xxx
Dear Sass
Thank you so much for taking the time to reply.
My friend was so ill that I had said my goodbyes to her, metaphorically, last week. I had promised her in the past that I would always be there for her two sons and made a point of telling her that nothing had changed on that front. I understand your point about not insisting on a particular outcome as her family members are now looking to get her further treatment when the reality is that none is available. As you say, comfort and peace are what matter at this time and I am trying to give her positive messages that make her smile.
The truth is I am feeling rather sorry for myself as I flit between two different hospitals every day. My husband is in one having suffered a stroke that has left him with aphasia and now my best friend is in another. Between them they have been my support network and rocks over the years. I would let it all out to my darling husband when I was angry with the cancer and then my darling best mate would hear everything you tell your girlfriend about and no one else! We are all only in our 50s and if this journey has taught me anything it is the value of friendship and how lucky I am to have the love and support of family and friends. It is so important to embrace life and to nurture those relationships.
So thank you again Sass for your timely kind words and my best wishes to you and your partner.
Lins x
Dear Lins, I'm so glad you too found comfort from Sass's posting. I've been living with secondaries since 2003 and was having a bad day today until I too read Sass's post. So a big 'thank you' Sass from me, I hope to remember your wise words.
Lins, I can offer no better advice but just to say, if it helps, a little, I'm so sorry to hear you are going through such times and to say 'thank you' for your posting too. We really do have to embrace life and sometimes I need reminding of this.
Lots of Love Sass and Lins, Belinda..xx
The day of the twin towers has a rather different memory for me. My mum was in our local hospice and we were told that she had entered the terminal stage and had at best just a few days left. We were called into the hospice early the next morning and all said our goodbyes to her and then waited and waited being told not to go further than the shops at the end of the road. After 3 days she came around and really started to improve. With a lot of support she came home in the October and I was in the privileged position of being able to get paid time off work to care for her. We had a precious Christmas with her and she died the following February. Everyone at the hospice was amazed and said that they had never seen anyone slip so far and come back. The extra time we were given was really precious to us, and although Mum was in pain and bedridden she had quality of life right to the end and wanted to be here. I hope that if I'm in the same position when the time comes I can have her dignity and I wish the same for your best friend.
Nicky
This forum is full of amazing people and my thanks and love to you all. It yet again proves to me that there is always some good be found in the most difficult of circumstances.
Your story is amazing Nicky. Thankyou for sharing it.
Lins x
Dear Lins,
I am so sorry about your dear friend.
You are right, this site is full of amazing women and you are one of them! You and your friend are blessed to have each other. I hope that however long your friend has left will be as peaceful and comfortable as possible.
You are both in my thoughts, Julie x
Ladies (and gents?)
I had a message this morning from one of my dear friend's sons to say that the rollercoaster was on a downhill, things had deteriorated, and no discharge was on the horizon as the Palliative Care team felt that she was too ill and it would be dangerous to attempt to move her. She was "out of it". So I went to visit and yes, she was "out of it".
Fast forward a few hours. After about 20 hours of sleep she woke up, ate and had a couple of hours of lucidity and smiles and chat. When I went to see her this evening she was dopey (just had meds that were kicking in) but was looking at a magazine (Woman and Home)I had bought her over a week ago and we discussed which dress and shoes we wanted to buy. We also had a very funny conversation about whether or not Barbara Windsor (sorry Barbara!) has a bird nesting in her hair! She then quizzed me on how I was feeling and how my hubby is, so I assured her we were all ok. Then she zonked again!
If anyone is wondering why I haven't named her it's because she is already registered on here and I don't want to identify her and intrude on her private space. We know most things about each other but this is one area that she has chosen to keep to herself, and I respect that.
Tomorrow is another day and I am happy that I left her relatively pain free and in her own peace.
Goodnight all you lovely people.
Lins x
Oh Lins, that will be a truly precious memory to hold on to. You sound a brilliant friend.
Sass xx
Hi Lins
I am so sorry to hear of your friend's deterioration and can only imagine how difficult a time this is for you with your husband being ill as well. The posts you have had thus far are an inspiration and reminder for all of us, I am glad they have helped you.
Sass is so right about getting some happiness out of everyday. That is what I am trying to do for as long as I can.
A big hug ( ) on it's way to you.
Sue x
Evening all!
I so wish I had joined this site at the start of this awful journey as you are all such a warm bunch of people who yourselves are facing your own demons. I feel absolutely humbled by the support and selflessness that is offered. I have noticed and felt the same positivity on our numerous visits to The Christie, as my friend has been fortunate to fall into their catchment area. Cancer is so evil but whilst it breeds destruction it is counteracted by all the goodness that comes to the surface.
I visited her for an hour this morning (before my trip to hubby!)and she was not good. One of the angel nurses (who has taken a shine to her and the family!) "filled me in" with the latest news and it transpired that my friend had tried to get out of bed during the night and taken a fall. As a result she was being moved to a bed opposite the nurses' station. There is added concern that she is now hallucinating and the medical team are not putting this down to the meds.
This is so poignant for me as although I am 54 now my darling Mum was taken by cancer when I was 11 and I remember her final journey, especially the part where she was talking to my Grandfather who had died when I was 2 but apparently was sitting in a chair in the corner of the room.
I visited again this evening and she was awake. She was still seeing odd things (reminded me of my mis-spent youth when I tried some very dubious substances!)but we did manage a huge dirty laugh sharing a very private joke which proved to me that her memory is intact! So I go to bed happy knowing that today she laughed and is not in too much pain.
Finally, a very lovely lady sent me a private message and if you are reading this now then I will reply to you personally and privately soon. I manage a lot of this process by just focussing on the matter in hand but your lovely message totally threw me (in a nice way) and I need a bit more composure before I respond!
Night all. Onwards and upwards!
Lins xx
To share a laugh with a good friend is a wonderful feeling.
I'm so glad you had that experience together today.
You sound such a support and yet a kindred spirit too.
You must have had some great times together.
Remember them.
They will never diminish.....
My mum too had the same sort of hallucinations when she was near the end and I just role played with her! My family were aghast at such antics but I just wanted to share every last moment with her and you will too, with your lovely friend.
Take the very best care now.
My Mum too had hallucinations due to high levels of calcium in her blood. When she told us to be careful because we were about to step on the baby we knew that her calcium was rising again and the gp would give her meds to help with it. It was always a baby on the floor that she would see, except for the one time when she insisted that the room was full of my Dads mistresses. He must have been one busy man! Once her calcium levels were back under control we all had a laugh about it. It's good that you're having some quality time with your friend. xx
Dear Sass... yu are one truely inspirational lady...
like all of the other posts I am sending you hug cyber hugs.
Please make sure that you also take time to look after you
thinking of you all love Jenny xxx
Thanks to you all for your kind comments, and a huge well done on how you are all handling your own particular situations.
Welshgirl; you were absolutely right to join in with the story - it is the most helpful thing for the person going through the hallucinations and you very cleverly did it, just by instinct!
Lins
Just wanted to say how very sorry I am for you and your dear friend and so wish there could have been a cure for her.
You are in my thoughts and prayers.
Linda
x
To everyone - so much love and thanks to you all.
To put it bluntly - same shit, different day!
Lins xx
Daft doctors! It's taken them over two weeks to diagnose hypercalcaemia. My lovely friend is so much better today and although she will probably be bed ridden there is talk of discharge on Monday. She still flits between lucidity and fairyland (she acknowledges this!). A hospital bed is being delivered to her house tomorrow (yes - on a Saturday!) and we think substantial nursing care is being arranged. All of this after we were told to say goodbye.
Nicky, it sounds so similar to your story. You made me laugh about your Dad's imaginary mistresses! I cannot believe the highs and lows of the last couple of weeks.
Fingers crossed!
Lins x
Hi..I haven't commented before but have been following this thread. I just wanted to say that you seem like a lovely friend to nave and I hope that, when the time comes, someone steps up to the mark like that for me. xxx
xwelcomex
My mum told me that "True friends are like diamonds, precious and rare. False friends are like autumn leaves, found everywhere".
I'm lucky that my friend is a diamond. You'll find plenty of diamonds on this site. They'll all step up to the mark for you.
Lins xx
Hi Lins, I can't believe hypercalcaemia wasn't spotted sooner, no wonder your friend has been hallucinating. That alone is a classic symptom.
Take Care, both of you..xx
Lins I agree thhat I can't believe the hypercalcaemia wasn't spotted sooner. Hallucinations was one way we knew mums calcium was going out of control. It really does sound like the time we had with my Mum. I hope that your friend can have the quality time with her family and friends that Mum managed to get. x
I hope now,you and your friend can enjoy some quality time together.
I'm sure her family are stunned by this news after so much sadness and grief but a reprieve it is.
Please pass on my best wishes to your friend and her family.
Do keep us informed and how you are coping too.
Best wishes, Welsh girl x
Rollercoaster continues!
Jump on board - this is a bumpy ride!
Due to be sent home tomorrow. Hospital bed in situ in dining room but package of care is District Nurse 4 times a day. One son off work for a couple of days and very elderly mum (80s) moving in this week.
My mate is ...... dependant on oxygen and high doses of morphine, prone to hallucinations and very confused. Catheter in place. Unable to transfer alone but about to be discharged without an assessment of need. What the f*** is going on?
Ladies and gentlemen, please do not hyperventilate. I'm on the case!
Lins xx
Just want to say even at this late hour of Sunday/early hours of Monday we're all thinking about your mate and you. I'm so glad you're fighting her corner for her. You are truly a good friend - on her behalf, I say 'thank you'.
Your friend will be very comforted by your support.
Thinking of you both xx
Hi Lins
Yes, true friends are like diamonds, I couldn't manage without mine.
I have heard so many times about the medica not picking up on the obvious things that are causing distressing side effects like hypercalcaemia and even simple fluid retention that was sorted out with water tablets! The latter incident was also in one of those situations where the patients was asked where she wanted to spend her last days!!! This was a couple of months ago and she is doing okay now and responding to the chemo!
It may be too late to start this but..... it may be useful for others on this site. Since my secondary diagnosis last year I have kept a diary of my drugs and treatment, symptoms and what the doctors tell me etc. This does two things. Helps me feel as though I am an active participant in my treatment and, I believe, keeps them on their toes. When I was in hospital last year I heard the nurse telling the consultant before he came in my room that I was 'on the ball and had everything written down!' In other words a potential pain in the a..se, my description. I also send in a list of questions by email via my BC nurse before my appointments so that I make sure I don't forget when I am in there.
I hope your friend is home safely now and comfortable.
Sue x
Just saw this thread and my heart is with you. You have been, and are being, a true friend. My lovely sister in law is dying right now from cancer (not breast) and it is agony. I so empathise with what you are going through.
Much love and strength
Dilys
xxxxx
Home safe and sound!
District nurse night service, day service plus additional cover.
At last!
Good luck everyone and thankyou.
x