scottsmum
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Hello and thanks to all who have expressed their sorrow at the passing of my dear Mum,your sentiments are greatly appreciated.
I have gone back and read my posts a couple times now and remember how much it helped me during the hard times of her illness to express my emotions here and “vent” somewhat.It really was a great help.Also, when I look at the dates involved and how unwell she was in 2010 and again in 2011, I find it almost miraculous that we had so much more time with her than we expected.Also it brings to mind that she had suffered enough and is now in a better place.
We will never know if it was her cancer that finally claimed her or a completely different event, she passed so quickly at the end .
We have all the funeral arrangements in place now for Monday 28th .I hope she is happy with our choice of music and hymns.I shall look for a sign!
To all my supporters here a big thank you—-God Bless you all !!!!
ScottsMum.
Hello to all at CC forum,
Having no news from me since September 2011 when my Mum’s cancer was deemed in remission; she has spent the last months of her life in a wonderfully homely care home a few miles from our town and sadly passed away on 18th May 2012.She was 83 years old and until her strokes and CC diagnosis had lived a wonderful life.
She appeared to have had an upper GI bleed which may or may not had to do with CC mets.We have decided against a post mortem/autopsy ,her poor body had been through enough trauma.She was very frail but fought with spirit to the end,which when it came was mercifully quick and peaceful after her long journey.
God Speed Mum we love you–Fly little bird!
My best wishes to you all,and thanks for your support in the past.
ScottsMum
Hello again everyone,
In a more earth shattering update we have just received news today of a recent scan that Mum had last Friday.
Her tumour appears to be in REMISSION!!!!
Her metal stent is in position and functioning well and there are no detectable or apparent secondary growths to the liver or the pancreas. The tumour mass shown in place around the bile duct in last year’s scan is gone or so small now as to be undetectable on the recent scan .
This at least explains her improvement ,and then some! We are all a bit taken aback ,and I’m very concerned now regarding her long term care as she is completely helpless, really.A battle will now start again with my father who was overwhelmed trying to look after her at home last time.He is 83 years old and not up to the job ,but try telling him that!
However I hope that the news of her tumour receding gives succour to the many others out there going through their own journey at this time.
She had NO treatment or chemo ,and seemed to put it out of her mind completely that she had a cancer.Her own body seems to have done the rest.
I still cannot believe I am writing this.I hope that they have not mixed up the results!So onward into an unknown future ,still one day at a time.
Blessings to every one of you ,and I wish you all your own miracle.
ScottsMum
Hello everyone.
Haven’t been on for a while so here is an update. For another couple of months my Mum has made it through.Her tenacity and fighting spirit has surprised everyone including her doctors and caregivers.She has been taken off the driver meds. and put on morphine patches and the past few days even shown some improvement.They had her up for short periods and dressed ,sitting in a chair ,after six months in bed.She was taken for a bath yesterday and her hair washed which pleased her greatly.
Today she is not so well again and has blown up one of her fevers,so all this apparent recovery is down the pan once more.
It is very much one day at a time with this CC. She does not have too much pain and is able to eat a little every day.She is still communicating well most days,although she does have sleepy periods.
I cannot believe it’s nearly a year since their Diamond Wedding party.My folks will have been married 61 years next month.
Stay strong everyone and don’t hold back on the love,
ScottsMum
Yet another month gone by and Mum still with us although weak and sleeping a lot.She is talking of “Wanting away” now and who could blame her after nearly five months bedridden and staring at the hospital ceiling when not asleep.She cannot read or watch TV as she lost her sight (with the second stroke)in her left eye and her vision was failing anyway.
She talks of being wonderfully looked after by the nursing staff and doctors at the local infirmary but even they have not been able to keep her pain free despite best efforts.They had to take her off the driver meds about two weeks ago due to running out of sites on her body to install it ,she has been on them so long.The alternative medication is not working as well and she has had some vomiting,and generally not feeling good.
When it looked like she could not become frailer and weaker without actually passing away she has dumbfounded everyone with her tenacity for life.
The great granddaughters are visiting again in two days from Ireland, so God willing she will see them one more time.My thoughts are with you all who are living through a CC journey.
Scottsmum
Well another month has passed and my Mum did not pass away as we and the nursing staff expected. Weak and thinner every day she continues to hold her own,although she has been unwell twice and we thought not long now.
Both times she has rallied and come back to us.
It has come to be a daily ritual visiting the hospital and my father is there more than the staff,spending all afternoon every day and going back in the evening after his meal.We are so lucky that there is a local infirmary where she is only 5 minutes away or all these visits would not be possible.At the moment she has a side room which gives them good privacy and she can have as many visitors as she likes.
The driver meds. are quite high now ,but of course she has built up a tolerance to them .What would knock us cold is keeping her comfortable and although she does sleep quite a lot she has good periods where she is lucid and can carry on a conversation.
It will be one year on the 13th since she was admitted to Ninewells with painless jaundice.This is just an update on her journey to any who are following her story.
Scottsmum
I just felt I had to vent a little today what with all the hype about Mother’s Day on TV and her own Birthday coming up on the 6th April, I feel it keenly that I have nothing to celebrate this year ,and will have no mother to buy presents and cards for next year.Having had a mum for 60 years (nearly!)that is going to feel very strange to me.
Mum remains in hospital on palliative meds. for six weeks now and she is still among us while others in the neighbouring beds have completed their journeys and passed over.
It is very tiring emotionally on the family,especially my Dad, who is beginning to look strained and depressed.I don’t know what to say to him anymore,and we sometimes just sit and watch her sleep.She is so frail and tiny now there is barely a bump in the bedclothes where her legs are,and her features are skeletal,so much so that you can barely recognise her. Surely it cannot be much longer now,but I’d not like her to die on her birthday for some reason.She will be 82 years old,a good age I know, but I just wish she had not had the debility of the strokes and CC to contend with this past year and passed with something quicker and therefore kinder.This you would wish for a mother and a friend ,which she is to me.
So sad yet tears won’t come.
ScottsMum.
Dear Rae,
Sorry to hear that your mother has passed , but be assured that she is not gone . As close as you were with her she will still figure in your life a great deal as the love never dies,it is carried with you for the rest of your days.
Please try to rest some and eat something nourishing for your own body’s sake.Once the funeral is past is probably when it will hit you the most-we lost my husband’s sister last summer and we know.
Facing it all again with my mother soon .The circle of life goes on, look to the beauty of the sky and the soft wind in your face . Your mother will be there.
ScottsMum.
Thanks to all who answered , I will take your advice.
To Lainy if you read this -I can put a face to your name- as I watched your video regarding the shameful report of the Hospice where Teddy passed.I was heartbroken to hear of this as these places are supposed to be a haven for people approaching the end of life,not some sort of dying conveyor belt where no one could care less.He deserved so much better as does anyone who may cross their doorway.Now you have to cope with anger and regret along with your grief .
I know they are giving Mum more than she likely needs in the Morphine department and that may lead to things that may shorten life,but at this stage I find that immaterial.She is settled and pain free.
May God take her when he wills ,her body is spent.
ScottsMum.
The latest is that the doctor has upped Mum’s medication and she is sleeping mostly,and seems free of pain and peaceful. I don’t feel that this much morphine is really necessary yet as it is suppressing her respiration,and as a former nurse know what the outcome of that will likely be.
However my Dad is hoping now that she will peacefully go sooner than later,so I will go along with the doctor and his decision without comment.
I just feel that there was still so much I would have liked to say to her before she went.
My parents didn’t talk about the cancer and that she was actually dying from CC,they preferred to pretend it wasn’t going to happen.It didn’t give me much chance to tell her how much I’ll miss her .We just seemed to drivel on about mundane things on our visits ,although I realise that talking about dying wasn’t a cheery subject I would have liked to reassure her more .Also that we will take good care of Dad ,who after the death of Walter ,her brother ,some years ago will be the LAST Musketeer.The three of them were always together.I am sure that Walter will come take her soon to a better place.
ScottsMum.
Hello Rae,
I would just like to let you know that we are going through the self same thing with my Mum who was diagnosed ten months ago.
She is bed-bound on a lot of morphine now and we are just waiting for the inevitable.How wonderful that the doctors were able to give your mother 11 years with you after diagnosis and resection!This will make very hopeful reading for those about to go through with this challenging surgery,and bring them bucketfuls of hope.
Unfortunately they could not offer my Mum any treatment due to age and frailty,and she was also disabled from strokes,one which she suffered after diagnosis and left her pretty immobile.You can read our journey so far under “Mum just diagnosed Ninewells” if you are interested.
This is a very informative site.I haven’t answered a lot of posts due to the fact that Mum was having no treatment,but found it reassuring that we are not alone in our everyday battle with CC,and gleaned a lot of information on what to expect along the way.
Many come back( after their loved one passes) to the site to share their grief and experience of bereavement.Just typing out the words can help to settle the mind and calm the spirit.
From our family to yours I wish your loved one a peaceful passing and keep safe all the wonderful memories of years gone by in your heart.
Mum was delighted to see her little Emma and she is certainly a beautiful happy baby and very well behaved too.Also she was amazed at how long the three year old’s hair is now.I think that she is a little depressed tonight as they have all returned to Ireland today,She is probably aware she may not see them again.
Sad yet happy times.My Dad doesn’t know where he is emotionally at this moment.He was all steeled up for the worst when she was taken away in the ambulance,but she seems to have rallied a bit on the driver meds now,and he doesn’t know what to think.
This CC is a tricky beggar.They may even send her home again,we don’t know.I don’t think it’s easy to be on driver meds at home .Gavin you would know.
ScottsMum
Hi to all especially Gavin and Lainy who took the time to answer,Thanks.
Can I just say firstly that I am actually( Scott’s mum ie ) female to clear up any ambiguity,and the lady with CC is my mother & Scott’s gran.
Yes Gavin,they have her on the syringe driver and she is now actually eating a little for the first time in TWO WEEKS and no apparent nausea.She is also chatting away and so animated as of yesterday.We just wonder if it can last at all or is just the eye of the storm.She was taking a lot of meds by oral route and I don’t think this was helping her cause one bit.
She has had a peaceful night by all accounts but the ward is very busy.The hospice side is run alongside general CO Elderly in Brechin,but that did not stop her from requesting a private room !Bless her!Some hope!
The whole family is to visit today, including the Irish contingent including the new baby,her second great grand daughter, whom she has not yet seen in the flesh,so it is a day to remember.
She has been so much recovered since the driver was attached, we didn’t know if she would get through the night on Thursday,she seemed so gravely ill at home.
She has been having huge spikes of temperature ,but forging through all the info I can glean from this site I read that others have experienced this and it does not necessarily mean infection.Every time it happens they have classed it as UTI due to her catheter and prescribed antibiotics.This time we and the admitting GP said enough ,lets treat palliatively and see what happens ,she is so frail,it may be time to let go.The fever disappeared overnight on its own,and on the driver she is chatting away as if she has just returned from the Pub on a Saturday night!
She is so tiny and endearing and funny it just breaks your heart ,but we laugh along with her and treasure the moments.
Keep you posted.What happens next?
ScottsMum
I am sad to report that my Mum has left this morning to go into hospice care. She spiked a high fever with vomiting last evening suddenly. Although she has been refusing most food and reluctantly drinking for about two weeks,it still has kind of taken us by surprise.
A doctor came in the small hours and the district nurses who put her on a syringe driver to make her comfortable and control the nausea.We have declined any aggressive treatment for what seems to be an infection.It seems to be unfair to prolong her life which is of such poor quality now.The doctor completely agreed with the decision.Now we wait,and hope that she is comfortable till nature takes it course.
She has had a long and happy life, it is just so sad that it had to end with this damned CC.I know we all have to pass with something but she has had a lot to bear with the strokes as well.So much burden for such small shoulders,
I love you Mum.
ScottsMum.
HI Alison,
Sorry to hear your dad is going through such a bad spell .We experienced the same last summer with my mum.She had a metal stent finally inserted and nine months on she is still here with us ,though sadly losing a lot of body weight now due to the lack of appetite which affects her exactly the same as your dad.So take heart, there may be time left yet .
She has an infection as of yesterday,although they are blaming her indwelling catheter (urinary).She is also a stroke victim .My dad still looks after her at home with our help and four daily visits from social care ladies.We are lucky to have this service free in Scotland,or she would have had to have been in a care home.So more antibiotics and waiting to see.
Not many people here have had no treatment other than stent fitted as most seem to be taking the chemo or other treatments,but depending on your dad’s staging of disease and his age it may take a gentler pace than you expected. Make the most of the good days to spend happy times with him when you can.
Best wishes
ScottsMum
