Mum just been diagnosed Ninewells

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.

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 have not posted on my Mum’s journey for some time as she has been at home under care of my Dad with a lot of help from ourselves and SCO’s (social care officers ) coming in four times a day to help .She can not stand without a hoist and her left arm has not regained function after her second stroke.She is mentally aware.

She has lived longer than we expected (at diagnosis )already,how the weeks and months fly by.She is constantly getting urine infections from an indwelling catheter , but always seems to spring back.

However ,she is looking very gaunt now and is refusing to eat any substantial food most days,so I am not hopeful there is much more time left for her .However ,she is not retaining water in her abdomen ,has no jaundice, the stent still appears to be working, so who knows, maybe she will surprise us all again.

I love her dearly and do not want her to suffer,so I hope there is not going to be a lot of pain after all the trauma of her strokes and lengthy hospital stays.She has borne so much to this point already.Other than the stent they have offered no treatment because of her age and frailty.Perhaps the cancer is growing slower because of her age.

She has lived to celebrate her Diamond wedding anniversary ,birth of a second great -granddaughter, Christmas and New Years since she was diagnosed last May 13th .We continue to hold our breath and take each day as it comes.

Hello all,
Not posted for a while ,my Mum has been in hospital for some months now after her stroke and was discharged last Wednesday into “care in the community”.We have been away on a holiday which was already booked and paid for ,as her health seemed stable and that proved to be the case with no nasty surprises whilst we were away.
Coming back we were thrown into getting a wheelchair friendly flat ready for Mum and Dad,and also the preparations for their already booked Diamond Wedding party,which they quite bravely wanted to go ahead with.

That took place on the 15th October and all family and friends seemed to have a good time despite the obvious sad disability of Mum who had to attend in her wheelchair,instead of their intended dancing round the hall.

Whilst “Congratulations” was playing to start the dancing I took my Grand daughter and whirled her around as representing the future of the family so to speak.Then everyone just joined in and a good time was had by all.
Another great grandchild is expected next week for my parents,and at least she is going to see that one as well.So happy yet sad times.

Mum’s weight seems to be holding up and no sign that her cholangio is advancing appreciably,so maybe it is only growing slowly.Her metal stent seems to be working fine at the moment,and she eats a little and no vomiting.She is very disabled now and in some pain from stiffness with her immobility and also blood clots in her groin give her a lot of trouble and a very swollen leg.She is also nearly blind from the stroke.All this and her mind is still quite acute ,so she is aware that she is in a very poor state and dependent.

I don’t think with all the help in the world that my Dad will manage to cope very long with her at home,but he will have to experience and find that out for himself,as he is the most stubborn old man, but sadly not as capable as he imagines himself to be. The upheaval of her discharge, the move and the party in the one week has been a lot to take in and has left him all at sea.But at least they have the Royal Message on the sideboard.

I am so happy that she has made it through to their special day,and each one now will be a bonus,although very hard too.I expect she will have to go into care as she deteriorates,possibly very soon,but they are together again for now.

Hoping all of you experiencing life with Cholangio are finding some small thing to treasure each day,

From a very tired and weary,

ScottsMum.

Hello all,
Just to report that Mum is a good bit better and feeling well enough to complain about the food/nurses etc. More like herself!

She is not making great headway with the stroke recovery ,but it seems she is over the hump with her other health problems for the time being and the stent is working well.

Her appetite has returned somewhat and she is enjoying small seasonal treats of fruit we are taking in.

So quiet times and we are thankful.

Scott’sMum

Hi again and thanks to all who posted.

Mum has been receiving IV anti-biotic since yesterday and her temp. has thankfully dropped to just about normal today,and she had a better night last night,sleeping well.Urine and bloods have been sent away,so hopefully they will not find it is the stent.The ESBL is probably the cause.Superbugs!!

She is more comfortable today,but having some pain from the blood clots in her groin,which are being slow to resolve.

Such a frail old lady now ,my Dad looks like he could be her son,she is aging so rapidly before our eyes.Starting to look like a baby bird.

ScottsMum