scottsmum
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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.
Tina ,
My sympathies for the recent loss of your dear mum,I am sure that she was a wonderful person and you will miss her terribly.
We recently lost my sister in law suddenly due to respiratory failure at the age of 58 years,and I am currently supporting my father to look after my 81 yrs old mother who was diagnosed in June with cholangio.
Our situation is much complicated by the fact she has also had two serious strokes.Our story is there to read under” Mum just diagnosed Ninewells”.My own mother’s cancer was not that advanced in June but her age and frailty meant that the doctors have given her no treatment other than fitting a metal stent to relieve her jaundice.I have mixed feelings about this ,but am glad she did not have to suffer the ill effects of Chemo or radiation as I understand that in many instances it has little effect on cholangio.
I think that at her age they are just going to let nature take its course,and keep her as comfortable as possible.The only thing that bothers me somewhat is not knowing how things are progressing inside her poor body, but with the disability and dependency of her condition,I think that she will be ready to go when it is time.I know that I would in her position,as her quality of life is now gone.
I hope that you will soon be in the place where your grief turns into quiet joy recalling all the happy and even funny and endearing little things that made your mother so special to you.At that point you will see and hear and even smell things that will remind you of her and be assured that she is still close by,keeping an eye on her family,but in a place where illness of the body can no longer affect her.
Sadly I fear that I will be in your position fairly soon,missing my own mum,but you just never know with this unpredictable cancer ,maybe she will surprise us all.
We just get on with the practicalities of every day and do not dwell on it ,as every day is a gift.ScottsMum.
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
Went this evening to the hospital to see my Mum and she has been running a bit of a a temperature for a couple days ,but last night and today it is officially a fever.Over 39 degrees .She is flushed and looks poorly.
They are blaming the super-bug in her urine ,but there are no indications of discomfort.She had an X-Ray today to rule out a chest infection,and that came back clear.
I hope her stent is not infected. I know this can happen sometimes to people ,but she was fitted with a metal one which is supposed to be the more permanent option?
Anyone have experience of fever and stent blockage/infection themselves?
She just seems to have one setback after another.Discouraging for her and us as well.
Just wanted to Update on the link sent some time ago by Marion. RE- Hyper coagulation of the blood
Mum has now a large blood clot formed in her groin caused they say by the immobility after the stroke + tendency of the blood to clot easily probably due to the cancer.
How much more for her to tolerate ?
ScottsMum.
Hi Gavin,
We had a good meeting with the doctor on Wed. and it seems that her bloods have come back A OK and they are blaming the antibiotics they administered for her super -bug urine infection for her vomiting.
They have given her some IV fluids and stronger anti-nausea drugs and she has perked up a good bit.The vomiting has moderated to a bit of reflux today and she is smiling again to see us all.
Her prognosis is for months rather than just weeks ,so we were very alarmed at the vomiting .It was quite intense and I would hope that if it returns during the course of her illness ,that they can do something to control it.
She has been having Heparin injections for her clots, so the warfarin will not be started till she is over the sickness a day or two,in case they unsettle her again.
Typical case of the cure being worse than the illness.She was being big time sick (as if she was on chemo.)Very distressing to see.
Dad has had a first visit from the Macmillan nurse and she is popping in to see Mum tomorrow, I believe.So this is all very positive and I am relieved the latest crisis seems past for the time being.
The doctors at the stroke unit have been swotting up about CC and are in contact with the GI consultants at Ninewells.We are very happy to leave her at Stracathro as the unit has a ratio of four staff to seven patients at the moment.Where else would you get that kind of attention,certainly not at Ninewells !They are starting her physio again too as this is all in situ on the unit. It really is 5*,we will have to have a collection for the unit sometime in the future ,for all their good work.
Thanks for your ongoing concern,
Scottsmum.
Thanks Gavin for your post,
The past couple days have been pretty horrible for my Mum,the nausea has worsened despite injections of anti-nausea meds.and nothing has been staying down,not even sips of water.
Dad and I are meeting with one of her doctors tomorrow afternoon,but I think things are getting quite serious now myself, I’m wondering what more can come.
If they can’t control the vomiting and it doesn’t abate she is going to go through hell as she is spitting up every few minutes when awake.She goes off to sleep for a little while and seems comfortable ,but the minute she wakes up she vomits again.
So despondent seeing her struggle with this.Can the CC be taking over already,they gave her up to a year from her scan results.Maybe the blood tests will give us a clearer picture of what is happening.
Warfarin treatment could not be initiated due to vomiting up the tablets.The clots will still be a potential problem .
Feeling tearful tonight.
ScottsMum
After a week in the stroke unit at Ninewells,my Mum has been moved nearer home to the Stroke Rehab Unit in Stracathro Hospital which is good for visiting as it’s just 10 mins away.
She has been there for two weeks but has little return of movement and physio has had to be halted as she has developed multiple DVT clots in her groin.Her poorly leg is very swollen.They have started Heparin and are to put her on Warfarin tomorrow.
She also has developed an ESBL infection in her urine.I had never heard of this ,but it is basically a super-bug .Hospital acquired and due to indwelling catheterisation.
So everything seems to be going wrong for her.She has no appetite and is starting to refuse food and fortified drinks. She has been vomiting sometimes after eating what little she takes,and is complaining of nausea and is miserable.Maybe they can give her something for the nausea.
She says she feels like she did when the jaundice was creeping up on her before , so I am wondering if the stent is still functioning properly. These things are known to block up ,even the metal ones,which is what she is fitted with about six weeks ago.Maybe it is disease progression of her CC.
She continues to lose weight gradually and is now very frail looking.
I am a bit concerned that due to being in the stroke unit ,they will not be all that genned -up on the CC,as it is an uncommon cancer.However, we want to keep her nearer home than Ninewells as the daily journey there was killing my father.
He is taking her illness very hard and is aging before our eyes.I don’t think he feels there will be any reason for him to go on if Mum goes.His doctor has him on Beta-blockers, but they don’t seem to be helping very much.
I am resigned to the fact that ultimately Mum is not going to survive this, but it pains me that she is having to endure so much ,and it is hard to see her so ill and now dependent as well .She is also nearly blind from the stroke,and can hardly see what’s in front of her.
It is such a trying time for all the family and the constant trips to hospital are getting so depressing with every day a new problem.We are not likely to ever get her home now,she needs intensive nursing care .So sad.
ScottsMum
Thanks Gavin for your support,
My Dad is much calmer today,he kind of lost the plot yesterday after struggling with her alone at home when it happened,and the disappointment that he would lose her to hospital again after only three days home.
Mum has come through a comfortable night and has been scanned and transferred to ward 4(stroke) Ninewells. Stroke confirmed and left sided weakness/ loss of vision resulting.
We have unfortunately walked this path before,but she was much stronger then,so progress may be slower than before.
One day at a time from now on.
ScottsMum
Sad to report that Mum’s stay at home only lasted three days .
She has taken another stroke yesterday and Dad had to phone for the emergency services as she was paralysed down the left side .So traumatic for him.
She has been re-admitted to hospital and some movement returning but not a lot.
I know that I was extremely worried about Dad coping at home with her,but this is a real Monkey’s Paw.The reality of the situation has now hit him like a truck and I thought at one point today he was going to need medical attention himself.
It is just such a downer for everyone as she was making some worthwhile progress and even managing the stairs with some assistance.Even if she’d only managed a few weeks at home they would have had quality time together.
I have a posting under” CC connection with strokes”under General topics
re- her stroke 18 months ago.Almost as if I’d a premonition of this.ScottsMum
Hello Marion
Thanks for the link,it was interesting to read,but Mum’s not had any vein problems or phlebitis,although the two strokes now during the presumed course of her CC does make me wonder if there can be a connection.
Why my poor Mum has to be so doubly afflicted just makes me so so sad.
She is so much weaker now than 18 months ago when she had the first one ,and I doubt there is time to make a recovery before the CC begins to bite.
My Dad so doesn’t want to lose her yet,but she is just about ready to give up the fight now.This second stroke will so affect her quality of life for the foreseeable future.
ScottsMum
Sad to report that My Mum took another stroke this morning after only three days at home.
They are to CT scan her tomorrow to check if the symptoms are due to stroke or less likely Mets to the brain.We are holding our breath ,but her quality of life has gone down from managing at home with Dad to totally dependent overnight.
ScottsMum
Thanking everyone for their input,
My Mum returned home from hospital today ,but Dad has refused help”at this time”and I quote, despite all the family’s wishes. He wants to look after her himself,but the progress of this disease will ultimately wear down his resolve I fear.Also there is the Stair which she is barely managing with assistance.A downstairs commode is in situ.Not great, but better than nothing.
The family is hoping to help with Mummy-sitting and maybe some help with the garden as the need arises .He has said that they will seek help in the future if need be ,and we are going to have to leave it at that for the moment to save feuds and my sanity!
Unfortunately there is only myself and my husband and one of my sons who live locally,so our pool of family helpers is awfully small.
I will be keeping a close eye on their progress and helping out when I can.My first day of Mummy-sitting is in two days time as Dad has a hospital outpatient procedure to attend in Ninewells Hospital.
This will give me all day to spend with Mum who for some reason seems to be detached and a little sad to be home from hospital.Maybe she will open up to me a little when Dad is not there and we can have a good chat.
I get the impression she is not happy with the fact that Dad is going to make her go out in public ,taking little walks and going for coffee etc.
She is embarrassed by her frail appearance and swollen feet,She feels those who know her will be speaking about her and how she has “come down”,She was a woman always concerned with her appearance and is experiencing loss of self.Hopefully they will soon have the services of a Macmillan Nurse who will try to allay her worries on this and other aspects of her journey through her illness.
We have been told weeks/months by one Doctor and 18 months by another, so I have no idea how this is going to play out.As long as she has quality of life , then longer will be better,but if things go awry quickly and she is bedbound or in pain,I’ll be praying for the shorter option for her own sake.
I still want to wake up and find this is all a nightmare.We all would like a long healthy life and peaceful passing to the next for our loved ones and ourselves when the time comes.Why do bad things happen to good people,you ask yourself?
ScottsMum.
