March 5, 2011 at 1:15 pm #39093
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.February 28, 2011 at 12:53 am #39092
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.
ScottsMumFebruary 26, 2011 at 6:50 pm #39091
That is great news to hear that your mum is feeling a bit better and that she also had a peaceful night, and she is eating a bit and that is good to hear as well. My dad got a bit of a boost when he came off most of his meds and went on the syringe driver and he also started to eat a bit more, plus he would complain of being hungry and wanting food and that was great to hear! I think that when my dad was taking so many meds orally and was vomiting so much then he wasn’t getting the benefits of any of the meds as he kept bringing them up. So once he was on the driver he felt a lot better and was more chatty and stuff and I hope that your mums gets a similar bounce as well.
That is great the whole family will be visiting today and that your mum will get to see her second great granddaughter for the first time, that will be the best medicine of all for her! And as you say, this is definitely a day to treasure and remember. Please keep us posted.
My best wishes to you and your mum,
GavinFebruary 26, 2011 at 2:36 pm #39090
Dear Scott’s Mum, The best news is that Gran is now comfortable for the most part. As to what is next is anyone’s guess. I am wishing for this “comfort” to last through the end of her journey. Your family is going through this with Gran just so beautifully. You are making new and endearing memories to last a lifetime.
To me, the best medicine is always seeing a new baby, it is an affirmation of life. Prayers goig out to your family and just ENJOY!February 26, 2011 at 1:57 pm #39089
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?
ScottsMumFebruary 25, 2011 at 7:08 pm #39088
I am sorry to hear this news about your mum. You have done everything possible for your mum and have given her such good care. I hope now that your mum is in hospice care and is on the sysinge driver that this will help keep her as comfortable as possible. When my dad was in the hospice, they stopped a lot of his meds and started giving them through the syringe driver and this helped him quite a lot. It helped with his nausea and also pain as he was getting the meds continuously rather than having to take them orally. Please know that we are all here for you.
GavinFebruary 25, 2011 at 2:06 pm #39087
Dear Scott, I am so very sorry about your Mum. She is lucky to have a son like you at her side and it appears your family as a whole has taken such good care of her. I wish for her a Peaceful journey.February 25, 2011 at 11:51 am #39086
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.January 28, 2011 at 12:12 am #39085
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.October 21, 2010 at 7:09 am #39084devoncatSpectator
Nice to hear from you again ScottsMum. It sounds like things are going pretty well and everyone is taking the time to treasure those special moments.
I am very happy your mothers cancer appears to be easily distracted and lazy so that your mother can just enjoy life as much as possible.
KrisOctober 18, 2010 at 1:39 am #39083
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.August 11, 2010 at 3:20 pm #39082
Dear Scott’s Mum, we are so happy to hear your Mum is better. Enjoy this quiet time now and we are hoping for her to get better in all respects.August 11, 2010 at 3:05 pm #39081
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’sMumJuly 29, 2010 at 11:22 pm #39080
Glad to hear that your mums temp is just about back to normal now and that she got some sleep and had a better night last night. Hopefully tonight she will get some more sleep. My dad had a bout of MRSA when he was in Ninewells and that was the last thing that he needed then!
Hoping that your mum has another comfortable day tomorrow.
GavinJuly 29, 2010 at 11:09 pm #39079
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.
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