Re: Mum just been diagnosed Ninewells

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.

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

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.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Mum just been diagnosed Ninewells

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.

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

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.

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mum just been diagnosed Ninewells

Dear Scottsmum,

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.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Mum just been diagnosed Ninewells

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

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mum just been diagnosed Ninewells

Hi Scottsmum,

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,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Mum just been diagnosed Ninewells

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

A hard journey means a joyful arrival

Re: 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.

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

Dear Scott's Mum, if I may make a suggestion having just been on this journey with Teddy, talk to her anyway! Let her know everything because even if you feel it's too late to talk, she will hear it and you will have said it. Teddy was in control of his mind, in a way, up to the last few minutes until he passed. They know, they just know. Also please accept the Morphine as given as Hospice did NOT give Teddy as much as he had been taking and it was not a good scene. If I had the Morphine from home I would have given that to him myself. It is good that your dad has the mind set he has and I wish all of you a Peaceful journey and Blessings.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mum just been diagnosed Ninewells

Hi Scott'sMum,  Your mum is such a trooper, how she keeps coming around and chatting it up and all. She sounds like a real sweetheart. They say the last thing to go is hearing, so I agree with Lainy talk to her now and if you do not get the chance to say everything you wish she will know, she will feel it. My thoughts and prayers are with you and your family. Nancy

Loving my husband from afar.

Re: Mum just been diagnosed Ninewells

Dear Scott's Mum - I agree with Lainy .... talk to her anyway.  But also understand that she already knows the kind of person you are and that you will take care of your Dad and that you will miss her.  I always say that is why it is so important to do things every day while you have someone.  Wishing you all peace and best wishes - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Mum just been diagnosed Ninewells

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.

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

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.

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

Dear Scott's Mum, I understand completely how you feel and what you are going through. My Mom passed 1 month after Teddy. She was 94 and in excellent health for her age except for dementia. I had always told myself that to live so long and in her good condition for so long was a blessing and that we were lucky that way. I never cried. But perhaps I was drained from Teddy's departure. I think you are just numb. Sometimes we need and deserve a little break no matter how small. There were days that I didn't see her and my daughter and I took turns visiting. We never stayed that long, maybe an hour or 2. I always felt that was not really her at the end. That is not the beautiful and vivacious woman I knew as my mother. Maybe you can try and change your thinking about IF she goes on her Birthday. I think of it as being born and returning on the same day. Your Mum has shown you another side to her a side of bravery and courage. Her comfort is the bottom line and it sounds like they have her pretty comfortable. I know you will keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mum just been diagnosed Ninewells

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

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

Thanks Scott, for keeping us abreast.  Your Mum is comfortable, easy to visit and no restrictions on the visiting hours.  What a precious time for all.  May it continue.
Stay strong and enjoy those great moments of conversation.
My heart is with you,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mum just been diagnosed Ninewells

Thanks Scott for the update. I am so glad to hear that Mum is at least comfortable and that is the bottom line. This is the time to make some  wonderful memories that will last a lifetime. I pray for her continued comfort and for your strength to hang in.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mum just been diagnosed Ninewells

Scott: 

My thoughts and prayers are with you and your family.  I know that your Mum and Dad are treasuring the moments that they still have with each other, and for as long as you have your mom, let her know that you love her.

Go with God,
Margaret

Re: Mum just been diagnosed Ninewells

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

A hard journey means a joyful arrival

Re: Mum just been diagnosed Ninewells

Dear Scottsmum,

I am so sorry to read your post. I wish that there was something that I could say to help. You and your mum have been so through much and I know how hard this is for you having been down this road with my dad. From what you say, it sounds like your mum is being well cared for. Is she in Stracathro or is she in hospice care right now? When my dad was in hospice here in Dundee, he used to get pain shots when he needed them and that helped a lot. What pain meds is your mum on right now and also, what are they doing for the vomiting?

Your mum is indeed showing her tenacity for life and I know how much she will love seeing her great granddaughters from Ireland. I so hope that your mum will have a great visit from the great granddaughters.

Thinking of you and your mum right now.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Mum just been diagnosed Ninewells

Dear Scottsmum, I am so very sorry to read about your Mum. You know, we pass on when we are ready and sometimes it is just a small thing holding one back. I hope she gets to visit with the Granddaughters and maybe that is just the ticket. It's very hard to watch a loved one go through what she is experiencing. I am not sure but but I thought there were some pain meds that could be taken rectally. I was also thinking of something like a Fentynol patch.
I am send you big prayers and hugs and for your Mum to find the peace she deserves.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Mum just been diagnosed Ninewells

Scottsmum....I too am sorry to hear of your Mom having to excperience pain.  Have suppositories been used on her? 
My heart is with you and your family,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER