Mum just been diagnosed Ninewells
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- This topic has 65 replies, 14 voices, and was last updated 11 years ago by hamptonsarasota.
June 16, 2010 at 2:03 am #39063
Hi Gavin ,
Thanks for the welcome post and I am sorry that I have had to join this Forum ,but glad for the outlet.Friendship and information will also be vital in the coming days.
My Mum’s case was headed by doctor Elaine Hendry apparently,although I only spoke to a dr.Siddhi myself.He said weeks /months to me.Terminal.
Apparently the GPs have talked to my parents at Brechin Infirmary and have told them up to 18 months,which I feel is probably optimistic with Mum’s state of general frailty and the fact she is already starting with the swelling of the ankles.
The hospital your Dad attended was Stracathro if he was there for a scan,and they have a Macmillan Centre recently opened there with a Day Centre which I will encourage my parents to utilise.
The big deal was that up till Tuesday ,my Dad was in Big time DENIAL and refused to discuss her illness in any way shape or form and as such I don’t think he has much of a grasp of the reality of the situation.
Since the GP talked to them it is a bit of a wake up call for him and we have at least got round to talking stairlift.Unfortunately ,my Mum’s successful attempt at stairs during Physio (don’t get me wrong, great!) means he thinks that can go on the backburner for now.She may not manage them next week,for God’s sake ,we just don’t know!
If he is to have her home for the long term he will need that lift big time!
Also I have it from the horses mouth that they have refused all help at this time.He needs to get some help in place NOW ,so that it can be increased as needed.If he gets out of his depth it takes time to organise these things
and she will end up back in the infirmary.I get the impression he thinks that when he gets her home it will somehow all just go away.
Please drive the thirty or so miles to Brechin Gavin and stop me from strangling the stubborn old B.
Of course I will be helping to the best of my ability, but I don’t keep that well myself.It doesn’t help that no-one seems to listen to me.My background is in nursing and social care when I worked,( but am now retired due to ill health),so I know what I am about.
I feel I am going to have to go over his head on this one ,I don’t want to fall out at a time like this ,but he must listen to reason.He will be 82 soon and has sciatica.He cannot be caring for Mum 24/7 without at least the potential for help in place.(Besides me)
They are talking of exercise classes when she gets home and dancing at their Diamond Wedding in October.She is on a zimmer to go to the toilet and can’t get up from the chair without assistance at the moment.I know we have to be hopeful( that it is not just weeks) and they have some decent amount of quality time left, but we must be realistic as well.
I don’t want to frighten them with the stark reality of what this beast can do as it will become apparent soon enough.
What do you or anyone else reading this advise I do ?(besides strangling Dad which wouldn’t help much for sure)
ScottsMum.June 15, 2010 at 6:10 pm #39062gavinModerator
Welcome to the site, although I am sorry that you had to join us all. But I am glad that you joined as you are right, you will find a ton of support from us all and find friendship as well.
As Marion has said to you, I am from Dundee, born and bred and still live here. My dad was dignosed in the summer of 2008 at Ninewells and his DX was inoperable. His specialist was Mr Iain Tait. Is that who is treating your mum? My dad also had the metal stent inserted and this helped a lot in relieving the jaundice and everything that goes with that. It was also Mr Tait that my dad saw on a 3 month basis.
Was your mum offered the services of a Macmillan Nurse? She should have been and I have nothing but good things to say about the work that Mac nurses do. I think the Mac nurse would be able to assist you in getting a stairlift organised for your mum. My dad also had to go to the hospital up in Brechin for a scan once and I know that Mr Tait also sees patients there as well as in Dundee at Ninewells.
Marion is right when she talks about being overwhelmed when given the diagnosis of CC. I can still remember sitting there with my dad and hearing from Mr Tait that dads CC was inoperable. Felt like I’d just been hit with a cricket bat and I was stunned. You are doing the right thing here in reaching out and looking for information and I came here back in 2008 after my dad was diagnosed.
I know that you will have a load of questions, so please feel free to ask them all and I know that someone will be able to help. And you are right in that it is good to get your feelings out and vent if need be. So keep coming back here as I know that it will help you.
And for those of you who don’t know where Brechin is, probably most of you, it is just 30 miles or so up the road from me! So know we are neighbours ScottsMum!!!
My best wishes to you and your mum,
GavinJune 15, 2010 at 2:14 am #39061marionsModerator
Yes, these stents can be difficult to place. I am happy to hear that your Mum feels better now. No one can predict the progression of this cancer. There is still plenty of time to go about life in a normal way. I hope that she can come home real soon. Kudos to you for being such a great daughter.
MarionJune 15, 2010 at 2:02 am #39060
Hello Marion and thanks,
They did have a percutaneous drain in Mum for about a week,but luckily on a fourth attempt they got the metal stent in using the side route.Now she does not have to cope with the bile bag,things will be better and life will appear more normal as she does not have the visual reminder of her cancer there at all times.Bless her heart,she will feel so scared just now till she adjusts to the diagnosis.
ScottsMumJune 15, 2010 at 1:26 am #39059marionsModerator
Hello ScottsMum….and welcome to our site. You are right in that you will find tons of support and friends here. By the way, our Gavin also is from Dundee and I am sure that he will post real soon.
The percutanous drain should make your Mom feel lot’s better and she should be gaining some strengths by eating calorie-rich foods assuming; she is able to digest it.
I think that most of us are overwhelmed when given the diagnoses of CC. You are not alone. We wish for no one having to deal with this cancer. However, disease progression varies from person to person and is something we adjust to as time goes on. Unforeseen strengths and determination seem to evolve from the patients and caregiver alike. You will be no different.
I am sending all my best wishes your way,
MarionJune 15, 2010 at 12:54 am #3661
I am new to the forum and my Mum has recently been DX at Ninewells hospital in Dundee Scotland.It took one month of tests and four procedures before they managed to fit an internal metal stent in her duct to relieve jaundice.They had to make a hole in her side (percutaneous).
She has been returned for palliative care at the local hospital,and she and my Dad have been told that it is terminal.I used to nurse so I had guessed as much ,due to her symptoms and research on the internet.
She is too weak at the moment to manage the stairs at home,but we are to try to get a stairlift fitted ASAP and hopefully get her home in the near future.
I don’t have good health myself,with CFS/Fibromyalgia and Dad is nearly 82 now ,so we will probably need a lot of help down the line.Luckily I stay nearby,but I feel that we are probably in for the ride of our lives,and not in a good way if she does get home.Just cannot imagine her staying for weeks to months in the Infirmary ,good as they are.
My folks are such a close couple and will be married 60 years this year.
I realize she has had a full and happy life up to this illness,and many younger people are cheated with this Cancer,but she is still my Mum,and I would do anything to spare her from any suffering.
I know I will find friends and support on this forum as I have for my own health problems on the FMS/UK forums in the past,it is good to get your feelings and worries out.
I will post again soon.
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