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.
July 29, 2010 at 10:52 am #39078
Sorry to hear that your mum is having yet another issue to deal with. As Marion and Kathy have said, stents both etal and plastic can get clogged and cause infections. Hopefully if it is an infection then the antibiotics will do the job and this will clear up, and if there are clogging issues then these can also be dealt with.
Please let us know how your mum gets on with this and I hope that she is feeling a bit better today.
Best wishes to you and your mum,
GavinJuly 29, 2010 at 9:29 am #39077kathybMember
Metal stents can become clogged/infected. Mine did within 5 months. They were able to unclog it pretty easily and I had a shorter recovery time than my other planned plastic stent changes.
I think my “total bilirubin” lab work was the main indication it was blocking (which showed the bile was in my blood stream) but I was also very sick.
KathyJuly 29, 2010 at 4:56 am #39076marionsModerator
ScottsMum…. From what we have seen on this board stents can become infected however, a blood culture will determine the exact cause of the infection. I am wishing for your Mom to respond to the antibiotics and for the smile on her face to return tomorrow.
All my best wishes are coming your way,
MarionJuly 29, 2010 at 12:44 am #39075
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.July 23, 2010 at 2:06 am #39074
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.July 21, 2010 at 10:12 pm #39073
Thank you for the update on your mum and I am very sorry to hear that she is going through such a tough time right now. How is your mum doing today? And how did your metting with your mums doctors go today? Have the doctors talked about the possibility of trying different anti-nausea meds? I saw what my dad went through with his vomitting and I so hope that your mums medical team can get a grip on this and deal with it.
I know you say that your mum can’t take the Warferin tablets due to vomitting them back up, but would they be able to give them or some other type of blood thinners by injection? I know when my mum was in the hospital she was getting injections to help with her blood clots.
I know how hard this is for you to deal with and watch as I went through it with my dad. So please know that I am thinking of you and keep coming back here.
My best wishes to you, your mum and your dad,
GavinJuly 21, 2010 at 12:34 am #39072
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.
ScottsMumJuly 18, 2010 at 10:30 pm #39071
I am very sorry to here what your mum is going through right now and I know how hard this is for you to deal with. And you are right in that your mum having been moved to Stracathro will be so much easier for you and your dad when it comes to visiting. And I do understand your concerns about your mum being treated in the stroke ward at Stracathro and how they might not have the experience in dealing with CC patients. My dads specialist when he was being treated at Ninewells was Iain Tait, and I know that he also treats patients and runs clinics up at Stracathro. Perhaps it may be worth contacting him to see if he can see your mum up at Stracathro? Here is a link with his contact details.
As to your mums nausea, has she been given anything to deal with this as there are lots of meds that can be used here. My dad went through a range of meds and combinations of these meds when he had nausea troubles. Some worked better than others and he was eventually put on a syringe driver to give him a constant dose of medication over a 24 hour period.
I hope that the warferin works for your mum and her blood clots. My mum was on Warferin for 6 months and they helped a lot with her blood clots. I know that this is a trying time for you and your family, and we know what you are going through here. Please feel free to come back here as much as you want to and we will all be here for you.
GavinJuly 18, 2010 at 9:57 pm #39070
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.
ScottsMumJune 25, 2010 at 2:18 am #39069
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.
ScottsMumJune 23, 2010 at 11:37 am #39068lalupesSpectator
This is such a hard time for you, ScottsMum. I’m thinking of you & sending my very best wishes.
JuliaJune 22, 2010 at 1:32 am #39067
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.June 17, 2010 at 7:31 pm #39066devoncatSpectator
I too have a “difficult” dad and can only imagine what you must be going through. I am the patient in my situation and we always try to talk about what is happening and what it means. It was very difficult at the start, but now we can talk about most things (even if at least one of us still cries).
I am an American and live in Sweden (though I was first diagnosed and had surgery in Scotland…lived there 7 years) and I was immediately teamed up with a psychologist. My husband and I have both joint and individual sessions and my wonderful psychologist will even include my parents when they visit. We meet sometimes every 2 weeks, sometimes every 6 weeks depending on our needs. This has been one of the most helpful things in my cancer journey. Perhaps you could talk to either the Mac nurses or the family gp to organise something like this for both your mom and dad and even you.
Be careful about remembering to take time for yourself and to deal with your feelings and emotions. You cant kick your dad in the pants, but you can tell him that he is making things more difficult for everyone. Perhaps he just needs some help coming to terms with reality.
KrisJune 17, 2010 at 6:59 pm #39065lainySpectator
Dear ScottsMum, I am thinking you are going to have to pull rank on your Dad now. I know how hard it is for me at 70 taking care of Teddy at 78. You are so right about preparing for what you know will be. It will make things easier on your Mum and you. You do have a trump card if you want to play it
I don’t know your housing situation but you could perhaps tell Dad that you are moving Mum to your house and he will have to stay at their house so that you have the freedom there to do what needs to be done with Mum. Another suggestion is for you to have a talk with the doctor with Dad in attendance. I know its hard to over ride a parent at anytime but if you do, this is the time. Maybe he doesn’t want to acknowledge anything as in his mind at 82 he feels, well, if she gets sick, who will take care of me. Those are my feeble opinions. Once you can get him to cooperate your life will be much easier. Please keep us posted, we care.June 17, 2010 at 6:30 pm #39064
Yes I know how frustrating it can get sometimes being the carer. I am my mums carer and have been since 2003, she has COPD and was also my dads carer during his battle with CC. I know it’s not easy sometimes, especially if someone doesn’t want to discuss the situation. Have you been able to speak with your dad about your mum since Tuesday? And I agree with you that it would be good now to get the ball rolling regarding future care needs for your mum.
I know I mentioned it before, but the services of a Macmillan nurse would I think be a big help to you all as they do seem to carry a lot of clout when it comes to getting things done in a hurry. My dads Mac nurse was excellent and did an amazing job for dad. She used to come visit dad every few weeks and would come round the same day if dad needed to see her. She was also great at just talking with dad and all of us about everything and anything really. If your mum was not offered their services, then your mums GP would be able to refer her to Macmillan straight away.
Yes you are right that it was Stracathro that dad had a scan at. And I am happy to hear that they have a Macmillan day care centre there. They have a Mac day care centre in one of the hospitals here in Dundee and dad used to go twice a week, and he absolutely loved it there! Perhaps that is also something that your mum would like? I took my dad up the first time to see if he would like it, nothing ventured nothing gained and all that, and he loved it from the start! They take great care of the patients there and have lots of activities such as crafts, quizes, music etc, and at the Dundee centre they all got fed very well indeed! And if your mum was to need transport to get there then they would come and pick her up. My dad spent many happy days there indeed.
You are right in that strangling Dad will not help! I’m not too sure what to say really that would help as I never went through the denial with my mum and dad. They seemed to accept what dad had and what the doctors were going to do to deal with it. Perhaps others who have been through this type of situation will have better advice than I. Something that may help you with this is talking to a Macmillan nurse straight away. I called them twice on this number 0808 808 00 00 regarding a couple of issue about my dad and they were a great help. Maybe that is something that would help you and how to handle this with your dad?
And keep coming back here, as I know how much it helped me to come here and I am sure that it will help you as well. You are not alone in this.
My best wishes to you, your mum and your dad,
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