Decisions around surgical procedures

[Palerider]

My mother has never been referred to a gastro team. She had anaemia which was unexplained. She was referred to haematology. Haematology decided that the best course of action would be to give her a CT scan and put her on iron tablets. That happened in April. We heard nothing thereafter. Mum's iron levels are normal now. The recent phone call was from haematology again, only now reporting the results of the CT scan - showing the "thickening" on the stomach wall. Mum is a little brighter in this current phase, a little happier and more physically able, going again for some walks with her rollator. She has many other health issues apart from the anaemia such as a leaky heart valve, irregular heartbeat, skin problems, CKD, apart from the increasing dementia. I thought I had made a sensible decision after some explaining to her yesterday. What is the point in knowing you have cancer if no-one is going to treat it? She will be 91 this year. I do worry incessantly about my decisions but I cannot really see another option which seems sensible. So what is the point in going for the gastroscopy, I ask myself, if you either learn you have cancer and have to live with it or you learn you don't have cancer. In my Mum's mind now, she doesn't have it and her health seems "fine". I was thinking that if she had some stomach symptoms(which she does not have at all now) she could re-enter the NHS system for a gastroscopy to try to find out. What do you think about my thinking?
PS- I don't think any referral to a gastroenterologist has been made. If we had accepted to gastroscpy I believe this would have been the next course of action and the rferral would have been sent on to this department.

Right this is all beginning to make some sense finally! You need to go back and ask the consultant haemotologist what the plan is for your mum. This is the person who you need to speak to. You need to get their name and call their secretary and ask for an update appointment as her main advocate and carer

 

[Muttimuggle]

Right this is all beginning to make some sense finally! You need to go back and ask the consultant haemotologist what the plan is for your mum. This is the person who you need to speak to. You need to get their name and call their secretary and ask for an update appointment as her main advocate and carer

The nurse yesterday had this senior member with him yesterday and referred all this to him. Both were in agreement with what was spoken about. He actually admitted that he had to go through this process of asking even though he was trying hard not to show he agreed with me.

 

[Palerider]

The nurse yesterday had this senior member with him yesterday and referred all this to him. Both were in agreement with what was spoken about. He actually admitted that he had to go through this process of asking even though he was trying hard not to show he agreed with me.

No I am afraid you will have to grow a metal jacket. You need to speak to the person who is overseeing this all and that now it seems is the consultant haemotologist -I know its hard and it is difficult to overcome but you need to speak to this specific consultant and ask them your same questions

 

[Muttimuggle]

No I am afraid you will have to grow a metal jacket. You need to speak to the person who is overseeing this all and that now it seems is the consultant haemotologist -I know its hard and it is difficult to overcome but you need to speak to this specific consultant and ask them your same questions

The senoir haematologist appeared to be present and witnessed what was said and did not give any no further analysis of the thickening in the stomach wall was available to be given. He is reporting the results from a scan. Nothing more can be known without a gastroscopy. PS I am not afraid to speak to anyone in the medical profession. I am thinking about the consequences of knowing something you can do nothing about anyway.

 

[nitram]

@Muttimuggle

In the past I have succeeded in contacting consultants by finding their secretary's phone number on the hospital web site and asking for a meeting or phone conversation.

 

[canary]

What do you think about my thinking?

I totally agree with your thinking
Sorry, I wrongly assumed (like Palerider) that the gastroscopy had been requested by a gastroenterologist. You need to get back to the person who requested the gastroscopy - in this case the haematologist - to talk about your concerns. I had suggested that the easiest way to do this is to contact his secretary and ask for the consultant to contact you.

 

[Muttimuggle]

I totally agree with your thinking
Sorry, I wrongly assumed (like Palerider) that the gastroscopy had been requested by a gastroenterologist. You need to get back to the person who requested the gastroscopy - in this case the haematologist - to talk about your concerns. I had suggested that the easiest way to do this is to contact his secretary and ask for the consultant to contact you.

Thank you. The nurse had to ask his senior(I am assuming a haemotologist) and come back to me. I am assuming that if the senior haematologist had anything to say which might change things they would have said it. I have had 2 conversations with this nurse within the past 4 days. In the 2nd one I formulated my questions more carefully and stated what I thought. When I came off the phone I felt that I had done the right thing - especially as I have been reassured that if any symptoms arise we could re-enter the NHS system for tests.

 

[Duggies-girl]

I am also in total agreement with your thinking. If your mum has no symptoms and is eating well then why do they need a gastroscopy. My dad had symptoms so it made sense but if he hadn't had symptoms there would have been no point.

I think you have done the right thing, it is what I would have done.

 

[Muttimuggle]

I am also in total agreement with your thinking. If your mum has no symptoms and is eating well then why do they need a gastroscopy. My dad had symptoms so it made sense but if he hadn't had symptoms there would have been no point.

I think you have done the right thing, it is what I would have done.

Thank you for your words. I had a bit of a sleep deprived night chewing this over....thinking maybe I should phone again and ask but then I think I was very thorough with my questions and it would have been immoral of this nurse not to properly address what I was asking ...and in any event he consulted a nearby senior person towards the end and came back with nothing new. Then, I thought - what is the point of finding out you have cancer in your stomach but your stomach was feeling fine and you enjoyed your food when you were 90 going on 91 anyway? Actually I am more concerned in doing the right thing than anything else - so of avoiding unhappiness for my mother(and she is in a fairly happy stage) than how I feel about "keeping my mother alive". Unhappiness and worry are killers anyway! I also worry about any "come back" from my nasty brother who vacates the country for 3 months holiday at a time before critisising stuff that I am doing for Mum. He is away now. I really wish I had a sibling to share this with who actually knew what was going on with Mum and her dementia. Instead he appears to escape out of it. ........But that is probably never going to happen so I must press on and get on.
The other thing I thought about is the fact that my mother has a leaky heart valve. I googled that and that appears to be able to cause anaemia. Also she has chronic kidney disease - that can apparently cause it in old people as can any kind of chronic inflammation - she has a painful curved back that once suffered a fracture after a fairly serious fall.
I know my mother wont be even thinking about it now - which is good. I just always want to do the right thing but the choices are hard. Thank you again. I read over you earlier post again. Thank you also for that.

 

[Muttimuggle]

I am also in total agreement with your thinking. If your mum has no symptoms and is eating well then why do they need a gastroscopy. My dad had symptoms so it made sense but if he hadn't had symptoms there would have been no point.

I think you have done the right thing, it is what I would have done.

Thank you for your words. I had a bit of a sleep deprived night chewing this over....thinking maybe i should phone again and ask but i think I was very thorough with my questions and it would have been immoral of this nurse not to properly address what I was asking ...and in any event he consulted a nearby senior person towards the end and came back with nothing new. Then, I thought - what is the point of finding out you have cancer in your stomach was fine and you enjoyed your food when you were 90 going on 91 anyway? Actually I am more concerned in doing the right thing than anything else - so of avoiding unhappiness for my mother(and she is in a fairly happy stage) than how i feel about "keeping my mother alive". Unhappiness and worry are killers anyway! I also worry about any come back from my nasty brother who vacates the country for 3 months holiday at a time before critisising stuff that I am doing for Mum. He is away now. I really wish I had a sibling to share this with who actually knew what was going on with Mum and her dementia. Instead he appears to escape out of it. ........But that is probably never going to happen so I must press on and get on.
The other thing I thought about is the fact that my mother has a leaky heart valve. I googled that and that appears to be able to cause anaemia. Also she has chronic kidney disease - that can apparently cause it in old people as can any kind of chronic inflammation - she has a painful curved back that once suffered a fracture after a fairly serious fall.
I know my mother wont be even thinking about it now - which is good. I just always want to do the right thing but the choices are hard. Thank you again

 

[canary]

Actually I am more concerned in doing the right thing than anything else - so of avoiding unhappiness for my mother(and she is in a fairly happy stage) than how I feel about "keeping my mother alive"

I completely agree.
Just because something can be done, doesnt necessarily mean that it should be done. It is more important think about the bigger picture - how would she cope? how will this improve quality of life? is it appropriate at this stage of life?

I made the same decision when mum had a stroke and the doctors wanted to do doppler scans and insert stents. I spoke to the consultant and he agreed with me, so it wasnt done.

Im sure you have made the right choice.

 

[Muttimuggle]

I completely agree.
Just because something can be done, doesnt necessarily mean that it should be done. It is more important think about the bigger picture - how would she cope? how will this improve quality of life? is it appropriate at this stage of life?

I made the same decision when mum had a stroke and the doctors wanted to do doppler scans and insert stents. I spoke to the consultant and he agreed with me, so it wasnt done.

Im sure you have made the right choice.

Thank you(I am a "Worrywart"!) Next problem is brewing now over POA. I may post again.

 

[Palerider]

The senoir haematologist appeared to be present and witnessed what was said and did not give any no further analysis of the thickening in the stomach wall was available to be given. He is reporting the results from a scan. Nothing more can be known without a gastroscopy. PS I am not afraid to speak to anyone in the medical profession. I am thinking about the consequences of knowing something you can do nothing about anyway.

Its hard and I can complete;y empathise. Sorry for my delay in responding btw, had a couple of very busy work days. I think knowing nothing more beneficial can be done is a good thing, becuase it gives direction on what now is the most appropriate way forward which is being pain free or having any pain controlled, comfort and maintaining personal dignitiy and making the most of the time we have left without investigations and hospital visits that essentially would be futile. I agree with @canary and @Duggies-girl .

2 years ago my mum had a big deterioration with a very slow heart rate and the doctors mentioned a pacemaker, to which I was horrified given the stage my mum was already at with advancing dementia. Yes a pacemaker would have fixed one issue but not the bigger overall issue, but it would also mean prolonging living with advancing dementia beyond what my mum would naturally live and on that basis it was agreed that although it could be done, it was not now in my mums best interets for it to be done. Yes difficult, but the bigger picture is what matters.

 

[Lawson58]

I can’t help but wonder what your brother suggests you do for your mum if there was an emergency while he is away. Sounds totally unreasonable to me.

I was also wondering what kind of a relationship you have with your mum’s GP. Consultants always report back to the patient’s GP and I can always find out from ours what has been said. Just an interesting thought.

 

[Palerider]

I can’t help but wonder what your brother suggests you do for your mum if there was an emergency while he is away. Sounds totally unreasonable to me.

I was also wondering what kind of a relationship you have with your mum’s GP. Consultants always report back to the patient’s GP and I can always find out from ours what has been said. Just an interesting thought.

That's a very good point. Out of interest because of the state of limbo with my own family I met with mums GP and asked my sister (sadly now passed) to be present as her second LPA over what would happen if mum deteriorated again and it was felt she was end of life. We had a very thorough disussion and agreement over what would happen at that point so that there is a plan in place. People have the wierdest expectations, but in my brothers case he was just interested in picking up any final cheque after mums death. I am not sayng this is what all people do, everyone has there own reason for putting a spanner into the works, but at the end of the day this is about the person affected and no one else or their motives for doing what they do. Someone has to be their advocate and sometimes that can mean a lonely path to walk and in that respect professional opinion can be very helpful

 

[Lawson58]

That's a very good point. Out of interest because of the state of limbo with my own family I met with mums GP and asked my sister (sadly now passed) to be present as her second LPA over what would happen if mum deteriorated again and it was felt she was end of life. We had a very thorough disussion and agreement over what would happen at that point so that there is a plan in place. People have the wierdest expectations, but in my brothers case he was just interested in picking up any final cheque after mums death. I am not sayng this is what all people do, everyone has there own reason for putting a spanner into the works, but at the end of the day this is about the person affected and no one else or their motives for doing what they do. Someone has to be their advocate and sometimes that can mean a lonely path to walk and in that respect professional opinion can be very helpful

We are fortunate too that our GP will always talk to me about OH and I don’t think I have survived these many years without his support. When OH decided to change his will which would have excluded his offspring from any inheritance, our GP wrote a testamentary statement about his capacity to avoid that as an avenue of contest.

Another point is that occasionally, a specialist will ask me if I would like a copy of the report for our own records.

 

[Muttimuggle]

Its hard and I can complete;y empathise. Sorry for my delay in responding btw, had a couple of very busy work days. I think knowing nothing more beneficial can be done is a good thing, becuase it gives direction on what now is the most appropriate way forward which is being pain free or having any pain controlled, comfort and maintaining personal dignitiy and making the most of the time we have left without investigations and hospital visits that essentially would be futile. I agree with @canary and @Duggies-girl .

2 years ago my mum had a big deterioration with a very slow heart rate and the doctors mentioned a pacemaker, to which I was horrified given the stage my mum was already at with advancing dementia. Yes a pacemaker would have fixed one issue but not the bigger overall issue, but it would also mean prolonging living with advancing dementia beyond what my mum would naturally live and on that basis it was agreed that although it could be done, it was not now in my mums best interets for it to be done. Yes difficult, but the bigger picture is what matters.

Thank you Palerider. Apologies for my delay - My husband and i were having a very rare 4 day break not very far away from home.....complete with cares in place for Mum. It was re-assuring to have your understanding for one of my many difficult decisions for Mum. It is, indeed, lonely making these decisions alone particularly when there is only a distant but critical sibling with too much to say sometimes. My next biggest problem is that he is due "home" soon from one of his long, extended holidays. Since he left I also introduced a second care call. Depending on how my mother feels on any one day she might say, "They don't do anything except give me my tablets." ....which, of course my brother might believe and may not easily see the reality. Both my husband and myself think my mother is more settled since introducing the additional care calls. It is all decisions, decisions, decisions for a main carer for a person with dementia.

 

[Muttimuggle]

I can’t help but wonder what your brother suggests you do for your mum if there was an emergency while he is away. Sounds totally unreasonable to me.

I was also wondering what kind of a relationship you have with your mum’s GP. Consultants always report back to the patient’s GP and I can always find out from ours what has been said. Just an interesting thought.

Thank you Lawson58. Yes brother is out of the picture for emergencies much of the time - this included the gas leak she had about a month ago which had to, of course, be dealt with promptly. I dread his return because he is critical and he can convince my mother of anything - such as that she can dose her own tablets.
You sound to have a really good GP. You are lucky. My mother's practice has multiple GPs and she rarely gets the same one. I do communicate with them about many things but they are difficult to get in touch with. I have a different GP practice myself.

 

[Palerider]

Thank you Palerider. Apologies for my delay - My husband and i were having a very rare 4 day break not very far away from home.....complete with cares in place for Mum. It was re-assuring to have your understanding for one of my many difficult decisions for Mum. It is, indeed, lonely making these decisions alone particularly when there is only a distant but critical sibling with too much to say sometimes. My next biggest problem is that he is due "home" soon from one of his long, extended holidays. Since he left I also introduced a second care call. Depending on how my mother feels on any one day she might say, "They don't do anything except give me my tablets." ....which, of course my brother might believe and may not easily see the reality. Both my husband and myself think my mother is more settled since introducing the additional care calls. It is all decisions, decisions, decisions for a main carer for a person with dementia.

I am supposed to have left TP but I could not walk away from this. In the end taking everything you possibly can into consideration there is nothing more to do even if a sibling arrives after all of what has gone before. You have done the only thing you could have done in their absence and by all accounts it is too late to now declare an interest as you say having left knowing this was always an issue. I don't foresee any permissable challenge to what you have tried your best to do and I don't understand why you would qualify some one that has chosen of their own volition not to be present. In the end we have to finally decide on what we choose to do in the absence of any other facts at the time. I think you have to draw a line here and be at peace with what it is you have done to find the truth as best you can. We are not here to justify those who choose to be absent when actually their prescence matterss the most. I think it is most unreasonable for you to now have to reconsider having truly bared your reasoning to its maxinum which clearly if not deleted is a record of that. There is only so much dilemma that can be truly had.

 

[Muttimuggle]

I am supposed to have left TP but I could not walk away from this. In the end taking everything you possibly can into consideration there is nothing more to do even if a sibling arrives after all of what has gone before. You have done the only thing you could have done in their absence and by all accounts it is too late to now declare an interest as you say having left knowing this was always an issue. I don't foresee any permissable challenge to what you have tried your best to do and I don't understand why you would qualify some one that has chosen of their own volition not to be present. In the end we have to finally decide on what we choose to do in the absence of any other facts at the time. I think you have to draw a line here and be at peace with what it is you have done to find the truth as best you can. We are not here to justify those who choose to be absent when actually their prescence matterss the most. I think it is most unreasonable for you to now have to reconsider having truly bared your reasoning to its maxinum which clearly if not deleted is a record of that. There is only so much dilemma that can be truly had.

Thank you. I'll try not to worry.