Don't know what to do

[Whiskas]

Hi I 'm not exactly new to TP but this is the first thread I've started, I don't post much but read everything and have gained a lot of strength from knowing there are other people out there.

My 89 year old mother lives with me I am her full time carer. She has dementia, what kind who knows as she doesn't go to the Dr unless forced which leads me to my problem. She has been suffering from what she thought were piles for about 2 years. She has a homeopath who has been 'treating' her but with no noticeable effect and as they seemed to be getting increasingly uncomfortable I made an appointment for her to see the practice nurse. I didn't tell her just 'called in' on the way to the day centre. Nurse took one look at the 'piles' and immediately called the doctor who was suddenly talking about possible cancer. We saw the consultant on Tuesday who wants Mum to have a biopsy taken next Thursday. Mum found the examination the consultant gave her extremely painful and is refusing to have anything else done as she say she is sure she doesn't have cancer and anyway doesn't need to know.

Now I obviously don't want her to have something she doesn't want to have but I do need to know one way or the other. My Dad (also with dementia) died from bowel cancer nearly 2 years ago and I nursed him at home with the support of district nurses Marie Curie nurses etc. I don't want to put Mum through anything but I 'm not sure of the support I would get if there is no diagnosis. I'm trying to see the practice nurse again to see what the implications are but have to wait until 2.30 to ring in for an emergency appointment this afternoon otherwise it will be Tuesday morning.

I really feel I'm already running on empty if you see what I mean. I suffer from depression and every time I seem to be on the up something else comes along and knocks me down again. I'm having counselling which is really helpful but I just need a bit of extra TP type help at the moment. Just getting this down on virtual paper has helped so thanks for 'listening'.
Cathyxx

 

[Tender Face]

Hi Cathy, so sorry to hear the situation you are in. I faced a 'cancer scare' with mum last year - it had never before occurred to me what a bitter irony that a diagnosis of malignancy would probably secure more support in terms of her care??? I'm posting a link to the thread I started back then - some really useful comments - as always - especially around the issue of 'consent' for investigations (you've probably already read it!)

http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=4115

There is such a conflict, isn't there in trying to secure the best possible care when in order to do that, you immediately feel you are going against someone's wishes? - Or can you go against those wishes? Oh, gosh, that's not very helpful at all - other than to illustrate I really do feel for the dilemma you are in ....

I'm sure the practise nurse will be able to help you to some degree, but I think I personally would be hammering on the GP's door ..... (mum's or your own if they are not one and the same).

Will be thinking of you, Love, Karen, x

 

[Grannie G]

Hi Cathy,

If your mum is 89, has dementia and possible cancer, my priority would be to keep her pain free.

I would ask her GP what action could be taken to keep her as comfortable as possible, and avoid painful examinations and surgery.

That`s just my personal opinion, and what I would want for myself.

Take care

 

[Skye]

Dear Cathy

I'm so sorry hat you've got this extra worry.

I can understand your mum not wanting to know -- my mum would have been the same. She felt she had had her life and 'whatever will be will be'.

But I can also understand your own need to know. Again, I'm always in favour of knowing what I'm up against.

I agree with Sylvia, I would be demanding to see the GP, finding what the prognosis is, what palliative care is available, should the cancer be confirmed.

But I would also agree that in your mum's situation invasive and possibly painful treatment would not be appropriate. I would want my mum kept as comfortable and pain-free as possible.

Just my opinion of course. You must follow your own instincts. Whatever you do will be right for you and your mum.

In the meantime, the support and love are here for you, whenever you need it. Let us know how you get on.

Love,

 

[jenniferpa]

Dear Cathy

It seems you have to confront 2 issues here. 1) getting a diagnosis and 2) what to do when you have that diagnosis. Taking the last point first, I also would be inclined to NOT favour any treatment that would be either painful or invasive, although that view is coloured by my own mother's view of such treaments (which sounds exactly like Hazel's mother). The first point seems to be what you are struggling with at the moment though. One would hope that if your mother refuses to have the biopsy that the pair of you wouldn't be allowed to "swing in the wind" as it were, but that's just a hope on my part. I have no idea whether you and your mother can access the palliative care services to which you would be entitled should you have a cancer diagnosis if you don't have such a diagnosis. So in your situation I would be focusing all my efforts on discovering if it is possible to obtain such a diagnosis without the biopsy, or if it is the case that the biopsy is required, how to make that biopsy as pain free as possible.

I know this isn't the same, but my own DH had to have a prostate biopsy and 10 years later still refers to the doctor who performed that biopsy as "Dr Butcher" (which I must point out is not his given name). The point being, I know there are techniques that would have made the procedure he underwent "relatively" pain free, but we didn't know enough at the time to ensure that those procedures were followed.

You will have to be your mother's advocate in this matter. If I were in this situation I would want to know the following: how probable is the cancer diagnosis without a biopsy, what will the biopsy really tell us, and if we choose not to have the biopsy, what help could we expect to recieve. If, for example, a cancer diagnosis is a 90% probability without the biopsy and the biopsy is simply going to raise that probablity to 98% is there any real reason why it should be done? If on the other hand this biopsy might indicate a benign tumour that could be surgically removed, removing your mother's pain, I would feel differently about it.

Best wishes

Jennifer

 

[Whiskas]

Hi Karen Sylvia Hazel and Jennifer thanks so much for your replies. I've calmed down a bit since this morning and reading your replies has helped some more.

I was in a panic as I thought a decision had to be made NOW as the biopsy appointment is on Thursday. I've postponed it until the following Thursday to give myself a bit more time to think and not to loose the option of having it if Mum does agree. The more I've thought about it the less inclined I am to put her through it. I forgot to say there is no way Mum would have an operation for anything, she is quite anti NHS and anyway has a fast and irratic heart beat so I don't think an operation would be considered. I wouldn't put her through all that anyway.

So when I'd stopped wondering why you didn't know that and realised I hadn't said that in my post it made me think what's the point of the biopsy, why am I even considering putting her through it?????? There wont be any treatment other than palliative care even if the diagnosis is cancer and surely pain relief would be available whatever. There is another problem with that though she doesn't take anything for pain!! Dad was easier to manage as with his dementia he had forgotten that he didn't take painkillers and see Doctors so although he only had palliative care at least he took pain relief without a fuss.

I have an appointment with the practice nurse on Tuesday. She is a bit more than an ordinary nurse and can deal with a lot of ailments herself though will bring the Dr in straight away if necessary plus she knows Mum better than the Dr(she is diabetic nurse and Mum has type 2 which we vaguely control by diet) and has been very good at listening to me even though I'm not a patient there. I'm going to ask what the situation would be if she didn't have the biopsy. Also forgot to say I spoke to the consultant yesterday and he said biopsy was the only way to get a diagnosis .

I've got an appointment with my own GP on Tuesday and he has been very supportive over the years so I'm going for a moan!!
I'm sorry I haven't replied to what you each said individually but just can't at the moment. I agree with what you all said and it will help me sort things out.
Thanks, I'll let you know how we get on.

Cathyxx

 

[Tender Face]

So pleased I just checked back into this thread and saw your reply, Cathy, and so pleased you are feeling a little better (from one who wishes she 'had a pound for everytime she panics'!!!!

Well done on securing BOTH appointments ...... and the actions and decisions you've taken ..... that's a huge effort and achievement for anyone under so much stress and prone to depression. Well done!!!!!

Love, Karen, x

PS: By the way, hope no-one feels under pressure on TP to ever 'reply individually' .... sometimes it's nice when it happens, but last thing we all need is something else to think about!!!!!!

 

[Cate]

I agree with you, it’s so difficult when you feel you are under pressure to make a decision.

Mum recently had a heart attack, which caused fluid on her lungs. The heart attack was caused, they believe by an internal bleed. Her haemoglobin count was 5. normal range about 11 so we were told.

We were then faced with the question did we want investigations into the possible cause of the bleed. The only way to do this was a camera down her throat, and she would have to be awake. At the time of the heart attack, we were asked about DNR, which was a major decision.

If they did find the bleed, then what. Apparently they would be reluctant to operate (even if they could) because of her heart, So at 89 we thought what’s the point of putting her through that, she would have been traumatised. It was a total nightmare when she needed 4 units of blood, my brother and I had to stay with her the whole time because she would have pulled out the drip, she was convinced that there was nothing wrong with her, she was just there so they could carry out experiments on her, poor love, it was dreadful for her, she was so very afraid.

She has recovered well for now, and is back at the NH. We do feel like we are waiting for a time bomb to go off again, but we would rather that than put mum through any invasive procedures. She is quite well considering, and is not in any pain.

I hope all goes well for you Cathy, I really do feel like I have walked a mile in your shoes, and really do feel for you.

Best wishes

Cate

 

[Skye]

Hi Cathy

So glad you're feeling better. Well done for rearranging the appointment to give yourself time.

One question worth asking is whether you would have the support of MacMillan nurses without a diagnosis. They are excellent, and would be supportive of both you and your mum. They would also be able to suggest ways of keeping her pain-free, as she won't take painkillers

Karen's right, don't worry about replying individually. We're just trying to support, not put you under added pressure!

Let us know how it goes.

Love,

 

[Margarita]

I must say I do admire your courage & support that you are giving your mother

after nursing your father

My Dad (also with dementia) died from bowel cancer nearly 2 years ago and I nursed him at home with the support of district nurses Marie Curie nurses etc.

I would never of thought that piles , could be associated with cancer

Nurse took one look at the 'piles' and immediately called the doctor who was suddenly talking about possible cancer.

Its going to be one big challenge for you seeing your mother in pain & your mother not wanting to take any pain killers , I am sure the Marie Curie nurses can advice you on that . I also hope you have a good care packet set up xx

 

[Amy]

Hiya Cathy,
Pleased it helped to talk on here this morning - TP really is such a fantastic place.

Margarita - i think the thing is that they were not piles, not that piles can be associated with cancer - thats what I understood anyway. Dont want everyone who has piles starting to worry!!!

Cate pleased to hear that your mum is continuing to do well.

Love Helen

 

[Whiskas]

Thanks so much everybody who has replied it's making such a difference!! I've read so many helpful and supportive posts for other people and thought you were all wonderful and now you are doing it for me, I can't thank you enough.

Mum has 2 days a week at the day centre which is very near so I take her down in the wheel chair rather than wait for transport. Since the end of April I have been having 3 hours respite on a Tuesday and Thursday morning. This is in place until I can get direct payments set up which I have been waiting for since before Christmas but that's another story for another thread!! She used to have 6 weeks repite a year but after being pushed over by one of the residents who couldn't help it, she wont go back. Mum's memory is weird, she remembers some things amazing well, some amazingly wrong and some things not at all!! Unfortunately she remembers being pushed over.

My sister lives in the north of Scotland so isn't handy for everyday stuff but she comes when she can. She was here to help when Dad was ill so I wasn't toally on my own then and I'm sure she will help with Mum too.

After yet another trip to the toilet Mum has just asked me if this is happening to her because she has done something wrong......... couldn't you just cry for her.

Thanks again I feel so much better than I did this morning.
Cathyxx

 

[Margarita]

You may know of this link , but thought it may be of help as it does go in about being diagnosis , not needing a biopsy ( click diagnosis )

Just thinking of less worry for your mother & yourself ( about biopsy)

http://www.beatingbowelcancer.org/medical/advice.htm

 

[Whiskas]

Thanks for the link Margarita. I had wondered about a CT scan as that was how my Dad was diagnosed but his cancer was further up the bowel. I think if Mum had let the Dr finish his examination he would have been able to give a more accurate diagnosis but she just found it really painful. He said there may be a cancer but would need the biopsy to be sure. I haven't given up yet there may be a way round it. I'll ask about CT scan and see what they say.
Cathyxx

 

[Tender Face]

Cathy, this is not to put you under any pressure to ask you post publicly about what may have transpired today with your appointments ..... but to let you know that when people say 'Will be thinking about you on Tuesday' .... they have done exactly that .......

I hope you have found some comfort and direction today, as well as support for yourself. Post when and if you need to.......

Much love, Karen, x

 

[Whiskas]

Thanks Karen I have been intending to post but things kept happening today and this is the first chance I've had!!

Saw my GP this morning who was very supportive and kind and I can go back anytime which I am sure I will be doing.

Then I saw the practice nurse at Mum's surgery and she was really helpful too. She arranged for the district nurse to come and see Mum, (nurse arrived at 4.30) We have to do a continence chart to see if she is eligible for pads to be supplied. She is sort of semi incontinent if there is such a thing but it costs us a fortune!! Mum will also be supplied with a cushion which should make sitting easier.
The practice nurse had a word with the Doctor after I had left and she rang me to let me know what was said. Apparantly some bowel cancers run in families and with 2 parents with bowel problems there is concern for my sister and me. So I have arranged an appointment for Mum and I to see the Dr on Monday afternoon to discuss this. Mum may agree to tests for our sake but probably not and why should she, it will still hurt!! I'm not as worried now as there does still seem to be help out there if we should need it. There is also a possibility of a blood test which could give us a diagnosis but we need to talk to the Dr about that.

So in once sense we are no nearer a diagnosis but I feel a lot better about things.
They seem to appreciate my situation and are prepared to help as much as they can and I feel I've done what I can.

So I expect Monday's appointment to just confirm that they will treat any symptoms as they come up (if Mum will let them!!) and that we won't be going for the biopsy.
I should have taken Mum today really but she is so reluctant to visit the surgery and I wanted to talk without worrying that I was upsetting her. She is in total denial about even the possibility of cancer so that's probably the best place to be!!

I've rambled a bit sorry, but I feel better for doing it so thanks for 'listening'
Cathyxx

 

[Grannie G]

Don`t apologise for rambling Cathy, especially if you feel better for doing so.

It sounds as if things are under control, which must make you feel better. The worries are still there, but at least you are getting the support you need.

That`s all anyone can ask for in these situations, isn`t it.

Take care,

Love xx

 

[Whiskas]

It sounds as if things are under control, which must make you feel better. The worries are still there, but at least you are getting the support you need.

Thanks Sylvia that's just how I feel. Hope you will be feeling that soon too.

Cathyxx

 

[Skye]

Cathy, well done for getting things organised so quickly. It sounds as if you're going to have a good support system, which certainly makes life easier.

I hope things don't look too black for you and your sister, it's just an added worry at the moment, isn't it. Hopefully the GP will be able to reassure you.

Keep us posted if you can, we're all wishing you and your mum well.

Love,

 

[Cate]

Hi Cathy

You have done an amazing job getting things sorted so quickly.

Fingers crossed everything is OK for you and your sister.

Best wishes, and keep in touch

Cate