Waiting for results

FionainScotland said:

Still waiting
Hi Sue, thanks so much for your replies. I am just about to go in and see her for evening visiting. I expect she will ask for morphine again this evening. I am wondering if Mum should ask to see her CT scans (and if they let you). Again, don't want her Dr to feel she is annoying, but if it was me I would probably wish to know all. She likes to know, and makes notes of all her symptoms...makes her feel a bit in control at least. I will keep this updated, I can talk to friends but unless someone has direct experience it is hard and I don't want to burden people with worries. Your Mum seems to have had very quick treatment, and I know my Mum is actually hoping for surgery, as I know she will think the worst if they say they don't want to operate.
Thanks Gxx

FionainScotland said:

still waiting
Thank you so much Carolyn.

Ok, so it's all a bit of a blur, but I am fairly sure it was the 28th December I took her in. It is now the 8th of January and still no results (and they said not this weekend). I have no idea why this would be. New hospital, the pathology lab is in the hospital. I am beginning to think almost of conspiracy theories. How can they leave someone waiting like that??

She is actually unwell, IN the hospital and showing all signs of being unwell, not like she is an outpatient who is well and waiting for results. So far various Drs have said words like tumour, chemo, radiotherapy and surgery or maybe not. All without even a result. When I said to one of the nurses she was clearly too unwell to go home and wait, and that we waited for a biopsy with much worry and chance it might be cancer, she said 'yes in all likelihood it is'.

Worst part is my Mum praises the NHS so much, but it is easy to see how it falls down. It's an (sometimes very, disastrously) imperfect system for all, rather than a perfect system for a some. But right now, I'd rather have the chance to pay whatever and have better continuity (always a new nurse and she still doesn't know which Dr assigned to her if any, as they say they wait for results before that). It scares me so much. what if this represents how seriously they take her care and how hard they will work for her to be better?

Going by what I've seen so far, I wish she could go somewhere else, for instance the one Sue mentioned above. But She is stuck there and I know would be completely stressed by any move, plus the accommodation and moving away would be impossible.

She wanted an op asap, and now she thinks they may not be wanting or planning to operate at all. It is pressing on her small bowel as it is (she says they said that from the scan - as well as pushing her aorta to the side), and that is probably what causing the toilet probs and some pain too.

I want to start trying to help, and of course pray it is (by a miracle) something benign, but if not, I want to read how to help, and read about survivors and try to gather as much hope for her as possible. I don't know how she stays so calm, when she knows she is unwell and these days surely might be important.

Thank you so much for your replies, I will keep coming back here. Really praying for my Mum, for the other Moms/women/families on here and really find it informative and comforting to not feel so alone.
Gx

FionainScotland said:

again, waiting for results, not happy
So, a further 5 days or so? She had a further 3 biopsies (she hated it, it is not nice) on Tuesday 10 January. Then she was discharged on Thursday 12 January. Today it's Sat 14th. She was not well enough to be discharged. She needed a wheelchair to my car. She was told these results would be quicker, but up to a WEEK. That will make it about 20 days since she first went in (and that is if the resulots come by this Weds).

However...she has no appetite and today she called me into the lounge to say 'I am not well at all, whatever it is I don't have long, it's clearly serious'. She feels nauseous and lightheaded. She looks grey and has black circles under her eyes. She asked for a sick bowl but when I said I needed ot call the hospital, she says 'what can they do?'

My brother and I spent about an hour 'debating' with her (and trying to ourselves stay calm) that we need to say to the hospital that she needs her results. I said to her 'Mum, there are treatments, you you might feel much much better after one round of chemotherapy or surgery'. But she just shrugged and said 'yeah, chemo', all implying she bwlieves she is 'not well at all'. she of course did not communicate this to the Drs, or say 'no, I insist'. She should have argued her case (she does not want me to, it ios killing me and I even had to tell her today it is a bit selfish, I feel bad for sayng such things but she must know how painful this is for otehrs - I mean I can already guess we will have to call an ambulance or, as she will insist, I will have ot take her back in if she starts to have severe sickness or diarrhoea again).

We got her 'agreement'..almost, thay I could call the hospital. The Dr in charge of her case so far is not on at weekends, but there is another one who has seen her on one of his rounds (he is only about 22 and a very, very young one at that, appears more like 16, and I don't say this is necessarily a bad thing, but I did find he came across as inexperienced and not seeing the big picture. He said with a big smile he'd call pathology agina, and last thing they wanted was her to come back in if they discharged her...but the call made no diofference, we still waited, and yes, she was discharged). I called 7 hours ago, and they said he would call back, but he didn't. So I called again, and again he was not around, so they said he call back (but that if he didn't, I am free to call back in a few hours). I explained all (again, again) to a nurse who knew nothing. I said 'please, she needs a diagnosis, if anything for some hope. She has waited already so long.

Her husband (my dad) has moved into the house next door which they also own and where my grandparents used to stay(and they are still not speaking which is understandable - longer story not for now). It is a dire situation, and my energy is so low but I'm trying to do what I can (just the washing, tidying the things she tells me, she tried to look through some paperwork too today, trying to get some affairs in order).

I think I will just say to the very young and not in charge of her case Dr that he might think I am exaggerating as a caring relative, but that I believe my Mum is not going to be around much longer. Does the hospital really want that to be the case without her even having a diagnosis?

Is that unfair of me, is this all weird or 'just what can happen' (which is what the hospital says - that 'yeah, it can take up to 2 weeks, nod nod'. And 'yes, in all likelihood it's cancer'. I think WE KNOW it's a cancer, but please, can she have some treatment, please???

Normally, she would be beginning a divorce, but she can't, and has no energy. He is next door and might ask to come back to get stuff. I would hate that, as would my brother.

As the day went on, her nausea receded, and when I was trying to tell her that there are many treatmeents and years survived for many people, she talked about whether she might get other opinions (when and if she ever gets a result/diagnosis). I said yes, of course, this is the thing to do.

Just awful waiting.

FionainScotland said:

Thanks very much Sue
The Dr at the hospital never called back. I called twice, once at 2pm and later at about 6pm.

Yeah, I feel like screaming at them :-o :-0 , but I don't even know which ones to direct such frustration at (never even met the supposed one in charge). I said to my Mum, I have had more awkward and probing and demanding questions asked to me as a high school teacher than we are asking of the Drs. I honestly need to speak to them alone and be assertive as I learned to be, had to be, when dealing with so many parents and hundreds of teenagers a day.

One of the nurses suggested NHS 24 (for anti-nausea medicine, this nausea was the main problem this morning and lightheadedness) and so I called, and also passed the phone to Mum. The lady nurse there was very helpful but she said she wanted a Dr to come and look over my Mum and that he or she would be able then to leave nausea meds. Well, I said 'my Mum won't want a fuss made, she is wondering if I can go and collect anything from the hospital' but the nurse said that there are plenty of Drs on call for all hours for just this purpose. Anyway, we agreed a Dr would call back and speak to Mum. After an hour or so one did but he was very brief and did not wish to come out at all ;-0 and said that he would arrange for anti-nausea medicines to be left at the A and E of the local hospital. So, at 9pm this eve, I was to go in. But...got to the bottom of the road and (it's Scotland...;-) freezing blanket fog and can't see a thing, no further ahead than one white line on the road. Called Mum and explained, she said come back. Took 15 mins to find a turning point. I could have made it eventually, at 20mph, but frankly it would turn into a full disaster if I break down or get stuck. So, guess I go first thing tomorrow instead, fog or no fog.

I hope tomorrow is a better day. So far, there's no reason to hope that the results would be ready by Monday, going by what we've experienced so far. I am going to call the hospital again tomorrow. I know the results won't be there, or the Dr in charge of her case, but I will also call on Monday. I will be explicit on Monday, if the results are not ready. If she is not urgent, what is?

My Mum has empty records, the nurse was even surprised at the hospital. She never goes for tests or checks. It's commendable to be self-sufficient and to not use resources, but to be ill for long, or have symptoms and still now be reluctant to 'admit' or ask for anything better, it's very, very hard, for us to see and to help.

Selfishly, I need my Mum here for a while longer yet. I am trying to conserve energy for what I hoped would be a 'fight' and a process which involved treatment. I need her to be on board and to fight to stay here. She even said if these results were inconclusive she would not get any more biopsies (I can only pray this is said as an exaggerated response - it sounds an awful procedure but she must surely have a diagnosis). Thank you so much Sue for all your replies, in fact, this board is the only place that I can 'speak to', crazy as it sounds. So far, she has not wanted to tell any of her friends (partly due to the sudden situation with her husband which any joint friends will be surprised about and will probably ask questions which right now she has no energy to answer). Luckily she has a good relation with her sister, so at least my Aunt knows.

Still reading all the other posts on here, and happy to see the positivity of many and all the stories of successful remissions. And I'm now thinking each day of all those going through similar battles. xx

FionainScotland said:

Thank Liz, I will ask her
She is is bed right now, but I'll ask her tomorrow, and also hopefully the Drs. I am not sure what this test is or means, but see it in a lot of the discussion here. I'll go and google it now.

Finally got her anti-nausea medicine (Domipidone or something...sp?), collected from local hospital. She is going to get the GP to come out tomorrow and see her to get mor eof her other medicines (morphine tabs and syrup, ibuprofen etc etc). I want to call hospital in morning too, to speak to the Dr in charge and say she needs her results. Fingers crossed these are ready, finally, and whatever it is, they give her some hope, so far, they not giving her anything to look forward to, no rousing speeches about 'well, we have treatements for most things these days, and whatever it is, we will try to help...'. No reassurance at all, nor to any of her family. Just told 'yes, it's likely cancer'.

Fingers and toes crossed. Just want her to feel a bit better soon.

Thanks for reading and replying Liz, you are very kind.