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gingeroots...how are you doing?

(62 Posts)
Elibean Sat 09-Mar-13 19:08:28

I'm sorry, I looked for your original post but couldn't find it.

Hope the waiting is easier now, and that you get some reassurance soon xx

gingeroots Sat 09-Mar-13 20:53:29

oooh a thread title with my name in it .

I must be important >>>preens<<<

That's nice of you to ask Elibean

I'm a bit up and down ,finding the waiting hard .Not sleeping well .

But not as if I'm the only one ,and many in worse circumstances .

DP thinks they said I'd hear on the Friday coming .
I thought they said 4 or 5 days ,which is more like Wednesday .

And I don't even know what they do ...thinking a phone call if bad news and a letter if good ?

Still Spiral on tonight - that'll test my powers of concentration !

FoodieToo Sat 09-Mar-13 22:01:19

Have been thinking of you too. Hope you get good news soon.

I would definitely be putting in a complaint about that consultant .

gingeroots Sat 09-Mar-13 23:11:58

I've calmed down a little about the consultant .

I didn't like him at all .As I said he was rude to staff and patronising and unhelpful to me .

But I can see that the GP ( as she was clearly referring urgently and making use of a fast track appointment reserved for suspected cancer ) should have mentioned to me that they were investigating the possibility .

I think the consultant was insensitive and unkind ...but I guess he was erring on the side of caution .
I don't know.

Elibean Sun 10-Mar-13 11:46:51

Sounds like sensible thinking to me.

And FWIW, you sound as though you are coping with the waiting as well as anyone can! Good for you.

Have a peaceful Mothers Day smile

PeachyPossum Sun 10-Mar-13 17:13:12

Hi ginger roots, I lurked on your thread but didn't post for a few reasons. Just to let you know I'm thinking of you too. Xx

gingeroots Mon 11-Mar-13 09:04:59

Oh Peachy - just done quick search on your earlier posts and see you have Chrons and dreadful gastric reflux .

Did you have that fundi whatsit op in January ?
Hope you are recovered /getting better ?

I'm hating waiting for my results . I'm trying to hold on until tomorrow - thinking I might get a letter - and will phone hospital I think to see if I can find out when I should hear .

Elibean Mon 11-Mar-13 13:39:06

Poor Ginger, waiting is so horrible.

I would phone. If they don't know yet, fair enough - but if you can avoid five minutes of stressing, so much the better.

gingeroots Mon 11-Mar-13 15:26:12

Oh elibean it's so nice of you to be interested .

It's so hard - I can't talk to anyone in RL about it as what's the point of worrying them when it may turn out to be ok .

So huge relief to discuss on MN smile

Anyway phoned endoscopy unit today to ask for clarification about results .

Receptionist couldn't help but said she'd put me through to consultants secretary - at which point I panicked and said I didn't want to run risk of speaking to consultant .

And then we had a bonding session about how rude the consultant is .

Put through to lovely secretary ( more bonding ) who said she'd ring me when results through - though said she couldn't say what the results are .

She was really lovely - said she had a list of people who she was looking out for results for and that she tried to think of herself in our position .
How nice is that !

gingeroots Tue 12-Mar-13 18:03:38

Oh dear ,no phone call .

And secretary said results take 3/4 working days .
Today is day 4 .

Logically I know that maybe results are delayed or maybe secretary busy /ill / stuck in snow .

But a bit of me is going "well if results bad then she won't tell me they're in because she knows I'll get a phone call anyway " .

I'm sure no news is good news ,but can't help worrying .

Guess I'll ring consultants sec again tomorrow .

PeachyPossum Tue 12-Mar-13 18:26:09

Hi ginger,

Sorry you've had no call today sad waiting for results is horrible when its not such a scary test. I'm glad the secretary is helping you.

I did have the nissen fundoplication at the beginning of feb, although the op didn't go as smoothly as it should have done. It has made a huge difference. I hope that your problems are caused by stricture and this becomes an option for you.

How are your symptoms at the moment?

Will be thinking of you tomorrow x

gingeroots Tue 12-Mar-13 19:22:56

Thank you Peachy .

Really the hospital should have a clear protocol for releasing results so that everyone knows where they stand .

I know it's not that easy ,but they could try ....

I eat really carefully ,tiny pieces ,to avoid choking .

My throat still tightens up - feels like it's going into spasm ,but I think it must be strictures . The consultant said there was narrowing .

Sorry your op had problems - you're very thoughtful not to tell me details smile

gingeroots Wed 13-Mar-13 17:52:06

I spoke to secretary at midday today and she said results still not back ,maybe in tomorrow .

It's been such a relief to have rest of day not on tenterhooks ,wondering if results are in and someone might phone .
IYSWIM .

( think I'm going a teensy bit bonkers )

ssd Wed 13-Mar-13 18:38:00

thinking of you gingeroots, hoping for some good news for you soon xx

gingeroots Wed 13-Mar-13 20:26:58

Thanks ssd .

I think it will be ok ,just that the consultant has put the wind up me and DP .

ssd Wed 13-Mar-13 20:39:13

isn't it awful how these so called professionals just don't think before they open their mouths!!

PeachyPossum Wed 13-Mar-13 21:17:01

Sorry it's another day with no news sad hoping no news is good news for you. What a silly consultant, causing distress like this.

Inaminutenow Wed 13-Mar-13 22:13:50

All the best ginger, hoping you'll have good news soon!

Elibean Thu 14-Mar-13 14:50:59

Aaargh, ginger, still no news? You poor love - hope you get a call today, and good news!

Couldn't get to computer yesterday, but was thinking of you. Generally speaking, the longer you go without news the less likely it is to be bad news - but still, nothing is going to make it better till its better, iyswim.

Am very glad to hear all other medical personnel bonding over consultant's communication dysfunction wink

gingeroots Thu 14-Mar-13 15:29:09

No ,no news .

Consultants secretary told me yesterday that she was off today but would ask colleague to phone me if results in .

Hearing nothing I phoned at 2pm and got answerphone . Left message .

I'm not really sure how much more of this I can take .If only they'd arranged an appointment ,say 2weeks in future .

Then I wouldn't be on tenterhooks every second of the day .

breaking news - phonecall from consultants "special nurse " .

She says to come in next Tuesday for cat scan because consultant will be on holiday when orginal cat scan booked ie week following and "he doesn't want anyone else to be involved in my care " ????

She says technical problems at lab have delayed all results and is adamant ,despite my frequent protestations that it's best to go ahead with scan even though biopsy results not available yet .

She says consultant "very caring " ,kept apologising when I was relating his discussion with me and saying " we're all human ,it must have been a bad day for him " .

She says ( only because I asked her ) I'll get no news on day of cat scan .
Will take a "few more days " to hear any news .
But know she knows how anxious I am she'll try and push for quick results and will phone me on the Thursday .

What to think ?

I'm still sure it's not cancer and that they're being cautious but despite thinking that logically ,I'm beside myself .

gingeroots Thu 14-Mar-13 15:43:48

In my heart I think it's just being caught up in the system - they're being careful and unfortunately that causes stress .

I do understand what the alternative could be .

And I just think I've been unlucky in the way a rushed and probably arrogant by nature ,consultant has spoken to me .

And then there's the DP whose response is anxiety and a deep desire not to discuss it .

Sigh .

Elibean Thu 14-Mar-13 18:56:57

Poor Ginger, what a nightmare combination all those factors are sad

Its quite likely they want the cat scan done in order to a) satisfy the GP's fast tracking request for care and b) because they really are very cautious when anything remotely nasty is a possibility - however remote. I recently had a cystoscopy as I'd had some blood in my urine, even though the consultant said he thought it very unlikely I had bladder cancer: they HAVE to check. He then followed up a totally normal cystoscopy with an MRI of my kidneys and bladder - 'just to dot all the iiiis and cross all the tttts' though again, he almost knew it would be normal. It was.

So you see....good that they're being careful, but also normal that they're being careful. I'm glad they're scanning you fast, so you don't have to wait even longer, at least.

I would try and put the whole lot in a box labelled 'later' until you've had the scan - hard as that may be. xxx

gingeroots Thu 14-Mar-13 20:10:52

That makes a lot of sense Elibean .

Just being thorough .

Shame consultant didn't mention that .

And isn't it a waste of resources to carry out CT scans if not needed ?
And ,... umm ....expose people to Xrays ?

Oh well I'll try and put it to the back of my mind .

Thanks again ,I do see what you're saying .And agree really .smile

ssd Fri 15-Mar-13 09:41:44

I think hospital folks don't realise what the waiting does for some of us, I can worry for Britain and waiting for results almost does me in, sounds like you are the same gingeroots

gingeroots Fri 15-Mar-13 16:14:04

I just can't get it out of my head that the consultant must suspect something .

To book CT scan before biopsy results back .

And then 10 days on when results should be back but supposedly are not ,to bring CT scan forward by a week .

Thorough ? Punitive ?

Elibean Fri 15-Mar-13 17:14:29

I very very much doubt he'd lie about being away the following week (as reason for bringing scan forwards) - bad bedside manner is one thing, blatant dishonesty about results is another, and he wouldn't want to put himself that far into the medical wrong, so to speak! Even if he is a twit with no manners or sensitivity. Think law suits wink

Twosugarsplease Fri 15-Mar-13 17:30:37

Hi ginger I see you are waiting too !
Thankyou for your support in my thread, re: my dp.
Really hope you get some news soon.

gingeroots Fri 15-Mar-13 18:37:38

It's a c**p time isn't it 2sugars ?

But I know my experience is mild compared to yours and many others !

Feel such a wimp for not coping better and I'm boring even myself going on like this .

Eli I don't think he's inventing holidays ,nothing like that .

But to bring forward a scan designed to check if the cancer ( we don't know if I have ) has spread so that he can see it before he goes on holiday ?

But I really think that's enough from me at the moment .

Elibean Fri 15-Mar-13 20:17:39

Nothing of the sort, Ginger - you're perfectly normal being worried, and most of us have been through similar horrid waits and get it completely smile

I suppose, though, because of that crappy communication of his, you don't really know what or why the consultant is doing anything. That's the problem, really. I think he'd want any scans he'd ordered brought forward, for someone on a fast track, wouldn't he?

I just think the really dodgy bit is that he talked about checking for spread etc when he actually hadn't got any biopsy results back or seen anything more conclusive than a 'narrowing'. Lots of ifs and buts in there, either that or he's really not communicating clearly confused

Either way, you are almost certainly not going to get any results over the weekend....so I wish you superhuman strength in putting it all in a box labelled 'later', so you can get some rest and hopefully relax a bit for a day or two! Happy to sit on the lid of said box for you if it helps...

zen1 Fri 15-Mar-13 20:32:33

gingeroots, I have been following your threads and just wanted to say that I completely empathise with you regarding the waiting for results. You must be going out of your mind with worry and as ssd has said, the NHS administration just doesn't take into account how worried patients get about receiving results.

I remember waiting for a phone call from my GP once and was told he would ring me "sometime during the next week" and in the end I had to turn the ringer off on my phone because it got to the stage that I was jumping out of my skin everytime it rang. I even spent long hours out of the house so I didn't have to answer the phone!

As far as them changing the date of your scan is concerned, it could just be that if you were referred under a cancer pathway (and many, many people are who turn out not to have cancer), they have to meet certain targets as far as carrying out tests within certain time frames. If your consultant is away on the date for which the scan was originally scheduled, it is likely that to have rescheduled you for a week later would have 'breached' the targets (that would be a black mark against the Trust) so they have had to fit you in earlier instead.

Also, I don't like your consultants comment that he "doesn't want anyone else to be involved" in your care. You have choices in your treatment and can request a second opinion or even request to be referred to a different hospital if that is your wish.

I am thinking of you.

gingeroots Fri 15-Mar-13 21:29:55

Thank you Elibean and Zen .

Actually I think I'll feel better at the weekend as I wont be waiting for the phone to ring all the time .

Ahh - targets ! Now that has the ring of an explanation . I really think that might explain this odd rescheduling .

I feel so much better for that information .

Thank heavens for MN smile

I have heard of a couple of cases at this hospital where gall bladder ops were farmed out to private hospitals because it was cheaper to bear that cost than for the hospital to pain the fine incurred by exceeding the waiting list time .

Surreal or what ?

gingeroots Fri 15-Mar-13 21:30:50

pain = pay

gingeroots Mon 18-Mar-13 17:04:01

Ok ,just this minute had phone call from the consultants nurse to say that after scan tomorrow there will be appointment at 1pm to see consultant .

She says he will have scan results and biopsy results and will discuss .

She says ( in answer to my question ) that they have the biopsy results but that " it's like a cake and they're not ready yet " .

Saints preserve us ,who does she think she's talking to ? Someone in reception ?

"They're on the system but not available " .

I'm not feeing good about this - but who knows ,maybe it's a little complicated and needs explaining .

gingeroots Mon 18-Mar-13 17:16:09

She also apologised for time scale between scan and appointment and suggested I could pass the time by browsing the local shops in .....Camberwell Green .

Which ,if you don't know the area ,think inner city ,depressing ,busy traffic junction ,with no shops you would want to browse and quite a few broken people wandering around .

>>Thinks to self << maybe consultant is so deeply unpopular that he can only get strange people to work with him .
But maybe she's better in person .

magso Mon 18-Mar-13 19:03:53

I'll be thinking of you. Hope you find something absorbing to do while you wait.

lisad123everybodydancenow Mon 18-Mar-13 19:08:03

Message withdrawn at poster's request.

PeachyPossum Mon 18-Mar-13 20:56:03

Thinking of you tomorrow lovely, and tonight xx

Elibean Tue 19-Mar-13 14:09:11

Thinking of you right now, Ginger, and hoping all is clearer - and good.

Camberwell Green for shopping? shockconfused

I can hear she meant well, but...

gingeroots Tue 19-Mar-13 15:05:18

Thanks for all the kind thoughts .

Glad you understand about Camberwell Green elibean .

And ...yes, it appears to be cancer .

And ,as I'm sure anyone who has been there will know - first appointment seems to raise more questions than answers .

Very small nodule ,hopefully caught early .

Initial reading of scans ( by possibly misjudged consultant who said he was not a radiographer or whatever the specialist is that reads scans ) seem good with no evident spread .

So another endoscopy tomorrow for bigger samples , then wait to hear treatment plan once decided by team .

lisad123everybodydancenow Tue 19-Mar-13 15:38:07

Message withdrawn at poster's request.

Elibean Tue 19-Mar-13 15:44:24

Damn and blast. I'm sorry it wasn't nothing, Ginger, and at the same time very glad it seems small and caught early - in which case, it really should be very treatable.

They seem to be acting fast for you, which is good - the sooner you have an action plan and all the facts, the sooner you will start to be able to come out of the shock and deal with it all, I suspect. Meantime, holding paws (if you want paw holding) for tomorrow's endo: I seem to remember you didn't like the first one, in which case I think you're entitled to ask for whatever anaesthesia you like! I did, when I had an endo, and although consultant 'disapproved' I got my way wink

Lisa is right, stay away from Google if you can - easily said I know - most of the info will be out of date, and not applicable to you personally. xx

PeachyPossum Tue 19-Mar-13 15:56:39

So sorry it wasn't better news ginger x I'm glad the initial reading of te sans appears to show no spread, I hope this is right. Sorry if I missed it but where is the nodule located?

How was the consultant with you today, did he improve on his mannerisms/ seem more supportive? I hope so.

Lots of hand holding here x

gingeroots Tue 19-Mar-13 16:43:10

In my throat peachy .

I've not quite forgiven consultant but he did seem better today ,but old fashioned .

I think to do his job you must have to adopt a protective personae and his is kind of flamboyant ,god like . Suspect he's more human in one to one mtgs ,like today and that he puts on a show in front of a crowd/lower ranks .

I couldn't do his job ,that's for sure .

FancyPuffin Tue 19-Mar-13 16:59:04

So sorry you haven't had good news gingeroots I've been lurking with my fingers crossed for you.

Will continue to cross everything for a positive scan tomorrow.

((((Puffin Hugs))))

Twosugarsplease Tue 19-Mar-13 17:29:07

I'm sorry it wasn't better news today ginger
Hoping you get more positive news after your endo.
Dh and I went to his 'results' appointment today..
As you can imagine the build up and worry, dh comes out and says results are not back yet !!!!!
They will be in touch when they are.
If only they bloody knew what it feels like to be on the recieving end.
Thinking of you ginger.

thekingfisher Tue 19-Mar-13 19:50:51

ginger roots sorry things were not as hoped for. Fingercrossed for your endoscopy tomorrow and remeber to tell them that you don't tolerate them well and they need to give you PLENTY of sedation. perhaps whoever goes in with you can act as your advocate in that capacity I did for my DH, they gave him so much he slept for 4 hours afterwards and i had to wait around for him for ages to take him home - on the plus side he remembered very little of the treatment.

Good luck and strength
xxx

zen1 Tue 19-Mar-13 20:36:03

Very sorry to read this news ginger. Fingers crossed for you that it can be swiftly dealt with and that you have good news after your scan tomorrow. Will be thinking of you,

Walnutcakelover Tue 19-Mar-13 20:46:28

Hi ginger really sorry to hear the news about your diagnosis. Good luck for tomorrow, you will be fine, thinking of you. xxx

Inaminutenow Tue 19-Mar-13 22:14:22

Sorry that it wasn't better news, ginger. Good luck tomorrow!

PeachyPossum Wed 20-Mar-13 06:51:18

Thinking of you today ginger x

My surgeon was a bit like that, really off and curt for a few years, then when we actually had to get more one to one with treatment and stuff he was completely different.

I hope today goes as well as can be xx

Elibean Wed 20-Mar-13 15:36:04

Also thinking of you today, Ginger. Hope it went more easily than the last one, and brings some reassurance and a speedy route to treatment. xx

gingeroots Wed 20-Mar-13 17:29:06

Oh you're all so kind , thank you .

More sedation this time around and I remember nothing .

I've already been referred to multi disiplinary team and had a phone call regarding more tests on Monday and a further one on Wednesday to consider results and discuss treatment .

I'm impressed by the speed and grateful to consultant for getting it through so quickly .

Myself ,I'm in cloud cuckoo land .
Mainly I feel immense relief that I'm not still in that awful limbo of expecting news any second ,endlessly fearing the worst but wondering if I was overreacting .

I can't really bear to think about what lies ahead and I'm finding ignoring it easier than the waiting stage .

zen1 Wed 20-Mar-13 19:30:07

Glad the endoscopy wasn't too traumatic for you today, ginger. It sounds like the consultant is really on your side now and he is pushing so you won't have to wait too long before they have decided on the best course of treatment.

It is still a terrible shock for you and I think you are right not to focus on all the possibilities of what may or may not lie ahead. I know it is a cliche, but just dealing with things on a daily basis may be easier? Once you are armed with all the information about the treatment options, hopefully it will give you back some control over the situation. It must be awful not knowing what is going to happen next. Still here and thinking of you.

thekingfisher Wed 20-Mar-13 20:37:54

thinking of you and pleased it went better today x

Elibean Thu 21-Mar-13 14:44:46

Zen speaks sense smile

I'm glad the endo went more easily, and consultant is behaving, and getting you treated fast.

You know, it strikes me that if/when you want more knowledgeable people who can advise about coping with treatment, the Tamoxifen thread is brill - lovely, lovely ladies and a whole variety of experiences which they're always happy to share (along with cyber-treats).

xx

gingeroots Fri 22-Mar-13 08:12:09

Thanks for that Zen ,kingfisher ,and eli.

I might do what you suggest eli - might pick up some tips on inducting DP and son ( latter not told yet ) as to the mysteries of the washing machine etc .

And what to do about DP who is not dealing well with this I think .
He says he doesn't want to talk about it and that therefore he can't help me and is a terrible person .

Twosugarsplease Fri 22-Mar-13 09:27:44

Hi ginger I couldn't find your thread yesterday.
Thinking of you.

Elibean Fri 22-Mar-13 19:50:42

Do, ginger. Really, they are lovely.

I'm sorry your dp is finding it so hard to talk about it...hope he finds it easier once the initial shock wears off. Perhaps once treatment is planned and underway, things will settle a little more and become a sort of 'new normal'...but again, the ladies on Tamoxifen thread would have helpful words on all that, I think.

Thinking about you x

farewellfarewell Fri 22-Mar-13 20:56:41

I'm thinking of you too ginger xx

MintyyAeroEgg Fri 22-Mar-13 21:11:02

Oh Ginger! I have missed all this. Sending very local warmest best wishes thoughts and am also shock about the suggestion you might want to browse the shops of Camberwell Green. What did she mean ... Peacocks, Poundland, Greggs ???

PeachyPossum Sun 24-Mar-13 16:20:17

Darling ginger, hoping your weekend has been as good as can be. How is your DH, has he started to talk yet? After my op my DH had some strange ways of processing what had happened but settled in time. Different situation but hopefully your DH will settle too and be able to support you as you need him to.

Anyhow lovely, I am thinking of you and send my love xx

Elibean Sun 24-Mar-13 16:25:04

Am thinking of you too, and glad you've found the Tamox ladies smile

Will be sending good vibes all week, xxx

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