Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Anyone know how long CT scan results take?
I had hospital appointment yesterday, expecting results and treatment plan
But results not back
Which rendered hospital appointments pretty useless tbh 🙄
Thanks all

@ClashCityRocker 🎉 🎊 fantastic news, so pleased for you
Wooooohoooooo 😁

@Unex mine were same day
Perhaps no news is good news

My bronchoscopy / EBUS has been brought forward to Monday. The MDT is held on a Tuesday, do you think they will have the results for that?

@Unex sadly with the current state of the NHS who knows? It’s all part of the headfuck that is the cancer experience. Waiting and inefficiency from the kindest most well meaning folk who fail to understand the torment they inflict on us. I’m still waiting for an appointment for the urgent bone scan ordered in late August. If I had mets I’d probably have fractured my arm by now! Luckily it is getting better with physio.
It might be worth ringing the consultants secretary ( or emailing her) and ask her. You need to be a blend of sweetness and charm with persistence and desperation to get her to feel sorry for you and chase it up. If there is a backlog in radiology reporting you need to try to get them to prioritise you. Crying in the phone won’t do any harm as long as you stay ultra reasonable as this really isn’t their fault they are all victims of an underfunded understaffed system. It breaks my heart to see what is happening.
If it’s any comfort they would probably speed up if your scans were bad.
Sending sympathy x
Top

My tests to see if gone to stage 4 it was roughly two weeks. Its a bit unpredictable now with the NHS, it used to be no news tended to be good news and bad news could come in c 24/48 hours if very bad but now its much more varied then still generally the longer the wait the more likely its better news. I had my head CT 28/9 and results 9/11. I know if I get called it earlier that's very bad news but as they haven't called yet would assume was all clear.

@TopOfTheCliff
Thank you
I get they'll ring when they're ready, I'm just so scarred
I'd got myself prepared for results, and my sister took time off work to come with me. And was told very little
So now I darent really do much, in case they phone
With no real indication of when that could be
Tbh after receiving news of high CA125, abdominal mass (almost certainly ovarian cancer) and possibly/ probably kidney cancer I just jumped to 6 week club note
I had no idea over 2 weeks later I'd be no further forward
I might need those sick weeks later in treatment
Agree each individual person is "doing their best", but blimey Tiz a tricky time

I think I'll ring secretary tomorrow
At least get an indication of timeframe

It can help to ring. With ours MDT met once a week so normally if you missed one was delayed a week.

If its easier you can also request results given over the phone or over video call rather than face to face. Default for cancer is face to face but I requested and got a lot of video and phone calls as found that less stressful. The only issue is the time you are given seems very flexible and its often quite a bit later. I was told once the time just meant any time that day. 😂

Interestingly I was told about the actual cancer over the phone by my GP
I was expecting it it to be endometriosis and maybe menopause

I was also told over phone about very high Ca125 result - almost certainly cancer- and was cancer

But when GP trainee phoned on mobile I was on the landline dealing with the insurance because of the car crash I’d had earlier that week.

I knew immediately it was going to be bad, and I didn’t have the headspace to speak at that point. So I told a very surprised Dr that I couldn’t speak to them and would phone them back.

Poor girl! It may have been the first time she’d had to do that. Not impressed the Partner didn’t do it himself. She was more stressed than I was when we spoke later.

Yes, my usually very calm and competent GP was also a bit flustered tbh
Not what they were expecting either
Tho tbf at least bit was the senior GP and the the junior locum who phoned

Hi all,

@ClashCityRocker great news for you, wonderful!

Just caught up a little and on the HRT front, I did have a clear mammogram prior to starting HRT in summer 2022 (not deliberately) but still have bc.

I had chemo round 2, a week ago and have been absolutely exhausted, culminating in a visit to the unit today to be checked over due to breathlessness. Bloods and CTangiogram ok but have to have an echocardiogram on Saturday also. I don’t feel like I’m doing this right 🥴.

@ClashCityRocker thats such lovely news 🌻🌼🌺

@Unex my oncologist normally gives a timeframe of around 2 weeks for CT results, and tbf to them, they have been letting me know everything's stable at the latest 2 weeks afterwards.

@BreakfastClub80 I don't think there's a "right" way to do chemo! We all have completely different response to it. If you're exhausted then rest 💐

My call came about 5 minutes before my colleague knocked. I don't think the reg I spoke to has very much experience of phone call appointments. She was incredibly apologetic when I told her she'd need to be fast as I was expecting someone & thought four hours after my allotted time would be plenty, and offered to phone back.

She didn't really pass comment on the fingernail thing but did say I was probably doing the right thing keeping them short & avoiding water as far as possible 🤷‍♀️ so I still have no idea what the cause is/may be (I suspect a combo of new meds & chemo).

CT - she said everything is "stable" & I didn't have it in my by that point to ask if stable meant absolutely nothing different.

She did comment that I seem to not be drinking enough - sodium is low. At my last chemo I was drinking too much 🤷‍♀️ I must drink at least 2 litres of dilute a day, plus teas and coffees, plus milk in cereal (if I have it). Not sure how much more I can manage...think I've had this problem before actually

@lucysmam that is good news about the scan but odd saying low sodium is drinking too little. Usually a low sodium is because someone is drinking too much water and lacking electrolytes eg during sport or in hot weather when you are sweating. It’s called hyponatraemia and one of the causes is excess water intake. Just keep doing what you do!

@ClashCityRocker

That's brilliant news! I'm so happy for you 😃 🍾 🌞 🌺 🍹 🎉 🎈

@lucysmam I hope the timing of the call and your colleague popping round worked out, and that the call went ok.

@TopOfTheCliff Well done at skittles! 🏆

@Silkiebunny I almost want to eat that photo of the red velvet cake it looks so yummy!

@lucysmam sorry, just noticed your post from 19:48. I had a cup of tea between starting my previous posts and posting!

I've had low sodium, and I took tablets called Slow Sodium (temporarily while on the chemo that caused it). Drinking too much eg water makes it worse though, not better. Did the registrar maybe mean your sodium was too high? Can you ask for your blood result and the normal range from the lab?

Thanks @TopOfTheCliff the question about how much I drink was definitely a "do you drink enough, your sodium is looking low 🤷‍♀️ I'll carry on as I am - she was going to speak to one of the two consultants and ask her to ring if she thought it was cause for concern.

She was quite shocked when I requested the next appointment be mid-afternoon as I can't have my phone on me, too. She suggested take my phone into class & just nip out when they rang. Unfortunately, other year groups might be allowed to do that (and many of our staff do), we can't in EYFS so I do need it to be after work or an in person one that work can then arrange to cover me for 🤷‍♀️

@lucysmam I think that's the sort of thing the school has to do: they need to find cover so you can take the call. As a cancer patient, they have to make reasonable adjustments for you, which should include time off for medical appointments. You said they would for a face-2-face appointment, but these days a lot of important appointments are over the phone so that isn't quite fair of them. (Note I am not an employment lawyer!)

It is very weird about the Dr's low sodium comment and needing to drink more. Having had low sodium myself, I know she's got it the wrong way round. If it is low, there are great tablets called Slow Sodium which I mentioned above, but I still don't get it how a Dr could get that wrong. I wonder if she meant your sodium was high(?) Some doctors do get things like that wrong though; I've experienced a Dr muddling up basic hormones.

Same here

@ClashCityRocker Amazing results! Woo hoo! So happy for you. X

@Unex I was told my hospital has a shortage of radiologists and that the shortage is pretty much nationwide. I suppose that's why we usually have to wait so long for eg CT, MRI etc results. I hope you hear soon.

@SummerCycling now you and Top have said it, I wonder if she was a bit muddled. Like I said, she didn't sound very experienced at phone consultations. I might ring their secretaries number tomorrow and ask for clarification. I think that's my best bet.

Realistically, work should (and would) arrange cover for a phone call appointment. However we're legally not allowed our phones & I can't really keep nipping back & forth "just in case" they call. Would be handy if my phone connected to my watch properly, then I would be able to see the call & nip out, but it stopped doing that a while ago 🙄

@lucysmam Good idea, ring and ask for your sodium result along with the normal range at the lab. If they won't tell you, your GP can request the blood results from the hospital. I've often done that and my GP is great about it.

I think the school need to find a solution for the phone call issue. I suspect it's a school rule rather than the law that no staff mobiles are allowed in class. Good luck, and please do let us know what happens.