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Original poster

2 week urgent referral - not coping

89 replies

thisbetheverse · 02/06/2023 21:07

Hi, I’ve been told i need an urgent 2 week referral to rule out cancer but I’ve still not got my letter yet, I keep chasing the GP but it’s a week later now then when he first told me and still no letter (the 2 week doesn’t start until this is issued!).

I have a 6 month old daughter and I’m really struggling to cope, I know it’s irrational but every day I think this could be my last time with my daughter. I can barely sleep and keep bursting into tears, have a constant sick feeling. I’m so so scared.

i have a swollen neck, initial blood tests have come back clear but they want to send me to an ENT specialist.

i guess just looking for any coping strategies whilst I wait, plus any advice from anyone else who’ve had a similar experience.

i don’t want to leave my daughter without a mum, I’m so devastated that it could happen.

OP posts:
Original poster
thisbetheverse · 10/06/2023 17:07

I finally got my appointment with ENT confirmed for this Thursday, it can’t come quick enough! Sending good wishes to you both, keeping busy has definitely helped me!

OP posts:
longtompot · 10/06/2023 18:23

thisbetheverse · 03/06/2023 21:05

So sorry to hear you’re going through the worry too longtompot but glad you’ve got an appointment booked in and having some movement. Someone on the thread earlier said that we need to not think of the referral as they think we have cancer, more that they need to rule it out as a possibility, which I found very comforting and a better way to think about it! Let us know how you get on - sending you all the good wishes!

I had my blood test results and there's no concerns with the CA125 test,which is great news, though I need to have my bloods redone in 4 weeks as my kidney results were a little high. I suspect dehydration as was in the greenhouse and didn't drink enough water for that. I still have the pains and bleeding so hopefully gynae will ask me to have ultrasounds done to see if it's a cyst and if so, if it needs anything done about.

worldwidetravel2017 · 10/06/2023 18:59

spiggydit · 10/06/2023 14:17

@worldwidetravel2017 still waiting for my colonoscopy on Monday - feeling as if I'm drowning in worry and imagining all sorts of scenarios but trying to distract myself best I can ! Hope you're doing the best you can?

Dya start the prep today / tomorrow ?
The fluids 2 clear ya bowel are worse than colonoscopy
Let us know how you get on.
Thinking of u

spiggydit · 10/06/2023 19:14

@worldwidetravel2017 I'm low residue today, clear fluids tomorrow and Plenvu at 5pm and 9pm ready for colonoscopy at 9am Monday .Just want it all over and done with - hoping for the best prepared for the worst - which is an easy thing to say but still down the anxiety rabbit hole. Hope you get your results soon Flowers

Original poster
thisbetheverse · 17/06/2023 15:10

Thanks to everyone for their supportive comments, it really did help get me through the agonising wait. I’ve been fortunate that they don’t want to do any more testing as they feel the blood tests and neck scan is enough to rule out anything scary.

however my concern is they don’t have an answer for what is causing the swelling. Maybe it’s just fat? Has anyone been in this situation and if so has it just gone down by itself?

OP posts:
Original poster
thisbetheverse · 17/06/2023 15:11

P.s my anxiety hasn’t fully lifted yet as you do read about people who get told everything is fine and it turns out to be not… I would feel much better if they had some sort of reason for the swelling.

OP posts:
grass321 · 17/06/2023 15:24

Great to read your update and really glad it's positive news. Hopefully the anxiety side of things will start to settle too.

Original poster
thisbetheverse · 17/06/2023 19:07

Thanks so much @grass321 ❤️

OP posts:
Avagrace2010 · 09/08/2023 03:54

Hope by now you've been seen. I totally get everything you're going through. I was referred 18/07/23 now 08/08/23. I have 3 kids, 27,24 and my daughter who's 13. My 3 kids lost their father january this year. I stupidly cancelled my doctors appointment in February as was dealing with concentrating on my kids and supporting them. I started to be more and more in pain and went in July. My doctor could see imstantly all wasnt right and couldn't carry out an internal as saw straight away. This wait is horrific. I like yourself am in a state of panic, especially as what loss mine have had this year already. Was 4 weeks (supposedly 2 weeks emergency referral) last week rang the hospital and thwy were so apologetic as wait time is a good few weeks. Doesn't help me at all. My health has nosedived. Been in bed for the last 4 weeks. Sleeping all the time. Nauseas, breathing problems. Can feel the pain internally every day. I like you, the thought of my kids being without me terrifies me. I feel i just know it's bad as I've never felt like w this ever and expecting the worse. Truly hope your outcome is a positive one. 🤗

Original poster
thisbetheverse · 09/08/2023 07:43

Avagrace2010 · 09/08/2023 03:54

Hope by now you've been seen. I totally get everything you're going through. I was referred 18/07/23 now 08/08/23. I have 3 kids, 27,24 and my daughter who's 13. My 3 kids lost their father january this year. I stupidly cancelled my doctors appointment in February as was dealing with concentrating on my kids and supporting them. I started to be more and more in pain and went in July. My doctor could see imstantly all wasnt right and couldn't carry out an internal as saw straight away. This wait is horrific. I like yourself am in a state of panic, especially as what loss mine have had this year already. Was 4 weeks (supposedly 2 weeks emergency referral) last week rang the hospital and thwy were so apologetic as wait time is a good few weeks. Doesn't help me at all. My health has nosedived. Been in bed for the last 4 weeks. Sleeping all the time. Nauseas, breathing problems. Can feel the pain internally every day. I like you, the thought of my kids being without me terrifies me. I feel i just know it's bad as I've never felt like w this ever and expecting the worse. Truly hope your outcome is a positive one. 🤗

Hi @Avagrace2010 I’m so sorry to hear you’re going through this, it really does take over and the wait is agonising. Crossing my fingers for you that it isn’t anything serious, if it helps when I got to my appointment (finally after 4 weeks!) the specialist said it’s becoming standard for doctors and a&e to put people on the pathway because they’re unsure of the cause but it is not common for it to actually be cancer. He was saying it’s actually being over used which is causing some of the delays.

also can you see your referral in your nhs app? The reason I was delayed for so long was because my referral got rejected due to a technical error, I was calling both the hospital and the Drs every other day till someone finally looked into it and realised!

another option, I considered private as my dad offered to loan me the money. To see the actual specialist would have been £250, then more if any scans etc. thankfully I didn’t have to use it but I did book the appointment (they had a 24 hour cancellation policy) which helped because I knew that at least I had a date in the diary.

thankfully my neck was non cancerous, and it did make me change some things about my life afterwards (stop working overtime as much, appreciate my family more) so as awful as the time was it ended up almost being a positive.

do let us know how you get on, hoping for a similar outcome for you.

OP posts:
Original poster
thisbetheverse · 09/08/2023 07:47

P.s I was also so certain it was something bad, I was feeling my neck constantly and it looked like it was growing to me but ended up being just a bit of fat essentially! Could you have caught a bug recently? Covid is going round my family again and they’re having aches etc. it could be that you’ve picked up something at the same time as whatever is causing your issues which is making it feel worse?

OP posts:
NotYeti · 10/08/2023 00:09

We're in the same situation here and I'm pleased to hear you are ok @thisbetheverse . Also hoping you get seen and sorted quickly @Avagrace2010 . The stress is insane isn't it? You're just living your life as normal when suddenly you have to start thinking about your own mortality. It's really stressful.

DH went to the GP a couple of weeks ago and was put on the two week pathway "just in case". We were surprised but didn't think much of it because we knew they have boxes to tick. He was given an ENT appointment two days later and the consultant hinted that his symptoms could be caused by cancer or an aortic issue, or it could be nothing. We obviously heard "cancer" and have since lost our minds thinking he's going to die. It's horrible. We're trying to have some perspective that there is still a good chance it's nothing, but it's really scary. He had his CT scan almost a week ago and all day every day we just wait for bad news.

😣

OP posts:
NotYeti · 10/11/2023 12:23

Hello! Just to update that we waited for the CT results for almost three weeks I think. Had an appointment with a consultant to discuss them and when we got there he very breezily asked if we'd got the results yet, and was surprised when we said no as we should have got them already. Anyway all was well so that's a relief! DH still has his ENT issue that they're looking into but it looks like it's just one of those things and we're looking at different ways of managing the symptoms.

Hope everyone else is doing well.

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