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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 · 02/06/2023 22:11

Thanks Zoomies I didn’t know this about the neck, hopefully it is something similar and related to post-pregnancy hormones! Glad to hear your daughter is okay now that must have been tough for you both,

OP posts:
Original poster
thisbetheverse · 02/06/2023 22:14

had exactly the same thoughts as you, the thought of her going through life without a mummy consumed me for 2 weeks.

This! I can’t stop thinking about this. It’s like my mind has already gone into ‘you are going to die’ and I can’t convince it otherwise. Although this thread is helping me. I’m a long time lurker on mumsnet but never posted, I’m blown away by the kindness of everyone sharing their stories and giving advice. I feel a lot less lonely than I did an hour ago! Thank you xxx

OP posts:
LAlady · 02/06/2023 22:15

Should also say both referrals gave me the all clear and picked up the actual problems - a stomach ulcer first time and diverticula disease second time.

The waiting is the worst - both times I did my very best to push it to the back of my mind.

WhereTheSuburbsMeetUttoxeter · 02/06/2023 22:23

Ohhh OP... I'm the exact same position. Was referred last Thursday for a CT scan following full bloods. I've still not heard anything.

I'll hold your hand if you'll hold mine! I'm mid 40s, one 'child' in his 20s - I'm a grandma by him. A teenage daughter who is my world and is worrying sick about.

He's taken her to the cinema tonight bless him. Just waiting for him to drop her back.

I haven't read the full thread I admit. But I'll catch up properly in the morning. In the meantime - love to all in our position ❤️

Original poster
thisbetheverse · 02/06/2023 22:27

So sorry to hear you’re going through this too, it’s excruciating and must be hard having family worry ontop of your own worry!

Sending you lots of well wishes, hopefully you can take comfort in some of the positive stories on this thread as I have, and keep me updated on how it goes for you! Can you see anything in your NHS app?

OP posts:
Jodie569 · 02/06/2023 22:39

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.

Hey op, this was me last year. I swear my lump on neck grew just after I had my daughter 7 years ago but was more noticeable last year. You have to keep on at the doctor- this is what I did as at first he said I'd have to wait 3 months. My lump was more on the left it's still there now. First appointment was with ENT, they will put a little tube down your nose (please don't worry you won't feel a thing it's really quick). He will tell you what he can see and he will check your neck- he said I had some nodules on my thyroid just by touching them. I then had to wait another couple of weeks for an ultrasound, again they will tell you what they can see. Mine was lots of nodules but clear cyst like ones. Then after US results you automatically get booked back at ENT where they tell you what they saw on scan. The only pain is now il have to pay every year for a private ultrasound to check them and I'm planning on going private to have surgery and they won't do anything. I do suffer quite a lot with them, it affects my breathing and swallowing.

I can honestly say I felt exactly like you are feeling now, I constantly googled and in my head I thought the worst. I would not wish this fearful anxiety on anyone.

Orangesandlemons82 · 02/06/2023 22:39

I had a growth on my thyroid found during an MRI for a completely unrelated reason.
I had an ultrasound of it and because it had a blood supply and was very vascular I went on to have a biopsy (thought it would be horrific but was pretty painless). Unfortunately the sample was too blood stained and was rejected by the labs so I had a second biopsy. This was inconclusive and showed cells that can be both benign or cancerous. I had a partial thyroidectomy in the end.
Through the whole process my mental health spiralled, I was convinced that I was going to die and my children would grow up without me. I really empathise with you, I completely remember how horrible the wait was and how frustratingly slow everything seemed to be.
I hope you hear from the hospital soon, and don't be afraid to chase them up.

Jodie569 · 02/06/2023 22:48

thisbetheverse · 02/06/2023 21:34

Also that’s good to know about going private not actually being that quicker. I was considering getting some sort of loan but if that’s the case there’s no point!

There is no point in going private right now unless they make you wait months. I forgot to say that with in a week I had a text from my local hospital giving me dates/times to book in. Hopefully that's the same for you. In a few weeks this will all be over and you will know what's going on. Waiting is the hell part, I just could not concentrate and life was on hold.

frangipani13 · 02/06/2023 22:48

I had this on Dec/Jan too, the wait was excruciating. Mine was a referral to the endocrinology dept and ultrasound, I found the consultants secretary to be so helpful as I took to chasing the referral with them directly. A very polite but tenacious approach goes a long way. Mine turned out to be acute thyroiditis which made my goitre swell and thyroid way overactive, it calmed down eventually with meds but the worry was awful, I have an 18 month old and a 7 year old. It’s difficult not to let your thoughts spiral. Sending you big love x

Mollymalone123 · 02/06/2023 22:51

You can have a lymph node swell up when u have a cold or virus and they sometimes don’t go down for months.i had one for 9 months before behind my ear.The more you touch it the more it stays put.it eventually went away if it’s own accord.hopefully it’s similar to that and the fact it isn’t hard suggests nothing sinister.I’ve had my groin nodes removed recently as I do have cancer ( totally unrelated to lymph node behind ear) and they were v hard and immovable.i also have some come up in my abdomen which I can feel and they are hard as well.Hope that puts your mind at rest.

NeonHalo · 02/06/2023 23:14

My son had a squishy swollen lump on one side of his neck which took about a year to go down. It looked enormous but was actually a tiny calcified lymph node surrounded by fatty tissue. The wait was agony but it’s fine. I’m sure you’ll be okay lovely, sending a hand hold.

miniegg3 · 02/06/2023 23:52

I had the same recently and was sent for an head mri which was clear, then after seeing a specialist I was sent for an emergency abdominal CT as the rare symptoms I was having are most commonly caused by breast/lung/ovarian cancer (shouldn't have googled 🫣) but all came back clear and an still a mystery so far, waiting on a neuro appointment. I'm sure most people are fine, but good that they are checking people so quickly. 🤞

miniegg3 · 02/06/2023 23:57

Also, I had painful swollen lymph nodes under my armpits for the after having my son for some reason!

Shelaydownunderthetable · 03/06/2023 00:02

Hey OP, been in a similar cancer scare situation - it’s terrifying. Just wanted to post to add to the support. You are not alone and everything you’re thinking, feeling and experiencing is normal. Being faced with our own mortality is excruciating. Hang in there - it will be ok.

Batalax · 03/06/2023 00:08

Sleeping tablets helped me. They wouldn’t prescribe many but after a few days I halved then quartered them to eek them out.

Fingers crossed for you. The waiting was the worst bit for me. Once you’ve got a plan in place if the worst happens, you begin to get your head round it.

Groutyonehereagain · 03/06/2023 00:18

I’m a cancer survivor. I know exactly what you’re going through @thisbetheverse it’s awful. I saw my GP during the wait and she prescribed something to help me sleep. This helped, as it gave me a break from all the worrying. She told me to keep busy and to do lots of nice things. I did that and amazingly, I got through it. We find strength we didn’t know we had. 💐

jannier · 03/06/2023 01:18

The GP sends the letter direct I got my phone call at 12 days appointment on day 14.

spiggydit · 03/06/2023 12:04

@thisbetheverse I'm currently in the same position on a 2 week wait pathway for bowel cancer. The anxiety is overwhelming despite a very well organised set of referrals and tests well within the two weeks. I can't manage work at the moment because I can't focus and if anyone even mildly complained I just might shout at them that at least they're not facing a cancer diagnosis so they can stfu.

Original poster
thisbetheverse · 03/06/2023 12:09

So re-assuring to hear all the stories of where it either wasn’t cancer or that you beat it! It has massively helped me and whilst I’m still anxious I do feel a little less heavy today, so thank you.

sorry to hear you’re going through it too spiggydit - I know exactly how you feel about work, I’m struggling to concentrate or even care but I know I have to try for the sake of my daughter (we need the money!) xx

OP posts:
Batalax · 03/06/2023 16:09

The anxiety is definitely overwhelming. I remember being in the supermarket as a defining moment, thinking everyone is going around their normal business and here I am with this massive weight dragging me down and no one realises.

Of course years after treatment I’m just there doing my normal shopping again.

spiggydit · 03/06/2023 18:39

@Batalax I found your post oddly comforting and it did make me go out and do a bit of food shopping. Life goes on regardless of any outcome doesn't it? Thank you - and thoughts to everyone in the same position

longtompot · 03/06/2023 19:04

I saw a GP Friday as I have been having some pains around my right ovary, not constant, and have been put on the two week pathway. I and my GP don't think it's cancer and I am having a blood test on Monday to check my C125 markers (or whatever the number is), so assuming that's low, I am guessing it will just be a cyst and will either shrink, or maybe removed. But, all that said, I am worried with the what if. I feel calm on the outside, but my brain is thinking all the time. I have had my letter from the gynae dept saying they are reviewing my referral, so maybe they are waiting for the bt results. I hope you get some movement soon as waiting is the worst. Sorry, not really answered your op💐

Original poster
thisbetheverse · 03/06/2023 21:02

I remember being in the supermarket as a defining moment, thinking everyone is going around their normal business and here I am with this massive weight dragging me down and no one realises.

yes!!! This describes how I’m feeling perfectly. It’s really comforting to know that you went back to doing it normally.

OP posts:
Original poster
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!

OP posts:
longtompot · 03/06/2023 21:58

That's how I am trying to think of it. It's how I've put it to my kids (all early 20s) so they don't stress. Thank you for your kind words and I will let you know, either way. Sending you all the good wishes too💐