I've been referred on the 2 wk cancer pathway and so scared

[SimplySteveRedux]

Started having swallowing difficulties late March and just buried my head in the sand , it's been an extremely difficult year and there are other serious health issues looming on the horizon.

Starting six weeks ago anything I eat, even tomato soup becomes lodged in my oesophagus and I'll vomit a few seconds afterwards. I've dropped 20kg in six weeks, even the fucking pharmacist has noticed.

So I'm due a gastroscopy before Christmas, and I today requested it under a general anaesthetic, or the anaesthetic induction agent propofol to be told this isn't an option on the two-week cancer referral pathway. I've been offered midazolam with fentanyl. I was systematically raped and sexually penetrated in every orifice as a 14-year old and the thought of being aware of this procedure is making me vomit and chain panic attacks.

I am not in a good place. I'm even toying with not going for it

Im so sorry to hear this. I wonder if talking to a nurse or gp about your fears might help and steps can be taken.

Sorry, I don't know the answer I just wanted to wish you well and also to say, don't give up - keep pushing for what you want. Sometimes people go for the easy option but if you push they may be able to help you.

Just needed to let the emotion out and MN has always been good to me

I'm sorry about what you went through at 14, and sorry to hear what you're going through now.

I had cancer, several times i thought if I just don't turn up it will all go away. But you can't do that of course. I've had the gastrocopy, I had it without sedation and it was not pleasant, but everyone I've spoken to that had sedation said it was fine.

When I was on the two week pathway I had a direct line numbet to a nurse, have they given you this? Please call and speak to someone, they will want to help you. Xx

I had my initial conversation with the referral team today and was told I'll be allocated a nurse and she(I requested a female) will be in touch tomorrow or Friday. I'm going in for a battery of bloods on Friday too.

I hope you're cured from your cancer ordeal.

@SimplySteveRedux I'm so sorry to read this. Were you able to make the nurse aware of your history, so they can support you as much as possible.
It will be incredibly hard for you, but please, please have the diagnostic tests, so there is the best chance of sorting out what is going on as quickly as possible. Do you have someone who can go with you - I'm sorry, I don't know if they're allowing that ATM with covid- but it will just help to have someone that cares for you there with you

I'm so sorry about what you went through as a child. Please keep speaking to people on here- you know we're all out here hoping for the best possible outcome.

Just to say I hope it goes well. If you are underweight and lacking energy, I can recommend Fortisip drinks. They were prescribed by a GP for my mum, but are available to buy online or through a chemist.

You must go for the test OP.

I’m sorry what happened to you as a child

Can your GP prescribe you something to ease the panic attacks?
Do you have a counsellor or could you self refer to talk it through?
I had endoscopy with midazolam and remember the drug going in and thinking it wasn’t working........came round in recovery.

Talk to the nurse about why you are severely anxious, she’ll help

Were you able to make the nurse aware of your history, so they can support you as much as possible.

Yeah, the problem is due to covid the number of propofol lists has been massacred, she said approximately two people a week only now. She did say I could withdraw consent at any time if I wasn't happy with the midazolam/fentanyl combo - the problem is I just freeze in any perceived situation of adversity and if the consultant is male then all bets are off. PassataQueenofBritain your username gave me a good laugh Nobody else allowed, just me again due to covid.

If you are underweight

Sadly not, I needed to lose weight but not like this...

Can your GP prescribe you something to ease the panic attacks?

I have an appointment on Friday, I get some paltry 2mg diazepam a month, going to try to get some stronger dosage.

Sorry OP I don't have any advice but just wanted to say I'm thinking of you.

Op, please go for the procedure.

I completely understand where you are coming from. I’ve been there, but with me it was my bladder. I went in on the day expecting ultrasound only, camera on a following day, but it was the camera too. I told the nurse doing the preliminary checks that I didn’t think I’d be ‘very good with it’ and told her ‘I’m not brave’ I didn’t tell her the whole story, but by my reaction she must have guessed there was a back story there.

She was amazing and came in the room with me and held my hand. It was a male doing the procedure but he was amazing and so sensitive.

I wish I could tell you it went well, but I was a mess (full on panic attack) I kept saying “I can cope with the cancer but not this!” They kept on reassuring me and worked at lightning speed. It was over in seconds. They ensured I was emotionally ok and gave me time to compose myself. Not rushing me. They were quite frankly amazing and so caring.
They must have experience of this, they will know how to support you. If that means supporting you through a stress reaction then so be it, but it is important for your life that you go. This too shall pass.

I wish I could hold your hand too .

For me it was a happy ending op. I’m hoping it will be the same for you.

I wish I could hold your hand too

Oh that's got me welling up!

So happy you had a good outcome.

it was a name change for a thread I started because Sainsbury's sent me a letter saying I was their number 1 buyer of passata! Sadly other posters confirmed it was just at my store, but still, nice to be No1 of something

I hope Friday goes well for the bloods, but also with prescription- 2mg doesn't sound much over a whole month!

Socially-distanced {{{{{{hugs@}}}}}} and I'll be thinking about you.

I know it’s scary, but try not to worry, GP’s are cautious & rightfully so. I hope you can cope with the procedure OP & I am sorry for what you have been through as a child good luck OP keeping everything crossed for you.

I just wanted to say good luck. I have had an endoscopy, and the procedure only takes minutes

I had one and it wasn't too bad but I get I haven't been through what you have. Hopefully if you talk to them they can sort it out

I'm here holding your hand too. You're in my thoughts

You might have had propofol v midazolam so have your own experience but I just wanted to say I have had procedures under both. The propofol I can remember quite a lot, the midazolam nothing so it could be fine. Good luck

Midazolam is wonderful stuff, you won't remember a thing but will be conscious. Had 2 shoulder dislocations dealt with under it. I remember nothing from the injection!!

Hoping you get positive answers soon, big love xxx

Sorry I should have been more clear, I have had a procedure under propofol sedation. Propofol is also used for general anaesthetic but I suspect when you talk about the propofol list it refers to a sedation list rather than a GA list as a GA lIst is just a GA list they don’t usually refer to any particular drug to describe them.

Is it a “cancer referral” or a two week referral pathway for the endoscopy? The symptoms you have could be caused by many things. I’m so sorry if I have misunderstood, I don’t mean to be insensitive. But a 2 week referral for endoscopy/gastro wouldn’t necessarily mean cancer investigation.

Hey, thinking about you today @SimplySteveRedux

The GP said it was a two-week referral for diagnostic procedure due to presence of symptoms that could be indicative of cancer - the same is typed on the three blood forms, 22 tests in all. The blood test has been moved from the original location today, to a different location on Monday. I also have to fast.

I've been burying my head in the sand since I last posted until today. So I've been reading and the one thing that stands out is that swallowing issues such as these (dysphagia) have a high-incidence (>99%, found on numerous clinical websites) of being a symptom than a disease.

My GP mentioned two other conditions, these have varying other symptoms of which a tick oh-so-many boxes, Myasthenia Gravis & Multiple Sclerosis. I was diagnosed with M.E and fibromyalgia 13 years ago, my research shows that differential diagnoses for these are MG/MG and "should be investigated thoroughly". I didn't even have a fucking blood test....

Thank you @PassataQueenofBritain you're so kind

My other half was referred for the exact same thing a few years ago. It was horrendous. He ended up skin and bone. It turned out he had a condition called achalasia. He had an operation - a hellers myotomy - my spellings may be off and his eating is pretty much back to normal. It was like a miracle. Horrible condition but there is a light at the end of the tunnel if it ends up being that. He suffers from odd chest spasms now but for the most is fully recovered and no cancer.