Good morning
I'm typing this after a week of my whole life being on hold while trying to sort out the mess that the GP surgery and hospital have made of my treatment so far. Does anyone please have any advice? It's a long one. Long story short I've been on a 2 week wait multiple times since 18th April and still no closer to treatment because of errors. PALS didn't respond and their average wait time is weeks but this seems time sensitive.
I had covid in November and my lymph nodes swelled all over my neck and in my armpits. This happened when I had it before and also when I had the jabs. Nothing else has ever caused this to happen to me. I have also had proximal DVTs appear non stop since then and I'm on blood thinners for those, with constant breathlessness. I didn't notice the swelling on my left superclavicle because of the other swellings which are since long gone. By mid April, my collarbone had a firm, painless swelling the size of half a boiled egg.
I went to the GP on 18th April.
GP referred me to the breast clinic on 2WW.
Breast clinic couldn't help and said I probably don't have breast cancer but they don't deal with necks. No tests done. Just a visual examination of my chest.
Went back to GP. Saw a nurse who said there is no lump just swelling and probably just fat. She was rude to me and has made comments before when I was a size 10 that I should join her weight loss group (I'm a wheelchair user and do struggle to keep weight off but I'm not diabetic or prediabetic like she suggested and I reluctantly had a blood test for). The nurse agreed to send me for an ultrasound anyway to shut me up about the fact there is no fat on the other collarbone and I know my own body.
Didn't mark it as urgent. It was upgraded to urgent when I queried this later on, but I waited weeks for it.
Had the ultrasound. They didn't appear to scan my collarbone area despite asking why I was there and asking me to point to where I felt the lump is. They said the nurse who referred me felt there is no lump and just put "scan of neck, px has anxiety". I do have anxiety but this diagnosis was years ago and somewhat irrelevant. I only went to the GP about the lump because my partner asked me to due to swallowing problems.
The results of that scan showed a hypoechoic mass with echogenic foci (?) I can't remember what the letter says without finding it. It was graded BTA U5 if that helps. Suspicious mass on my thyroid and a smaller 6mm one BTA U3/5. On the left side.
The letter said to urgently refer me to ENT.
The GP surgery got the results and called me the morning after. The doctor kept saying I had a cyst on my thyroid and not to worry but he was getting some advice.
He sent an email to the endocrinology for some reason, asking what to do. He referred to a lump on the *right* hand side, on my collarbone (which to me shows the lack of care and attention to important details).
Waited 2 weeks for the response to come back, which was the same as the original advice to refer to ENT urgently.
Doctor referred me to endocrinology as routine- which I queried the clinic and the urgency. Was told no, no - it's definitely right.
Couldn't book endocrinology appointment when the choose and book came through, as both clinics had over a year wait. Called GP surgery and the receptionist said she would have to book it for me.
Called me the next day to say they would send me to ENT as endocrinology rejected the referral and gave advice.
"Referral for suspected head and neck cancer" 2 week pathway again.
Saw ENT clinic 4 weeks ago and they ordered a better ultrasound of the nodules and an ultrasound guided FNAC of the superclavicular lymph node. They could definitely feel and see the lump that the nurse dismissed me about. They noted it as palpable etc. Told me they would keep me on 2ww.
Day after that appointment I got a call to go in for the tests. Same person doing the scan as last time. I queried if it was the biopsy. She ignored me and stayed silent the whole time. She spent 30 minutes scanning my entire neck but didn't go near my collarbone at all. I queried this and she just did a half smile half smirk and said "no, all done" and I left because it was really awkward.
Went to my follow up last Wednesday to be told that it was a pointless visit. They don't know why nothing is noted about my superclavicular area and why the biopsy wasn't done. They did a camera down my throat which didn't show anything. They said they can't do the biopsy in clinic because of my jugular. The position is too difficult or something. They apologised profusely for being messed around and kept me on 2ww. The doctor I saw then said there is a palpable mass on my collarbone.
Letter received on the weekend which was sent to my GP. Rather scathing and stresses the need for the tests to be ordered by ENT admin ASAP due to the swelling of my collarbone.
Realising I hadn't heard anything and 2 weeks was approaching, I called the hospital. ENT reception don't take calls. I had to go through to the appointments booking line even though I wasn't aware of any appointment.
"Oh, don't you know you have an appointment on the 18th?" I asked if that's for the tests or a follow up. It's a follow up. "They can't follow anything up though, I haven't had the tests yet". "Sorry can't help, I'm not clinical." "Who can help?" "ENT admin, they order the tests". "Can I speak to them?" "They don't take calls from anyone." "OK so how so I sort this out"... line goes dead. The young lady comes back and says she spoken to ENT admin and my biopsy will be done in clinic and not to worry. I said that they didn't do it in clinic last time (they had the trays ready but after looking at my first scan it wasn't safe). I said that my letter even says they can't do it and it needs to ultrasound guided. She insisted I was wrong so I said I would be willing to put money on them being incorrect in this case and can she check again. She went away and then came back on "they've agreed to take your call so I'll put you through now".
"Hello and welcome to Royal Bolton ENT... I am out of the office. Please do not leave a message as it will not be listened to..." or something like that. I called the appointments line again and was like 20th in the queue. I had a little cry in frustration and decided to call them back at some other point.
In the meantime I had a call from someone who introduced himself as "ENT" and he said I have an appointment on the 18th and havent responded. I said I don't know if there's any point attending with no tests yet and when will the tests be done. He didn't know so I asked him to check, assuming he was from ENT. It turns out this young lad isn't in ENT and has to say that. He works on reception and has no access to records or anything else. He asked someone to take the call when I became upset. I explained the problem and they said they would personally take the copy of my consultant letter down to ENT admin and ask them to order the tests and call me back.
ENT called me an hour later and said they have asked radiography to book me in before the 18th. If I didn't hear anything yesterday I have to call back and start this whole ridiculous communication saga over again. I feel sick at the thought of having to explain over and over. I have other health problems that I have to manage, a household to toagnose, children, pets, studying and work. I don't have time to spend 8hrs a week on hold... or the contract minutes which are all used up.
I can now see the suspicious masses found in May. They're bigger. My collarbone hasn't gone down. It's like the blood vessels on my neck have hardened over where the lumps are too and turned white. Like I havw a scar going up my neck that looks like a flash of lightning. That part hurts sometimes and it's a sharp pain that catches me off guard and I'm trying to hide it from my partner and young children when it happens. I just want to know what's wrong with my body and feel like 3 months and counting is a disgusting amount of time to wait for something "urgent".
Thanks for reading... and sorry for going on!
Such disgusting attitude from people who are supposed to care. What's wrong with them? 
