Just after Christmas this year I started to develop neck and shoulder pain. I thought I just had a trapped nerve and tried to treat it myself.

After about a month I started getting swelling just above both collarbones. The swelling was the size and shape of half a golf ball on each side.

The other symptoms are

Headaches when I wake up. I have to sleep with one of those v shaped cushions so that there is no pressure on the back lower part of my head

Shooting pains in my left ear going into my neck

Tenderness to small portion of the cartilage in my left ear

Pain and some numbness down my left arm and leg (comes and goes)

Pain in my neck and collarbone – sometimes the pain feels like the bones in my collarbone ache like they do when I have a fever

Tired all the time

I have lost 9lb in weight but I recently started medication from my PCOS which may have caused this although I am not dieting

I went to the GP and she examined the swellings. She found a lump of around 2cms under the swelling above the right collarbone and said it was a swollen lymph node. She could not find any lumps in the swelling on the left collarbone but this is where all the tenderness is. She pressed into it and it caused a lot of pain in my neck and surrounding area.

To be able to feel the lump I have to sit forward with my shoulders slightly hunch otherwise it can be difficult to find under the swelling.

She referred me for blood tests which showed my inflammation levels at 15 and that my thyroid wasn’t functioning correctly. (I don’t have thyroid problems). She said the inflammation levels are not high enough to be an infection or anything serious but it could be the start of something serious.

She referred me for a chest xray for lymphoma but it came back clear.

She then referred me to the rapid cancer clinic for suspected head and neck cancer.

At that appointment I had an ultrasound on my neck and collarbone. The doctor conducting the ultrasound made me look in the opposite directly so she had more space. By doing so it caused the lump to “disappear”. I did point this out to her. She couldn’t see any lymph nodes in my collarbone and no cancer in my neck. It did show inflammation on the left side of my neck under my left ear

I then went to see the consultant. He stated I didn’t have cancer in my neck……thankfully!

He then “examined” me, I call it an examination but it wasn’t. He poked the top of my shoulder for a couple of seconds, declared it was muscle. He put his hand on the back of my neck, squeezed, asked if it hurt and then said it was skeletal or muscular.

I told him he hadn’t examined the right area for the lump and tried to show him but he would not listen and kept saying that it was a muscle.

He then just kept repeating that I didn’t have neck cancer and everything else was out of his department. I asked him about the inflammation in my neck under my ear and the pain in my ear and he said it wasn’t his department (he is the ENT consultant) He said he would recommend that I be referred for physio. I asked him how he can refer me for physio when I have a lump, swelling on both my collarbones and as he said “its not his department”. He wouldn’t comment and said that was it. So less than 2 minutes after going into the room I then get asked to go.

This appointment was a week ago and since then I can feel a hard lump under the swelling above my left collarbone which is getting bigger. So that’s both collarbones with swelling and hard lumps underneath.

I spoke to the GP and she sighed when I said all I had was an ultrasound and she said that the ultrasound and the way I was positioned could have moved the swollen lymph nodes under bones, fat, muscle etc. She said that they were swollen lymph nodes

I am so confused. I don’t want cancer but I also don’t want a consultant to not take my lumps seriously. I feel like I am on an emotional rollercoaster.

The GP is going to send me for more blood tests and then she will examine me again. She said she doesn’t want to over investigate it but something doesn’t ring right with her about it all.

I really wished I had paid into private health care insurance but it is too late now. I cant afford to pay for a private MRI

The hard swelling on my right collarbone has been like that for months, it got bigger and has stayed at around 2-3cms.

I am considering writing a letter of complaint to the hospital but at the same time what is the point. I do understand that the doctor didn’t want to examine me for too long because of covid-19 but all he did was poke my shoulder with his finger and then grab the back of my neck