Over 13 weeks ago, I discovered a lump in my neck 3cm x 3cm can’t have been there long. The next day was put on a 2 week referal. Less than 5 weeks later I’m in the consultants office for biopsy results. He told me he’s pretty sure I have squamous cell in my tonsils or throat which has metatised into my lymph nodes. However there was a slim chance it could be a brancial cyst (I’m over 40 so the chances apparently are extremely slim) There was also a lump in my thyroid that needed a biopsy but was under another consultant due to it being the opposite side (still waiting on full results - only been told scattered infection markers?) He wanted to do a selective neck dissection urgently.
Im now 6 weeks post selective neck dissection and still struggling. My wound isn’t fully healed, Im struggling to turn my head to the left and when I do it feels as though there is something pushing into my windpipe then yesterday new bruising appeared around my collar bone area. Under my chin up to above my ear is numb I also have a swollen, tender area to the side of my scar/wound. I don’t know if any of this is normal? I was told just prior to going into surgery that they could now feel a lump in my salivary gland. After surgery I was told a lump had been discovered on my left tonsil and from what I can recall they have removed either a or some of a salivary gland?! Not sure which and I can’t find out as no one can read her notes!
My problem is that I still have had no results, I’m so stressed out with all this, I’m worried I’ve gone through this surgery for nothing. Everytime I call I just get told there are delays in the path lab. I got an infection in the wound 2 weeks after the surgery (it was assumed to be an infection) and put on a weeks worth of antibiotics. I haven’t seen anyone for a post op, no one has checked to see if it’s healing properly. I feel like I’ve just had this major surgery, kicked out the hospital and ignored. I call for advise and just keep getting told to wait for my post op but they can’t tell me when that is!
Sorry for the long message, I just don’t know what to expect and whether what I’m going through is normal.
Hi Mum. Sorry to read your tale. None of your worries are acceptable. I think it’s time to get PALS involved. You need an answer https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
Also ring your surgeons consultant and insist in an appointment
There may just be a technical hitch if the only people you are speaking to are admin
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi welcome from me DanI is right sadly we now have to be pro active, your hospital should publish a list of phone numbers tucked away somewhere. If you’ve got name if consultant try their medical secretary u usually find them helpful,on the odd occasions I’ve needed them. The length of time you’re waiting isn’t acceptable. Contact pals as well, yiu need to know the resukts and what plan if action is being taken.
In maeantime you’ve found us so rant away on here.
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Dani Thank you. It’s the surgeons secretary I keep speaking to who just keep fobbing me off. I understand there maybe delays but apparently it was marked urgent back on 19th October. The only answer I get when I ask about things I can and can’t do following the operation is when you feel up to it?
I don’t know anyone else who has had this done and don’t know what is normal or not normal for the recovery.
I’m so frustrated with all of it. I’ll try again today and if no joy contact pals thank you
Good evening Mum6, wow this does not sound pleasant reading, you should be continually checked, i think i was seen every two weeks after my surgery by my consultant or one of his team, you should have a head nurse who is in charge of you and looking after your needs who you can report to directly. I have never found speaking to a secretary very successful as you say they just fob you off, you are still in the early stages of recovery and need to be seen a.s.a.p. Half the time the consultant does not know what is happening and im sure he/she will be angry you have not been seen. I hope you get to see someone as it will take a lot the worry and stress away, wishing you all the best.
Chris x
Thank you I have been considering doing that, I don’t like to cause a fuss but I’m going out my mind now.
You won’t be causing a fuss. If PALS gets involved I’m sure it will speed things up. It might be as Chris suggests that your consultant doesn’t know what’s happening either.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Mum6
In relation to the numbness that you are feeling on the side of your neck. That is perfectly normal. I have had a neck dissection at different times on both sides of my neck and have the numbness you mentioned. It does slightly improve over time but I still have it several years after the ops. You do get used to it although it is a bit annoying.
Hope you get to see your surgeon soon to put your mind at rest.
Lyn
Sophie66
So sorry to hear what you are going through it sounds nothing short of horrific and absolutely unacceptable. I hope you take Dani's advice and get some answers and feel somewhat better soon. You are not making a fuss. Sending a huge hug Karen x
Hi Mum. I am so sorry to hear what you've been through. It sounds totally unacceptable. As others have said get PALS involved. You may also want to speak to your GP who may have more information sent to them from the hospital.
Don't worry about upsetting people at the hospital. I speak as an ex NHS person. Their job is to look after you and I don't think they are doing that at the moment. Without you taking proactive action others will also receive the same low standards of treatment
Hi Mum 6
Have been reading the comments and totaly agree with everyone your entirled to be fairly treated like everybody else.
If its not bad enough we have 2 put up with being told things that totaly change how we think we have 2 put up with people not doing they job properley
You stick it to them if you know what i mean and maybee ull get what answers on time like u deserve.
Good Luck and all.the best
Chris2123
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