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The struggle during a COVID style diagnosis

Thunderous
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Hi everyone, hope you are all keeping well.

During a trip to the orthodontist on 23.03.21 they noticed white lesions with swelling on the left side of my tongue accompanied by several swollen lymph nodes in the neck under the jaw on the same side. 
I had also been experiencing some hoarseness and also tingling sensation on the left lower lip and chin and left earache.

The next day the hygienist noticed they issues and both recommended I saw the GP with a view to being put on an emergency referral and sure enough the following Monday the GP examined me and agreed this should be the case.

I have since had a large slice taken from the side of my tongue to which I was very unprepared to the possible effects thereafter and have only just started eating properly again now. And on Friday had an ultrasound on my neck.

The hospital operates an app where you can log on and see your diary of visits past and future and also after visit summary reports and test results etc.

all was updating regularly and almost instantly, keeping me in the loop and thus my mind clear and sane. Things seem to have stopped at the point of biopsy tests and nothing has been updated not even the after visit summary.

So here we are it's now the 9th of May and my mind is starting to go crazy with worry.

I struggle with squamous cell carcinomas on the skin so I guess my anxiety levels naturally rise but these last few weeks seem to be endless. 
 

Is there anyone else out there that seem to be struggling with the wait in times where the hospitals are so pushed? It feels like every breath I take is putting me more and more on edge. Ummph 

Any help/advice much appreciated

 

  • Hello Thunderous

    I'm sorry to hear about the health concerns that you have at the moment. I think that most of our members here will understand how difficult this period of waiting for results can be and it's natural to feel anxious. 

    As it's been a few weeks since your biopsy, and you've not heard any news, you might want to give the Consultant/team secretary a call. It may be that the delay is due to waiting for your results to be discussed at the MDT (multi-disciplinary team) meeting, which is a common practice. 

    If you'd like to chat things through with one of our team of nurses you're welcome to call them on 0808 800 4040 (Monday to Friday 9 am to 5 pm). 

    Keep in touch Thunderous and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Thank you for your reply, I contacted the maxfax dept today and was greeted by an angry sounding lady who was dismissive, rude and unwilling to put me through to the secretary's. I will be lodging a complaint when I arrive for my appointment on Friday. It's hard enough going through these things without that level of unprofessional bad attitude. The rest of the team I have seen have been excellent so I was not expecting that today. 

  • Offline in reply to Thunderous
    Hey!! I’ve stumbled across your post and couldn’t leave and run! Have you ever heard of the medical term geographic tongue or fissured tongue? I ask this because I have white lesions and bumps on the side of my tongue have for years and was diagnosed with the above conditions, I also have lymph nodes palpable but from lots of research it’s quite normal to be able to feel them pea sized. Usually potentially sinister and to be investigated if larger than 1cm in small diameter!! My point is there’s other explanations for these things than the big C and I hope you get some positive news ASAP!! Also not all dentists are aware of those conditions - when I was 17 (8 years ago) my previous dentist sent me to maxi facial for a biopsy which was clear and my new dentist (safe to say ex new dentist) literally gave a face of disgust and said to me “why is your tongue like that” ??? Honestly not sure what some of them are studying ‍♀️ All the best
  • Offline in reply to Becksxxx

    Thank you for your reply, geographical tongue was ruled out and due to the size and amount of lymph nodes scans have been done. I hope the results are not bad or turn out to be something not so sinister. The other symptoms are making me nervous I guess and my previous brushes with SCC make me on edge. It feels like it's going on forever!

  • Offline in reply to Thunderous

    Hey all thought I'd give an update, arrived at my appointment on Friday 14th with a view to getting biopsy results etc, after waiting 40mins to go into the appointment I went in and no results were back so came away very stressed and displeased. After a stressful sleepless few nights I contacted the max fax team at the hospital on monday where they told me the biopsy results were in and they would setup a phone call, then got a call requesting I had a clinic appointment on Friday. Today I have had a call requesting a telephone appointment..... the moral of the story today is that for good reason I moved my care to London from Devon due to failings and it looks like I will be incorporating this there too. I honestly don't know how they expect you to maintain any sanity during what is a very scary time waiting on a cancer diagnosis...or not hopefully! 

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