Urgent Referral

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Hello all.

Firstly- if your reading this, thankyou for your time.

Around mid-September, my eldest daughter returned home from school full of cold. The joys of children in Autumn/Winter terms right? Myself and my wife came down ill with it the next day. I wouldn't say it was a bad viral cold - but I did have permanently running nose for a couple of weeks.  It hit my wife's chest (she's still got the cough from it some ~8 weeks later).. anyway. Late September I got over the worst of it and moved forward.

On the 5th October, I had a charity spinathon for Birmingham Children's Hospital and the Lingden Davies charity.  On the morning of - I woke up feeling suspiciously Covid'y.  I felt lowsy and had a persistent dry cough! I tested for Covid and it was negative and didn't want to let down the charities- so went to the spinathon and dragged my bike to the back.  Immediately after the spinathon - i was in a bad way and spent the remainder of the weekend in bed. That turned into quite a nasty sinus infection the following week. The weekend after I had lost my voice completely and was feeling terrible.

This lasted on and off till around the 18th October and that weekend I rested and felt I was getting somewhere back to normal.

At work on the 21st - I was chatting to a colleague where I felt a small lump in my neck. I've never suffered with swollen glands in my neck (I used to get them bad in the back of my head when I was a nipper!) So this was a shock too me, but the pharmacist told me all was normal considering my viral load. I spoke with my GP for the first time about this on the 30th October and they told me to keep an eye on them, but it was fairly normal.

I had a very stressful fortnight at work late October into early November and woke up on the 5th November with the lymph node in my neck now quite swollen and sticking out the side of my face. I had a really stiff neck and I could feel it up the side of my neck into the back of my head (almost like I get when suffering from a cold!) I had a persistent headache for a couple of days and mooched through.

As time progressed- I was feeling better (I'd say back to "normal" although my wife would disagree with that lol).. the swelling remained though, so on the 13th I returned to the GP. They first wanted to try a course of Amoxicillin which I did.  This reduced the inflammation around the lymphnode itself but they still remained sat there, rubbery lump! On the 18th I had a follow-up and the GP said it was now time for an urgent referral..

..and I've been in an absolute spiral since.

The week after the antibiotics finished - my stomach was an absolute mess. Everything I put in gave me bloat. Wind would not move - I was having to massage it through top and bottom.. alongside this - I also made the fatal mistake of Googling this.  I thought I had mental fortitude and strength- I was completely wrong.. 

I ended up in a situation where I completely lost my appetite, and didn't eat for 2 days. In a week - I lost half a stone and that fed straight back into the Google self-diagnosis and I was beginning to have more and more symptoms..

That weekend (23/24th November), I started to get some mild congestion again.. and the following week that turned back into a bacterial infection (confirmed Sputum sample).. I think (touch wood), this past couple of days I've been starting to get over it as I'm feeling more normal again and the mucus/phlegm isn't toffee anymore.

It's been so difficult to navigate what has been a 'genuine' symptom, what I've caused myself through severe anxiety and catastrophizing and what's been due to my body fighting another infection..  I've recovered weight - I'm probably ~3lbs down on where i was 3 weeks ago. I've never suffered fatigue, so I don't know what it truly feels like - but I have been incredibly tired this past few weeks.  However - in trying to mentally combat the negativity and anxiety, I've made myself get up and do things and I've had the energy to do these things! My only other symptom is incredibly sweaty palms and feet - but nowhere else.. no fevers.  I also am peeing a lot.  I have had a slightly hoarse voice this past 2-3 weeks, but I've also had a lot of post-nasal drip from this infection and the only way to clear it has been to sniff it back and bring it up!

I had bloods done early November and the GP said they were 'perfect'. My GP sent me for a Chest X-Ray this week and that came back yesterday clear.  

My referral is Tuesday. And I'm absolutely bricking it.. I'm 33, father to two incredible girls and a beautiful wife. And this last few weeks, through my own doing - I've mentally collapsed to levels I never knew was possible.

My wife's been an incredible beacon of positive light and energy so far. But it's been hard speaking to some colleagues and family about it as they look at the lymphnode and give it the negative energy replies like it's already diagnosed and I'm a gonner. I cant deal with it.. 

Anyway - I've found it better when I can speak to people about it, even if it's just floating it out into the ether there.

Thanks again for taking the time to read this.

  • Hi  and welcome to the Macmillan Community but so sorry to hear about your ongoing diagnosis.

    Navigating the diagnosis journey can be such a stressful and challenging time but should you get diagnosed with one of the many types of cancer then getting support from others who are dealing with the ‘exact same' cancer type can help a lot.

    I have been on my incurable blood cancer cancer journey for over 25 years. I have/had to very rare types of Lymphoma..... first diagnosed at 44 when our 2 girls were 14 and 18…… I continued to work for 12 years in a demanding teaching job and had various treatments over the years but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 69 in Nov and as a family we celebrated 9 years since my last treatment, I am living a great life and we continue to look forward to what else life has in store first us to enjoy....... I say this as not a cancer journeys have sad endings.

    Should you receive a cancer diagnosis then do have a look through THIS LIST where you will find all our dedicated cancer support groups listed.

    These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from members who are navigating the exact same journey.

    The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

    Do get back to me if you want to chat further.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi. This is the worst time, this waiting. 
    You’ve discovered that Google isn’t your friend so maybe don’t look any more? 
    if you aren’t sleeping see if your GP can help. 
    90% of referrals aren’t cancer so fingers crossed

    Which hospital department have you been referred to? 
    Hugs 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Many thanks to you both for your reply.

    Yep. Google is not your friend! I have avoided it for the last week.

    I am referred to ENT! 

  • I am referred to ENT! 

    Have you an appointment yet? If not keep chasing. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Yea - I have my first appointment on this coming Tuesday.

  • Take someone in with you to be an extra pair of ears. Hopefully it’s nothing sinister but if your consultant suspects something make sure you don’t leave till you understand. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • I thought I would update this with current progress.

    I was due for my first appointment on the 10th with the ENT consultant.  Unfortunately after travelling to the hospital and going to check-in, the receptionist informed us that the clinic had been cancelled about an hour before our arrival as two of the consultants had to leave sick.

    So it was rearranged for Tuesday this week (17th).

    Frustratingly (and as anticipated) its leading to more tests before a diagnosis.  They obviously need to do a biopsy on the lymphnodes to understand what's causing it.

    Interestingly - upon inspection with his camera up my nose - he discovered what he thinks are my adenoids fully intact (and quite large). He's not 100% sure that's what they are, but he's pretty confident. The fact they are there explains a lot - I've always been a mouth breather, poor sense of smell, always congested and always prone to sinus infections! Who knew ay?! As he's not 100% convinced- he wants to do a biopsy of the tissue to confirm.

    These are down as urgent tests - but are 2-3 weeks away.  I've chased appointments today and they are being processed as we speak.

    It's a case of having to find peace with the way the UK operates at this time and the state of our NHS.