Saying hello and describing my journey so far

Hello to everyone in this group.  I’ve just joined although I’ve been on a 5 month cancer journey thus far. Like many of you I have metastatic squamous cell carcinoma caused by HPV, probably somewhere in the area of my tonsils/tongue.

 I’ll describe my journey so far as it may help someone; it’s a bit long winded but I want people to be able to ask me questions if they are in a similar position and have concerns.  I know each of our cancer journeys are unique and personal to us and our family and friends but the twists and turns of mine may strike a chord with someone.

Maybe this is also just a little cathartic for me.  If that is the case I apologise!

Back in September 2019 I discovered a lump in my right neck whilst doing a long drive home from Manchester.  You know the feeling… Tired from sitting in the car and rubbing your neck to ease the tension.  What I found was hard and only on one side.  At first I put it down to an infection and kept a watch for a few days.  4 or 5 days later when it had not changed, I rang my GP late in the afternoon.  They got me into see the duty GP at the local community hospital that night.  Incidentally; on reflection I’ve not had any of the classic symptoms you read about for oropharyngeal cancers.

From there things moved quickly with an ultrasound 2 weeks later.  They were concerned and found somebody who could do an U/S guided needle biopsy at the same time so I did not have any delay.  That was on a Friday.  The following Monday at 7.30 am my GP was on the phone to me putting me on the cancer pathway.  That afternoon I had a chest X-ray and the same day I had the GP texting me to say that was clear.  The following morning bloods were also taken and I had my first O/P appointment with the consultant.  The results of the needle biopsy were negative, but my consultant still wanted to take out the enlarged level 2 node. I am grateful he insisted on doing that.

The neck dissection was arranged for 2 weeks later.  I am so appreciative of the way the clinical team moved heaven and earth to get me in ASAP as I had a long standing holiday to the USA booked.  They ensured that the time was there to allow me to recover from the operation and make that holiday.  The dissection was done by an ex-colleague (which I initially found a little concerning) and I spent a night in hospital.

In the follow-up appointment they broke the devastating news that the lymph node was metastatic cancer.  This gave me 2 days to decide to go or cancel my holiday.  Talking through the risks I decided to go and whilst I was away sort out all the test and scans so that they commenced when I returned.  That worked for me (actually us as my wife is most definitely part of this journey).  We had time to come to terms with the situation and I walked off the plane and, literally, straight into MRI and CT/PET diagnostic scans.

The scans indicated right tonsil and back of the tongue as sites.  I was scheduled for biopsies at the first theatre slot in the New Year.  Again, I am grateful for being allowed to enjoy the festive season before the operation.  This operation was day surgery and I went home late that evening.

The neck dissection was not really painful, but the tongue and tonsil biopsy was excruciatingly painful.  In the end the GP prescribed me morphine, but I seem to be one of the few people that do not gain much benefit from that drug!  After 10 to 14 days everything had settled down.

Before the biopsy operation I had discussed my tertiary options with my surgeon at the local DGH (I live mid-way between hospitals).  My local DGH (for this cancer) only does the work-up and thereafter you are referred on.  It is well worth doing research on your options to give you the best chance of good outcomes.  Both of my options were good tertiary centres, but I opted for the one that worked very closely with my local hospital as the communications between hospitals is key to successful treatment.

The follow-up was 10 days after the operation.  I was told there was no sign of cancer in the biopsies.  That was on the Monday.  That Tuesday afternoon I was seeing my local hospital surgeon and my tertiary surgeon together to discuss the next steps.  This meeting occurred immediately after the MDT where they discussed my case.  For me the recommended option was a further neck dissection to remove the remaining lymph nodes and removal of the tonsils.  They may also do further tongue biopsies.  That would occur 8 days latter and involve an overnight stay.

From my experience of the biopsy less than 2 weeks earlier I knew that pain was going to be my worst enemy.  I took time to discuss pain management with the anaesthetic team – that was worth while as I managed much better.  I also did some research and that indicated that, clinically, clear honey helps reduce pain in (children’s) tonsillectomy; I believe it helped me.  Recovery time was again around 10 to 14 days, although my skin is still very sensitive where the nerves were cut.  That will get better.

The follow-up again saw no sign of cancer in the tissue removed.  In fact, the surgeon said he was so amazed that he took an extra 90 minutes checking me and called 3 consultant colleagues into theatre to make sure he had not missed anything!  That’s good news, but I am left bemused as to what has happened.  I double checked that the pre-Christmas biopsy PET scan were actually correct; and they are.

I am back in another week to discuss options for radiotherapy, but I think this is unlikely at this stage.  Instead I’ll be on what I call “cancer watch” for the next 5+ years to catch anything really early if it develops.

My journey so far has been rapid.  I’ve introduced delays through taking a holiday and Christmas got in the way.  Personally those delays were worth their weight in gold in mentally preparing us for what was to come. 

I can’t fault the NHS for doing everything possible.  I can say that individuals in the clinical teams have acted with the upmost respect and involvement of me.

Possibly I am lucky having worked in senior non-clinical roles in the NHS for nearly 2 decades.  This has included various DGH and cancer networks.  It has given me confidence to deal with the system and work with the experts as equals in making decisions about my care.

I am happy to discuss my personal impressions of treatment and what has worked for me; clinical risk decisions, eating, pain management, recovery etc.  I am also very happy to discuss the issues of having a diagnosis, but not having a primary site.  This has a very strange mental effect on me.  I like to have a “known” I can deal with; so the next couple of weeks whilst we come up with a long term strategy will be interesting.