Rugby World Cup 2015 – an unforgettable tournament…

Peter LittlejohnsIf you are an ‘All Black’ from New Zealand you will be content and happy.

Rugby supporters from all the other participating countries will have painful memories of what could have been, and some, especially the English, will be left with the reality of what did happen (the only host nation not to leave the pool stage). For the Welsh the recurring theme throughout the World Cup was the health (or lack of it) of their players. It all started with the final pre-tournament friendly with Italy on 5 September. I remember it well, Wales scraped though 23-19 but at the cost of serious injuries to two of their key players. I was on holiday in France at the time and had just completed cycling up Mont Ventoux in Provence three times in 24 hours, seeking to become a member of the Club des Cingles. But even that elation and endorphin surge was not enough to counteract the despair of seeing Leigh Halfpenny and Rhys Webb being carried off the pitch and out of the World Cup. But this was just the start, by the time Wales exited the World Cup in the quarter final against South Africa on 17 October they had lost another six of their back division.

However, it was not only the Welsh players’ health that seemed to be at risk. On Saturday 10 October at the Wales and Australia match (Wales could not score a single try against 13 Australian players after two of them were sin-binned and lost the match – but still went through to the quarter finals), my daughter, Anna (a third-year medical student  at Leeds), commented that she thought that my neck looked swollen. Over the next few days ruminating on the match and the great family occasion, I remembered what she had said. It triggered the memory that Tercia my wife had said something similar a few months previously when we were comparing neck lymph nodes (as you do) after a double bout of a mutually shared nasty cold.

Peter and family

Me with my wife Tercia, my children Anna and Sam at Twickenham for the Wales versus Australia Pool A (so-called Pool from Hell) match

A careful self-examination concluded that I had a lump in my neck.

Tuesday 13 October. I talked to a lifelong medical friend who is a radiologist and arranged for an ultrasound scan on the Thursday.

Wednesday 14 October. I went to my local GP who confirmed the lump and advised that I should have an ultrasound and some bloods with a referral to Guy’s. At that time we did not consider that an urgent referral was required but I had the bloods done at Guy’s the same day. 

Thursday 15 October. An ultrasound (at Xray-Xpress would you believe) confirmed one large isolated lymph node (2.7cm by 0.6cm). No other nodes were found and a chest x-ray was clear.

Friday 16 October. Back to see my GP, ‘you can make that a two-week suspected cancer referral now’.

Saturday 17 October. Twickenham quarter final – Wales versus South Africa. This time watched at home. Difficult match to be a supporter as Tercia is from South Africa, although she still kept cheering George North as she has adopted Wales when South Africa are not playing (and knows the Welsh players better than the South African ones). However the picture tells it all – South Africa beat Wales in the quarter final with a last-minute try

Peter brave face

One brave face and one happy face after South Africa beat Wales in Quarter final

Wednesday 21 October. I am seen at the rapid referral lymphoma clinical at Guy’s Hospital with a biopsy booked for the next Friday.

Friday 23 October. Biopsy abandoned after incision was made and oozing would not stop – I had a severe cold and chest infection at this time and had taken aspirin. (‘Ok, stupid I know – but I can now confirm that aspirin really does thin the blood.’) Rebooked for following week.

Saturday 24 October. Back to Twickenham for the semi-finals – South Africa versus New Zealand. I adopt South African credentials but even that is not enough – South Africa beaten by the All Blacks.

Peter rugbyPhoto taken before South Africa lose to New Zealand in semi-finals

Sunday 25 October. Australia beat Argentina in other semi-final.

Wednesday 28 October. Second biopsy attempt is successful. Three cores taken and I now look like the Elephant Man with the resulting neck swelling. 

Friday 30 October. South Africa win the bronze medal comfortably against Argentina.

Saturday 31 October. The day of the final and New Zealand are confirmed as the best team ever.

Sunday 1 November. Rest day and I read Geraint Thomas’ The world of cycling according to G. Essential reading for anyone (particularly Welsh cyclists) needing a diversion.     

Monday 2 November. Post-tournament review of England’s dismal World Cup performance starts in earnest.

Wednesday 3 November. The day of my follow-up when I am to hear the results of the biopsy. I knew that I was in trouble when the consultant was accompanied by the oncology nurse practitioner –  metastatic squamous cell carcinoma, primary unknown with an appointment at the ENT oncology clinic in two days’ time on Friday and  a PET scan  on Thursday. That night a hand-posted appointment letter came through my door stating that the appointment was at 1.30pm.

Thursday 4 November. PET scan today. Sam, my son, had stayed overnight and the three of us went into St Thomas’ for 10.30am. Scan finished by lunch time but by then I was very dehydrated and hungry having been nil by mouth over night and water since 6am. Combining this with the uncertainty of what type of cancer it was meant an emotional lunch at the St Thomas’ cafe overlooking the Thames and Houses of Parliament. Checked my appointment for next day – the computer said 1.30pm and not 10.30am so decided to go with that one.
 
Friday 5 November. Now this is a day that I will really remember. Tercia came home at 11am; we  were having coffee when my mobile phone went off – ‘It is the Consultant Oncologist – where are you?’ I explained about the letter and the 1.30pm appointment but she said we needed to do lots of tests. I hastily dressed and Tercia and I walked into the clinic at 12am. Checking in at the reception I was presented with a package. I opened it to reveal an admission pack for surgery on the following Monday morning, 9 November. Good news – it looks like they know where the primary is from the PET scan and it is worth operating on. I am then taken by a nurse to get weighed and measured and sent to a second waiting room. My mobile goes off:

‘Hello it is the hospital here.’
‘Yes I am in hospital.’
‘This is the MRI scanning department at St Thomas’, can you come for a scan at 2pm today?’
‘I am at Guy’s but should be able to get across.’

I am called by another nurse to go into a third waiting room. Getting closer. I am then called in to see the doctor – in fact two doctors. The surgeon says it is throat cancer (Uh Oh, not good news) but it is in the tonsils (but I had my tonsils out!). The good news is that it looks like it has only spread to one local lymph node. There are basically two sorts of throat cancer: one linked to smoking and drinking – prognosis bad; the other linked to HPV  infection – prognosis good. They will take out the primary on Monday and test for HPV status. So I am left wondering why am I hoping for an infection that can be spread sexually!!
 
The surgeon speaks:

‘You will need an MRI asap.’
‘I have one booked in 1.30 hours’.
‘That is good, they are often difficult to get. We now want to check the other nodes in the neck.’
‘When?’
‘Now … you will also need to go for a pre-op assessment for Monday – this afternoon.’

So I go next door and have four nodes in my neck biopsied and they are checked immediately. Fortunately these are not core biopsies but needle aspirations – all clear, just reactive changes .

So it is now 1.30pm and Tercia and I are just leaving the tube at Waterloo on route from Guy’s to St Thomas’ when the mobile goes off again:

‘Hospital here.’
‘Which one?’
‘St Thomas’ MRI unit. You are due at 2pm, can you come earlier?’
‘I will be there in five minutes.’

I have the scan and return to Guy’s hospital for the pre-op assessment. Just before entering the tube, my mobile goes off again:

‘Hospital here.’
‘Which one?’
‘Guy’s Hospital Nuclear Medicine. You are booked for a renal function test – can you do Monday?’
‘Nope, having an operation on Monday – can do Wednesday.’
‘OK Wednesday it is.’

Back at Guy’s more bloods taken, pre-op assessment done and we leave for home at 4.30pm. Who said the NHS is slow !

That evening I inform my work colleagues that I will not be able to attend an international workshop in Switzerland the following week. I had organised the workshop on patient and public involvement at the Brocher Foundation Geneva and was due to fly out the following Monday. I had hoped to get there before the treatment started but it was not to be. Fortunately I have wonderful colleagues who took over all the organisation.

Saturday 7 November. Rendezvous with geographically scattered family members up North in Leeds. Tell Juan and Jacqu my stepchildren what is happening and have a pub lunch and walk on Ilkley Moor with my daughter Anna.

Peter YorkshireMe and Anna walking on Ilkey Moor, Yorkshire. But not ‘baht ‘at’. Hat and scarf provided by Anna

Sunday 8 November – have a rest.

Monday 9 November. Operation day – 7.30am Tercia and I are in the Surgical Admissions lounge. Very functional – see loads of people.

  1. Biobank person to consent me in order that my cancer can be used in research.
  2. Nurse who gets me to confirm who I am, my home address and why I am here and attaches two labels to my arm and leg.
  3. Surgical fellow who marks the spot with an X and gets me to confirm who I am, my home address and why I am here.
  4. Another nurse who gets me to confirm who I am and home address and why I am here and gives me anti-DVT socks and tells me to get changed into a gown.
  5. Anaesthetist who asks about my medical history and asks me to confirm who I am and home address and why I am here.
  6. Nurse to check that everything has been done and to check who I am, where I live and that I know why I am there.
  7. The theatre nurses come to take me to theatre (after confirming my name and address and why I am here)

I walk off to theatre with the nurses, and detect a Welsh accent. I discover one of the nurses is from Swansea my home town in Wales. In theatre (after confirming who I am and my address and why I am here) I meet the surgeon and then drift peacefully off to sleep, feeling confident that at least I know who I am, where I live and why I am here. Wake up in post-op, feeling fine. Get transferred to the ward and see Tercia and Anna (who has come down from Leeds to see me). Discharged at 6pm by Surgical Fellow. I am able to introduce my ‘diagnostic team’ to the ‘treatment team’.

Tuesday 10 November. A bit sore but manage to Skype into the Geneva workshop for an informal evening meeting with the core organising team.

Wednesday 11 November. Stuart Lancaster resigns as English National Rugby coach. Renal function tests today at Guy’s. I am able to wander around in between blood taking and meet colleagues to sort out my ‘departure’ for the next six weeks. Close USA friend and colleague flies over from the Geneva workshop to spend a few days with us.

Thursday 12 November. Close American friend cooks American pancakes for breakfast. He is an expert (indeed all his culinary skills are concentrated on pancakes – that is all he does). Have a ‘formal’ skype with Brocher in the afternoon. It is so good to have the support of best friends at this time. I am overcome with emails of support and kind words.

Friday 13 November. Close friend flies home early morning. Slight contretemps in the street at 4.45am as two taxis have been ordered by two people for same time – all sorted when second one arrives.  Meet with Oncologist at 10.30am and in the circumstances it goes rather well (nearly two hours). It is strange how your parameters of what one considers ‘good’ can be recalibrated. The histology and further tests confirmed that it is an eminently treatable tonsillar cancer – 90% five-year survival was their best bet – linked to HPV and not the smoking and drinking type. However, to achieve this success rate the treatment regime is aggressive. Six  weeks of radiotherapy five days a week (with no break), together with chemotherapy at start and finish. We discussed the new drugs and they keep them for renal failure patients – but only for the side-effect profile and not effectiveness. They have ‘state of the art’ radiotherapy equipment – this is her research interest. However, I am beginning to realise that the chemotherapy side-effects seem like nothing compared to the radiotherapy. This is because of the primary location of my tumour – my larynx, mouth and lower neck will take a hammering. So eating will be difficult and a significant number of people end up with a nasogastric tube to keep their nutrition levels up. However cognition is less impaired than with chemotherapy. The consultation  finishes with a nasal endoscope to check the primary site.

The tests that I will have over the following week include assessments of my hearing and dental health. My  ‘mask’ has to be designed and I have to meet the MDT including the physiotherapists (to keep my neck and jaw muscles going), the nutritionists to sort out my diet and the speech therapists because my vocal cords may be affected. So I will probably start the radiotherapy on 30 November. I hear that the department had to decline participating in a trial comparing cisplatin with cetuximab because the NHS was unable to pay for the new drug. I am, however, likely to be in a small local trial. I admit to being the founding Clinical and Public Health Director of NICE.

Saturday 14 November. Hear about Paris bombings and shootings – suddenly my position does not seem so serious. Some of the workshop delegates have gone home via Paris but we believe that they are all right. In the afternoon I go to see Nicole Kidman in 51 at the Noel Coward Theatre. It is about the life and work of Rosalind Franklin and her contribution to the discovery of the structure of DNA. A must for all ‘King’s people’ and it demonstrates the reason why all research has to be multidisciplinary.

Sunday 15 November. Rest day.  

Monday 16 November. See Audiologist. Surprisingly my left ear is fine but right ear has some high tone deafness (I had thought that I was pretty deaf). Then on to the 26th floor and the dentist!! Good and bad news. The bad news is that eight molars have to come out, the good news is that it will be under general anaesthetic on the following Thursday.

Tuesday 17 November. Pre-treatment haircut today and am preparing for beard to go over the weekend.

Wednesday 18 November. Another rest day. Decide that as so much has happened to me and my perception of my health in the last month and I am likely to forget the details, I should really think about writing them down. So I have decided to write a blog…and here it is.

Thursday 19 November. Arrived at Dental day hospital at 1pm, left at 3.30pm minus eight teeth. The admissions system is very different to the main surgical reception, smaller and less frenetic but equally efficient. I must be very sensitive to anaesthetic drugs – I seem to go out like the proverbial light. I expected severe post-op pain and swelling but it did not happen. Most likely due to surgical skill but also perhaps because of some traditional remedies that were applied at home.  

Untitled

Traditional post op management for tooth extraction in South Africa

Friday 20 November. Still no pain or swelling, which is excellent, so I should be able to get my mask fitted on Monday. I am working at home on the computer when phone goes at 3.30pm. Voice asks for Peter Littlejohns – now in the past a call at this time has usually been a rubbish cold call, but now because of all the hospital calls I say ‘yes’ politely rather than my usual gruff ‘yes… and who gave you this number?’. Although I could not imagine what the hospital can want with me, as I already have all my dates and times, or had I? Monday morning radiotherapy mask fitting and the CAT scan (only new type of scan I have not had yet), meet the MDT team on Tuesday with radiotherapy starting on Monday 30 November at 4.30pm. But it is the hospital – the Cancer Day Centre – who inform that my first dose of chemotherapy will be on the morning of Monday 30 November (letter in the post). But they would like to see me for a pre-chemotherapy assessment tomorrow.

‘But tomorrow is Saturday.’
‘That is correct, tomorrow at 9am at the cancer day centre…can you come?’
‘Yes of course.’

So Jeremy Hunt, hospitals do already work routinely on weekends. My mind had been on the imminent junior doctors’ strike as I had just watched the BBC interview with the Secretary of State for Health responding to the 97% of junior doctors (75% voted) who feel that a ‘strike’ is the only way to get him to listen. I will come back to this issue of medical staffing at a later date, as I have a professional interest in assessing staffing levels based on evidence of safe practice and not affordability. But of course I now have a personal interest – I am a patient who could be affected as the dates of action coincide with the start of my treatment. I was a medical student when the doctors last went on strike in November 1975 under a Wilson labour government. The junior doctors took industrial action due to anger over new contracts, which they argued would result in them working excessive overtime for paltry pay…sound familiar?

Anyway it is now time to stop the blog for the time being. I have my diagnosis and my treatment plan… I am clean shaven and ready. I will blog again when my treatment is finished in six weeks. But ending on good news I have just received a confirmatory email that my paper, in collaboration with international colleagues, entitled ‘Accounting for Technical, Ethical, and Political Factors in Priority Setting’, has been accepted for publication in the journal Health Systems & Reform as part of a special edition to coincide with an international conference on Universal Health Coverage at the end of January 2016 – I wonder if I will be fit enough to attend?

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Ready to commence treatment

Concluding Remarks

My main observation to give you so far on my hospital experience as a patient is how wonderful the NHS is and more importantly how dedicated the staff are who work in it. I know that people will say that I am an ‘insider’ and have had special treatment, but I really believe that it is not the case. I have taken a good look around all the waiting rooms (and there have been many) in the last four weeks and the empathy, professionalism and efficiency of everyone is palpable.

I have being saying professionally for many months (years) that the NHS is facing its greatest challenge on how to maintain quality in an extremely tight (and it will get worse) financial environment: latest figures from Monitor show NHS Trusts in England running a deficit of £1.6 billion so far this year – the highest ever . The whole future of the NHS will be questioned. It remains the best system in the world and the Government will need to be transparent and honest on how the future of health care is to assured.

But I will close by returning to the World Cup theme. Sadly this week the death was announced of Jonah Lomu the great All Black wing at the age of 40 years. He had suffered with kidney disease for a number of years and had had a transplant in 2004. He had attended the World Cup 2015 where he saw South Africa’s Bryan Habana equal his record 15 World Cup tries, but not surpass it. Some may think that my personal health events have eclipsed my enjoyment of the World Cup. Not so – we had a grand trip to Cardiff for the opening match between Wales and Uruguay, a visit to the Olympic Park to see South Africa versus the USA, and the Wales versus Australia match before my health was investigated. The semi-final between South Africa and New Zealand was always going to be a bit depressing. In the middle of the tournament we were joined by friends Beatrix and Sakki who fly over from South Africa to participate in the fun.

However one thing is certain – I will never forget this World Cup.

To be resumed…

Peter Littlejohns
Professor of Public Health, King’s College London

Comments (13) Add yours ↓
  1. Zelda

    Peter I am in awe of a man so positive after receiving such shocking news. You are in my prayers and I believe you will be healed completely.

    November 20, 2015 Reply
  2. Beatrix Nieuwoudt

    Thank you for sharing with us, Peter!

    November 22, 2015 Reply
  3. Carole Ivins-Whatley

    Peter, my husband was diagnosed with throat cancer (HPV virus) Dec 2014. Your path so far has mirrored his. He was treated at the Beatson in Glasgow and had 6 weeks of radiotherapy with two doses of chemo. He was given the ‘all clear’ in June. He did not need a feeding tube, although did lose a lot of weight due to sickness from the chemo. He kept quite a detailed diary so if you would like any info or support we would be happy to share. (PM me via email) We wish you well, and a full recovery.

    November 26, 2015 Reply
  4. Roger Kirby

    Amazingly brave account of a cancer “journey” from dear Peter, a doctor for whom I have the greatest respect. His disclosure highlights the shock of a cancer diagnosis and the trials and tribulations of the treatment pathway. Nice plaudits for the NHS. I am sure that all our readers will join with me to wish him the very best of luck.

    November 28, 2015 Reply
  5. David Murray

    Peter – Hope you’re doing well. Let me know if I can help at all. Best wishes.

    December 1, 2015 Reply
  6. Rona McCandlish

    Peter: thank you for sharing your tremendously unexpected journey with your unique insight, clarity and generous joy at life. Here’s tae ye pal!

    December 2, 2015 Reply
  7. David Spackman

    Peter,
    I read this with much admiration and interest, well done. I am 99% sure we worked as SHOs together at the Westminster Hospital many years ago !
    All the best for the rest of your treatment,
    David Spackman

    December 10, 2015 Reply
    • Peter Littlejohns

      David

      Thank you for your comment.

      I remember you well……good times

      best wishes

      Peter

      May 18, 2016 Reply
  8. Ian Wylie

    Dear Peter

    Fantastic blog and, despite the uncertainty and anguish, a remarkably upbeat account of your own journey and the quality of your care in the NHS (and the quality of the Rugby World Cup!). Thank you for writing and sharing this and every best wish for your treatment and recovery.

    January 7, 2016 Reply
  9. Anne Stephenson

    Dear Peter
    I am thinking of you and your family and wishing you all the very best.
    Being a New Zealander, rugby is in my blood and Jonah Lomu a great favourite so I ‘get your drift’ as we say in New Zealand. And I loved the World Cup. What mastery!
    See you around he Department at some point, Anne Stephenson

    January 16, 2016 Reply
  10. Paul dupre

    Fantastic blog, amazing brave person, but I am wishing you all the very best in the future. I know this may be very doubtful but are you the Peter Littlejohn I grew up with as a childhood friend in browning close, Cardiff? I have been told he became a doctor. Good health and for the future, Paul Dupre

    May 17, 2016 Reply
    • Peter Littlejohns

      Paul thank you so much for your comment. I was brought up in Swansea and visited Cardiff only for the international rugby matches. How strange to have 2 Peter Littlejohn(s) in South Wales

      Best wishes

      Peter

      May 18, 2016 Reply
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