Treatment regime is complete

Littlejohns postreatmentToday is Sunday 23 January 2016, which means that my two-month treatment programme is finished. Following initial surgery I had two bouts of chemotherapy on the first week and the fourth week (Monday 28 December official Boxing Day) and radiotherapy every week day and occasional Saturdays and Sundays when the machine was oversubscribed. I actually completed the radiotherapy two weeks ago, but because my oncologist says the side-effects of the radiotherapy are at their worst two weeks after the last dose, I am still counting this period as my treatment phase, and anyway (as she was right – she always is) I only now feel fit enough to contemplate writing it.

Tomorrow my recovery starts formally.

Early into my treatment I initially decided not to do a blog on my treatment experiences. The diagnosis blog that I wrote previously (Rugby World Cup 2015 – an unforgettable tournament…) seemed important because as a patient I was amazed at the speed and the precision of the decision-making process and knew that I would never be able to remember all the details. However it is one thing keeping a diary and another to make it public. I thought long and hard about making it into a blog. On the one hand it was sharing my experiences with others who perhaps may be helped in preparing themselves for a similar challenging period in their life, on the other hand it felt rather a narcissistic thing to do. On balance, judging by the responses that I have received, it may prove useful to some people. Of course those that did not like it or thought it was inappropriate would be unlikely to respond, so I do have a biased response. Perhaps the response that could be interpreted as being most questioning was from one colleague who commented that they knew nothing of my illness until the blog link was put in the departmental newsletter by the Head of Department and thought that ‘I was brave to do it’. The email then went on to say that they had once had a difficult hospital experience with their family but had felt that they could not talk about it and was now pondering which was the best way to deal with these issues. I was sure that for my diagnostic phase it was therapeutic for me to relate the tale. I was not so sure about the treatment – I agree it seems more personal.

Another response to my blog was a number of people reporting that they had colleagues and friends with a similar diagnosis with good results. Again, I was pleased to receive these although aware of biased samples. But also all too frequent were emails from contemporaries who declared that they and their loved ones are suffering with a range of diseases. Although life expectancy has increased considerably, it does seem as you enter your 60th decade that pathology is not far around the corner.

In general the responses were very supportive. This included emails from two very eminent health service researchers who specialise in patient experience. They thought the blog represented good primary patient data that could be used by patient experience researchers themselves. Not quite what I had in mind, but there you are. Anyway talking to Tercia my wife, who has nursed me through every minute of the last three months, she felt that I should finish the job. So here we go.

But before I start, the most fundamental thing to highlight and what impressed me most throughout all this upheaval was the importance of support mechanisms. I am truly blessed with a wife who took me to every hospital episode and provided care 24/7 at home. And two lovely adult children who escaped from their hectic careers to visit me during my treatment in hospital and at home and were always at the end of WhatsApp or the phone. I now fully understand the importance of the charitable sector, who provide support for people less fortunate than I am. I also appreciate the working environment, both mine and my wife’s, in being so accommodating at such a traumatic time. Finally the vital importance of the multidisciplinary team cannot be emphasised enough. Too many people to mention here, but Hannah and Tina stand out as always being there for me.

The last three months can be summarised as a period full of paradoxes. At one level, the time has gone so quickly, at another level each 24 hours has engendered more mood swings and ebbs and flows of optimism than in previous years. You will be pleased to hear that I do not intend to take you through a day-to-day account, but to highlight some of the emotions and tactics that have helped.

The first is to never assume that you can ever predict or understand the sequence of symptoms. I am sure in general they follow a pattern, but individually they can fluctuate and just have to be accepted.

Second always assume that the worst can happen – for me the first occasion was an additional visit to the Acute Oncology Unit with a chest infection. Fortunately it did not require an admission, just antibiotics. Then towards the end of the treatment period at the start of the last week of radiotherapy, when I thought things would be manageable, retching and vomiting got out of control and after three days of trying, I ended up being admitted to hospital having lost 10% of my body weight over the previous week – feeling very dry and very miserable. This admission involved the introduction of a nasogastric tube for fluids, food and medication. And of course I had to be a patient with a very high pH stomach, which meant many trips to the x-ray department to confirm its location in the stomach (nasogastric tubes can only be used when fluid extraction demonstrates a pH below 5.5 to show it is in the stomach). Interestingly enough I can recommend that the best time for a chest x-ray is 3am. You get from the ward to the x-ray department, are seen immediately by an on-call consultant radiologist, have the location of the tube confirmed and are back in the ward in 10 minutes.

Whereas a 3pm visit can take two hours!

Much has been said about people not wanting nasogastric tubes – and I indeed started with that view. I then became more pragmatic, but in the end could not wait for one to go down. I am still not sure why there is this reluctance, it may be something to do with admitting that you are really ill and cannot do the most basic of functions, eating and drinking. Or something about how vulnerable people look sitting in hospital corridors with their tubes down. But having been that person sitting in a corner of the Radiotherapy Department in a hospital chair nursing a vomit bowl, at that stage, you really don’t care what you look like.

The third aspect is how important it is to take each day one step at a time. The special challenge of this treatment is having to attend each day for a radiotherapy session following the opening course of chemotherapy. While this is mercifully short, either 15 minutes for a normal therapy or an additional 10 minutes with a scan, being fixed by your shoulders with clamps and your head held tightly in your unique mask (technically it is called a shell) never gets any easier. Particularly at the beginning when you know you have another 29 sessions to go and you are feeling nauseated, and then towards the end, full of excessive throat secretions secondary to radiotherapy damage to the mucosal lining. If you are in trouble you raise a hand to stop the process. My way of coping with this was to fixate on the destructive powers of the radiotherapy on the tumour rather than its destructive power on all tissues in its path and hence ‘switch off’ from all the side-effects. For those few minutes it seemed to work for me; despite feeling lousy on many occasions, I did not have to lift my hand to get an emergency stop once. However, everyone seems to cope, mainly due to the caring and professional support of the radiographers. Their job was made constantly more challenging by one of the machines frequently requiring recalibration (not working properly) and staff having to reconfigure the next day’s lists during the day and evening around reduced machines – which included transferring from Guy’s to St Thomas’ (with masks) and vice versa. So occasionally they, and of course patients, were there late at night finalising their treatment. This is because one of the daunting challenges of the treatment is the requirement not to miss a single session of the sequence of therapy. Upset patients and dysfunctional machines will hopefully be a thing of the past with the new cancer hospital to be opened soon

Fourthly, having completed the last treatment, my oncologist was pleased with me. (Is she ever not pleased with patients?) She did say that recovery would be slow and once again, she was absolutely spot on. The relief of not having to go in to have radiotherapy every day is soon replaced with the anxiety of a potentially blocked nasogastric tube that would require a visit to the A&E department if it could not be fixed (so far four blocks sorted at home) and while the external radiotherapy damage is improving quickly – the skin and hair follicles – the throat ulcers and excessive phlegm are very tenacious. It has taken me two weeks before I have tentatively sipped a cup of tea and some milk. I think I am, however, expected now to speed up a bit and I detect that my main carer will be ensuring that increased effort to eat and drink will be required.

You will be aware by now that this treatment blog does not aim to associate itself with sporting activities. I used the World Cup as the starting point for the diagnosis blog, as it truly reflected how the realisation that I suffered with cancer interjected chaotically into that current period of my life. I realise to some that it may still seem frivolous to have taken such an approach and it certainly did not reflect my mood over the treatment period. Unlike the diagnostic period, you went from one world completely into another and had no time to dwell on the implications. On this occasion every hour was 100% concentrated on a 24/7 hour schedule of treatments, hospital appointments and picking up prescriptions. Our dining room looks like a pharmacy. It was fruitless to talk about the disease not taking our lives over because it did. As well as disease and symptom focus activity there were all the other responsibilities to sort out, including reorganising and cancelling work trips and holidays over the next six months.

So now we wait.

Initially for the side-effects of the radiotherapy to subside to allow me to eat and drink normally again, and then the six-weeks appointment with the consultant and the follow-up PET scan.

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

Comments (7) Add yours ↓
  1. Mike Kirby

    Dear Peter,

    What you describe is what I saw my wife go through 10 years ago, and she is still going strong, but with strong unforgetable memories of the chemotherapy, the mask and the daily treatments.
    No regrets, just so pleased that medical expertise is there when we need it.
    You are right, the family make so much difference, but the kindness of most of the clinical staff is never forgotten.
    A smile counts for a lot.
    Enjoy your first comfortable meal & we all keep our fingers crossed for your next PET scan.
    And the six Nations starts soon!! We all want to forget the World cup!!!!
    Kindest regards
    Mike

    January 27, 2016 Reply
  2. Roger Kirby

    What an incredibly brave, honest and poignant account of the trials and tribulations of cancer therapy by a much valued member of the Trends editorial board. Well done Peter for this touching and inspirational report, and the very best of luck as you now move into your recovery phase. Do keep us up to speed with a step by step account of your ongoing progress. All our thoughts and prayers are with you. You are on your way to full recuperation.

    January 27, 2016 Reply
  3. Zelda

    Peter you are so brave. I do not think that I will be able to handle such a thing the way you did. I believe that you will become healthy and strong just like you were before. I pray for your recovery every day.

    January 28, 2016 Reply
  4. Ian Dye

    First, I pay tribute to you and admire you. I wish you well. I hope you’re cured, and I hope all is good. It looks good to me.

    I couldn’t do what you are doing, even if, ten years on, it works. I think it is really good that you give a report so that others can understand what these horrible treatments really involve.

    I’ve had a lot of experience of cancer affecting others. My mother was a nurse in a cancer ward. All my relatives have died of it, admittedly between the ages of 85-95, but still that’s what they’ve died of, so I see that it is quite likely to affect me.

    As a cancer nurse, my own Mum said that if she ever had it, she’d opt just to ask for no treatment and just ask essentially to be put to sleep. That’s what she did, when her time came, and it was very easy.

    Compared with this, the doctors had their go with other relatives. Enough said.

    I couldn’t do it.

    I think, good, bad or neutral, the public need some clear reports from people speaking, like you, in good faith as what cancer treatment is really like, because there is not enough information about the treatments and whether they are worth it.

    There is an integrity, too, in facing up to death, as much as resisting it. We all have to die, so it’s not so bad to face up to it.

    I couldn’t personally deal with a naso-gastric tube. I’d fall to pieces. For me, it’s worse than the disease would be. I can’t even deal with a nurse or a doctor taking a blood sample.

    The important thing is that, whatever people choose, they have their own integrity as to what that choice is.

    I do like Rugby too. I had a ticket for the final – I have never seen a greater team than New Zealand. The only sadness was that Scotland was knocked out and so could not beat Argentina to be in the final. The referee in the Scotland game was right to run off the field.

    January 29, 2016 Reply
  5. Loretta

    Peter, I do admire you for your bravery and I am assured that, having the support of the medics together with the backup of your supportive family and friends, you will soon be fighting fit again. Just approaching my 5th year of diagnosis and treatment and feeling great. Every blessing at this time.

    February 1, 2016 Reply
  6. Alastair J

    Peter, what an amazing and moving description of your all-consuming experience – intensely-lived, but dispassionately recounted, thereby yielding many valuable insights into treatment process from the patient’s perspective.

    Well done Peter. I admire your physical and mental bravery, and the objective evidence is that you did not raise your hand during those thirty excruciating radiotherapy sessions! …Tercia too, for all she has done to provide that most vital ‘support mechanism’, in such difficult circumstances.

    You’ve really been through the mill, and now you are starting on the road to recovery. Stay surefooted and steadfast….

    February 2, 2016 Reply
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