Home » self management » What doesn’t kill you…what having lymphoma taught me

What doesn’t kill you…what having lymphoma taught me

Lymphatic cancer awareness week is nearly upon us, and several people have said on numerous occasions I should blog  this experience, and a few of you have reminded me I haven’t done it. So here it is. Sorry, I think it took a while to feel this was ready to share quite so widely. This is a personal account . I haven’t wanted to share it because it somehow felt slightly self indulgent. But thanks folks, for nagging me into this.

I can only speak for myself. Some of you may find my perspective uninteresting or indeed you may find my sense of humour and dealing with it not something to your taste. All I can say is, this is how it went with me. And my apologies for the length.

Between December 2012 and April 2013, I had one of the most incredible experiences of my life, and one which has had both struggle and value. I had non hodgkin’s lymphoma, four months in hospital and four cycles of intensive (understatement!) chemotherapy.

But I’m busy enjoying the fact that I’m still here, and back at work.

As I write this I have had a session with Tony Kidd my amazing personal trainer where the muscle mass I lost (27kg) has been replaced, and from starting with Tony to get me doing exercises just to be able to strengthen my posture so my knee didn’t keep coming out of joint, I can now bench press 4/5 of my own body weight and leg press 300kg. That’s a long way from March 2013 when I couldn’t climb a flight of stairs without stopping for a rest after every third stair.

A funny thing happened on the way to the gym

I noticed a lump in my armpit one day which I thought had been caused by a sports injury at the gym. My GP felt it was probably an infected cyst.  And kept saying that until I pushed the issue. Only it wasn’t a cyst, one clue was in the fact it kept on growing despite three packs of antibiotics. I waited so long for referral for a scan I organized my own, and two days later was in front of a different GP, being referred urgently for an NHS CT scan. This happened quite quickly.

Interestingly, I still have had no contact with my GP nearly eighteen months on, though I have my copy of an impressive ream of letters from the hospital to them. They haven’t even invited me for my ‘flu jab despite my pushing them. We still have some quality issues in primary care to address!

Anyway, by the time I found myself in front of an impressive, capable, business-like and organized consultant Haematologist at Queen Elizabeth II Hospital in Welwyn Garden City

I had six tumours, one in my left armpit which reached round my shoulder and was 22cm, another 23 cm in my abdomen and four smaller ones elsewhere including one in each jaw/set of gums. I have never seen anything grow so fast. It was like being in a sci-fi movie.

It was a fast growing, high grade lymphoma. My family has a history of cancer including leukaemia so let’s be honest, it wasn’t good, but really, it could have been worse.

I was sent upstairs to Ambulatory Care  to await her doing a bone marrow biopsy (ouch) and tumour biopsies (nothing special after having my hip hammered into), and by the time she finished clinic I had gone from an outpatient referral for a fortnight hence to an inpatient referral to UCL the very same day. She probably saved my life.

The good thing (and it was a good thing, looking back) is that being so fast and aggressive it was very responsive to chemotherapy, so everyone kept telling me.

A really good MacMillan Nurse, that wonderful Haematologist at Welwyn, the fabulously irreverent and generally wonderful Dr who ran the Ambulatory Care unit at Welwyn with panache, compassion, joy and humour. And then the huge and impressive team at UCL.  The Welwyn team were trying to get through to me that there was hope while I was busy wishing I could be sitting in a street cafe in Rome, Barcelona, Madrid or Paris rather than watching it snow outside a 1950s hospital block while being in phsyical pain and emotional distress. And lots of cups of tea from the nurses with their tender and solicitous humour were amazingly therapeutic.

The journey through specialist care

After amazing diagnostics and care at Queen Elizabeth Hospital in Welwyn Garden City I had equally amazing care in Wards 13 and 16 and the MacMillan Cancer Centre at University College Hospital, London. If you ever wanted to see nurses and doctors, clinicians and staff dedicated to putting people back on their feet, look no further than these places.  And when I moved to the UCL Macmillan Cancer Centre, staying in the Cotton Rooms at night I had the ability to experience an awesome form of care there. One day I opened HSJ (Health Service Journal) and there was an article from an NHS Manager who had twice had lymphoma praising the very place I was being treated in.

Little projects helped….sitting with the wonderful Dame Jane Roberts in the cafe at the Cancer Centre while we both wrote the introduction to the British Academy report on health inequalities was surreal but rather fun, looking back. (Americano with your rituximab, Sir?)  When I got to ambulatory care the epic trip (actually 180 yards) to the little Italian where I’d get halfway through a bowl of pasta and the waitress would scold me till I finished then make me eat a sliver of pie was another project that took hours to prepare for.

The doctors were confident from the start I could be functionally cured (or have a complete response if you prefer.) Even when I got fairly ill, anaemic, neutropenic and with two infections and the palliative doctor wandered in one day they hadn’t given up confidence I could respond. The chemo was tough, but encouragement was always there.

My chemotherapy was M-Codoc R / R Ivac, which was two cycles of 15 days and two cycles of 5 days.  And seven or more days of aftermath at the end of each cycle where your body deals with having been flushed with something which has all the subtlety of Domestos. I have never known nausea or fatigue like it. Mind you, I have never seen tumours melt away so quickly either. So let’s keep this assessment balanced. It worked!

There were days I couldn’t find the energy to read the paper, and days when I devoured every piece of reading material which came in my direction. Dreadful food, though. We really need to do something about hospital food in this country.

It does seem to me that the inpatient bit of the hospital was not geared up for self management or for patients to keep some form of productive living while going through treatment, though. We need to do better at this.

While the pain was the worst I have ever had, I learned how to cope. And mercifully, it didn’t last more than a few days at a time, and then became low enough to manage using psychological techniques.

In at the deep end with the treatment and the pain actually turned out to be a mercy.  I remember I decided I would fill my water jug after my first day of chemo (the little things matter.) I reached out for the door handle (I was off to fill my water jug) a couple of hours after my first dose of Rituximab yelped (ok, screeched like a scalded cat) and then woke up on the floor with the nurses round me. It felt like someone was actually burning the tumour off my shoulder and armpit with a blowtorch.

I declined opiates to relieve pain. Yes, ok, fairly obstinate but I don’t like them. A single dreadful night on opiates was bad enough, thank you. I got through the pain with some paracetamol, the odd tramadol, the occasional well-judged slapping from a nurse and lots of sheer bloody-mindedness. The staff were great and kept offering me opiates especially for the four days of each cycle where I had massive mouth ulcers so bad I could barely swallow water and the lining of my mouth and throat kept peeling off.  But raspberry flavoured morphine syrup is just wrong on so many levels.  I discovered the relief that using soluble paracetamol as a mouthrinse brings after the initial sting. Bliss! Well, for two hours at a time, anyway.

The intrathecal injections were not fun. Sore and slightly scary, with the disbenefit of double vision and headaches afterwards. (But people next door to me were getting daily injections into their bone marrow, so let’s not go overboard, it REALLY could have been MUCH worse.)  One day someone casually mentioned caffeine before and afterwards helped…but nobody knew why. I didn’t need to be told twice. And it worked!

The anti-nausea drugs went through days of working well, and days of not working so well. I had symptoms like gout from the tumour breaking down after they started me on steroids (luckily I didn’t have full tumour lysis syndrome but they were very watchful). I had the menu of

  • constipation,
  • muscle wasting,
  • dehydration,
  • anaemia after every cycle,
  • neutropenia after every cycle,
  • severe fatigue,
  • insomnia (have you tried sleeping in hospital?)
  • multiple infections (chest and elsewhere),
  • a tooth extraction because the lymphoma made my gums grow up over my teeth on one side of my jaw – actually by the time the oral surgeon cut the gum it just fell out –
  • a visit from the palliative care consultant,
  • a fair (impressively large) amount of vomiting,
  • the odd bout of diarrhoea (or six),
  • two falls in the shower,
  • sore back from injections into the spine
  • and lots and lots and lots of mouth ulcers.

I have felt delightfully woozy on very strong antibiotics and totally zombified from fatigue from chemo. I also felt great comfort after steroids and chemo started and the initial few days were over.

Cycles 1 and 2 were, I thought initially, the most difficult.  Raging temperatures after Rituximab turned into raging temperatures after infections. One of the nurses thought I did better on cycle 2  than I did,  and after the first two days I think she was right. In terms of coping with the drugs I sailed through cycles 3 and 4 with the exception of the fatigue, anaemia and neutropenia; even with the mouth ulcers. I’ve never seen so much blood and platelets. Cycle four just seemed to be a walk in the park (all I had were mouth ulcers, fatigue, anaemia and intrathecals ) compared to the first two.

I discovered after I got home, when I read a letter from the hospital to my GP that they thought I had transient encephalopathy  on cycle 2 induced by ifosfamide , one of the chemotherapy drugs , but before they got round to giving me another chemical to come out of it (methylene blue), I came out of it by myself. Why did nobody tell me?

I remember my chemo nurse saying in March that I might be ready to go back to work one day a week in July. To which my response was “f@@@ that for a game of soldiers.” Cue doctors and others to give me an assessment and discuss.  I know myself, and one of the best things in this experience was learning to know what my body, mind and soul needed again. And I needed to get back to work.

Work

Every now and then you work for an organization which you realise is a gift to you. That doesn’t mean there aren’t challenges, but working in Hertfordshire is just such a gift. Colleagues have been loving and good, and assured me that my job was there. They also occasionally told me to get lost when I needed to rest.  And reminded me I needed to listen. Occupational Health and my boss were amazing, creating a back to work schedule and regular reviews. And my PA and immediate colleagues incredibly good. My PA still makes sure people remind me to eat.

Some good things

Going neutropenic after every cycle of chemo was a pain, not least because when you actually feel like eating, most of what you want (Strawberries, salad, sushi, rare steak, anything with taste) you can’t have. So getting to fruit and salads when I got back to normal after each cycle was a joy. A real boon.  I was still losing weight, though. A friend started feeding me scones, chocolate and anything else he could bring. This worked better than the high calorie pink emulsion of fat and milk protein they gave me, which usually spent thirty seconds down and then came back up straight away, all over the floor.

And one day when I was told I could go for a walk I went to Waterstone’s, had a coffee and bought a book. Another day I took a bus to Westminster Cathedral, sat down and an hour of quiet and peace passed. Which was just as well, I was so exhausted by the time I got there I didn’t think I’d get back again.

I had communion every day, often from a chaplain who herself was being treated for cancer. That was poignant, and educational.

 

What I have learned

  1. Yes, obviously, my Faith helped enormously
  2. To breathe in and stay calm when a needle is being shoved through your hip into your thigh bone or into your spine
  3. Sometimes it is a case of mind over matter. I was determined to overcome the fatigue. And I have.
  4. Sometimes self-management has to start in sheer bloody-mindedness, other times it has to start in acceptance of your limitations and a realistic assessment of how, whether and when you will overcome them. Being able to assess realistically what your options are helps.
  5. To rejoice in the small things when you can rejoice in nothing else

 

The thanks

  1. A million folk from the Chaplaincy
  2. The pack of visitors from Birmingham on Christmas Day
  3. A loving, caring family who sat quietly when I was too exhausted even to speak, washed my clothes and bedding, and loved me
  4. The Lymphoma Association and their amazing information and resources
  5. ditto MacMillan Cancer
  6. Friends who fed me and visited me and cared about me (including the visit late one new years eve by a colleague on his way to a dinner)
  7. The gifts from folk I worked with – chocolates from the church,  teddy bear from the LGBT network, the book from the BME leaders network and the flowers from the Bishop.
  8. The nurses…twenty times over. From the ward nurses to the chemo nurses. I still remember the chats and the laughs and watching the new year’s eve fireworks from ward 13.
  9. The doctors, even the complete Control Queen ( I mean very efficient and organised) Dr Beth, who was great but spent more time shoving needles in my spine for intrathecal chemotherapy than I care to remember…
  10. The volunteers…especially Rose who had been volunteering for several decades..seriously!
  11. The catering staff…solicitous and lovely even if the food was beyond their control
  12. The ambulatory care centre at UCL (these folk are just wonderful and rightly deserve the Lymphoma Association award for which so many of us nominated them) and the Cotton Rooms. You truly are jewels in a centre of excellence.
  13. Have I mentioned the nurses in ambulatory care?
  14. The guy who runs the newsagents in the Cancer Centre who had New Scientist, Nature and a cheese and ham croissant (which on a good day I ate most of across the day) waiting for me every thursday.
  15. The OT and Physiotherapist who helped me with an exercise regime that I could do in bed, even if it did look profoundly silly.
  16. The staff at Wellcome Foundation the day I managed to walk from the Cancer Centre in Huntly Street to the Wellcome Foundation, drink an earl grey tea and eat a scone. It took me an hour to get there, and nearly two to get back. And I couldn’t lift my own tray to my table. But I did it.
  17. The medical team and research team (being on a clinical trial can be quite interesting.)

Could do better

  1. The food -oh good grief, the food. I remember a three bean salad which was some lettuce, a handful of washed canned mixed beans and a sachet of salad cream. Really??????  It didn’t get much better. I realise some people liked the food. I didn’t. The sausages on Christmas day were nice, though. DO BETTER FOOD FOR CANCER PATIENTS!
  2. The dietitians…Oh dear. You pontificated from the end of a bed in a way which made me feel leprous, not to mention small and inconvenient.  The first one of your team I met had all the empathy and warmth of the sun glinting off the nails on a coffin lid.  I mean seriously, how can it take two weeks to refer someone, a week to get an additional diet pack ordered and delivered and a month to get the contents right?  I’d like to sit you down one day and ask in what parallel universe does a professional dietitian recommend salty foods and hard crackers for a patient whose mouth is full of ulcers from chemotherapy?  This should be basic.
  3. The initial “let me tell you loads of things about your chemotherapy”, scared the bejeesus out of me and meanwhile an hour of my life went go by where all I remember is being increasingly alarmed by what would go wrong during my chemo. I know you did this for the best of reasons and not sure how else you could do it, and actually very little went wrong. But the forty page information pack: AAAAAAAaaargghhh!!!! It left me confused, bewildered, scared and hurting until we spoke again. There must be a better way?

 

Accepting what happened

Now, contrary to what many folk say, I do take some things seriously. The people I love, the work I do, the family I have and lots of other things. But I like to have a bit of fun. Not a lot of point in life if you can’t.  I believe I was put here to live life to the full. And I like to lampoon things a bit.

I only partly jest when I say that the Lord is clearly not as anxious for me to join Him as we all first thought, which is a relief to Him, and an opportunity for everyone else to practice forbearance. I told  a version of this joke to a health audience. Cue embarassed silence apart from one guilty snigger.  I told it to a church audience. They howled with laughter. Being real about out mortality doesn’t mean we have to be sombre about it.

But as I look back, I assimilate the experience more and more. More than one person has had  cause to say to me “you just said ‘one of the good things about having cancer'” and pointed out to me how jarring this sounded. But it is true. Some dreadful things have happened to me in my life. And I wouldn’t necessarily wish it otherwise because looking back they have all made me who I am today.

Don’t get me wrong, there were some truly dreadful experiences, not least the weeks of no sleep, constant discomfort and regular pain leading up to diagnosis. I remember those nights through November 2012 of getting five minutes rest at a time before having to change position. In the end I spent three weeks “sleeping” upright in a chair.   Acupuncture relieved the pain in my side despite my scepticism about the evidence.

I learned some patience, I learned to empathise with others, I learned that I could cope with some pretty serious stuff and I learned that sometimes we just have to go through things. And here I am, hopefully out the other end, for how long we don’t know.

I also found it helped enormously to take the piss, quite frankly, out of the disease and the treatment regime. Some of the names of the drugs…methotrexate, ifosfamide, doxyrubycin…sounded like characters from a cheesy sci-fi movie. I could imagine Doxyrubycin, the curvaceous and sexy flame-haired harbinger of vengeance fighting off the evil Methotrexate in a battle to save the Neutrophils, the peace-loving agricultural people of Neutropenia. (A Freudian would say this was manic defence. But when things get tough you find ways of coping. So nuts to Freud. This was about coping by helping me feel more important than the disease while undergoing effective treatment. Try it with your health challenges if you’re sceptical.)

 

Building back to normal life

I am in remission. I still have a bit of short-term memory problem, for names especially (apparently folks call it chemo brain), have no feeling in my right foot and a bit of my right leg and no feeling in a bit of my mouth. My jaw was put out of kilter by the tumours so I now have an overbite and misalignment and endless dentistry from tumour damage to look forward to. My eyesight has gotten very slightly worse. And now and again I get pain in the tumour sites. Occasionally it feels like my armpit has toothache. I still get very dry skin. But all this is a minor inconvenience really compared with what has happened.

My faith was obviously very important and still is. I went into hospital in Advent, and came out during Holy Week, which for a Catholic is both ironic and poignant. I got a sense one day, after I had received the Sacrament of the Sick, (what we used to – wrongly – call the Last Rites) that everything would be ok. I can’t explain it, the psychologist in me can’t even begin to put words to it, I just knew.

This thing is unlikely apparently to come back. I may get a different cancer. I may die of something else.  I might take up underwater windsurfing…I don’t know.  As a Catholic I am taught to cherish life but embrace death when it comes. And I hope I will be able to do that, but with St Augustine, pray that it’s not yet.  People cope in different ways. This was mine, accept what I had to, assess the situation, work to do what I could and make sure I was in charge, not the disease.

There is much to cherish, and for as long as I am here, cherish it I will

 

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4 Comments

  1. Helen says:

    So brave and important to share the reality. Thank you. Helen

  2. Dawn Butt says:

    Thankyou for sharing your story about your lymphoma, it is so good to hear how well you are doing now. As someone living with an ocular melanoma that was treated by wonderful doctors at Barts hospital I have a degree of insight into the profound and poingnant experience you have had and are still living with. I wish you the very best.
    Dawn

  3. Wendy Tooke says:

    Jim – Thank you for your honesty, eloquence and wit once again. Sadly my mum is no longer with us but she would have echoed many of your sentiments. What hurt most (althought she never complained once – I did on her behalf when I had the energy but not loudly enough) were some of the jaw-dropping examples of inhumanity we came across from people who presumably had made a conscious choice to go in to so-called “caring” professions. WHY?! Luckily they were in the minority, we had many angels to thank and it was often small gestures of caring and comfort that meant so much. Like the consultant who knelt down at her hospital bedside in his very expensive suit on a filthy floor and held her hand to give her some very bad news. The news did not register at the time – she was just so impressed by that gesture. We just have to remember we are dealing with human beings – it’s that simple and yet we forget that so often.
    Rather an understatement – but so glad you are here to tell your story and it is so important that you tell it.

    Wendy

  4. Battye, Fraser says:

    Jim, probably the wrong choice of word but I really enjoyed reading this – for your honesty, but probably more for your turn of phrase: ‘all the empathy and warmth of the sun glinting off the nails on a coffin lid’. Glad all is well.

    Fraser

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