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  • nbrightside 11:53 am on December 30, 2011 Permalink | Reply  

    Discharge and Admission 

    Wednesday 26 October

    Two days after the blood clotting episode, I drove to the Royal Marsden Hospital for my second chemotherapy session. The doctor went through the lengthy symptom checklist to gauge my bodies reaction to my first exposure to powerful chemotherapy drugs. Most of my answers were ‘No’, ‘Nothing’ or ‘None’. When she finished and asked ‘Any other symptoms or problems ? ‘, I just mentioned the ‘ongoing pain and discharge from my backside’. The doctor raised her eyebrows – ‘Discharge ? Well I think I need to have a look at that’ and so we adjourned to a consulting room.

    Chemotherapy is similar to the calamari from my local delicatessen. It is made up in batches in the morning and it is expensive.

    My trusted oncologist examined my naked bottom and, like tens of women before her, didn’t like the look of what she saw. She opened the door slightly and shouted out with some urgency – ‘Mr. Brightside, please cancel his chemotherapy. Now’. No chemotherapy or calamari for me today.

    My heart sank as I pulled my tracksuit bottoms up and awaited her diagnosis.

    ‘You have an active infection in your bottom that is discharging pus. I have taken a swab and will send it to the microbiology lab. There is no way we can give you chemo with this infection present. To clear this infection up quickly and resume chemo, we need to admit you and give you IV antibiotics for a few days’.

    I went back into the chemo room and pondered on this development. The Doctor came over – ‘Right, currently we don’t have a room free so we can’t admit you. However, we could give you oral antibiotics but these probably won’t be strong enough to clear up the infection but don’t worry, it’s early yet, hopefully a room will be freed up later today’.

    Oddly, after all I had been through, this seemingly inconsequential news had the effect of a straw delicately placed on a camel’s back.

    The brilliant colorectal specialist who first diagnosed me back in August had been unerringly accurate in every single word he uttered. These prophetic words in particular – ‘The main problem here is the risk of recurrent infection in your bottom during the chemotherapy when your immune system is compromised’ and my wife’s polite request for ‘proactive antibiotics to reduce the risk of infection’ that fell upon deaf ears.

    So, after just one chemo session, this scenario had indeed come to pass. We couldn’t treat the tumour in my rear end with chemotherapy because  of a raging infection in my rear end (that was essentially the tumour).

    There was only one Catch and it was Catch-22.

    This was just too much. I’d come to this session on my own expecting no complications. I expected a chat with my new found friends, a ham and cheese sandwich and being hooked up for 2 hours reading a book.

    I eased myself out of my chair and walked out of that damned chemo room full of poorly people waiting patiently for their expensive, light sensitive chemotherapy drugs to be made up by the pharmacy. I walked down the long corridor with the blue carpet past ladies with colourful headscarves on, I walked past friends and relatives who had just popped to the shop for a newspaper. I walked past smiling and laughing nurses. I walked past a middle aged woman who had clearly been crying while she simultaneously walked past a middle aged man on the verge of crying.

    I walked past a father and son anxiously looking at signposts looking for directions to some ward named after a famous surgeon. The father wasn’t the patient – the 14 year old lad was and had no hair to prove it. I tried not to stare, bit my lip and walked out of the hospital. It was a mild, grey day and drizzling. I carried on walking past the ambulance set-down area until I reached the furthest edge of the lucrative, PCT income stream that is the visitors car park.

    It would be tempting to say I looked up to the heavens and screamed ‘Fuck you, cancer’, ‘Live strong’ or ‘You can take my life but you can never take my FREEDOM’ but I didn’t.

    I looked down at the tarmac, looked at the raindrops staining my shirt and briefly wished I’d put my coat on before my sudden and spontaneous departure from the ward.

    ‘How on earth had we got here ? And where in the name of fuck were we going to end up ?’

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    • Jonathan 12:03 pm on December 30, 2011 Permalink | Reply

      Your writing is brilliant at the moment. Just thought I should say that.

    • nbrightside 12:09 pm on December 30, 2011 Permalink | Reply

      Thanks very much. So is yours – consistently. I particularly enjoyed your Christmas Day post which was beautifully written.

    • Scott Evans 12:12 pm on December 30, 2011 Permalink | Reply

      Oh man! You described that whole feeling of disappointment right down to the level that only one who can feel, I too had many a setback during my treatment and yes thrre are times when you feel like that you no longer have control of your own destiny. Just reading this now has again proven to me that as much as I think that I have moved on from all of the emotional anst I have built up, it only takes a few words from a friend to bring it all back…

      I suppose what I’m saying is that although you will have shit days, there’s always tomorrow… Another thing was that if you don’t ask you won’t get, so voice any trivial concerns, after all you are only human!

    • Adrian Howarth 1:52 pm on December 30, 2011 Permalink | Reply

      First of all stay Positive, it is a set back yes but you need the treatment. I cry at times like your experience, seeing others worse off that myself, makes me sit up and stop being silly and that I am luck to be around to get the treatment. Swear (inside your head and wear a Happy Smile that although you are ‘sick as a pig’ you are not worrying your close ones.

      BUT MOST OF ALL, STAY POSITIVE. We will beat this, We are soldiers, we will not only win the battle but also the war, or die trying and anything that is learnt from our journey, will be bombs to drop on the cancer, so that those that follow will go on the take our place, until it is wiped out for others.

      BIG HUGs & Smile a Mile

    • Ruben H 11:35 pm on December 30, 2011 Permalink | Reply

      Thanks for sharing this so eloquently. It seems as if walking out of the hospital that day burnt itself into your consciousness. I am looking forward to you writing another story where you are happily walking out for the last time.

    • Bananabob 11:37 pm on December 30, 2011 Permalink | Reply

      What a wonderfully written piece. I could feel your anguish. Kia Kaha!

  • nbrightside 10:35 am on December 3, 2011 Permalink | Reply  

    couple of minor setbacks 

    Ten days following my first chemotherapy treatment, I had suffered no side effects. Nothing. Obviously, I was pleased about this although perversely I then wondered if the chemo was actually working or I was secretly being used as a control in a clinical trial. Still, I had been told that the treatments were cumulative and side effects were more probable with each cycle.

    So, Sunday 23rd October dawned and after lunch I settled down to enjoy one of the biggest football matches of the season – United versus high spending and high flying Manchester City. Mario Bolotelli opened the scoring and unveiled a T-shirt adormed with ‘Why always me ?’ I simply love quizzes so I tweeted him immediately ‘Is it because you are a complete arse ?’

    Jonny Evan’s dismissal early in the second half and a second Balotelli goal failed to lighten my mood. The wife then interrupted a stony silence with ‘What’s that rash on your arm ?’ ‘Dunno – probably just a bit hot’.

    My wife then attacked me with an indelible, black CD marker pen and proceeded to draw a circle around a red blotch on my upper left arm, explaining ‘I’m a bit worried about this’. When my view of the TV screen was clear, I sighed as Aguero made the score 3-0 to City.

    Minutes later, the wife passed me the phone – ‘Here’s it’s your sister’. For God’s sake, why is my sister calling me, from Brisbane (near Australia) in the middle of the footy. ‘Hi Rachel  – hang on. Isn’t it 3:30 in the morning out there ?’

    ‘I’m sorry but this is Sister Monaghan from the Marsden hospital. You wife tells me you have developed a serious rash on your arm after chemotherapy.’

    ‘Oh yes – sorry.’ ‘Is is itchy ?’ ‘No’ ‘Is it getting bigger ?’ ‘Don’t know’ ‘Can you draw around it with a biro ?’ ‘Yes – we’ve done that’. ‘Are you feeling hot or unwell ?’ ‘No’. ‘OK – keep an eye on it and come in tomorrow if it gets any worse’. OK will do. Thanks’.

    Inevitably, the rash got bigger and a little more red and raised so I duly went in to see the doctor. I assumed it was an allergic reaction or one of the 17 minor side effects from chemotherapy. The doctor examined the rash and said ‘You’d better get an ultrasound scan as this might be a blood clot’.

    30 minutes later, an Indian lady was rubbing clear jelly onto my left arm and probing with her scanning device. She was quiet and obviously concentrating very hard. I turned my head to see the monitor and gauge when it might be appropriate to crack the old ‘Is it a boy or a girl ?’ joke.

    I saw some grainy images, some things highlighted in purple and some things pulsing. Then I saw a round, grey circle of matter that looked like a tennis ball. I lay in silence as the consultant completed her diagnostics. She wiped the jelly off my arm and said ‘I think I would like the Senior Radiologist to look at this’.

    Another doctor came, applied more jelly and scanned my left arm until he also found the tennis ball structure. He didn’t seem too perturbed and summarised his findings thus: ‘Yes – Mr. Brightside, you have a couple of blockages there – one under your armpit and another on your upper arm. You’ve heard of little old ladies with DVT’s in their legs after long flights. Well you’ve got two but in your arm. Go back to Doctor S. who will prescribe you some blood thinners which will sort that out for you’.

    Doctor S. was not unduly concerned – ‘Yes – this is not uncommon. Cancer itself thickens the blood as does chemotherapy which increases the risk of clotting’.

    I came home with a large bag of anti-coagulant injections to be administered (x2) each evening by my lovely wife. I think she was pleased that she had diagnosed a potentially serious problem, could finally get to jab me with a needle and feel useful

     
    • Michael C. Harris 1:33 pm on December 4, 2011 Permalink | Reply

      I think we’re probably all feeling a bit useless, perhaps we could all come over and jab you of an evening?

      • Steve 11:41 am on December 20, 2011 Permalink | Reply

        But what was the final score in the footy? 🙂

    • John E. Bredehoft 10:46 pm on December 4, 2011 Permalink | Reply

      I’m trying to think of a way to work “5FU” into this comment, but can’t think of one.

      Incidentally, I appreciated your previous post about the side effects of chemo – I didn’t know about any of them other than the nausea.

  • nbrightside 12:24 pm on December 2, 2011 Permalink | Reply  

    Chemotherapy commences 

    After all the preparation work, my chemotherapy started on Wednesday 12 October at the Royal Marsden Hospital in Sutton.

    When people occasionally ask me about the chemo treatment, it’s clear that the exact process is not always fully understood. For example, some people think I have to stay in hospital or that is, in some way, an uncomfortable or painful process.

    Hopefully this post will clarify the treatment, or rather my specific treatment. Your (or your friends and relatives) chemotherapy mileage may vary with the drugs administered, the duration and frequency and the possible (and actual) side effects.

    Firstly, we had to review the list of possible side-effects and sign the consent form. This had already been covered in an earlier meeting but the most common side-effects seemed to be:

    • Neuropathy – sensitivity to cold in extremities (fingers and maybe toes, mouth and lips). Wrap up well with gloves and scarf.
    • Tiredness. Err, sleep.
    • Mouth ulcers – This one is on my handy chemotherapy credit card checklist so tell your consultant.
    • Shortness of breath.
    • Nausea and vomiting. You are given injections and pills to counteract these symptoms.
    • Fever.
    • Shivering.
    • Increased susceptibility to colds and infections. Avoid sick people and hospitals.

    Anyway, enough of that scaremongering – let’s sign the flipping form and get started.

    Chemotherapy always starts with a blood test to check your white blood cell count. If this is below a threshold, the chemotherapy must be suspended to let the body and your immune system recover. Obviously, the first blood test is to establish a baseline. Handy terminology to impress the nurses – ‘Any news on the results of my bloods yet ?

    The weigh in – I have lost a stone since being diagnosed. Other positive side effects are my alcohol consumption has been significantly reduced and I have stopped snoring. Hurrah !

    I was embarking on six chemotherapy treatments with a period of two weeks between each treatment. Handy terminology to confuse friends and relatives – ‘6 fortnightly cycles’.

    My chemotherapy drugs were oxaliplatin and fluorouracil. Handy medical shorthand for fluorouracil to impress oncologists – ‘5FU’ which has the added advantage of sounding slightly rude so care is needed with volume and intonation here.

    Before the chemotherapy is started, there is the inevitable saline flush which checks the portacath line is working correctly. Then there is a hormone injection and anti-sickness drugs. These are all just quick and easy 10 second injections via the portacath – the medical term is ‘push’.

    The oxaliplatin is also injected via the wonderful portacath device over a period of 2 hours. The drug is suspended in a bag  from what looks like a metal coat stand. This drug is light sensitive so is shielded in a bag and is combined with a flushing agent (I think).

    The infusion process is absolutely painless. You basically sit in a small room with other patients – you can read the paper, chat to the wife, eat, drink and if you disconnect the mains plug and manipulate the coat stand on wheels, walk about making new friends.

    After the two hours is up, the machine beeps loudly and the nurse hooks up a final 10 minute ‘glucose flush’.

    The 5FU (see I told you it sounded rude) is then administered over a longer time period (48 hours) so this is provided in a handy takeaway clear bottle (like a half-size baby’s milk bottle complete with pink trim). The bottle comes in a camera sized case and fits into your shirt or trouser pocket. Again, this is a minor inconvenience but doesn’t preclude you day to day activities and is preferable to two days in hospital for all concerned.

    After two days, when the 5FU has been fully dispensed, a nurse comes to your home to disconnect the pump and that’s it for two weeks until the next cycle.

     
    • Scott Evans 2:40 pm on December 2, 2011 Permalink | Reply

      Hey now you’re all up with the lingo! So now you’re a true member of the C club and wear your beanie proud!

      Ok some embarrassing news from my first chemo session, now my drug intake was different but the whole thing was given the name of CHOP! (individual breakdown see my blog, search for lymphoma) So back to this embarrassing moment… On the day I chose to wear loose fitting clothing (track pants & T-shirt. OK so I was nice and comfortable when I noticed that I was feeling a bit strange, not feeling sick but a feeling of arousal (I’m not kidding!) now as my chemotherapy started by infusing 2L of saline it wasn’t long before I needed to visit the toilet. To my horror I found it impossible to urinate because I have a rather uncomfortable erection! Now for those who are thinking but surely this would pass and the whole thing was being blown out of proportion in my mind (aka embarrassment) but this didl eventually pass but a good 7 hours later I was back to normal!

      • nbrightside 2:51 pm on December 2, 2011 Permalink | Reply

        Now that didn’t appear on the list of side-effects. UK nurses have been known to use cold spoons to alleviate this condition.

    • Tim Hall 4:34 pm on December 2, 2011 Permalink | Reply

      Both your experiences sound quite different to my sister-in-law. She didn’t have a little pump to take home and she didn’t get an erection! 🙂

      Cheers

      Tim…

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