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  • nbrightside 3:29 pm on January 4, 2012 Permalink | Reply  

    Twilight Zone 

    Way back in August 2005, I started a blog under the pseudonym ‘Norman Brightside’, the rationale for which is described here.

    I am a keen fan of football and bore people incessantly about the subject.

    In August 2011, I was diagnosed with bowel cancer.

    There is a UK bowel cancer charity support site, supported by various footballers, called ‘Know The Score‘ which includes and supports the ‘Mr. Brightside project‘.

    Cue twilight zone music.

    [ Sadly, the derivation of the Mr. Brightside project name is inevitably sad and involves the premature death of a young man who liked The Killers so don't feel obliged to go and read about that. ]

     
  • nbrightside 12:55 pm on January 4, 2012 Permalink | Reply  

    onwards and upwards 

    The climax of the last, thrilling episode saw me stood, in the rain, in a remote corner of a hospital car park with the dramatic Eastenders closing music playing.

    I did what I normally do in these circumstances and called my therapist. He’s a lovely chap who sits on a wooden bench in the beer garden of the Pear Tree hostelry (‘Where Progress Is Measured In Pints’) clutching a pint of Hooky Gold. His pint glass is always half full. Obviously.

    His helpful advice for my quandry was as direct and helpful as ever – ‘Pull yourself together, you soft get’.

    ‘But, hang on, that’s easy for you to say – what about my two questions ?’

    ‘Oh those questions, right – I’ll help you out there. Firstly “‘How did you get here ?”. Well you walked which is more then some of those people back in the hospital who are confined to wheelchairs can do, so count yourself bloody lucky’.

    As for ‘Where does this end up ?’ – well 2012 may see the following events:-

    • GB top the medals table at the London Olympics.
    • England win Euro 2012 beating Germany 4-2 in the final.
    • Manchester United pip local rivals, City, for the Premiership on goal difference in the final game of the season.
    • These blog posts are collated into a best selling e-book that goes viral. You become an overnight Internet sensation and a multi-millionaire.
    • You emerge victorious and find yourself participating in a sponsored rickshaw ride for a bowel cancer charity from London to Cairo accompanied by 80′s pop singer Kim Wilde, snarling Fall frontman Mark. E. Smith and roly poly Christopher Biggins.

    Now be honest – which of of those scenarios is most likely to come to pass ? – the last one of course so stop feeling sorry for yourself and get back in there.

    Buoyed and encouraged by this, I walked back into the hospital and retraced my steps to the ward where the lovely Irish nurse hooked me up for IV antibiotics. I got to order my ham and cheese sandwich, chatted to my friends in the chemotherapy room and dipped into ‘The Stephen Fry Chronicles’.

    Later that afternoon, a room on the ward became free and, feeling like a fraud (as I felt perfectly healthy), I reluctantly took up residence for the next five days. At the weekend, I managed to negotiate day release to get home after lunch and return at night to accommodate my thrice daily 30 second injections and various medical observations.

    The IV antibiotics worked their magic and chemotherapy session 2 was resumed the following Wednesday after just a weeks delay.

     
    • Steve 5:42 pm on January 4, 2012 Permalink | Reply

      Andy. inspiring, amusing, improbable (point 3) and enjoyable as ever. On your triumphal return to meet your therapist in person this July do you see yourself rising up through the layers of the pyramid owing to all this weight you are shedding?

      • nbrightside 1:29 pm on January 5, 2012 Permalink | Reply

        Bad news on that front. Lost a stone after surgery but put almost half of it back on. Mainly due to experimenting to find alcoholic beverages that don’t taste as if they are supplemented with iron filings.

        There’s also this psychological things of ‘I’ve got cancer, I’ll do (eat) what I want’. However I will make a note to raise this thorny issue with the consultant.

    • Darce 12:18 am on January 6, 2012 Permalink | Reply

      Andy,
      Loved the idea of a 80s backing group, but I always preferred Clare Grogan to Kim Wilde and she has aged better than Marty’s eldest.

      Glad things are going well, but Cowlers, I need you as my “wing man” at the bottom of the pyramid… as Gibbo is now a soft southerner and TOWIE fanatic (enough said) and Hibbo won’t turn up, unless we sacrifice at least 2 virgins, so you have to be with me at the bottom of the pyramid. It’s where we belong, “bruvver” Cowling,
      Love, peace and recycled mince pies, Darce

      PS Thought of the week – That Alan Pardew ain’t half a good manager, West Ham should get him…

  • 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 ?’

     
    • 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 hin 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…

  • nbrightside 12:42 pm on November 17, 2011 Permalink | Reply  

    Wireless access point 

    Initially, I met with my oncologist at the (private) Parkside hospital in Wimbledon but he quickly recommended that my subsequent scans, treatments, procedures and consultations were all handled by The Royal Marsden who have hospitals in Chelsea and Sutton so all my data and records were available on one single computer system for all medical staff who ever needed to review my medical history.

    After the PET scan (which didn’t reveal any hidden small mammals up my back passage), I met with another oncologist at Sutton on Wednesday 5th October together with a couple of nurses who explained about the lengthy list of potential side-effects and counter measures.

    Having been initally diagnosed on 26th August and although lots had happened in the intervening six week period, I was getting slightly frustrated that the elephant in the room was this malignant tumour in my bowel. While we knew how large it was (7.5cm) and where it was (low down), we didn’t know how long it had been present nor did we know how fast it was growing.

    For all the tests and procedures, we still hadn’t done anything directly to start attacking this pesky lump that was fermenting away, sub-dividing to create more cancerous cells, and without being overly dramatic, threatening my existence on this mortal coil.

    So, just as I was looking forward to being told the date of the first chemotherapy session, another hurdle was placed on the running track in front of me.

    ‘Before we can start chemo, we’ll need to put a portacath in which will make everything much easier for you and for us’.

    Chemotherapy involves lots of blood tests – before every treatment, blood is taken to check your white blood cell count. In addition to the chemotherapy drugs, steroids and anti-sickness are also injected into the body.

    For aggressive, intensive chemotherapy, doctors prefer to administer all these drugs via a portacath as it saves the hassle of trying to locate a suitable vein on the patients arm or wrist. Chemotherapy can also recess the veins which make conventional injections more difficult.

    So, the portacath procedure is done under a general anesthetic but as an outpatient and I was duly booked in the following Monday with the first chemo treatment two days later on Wednesday 12 October.

    My initial, brief consultant with the surgeon wasn’t overly inspiring – he hauled me into central London for a brief (but presumably lucrative) 5 minute consultation which mostly reiterated what I already knew. He rudely interrupted me as I gave a brief medical history and told me of the three possible side-effects (‘infection – but that happens down the line’, ‘puncturing the lung but as I am a specialist with 15 years experience that won’t be a problem’ and ‘line getting clogged which is why the nurses flush it every fortnight’).

    Another day, another hospital – this time, the Cromwell in London. The facility appears to serve a lot of foreign people – not clear whether it’s embassy staff or rich businessmen but I can report they show Aljazeera TV and have copies of Arabic newspapers in the reception area.

    The surgeon went up a little in my estimation with his pre-op visit by showing some humility and kindly answering my wife’s questions.

    The procedure lasted 3 hours and I came home with a square dressing just below my left collar bone and felt absolutely fine.

    Again, I found myself reflecting on the wonders of medical science. Last year, my father-in-law and I wall-mounted an LCD in my son’s bedroom. We had all the parts and tools ready and the simple instructions to hand. Inevitably, one hole went into ropey plaster and the screen was not horizontally aligned to my perfectionist’s workmate’s satisfaction so we drilled another hole. The whole process took us 3 hours 15 minutes and our lunch was lukewarm.

    A skilled surgeon took less time to make a very neat incision into my chest and insert a short piece of thin rubber tube into my bloodstream. Amazing, just amazing.

     
    • Scott Evans 12:52 pm on November 17, 2011 Permalink | Reply

      Welcome to the world of silicone (port) I really miss mine although it now resides on my computer desk! Oh did you get the MAC address?

    • Ruben H 11:56 pm on November 17, 2011 Permalink | Reply

      You are being assimilated into the Borg collective. It starts with your own IP address and next thing you’ll be flying around in a cube shaped spaceship.

    • John E. Bredehoft 2:00 am on November 18, 2011 Permalink | Reply

      The reason for the surgeon’s ease is that this is something the surgeon does on a regular basis. I assume that your father-in-law and you don’t mount LCD TVs every day.

  • nbrightside 10:24 am on November 15, 2011 Permalink | Reply  

    Edging towards Chemotherapy 

    After the ileostomy operation, I spent six days in hospital recuperating.

    Just as I was on the verge of being discharged, my colorectal surgeon paid me a visit and announced that he was going to give me a couple of enemas to fully evacuate the bowel to isolate it further and reduce the risk of infection.

    So one morning an nurse squirted some lukewarm liquid up inside my bottom. I asked ‘How long before this will take effect as I’m going for a shower ? Will it be minutes or hours ?’ ‘Oh – it could be quick or it could take a while. Just leave the shower for a bit’.

    As she left the room and asked whether I wanted the door open or shut, I felt something moving and had to rapidly hoist myself off the bed and make haste to the toilet.

    I sat there and opened my bowels for the first time in a week. It wasn’t clear to me whether this was simply the same liquid she’d just squirted but it seemed like gallons.

    Simultaneously, I noted that the ‘stoma was working’ (discharging into the colostomy bag) and gratifyingly, I was also urinating. I grabbed a cotton wool bud and wiggled it around in my ear. I later submitted an entry to the Guinness Book of World Records for ‘The Most Concurrent Outputs From The Human Body’. Unfortunately, Mr. Norris McWhirter kindly replied to inform me that I had been pipped by a Mr. Henry Rollins from Arkansas who had matched my superb effort back in 2008 but, in addition, also managed to force a simultaneous nose bleed.

    The day before I went home, I had another infection flare up in my backside and my friendly colorectal surgeon said he would quickly drain the abscess to relieve the pain. Unfortunately, that meant another general anesthetic and another night in hospital.

    I finally got home and the following week saw my first consultation with my oncologist from the Royal Marsden Hospital. He recommended a PET scan to gather more information about the state of my tumour before the treatment plan was finally confirmed.

    The PET scan involves the injection of radioactive material that attaches itself to cancer cells and was quite amusing. The male nurse entered the room with a metal box clearly marked with the classic radioactive symbol. My wife looked a little nervous and asked whether she should leave the room. The scan was pretty similar to the MRI scan and took about 45 minutes. The nurse told me I was ‘radioactive and I should avoid contact with children under 5 and pregnant women for 24 hours’.

    The results of the PET scan confirmed what the oncologist already knew. There was ‘signs of spread to the adjacent lymph nodes’ which, to be frank, frightened the hell out of me as I viewed the lymph nodes as the ‘gateway to all the other organs in the body’ but the specialist reassured me (sort of) but telling me that these lymph nodes were ‘going to be removed anyway’ and ‘any spread to the distant lymph nodes would be sorted out by the chemotherapy’.

    The treatment plan was changed slightly – originally I was going to have 6 weeks intensive radiotherapy followed by surgery but now we were going to embark on six cycles of chemotherapy (fortnightly) followed by the radiotherapy at the Royal Marsden Hospital in Sutton.

     
    • Scott Evans 11:24 am on November 15, 2011 Permalink | Reply

      Hi Andy, (I must remember that these events have already passed!) Ok well glad to hear that the treatment has commenced as now the preventative measures are done. The main concern will be if that infection flairs up wile you are immunosuppressed as that will knock you about while you are fed up with antibiotics (most likely make you feel ill) then just as your body recovers from the chemotherapy you have another dose (my treatment was 1 dose of chemo every 3rd week)

      I hope that you are coping with all the stress and that your family are managing as well ;-)

      Thinking of you buddy!

    • Ed Morgan 12:17 pm on November 15, 2011 Permalink | Reply

      Andy, I can only echo what Scott’s said. Hope you’re holding up alright and the family’s keeping positive.

      Ed

    • Jonathan 1:46 pm on November 15, 2011 Permalink | Reply

      I’ve been quietly reading your posts – you know, if a publisher saw these you could easily sell the book.

      • nbrightside 1:49 pm on November 15, 2011 Permalink | Reply

        Those are kind words. I’m not entirely sure I’m going to get a book published but if it provides any comfort to others in the same boat or raises a smile, that’s enough for me :-)

    • John E. Bredehoft 6:03 pm on November 15, 2011 Permalink | Reply

      Regarding your statement about a communication from a Mr Norris McWhirter – all I can say is that YOU’RE A LIAR! YEAH YOU’RE A LIAR!

      However, I’d gladly give you a medal for your achievement, provided that it isn’t accompanied by a re-enactment.

    • lnxwalt 3:58 am on November 16, 2011 Permalink | Reply

      Andy, thank you for sharing all these very intimate details. Hopefully, it will persuade more men to be more aggressive about seeing doctors.

    • Michael C. Harris 9:27 pm on November 16, 2011 Permalink | Reply

      I didn’t know David had a hospital. Nor that he was royalty.

      I always look forward to reading your updates, they’re so honestly gruesome and explicit. Now I’m going to be imagining titles and sub-titles for the book.

    • Darce 1:34 am on November 17, 2011 Permalink | Reply

      Cowlers,
      Good to see an update and that the treatment is going to plan and that you’ve been discharged home, The other blogger is right, when this is all out of the way, you should publish it or at least share it with others as it’s inspirational, but not mawkish or self indulgent apart from the Norris Mcwhirter reference – it also shows our age, mate. I would add that “you are the wind beneath my wings”, but after your last semi scatological blog that might be tempting fate and I’ve just bought some new jeans. And in any case, Mullins can give you chapter and verse on enemas, if req’d – I’d skip it, if I were you.

      Anyway, is it possible for a meet up in the smoke with the Soft Southern Hurlers (and Northern Hurlers marrooned “dawwn Sauffth”) shortly for the usual crimbo meet up in town, etc. I promise not to wear my chav Lonsdale hoodie or to sing “Bubbles” and I assume that Sir Les will sort it, if it’s possible.

      Regards to your family and I hope they are keeping well and strong and that your girl is enjoying Brighton, my girl is always out on the lash, according to updates on Facebook. Her brother shows me, I am not about to join FB – do me a favour?! I can barely type this thing.
      Love, Peace and Footy, Darce

  • nbrightside 11:45 am on October 28, 2011 Permalink | Reply  

    my coping strategy 

    Being diagnosed with cancer – particularly when you are not expecting it is, err, tricky. People are different, people will have differing circumstances and levels of support available and each individual will have their own strategy for coping.

    This is how I try to cope. I’m not suggesting this is how everyone should cope or that it’s the best method of coping. I may subsequently change or refine this method in the coming months. It’s just my method of coping.

    I work as a technical consultant in IT. When I visit a customer with a difficult problem, I tend to perform a lot of research. I look at the specific issue I am investigating (obviously) but I also review all Service Requests they have opened in the last 6 months. I normally chat to the account manager and have a courtesy call to introduce myself and hear the customer describe the issues in their own words.

    It would have been very natural therefore for me to spend hours on Google researching every element of bowel cancer and devour every available resource describing every last detail of this horrible disease. However, I didn’t really do that. Occasionally I visit the excellent ‘Beating Bowel Cancer‘ web site which describes every aspect (symptoms, diagnosis, treatment, support, lifestyle, recovery) in easy to digest articles.

    However, I realised very quickly that the sheer volume of information was just overwhelming. Reading about everything and trying to absorb all that medical information simply tended to raise potential issues, pose difficult questions and introduced fear, uncertainty and doubt.

    This may surprise people but I don’t actually know what my formal diagnosis is in terms of staging. Cancer is categorised into stages 1-4 (I think) depending on how far it has spread in the body. If the doctors choose not to tell me the formal diagnosis, then I probably don’t need to know (yet).

    After a while, I decided simply to try to focus on my next, immediate hurdle. This hurdle might be trivial (consultation with a doctor) or more significant, an operation under general anaesthetic.

    So, if I was having a Port-a-Cath line inserted into my chest, I would probably read up about that specific procedure, the benefits and possible side effects and I would jot down any questions I wanted to raise with the doctor.

    When I had surmounted the hurdle, sometimes I would reward myself with a ‘day off’. Now this sounds stupid because I am signed off work completely and spend most of my day reclining on the sofa watching ‘Wanted Down Under’ and having an afternoon nap. Most people would view this as an indefinite holiday.

    However, on my ‘day off’, I would just do I wanted and I would try to devote no thought or waste any energy whatsoever on my health issues and whatever the next looming hurdle was. This lazy, do nothing strategy suited me very well.

    My wife is a nurse and has been incredibly supportive and understanding. She is able to articulate and translate some of the medical terminology and checks I am taking all my pills at the right time.

    The single best thing she did for me was on the day after I was diagnosed. She said to me:

    ‘Listen – I’m not going to follow you around this house checking up on you. I’m always here if you need me but if you want to listen to music, mess around on the computer or you just need 5 minutes to yourself, just go into the bedroom and shut the door and I’ll leave you alone’.

    Another thing I don’t do – or rather have done fleetingly – is to read blogs by other people who are blogging about their experiences with cancer.

    This may seem odd given that is precisely what I am doing but – to be honest – a lot of those blogs are bloody depressing. Some of the longer established ones also record the passing of friends and fellow bloggers who didn’t make it and that is very upsetting.

    Lots of people are battling cancer like me. However, no one has my exact diagnosis. It doesn’t matter whether 90% of people with bowel cancer recover (when caught early). It doesn’t matter if your Uncle had bowel cancer 7 years ago and made a complete recovery although obviously I am very pleased that was his personal outcome. It doesn’t matter if an email went round at work giving the funeral details of a colleague in the Edinburgh office who passed away after a long battle with cancer (although I’m desperately sorry to hear that).

    It doesn’t matter if someone with a very similar diagnosis and treatment plan to me suffered loads of side effects or no side effects during his radiotherapy treatment.

    It doesn’t matter because none of those people have exactly my symptoms, none of them have my body and none of them are being treated by the medical team responsible for overseeing my treatment.

    Without being too callous, all that matters to me is whether I recover and, to a lesser extent, how long it takes.

     
    • Scott Evans 12:03 pm on October 28, 2011 Permalink | Reply

      Yes the first mistake I made was to type lymphoma into Google, so that’s about as worse you can do because you are only going to see negative information or outright wrong information. It’s best to only accept what your oncologists tells you, after all they’re the expert not you!

      And as noted for your strategy on how things are dealt with… That’s going to be a work in progress ;-)

    • rich 1:15 pm on October 28, 2011 Permalink | Reply

      I’m keeping a watch on your posts, as i find them many things, but depressing isn’t one of them. Mainly informative, funny at times and also inspiring. I agree what you said about how “you” deal with your particular problem, this can be applied to all of life’s problems, not just illnesses. Anyhoo, chin-up, and keep us posted on your progress, we’re all hoping you will make a speedy recovery.

    • Doug Burns 2:14 pm on October 28, 2011 Permalink | Reply

      >> It doesn’t matter because none of those people have exactly my symptoms, none of them have my body and none of them are being treated by the medical team responsible for overseeing my treatment.

      Actually, I think those are pretty wise words. Pointless getting too wrapped up in what might be or have been rather than the reality of your own situation.

    • Tim Hall 9:00 pm on October 28, 2011 Permalink | Reply

      I agree. Statistics are so misleading when you are only concerned with one specific case (yourself). You can worry about everyone else as much as you want once you are sorted. :)

      Cheers

      Tim…

    • Bananabob 11:23 pm on October 28, 2011 Permalink | Reply

      Your last sentence “Without being too callous, all that matters to me is whether I recover and, to a lesser extent, how long it takes.” sums it all up. That is the right way to feel. I know from my experience of illness (CFS/ME for 20 years) that other people’s symptoms and treatments are not necessarily the same or what you need.

  • nbrightside 10:41 am on October 28, 2011 Permalink | Reply  

    Ileostomy 

    Tuesday 13 September – Ileostomy

    After my operation, the surgeon explained that he had performed an ileostomy (not a colostomy). The reason for this was that it was easier and quicker for him to expose the small intestine (as opposed to the large). This was because I was a ‘big chap’ (medical term for ‘fat bastard’) so my gut is covered by loads of fat. Harsh but fair. The benefit of this was reduced recovery time and being able to start chemotherapy quicker.

    I spent a week in hospital recuperating. The surgeon initially estimated ’3-4 nights’ while the nurse who did the pre-op checks said ’8-10 days’ while the insurance company authorised 5 nights accommodation (full board).

    The main problem was the stoma bag kept coming detached for various reasons; the area was still raw, tender and moist which hindered the adhesive effect. Also, the stoma was not located on the large black circle the stoma nurse had drawn on my tummy but lower down close to my belly button. This meant the bag had to attach to a fold and crease in the skin rather than a flat area.

    It didn’t seem to matter who changed the bag. Whenever I stood up or sat down, exerting pressure on that area, I was perpetually nervously checking the bag was intact and there was no tell tale leaks. Occasionally, the bag lasted 24 hours but mostly I found myself calling for assistance to change the damned thing. Initially, that need for help from a nurse, in itself is quite embarrassing although as they kept reassuring me ‘Please stop apologising – its our job’.

    When I was discharged,this frustrating problem continued and this period was probably my lowest point so far. I felt relatively strong and healthy but I could barely walk to the paper shop as I simply could not rely on the stoma bag.

    Thankfully, after two weeks at home, with some home visits from the excellent stoma nurse and experimenting with different styles of bags and accessories, we managed to nail the problem and eventually the bag was reliable and could last one or even two days before it needed changing. Better still, I chose when to change it instead of running to the bathroom clutching my tummy to avoid soiling the carpet like a newly purchased puppy.

    Friday October 7 was a big milestone for me. I had to attend a consultation with a doctor at the Royal Marsden hospital in Fulham. I took a taxi there and afterwards decided to catch the bus home.

    It may seem like a trivial thing but it just felt great to be stood at a bus stop next to normal people. None of them knew I had a stoma. No one gave me a second glance as I went upstairs. I felt like a normal person again.

     
    • Ed Morgan 10:53 am on October 28, 2011 Permalink | Reply

      Andy,

      Glad to hear that you’re keeping your morale up, people tend to think I’m being sarcastic when I say “Positive Mental Attitude!”, normally because I’m sarcastic the rest of the time, but in this case I’m being genuine.

      Ed

    • Scott Evans 11:07 am on October 28, 2011 Permalink | Reply

      This time last year my wife had emergency surgery for a bowel resection. As part of the preop from the nurse (who also drew pretty black circles) filled us in on all of the possibilities of what to expect post op. I was actually quite horrified for the first time! I wasn’t to sure how the wife was going to handle that she may have (all be it temporary) a colostomy. The first thing I did once she was brought up to the ward was to check for a bag (or 2) and I was so relieved when she didn’t have any.

      Really it should not have mattered weather there was a bag or not, I suppose I was in a bit of a panic cause I did get a strange look from the nurse as I was rifling through the bedding to look at the wound site!

      So consider where you were a few months back… And where you are now, it’s going to be a slow walk, but you are going to make it through all this…

      • nbrightside 11:50 am on October 28, 2011 Permalink | Reply

        Scott – You’ve really been through the mill. Glad your wife came through her problems.

        To be honest, if I was offered the chance to emerge from all this solely with a colostomy bag strapped to my waist for the rest of my life, I’d take that option immediately.

    • Ruben H 12:00 am on October 30, 2011 Permalink | Reply

      Keep up the good work Andy. All the best for a timely and full recovery.

  • nbrightside 10:25 am on October 19, 2011 Permalink | Reply  

    Colostomy Whoopee Bags 

    Hello Dragons

    I am asking for a £50,000 investment in return for 15% equity in my company – ‘Colostomy Whoopee Bags’R'Us’.

    [Theo Paphitis raises an eyebrow while Peter Jones adjusts his immaculate red tie]

    The colostomy bag market is massive with worldwide revenues of $84 million in 2010 and a massive, unexplored niche…

    [Hilary Devey frowns - health investments are notoriously risky but everyone loves a good news story]

    The problem with colostomy bags is they deny a man a fundamental human right – the right to produce an audible fart.

    Let me explain – I have a colostomy bag which works perfectly but it tends to fill up with gas so the fully inflated bag can resemble Christopher Biggins’ face or one of those novelty hot air balloons you see near Bristol.

    [Duncan Bannatyne impatiently raps his fingers over his wad of money]

    Although there is a small vent intended to slowly release the air, this doesn’t work very well and this major problem isn’t even mentioned in the ‘Living With Your Colostomy’ booklets. Never mind ‘Sexual Relations and Intimacy’ – what about farts ?

    So, in answer to the desperate pleas of men everywhere, ladies and gentlemen, I give to you – the ‘Colostomy Whoopee Bag’ ! This accessory simply attaches to the existing vent and allows the owner to discharge the bag while producing a realistic farting noise. The duration and volume can also be adjusted using these buttons.

    18p to make in India. Sell for £7.99. Already secured a lucrative contract with the NHS. Any questions ?

    Deborah Meaden interjects – ‘Frankly, this is a shit idea and I find the whole concept quite distasteful’. Duncan though is thinking ahead – ‘What about expansion ? What about diversification ? What about year 3 revenues ?’

    Oh I’ve already thought of that – we are currently prototyping a ‘Colosto-stylo-o-phone” for the musically minded and trying to get Rolf Harris on board.

    Also, for the larger man from north of the border, we are running clinical field trials evaluating ‘Colosto-bagpipes. This is an untapped market – quite literally’.

    Duncan has heard enough – ‘That’s brilliant. I’ve heard enough. I’ll offer you all the money. But for 40% of your shitty little company’.

     
    • Robert 10:56 am on October 19, 2011 Permalink | Reply

      I’d buy one.

    • Scott Evans 12:09 pm on October 19, 2011 Permalink | Reply

      You’re a funny bastard! :-D

    • David Marsden 12:11 pm on October 19, 2011 Permalink | Reply

      Clearly also an important Human Rights issue re: freedom of expression.

    • John E. Bredehoft 12:23 pm on October 19, 2011 Permalink | Reply

      Sorry, I’m not investing. I don’t want to be left holding the bag if all the air gets lost from the investment.

    • Bananabob 10:24 pm on October 19, 2011 Permalink | Reply

      I think you have missed your market. The bags full of gas could be sold to Toyota to power the next generation Prius.

    • crofty 4:14 am on October 20, 2011 Permalink | Reply

      maybe you could has celebrity look a likely bags , you example of christopher biggins . My favourite would be 5 scale model of eric pickles MP (constituency of Brentwood and Ongar)

      • nbrightside 11:13 am on October 20, 2011 Permalink | Reply

        Even better, you get to slowly squeeze the last living breath out of Eric Pickles MP – daily.

    • crofty 6:29 am on October 20, 2011 Permalink | Reply

      i was reading early about the workers at foxconn making apple stuff in china and how they only got 10 minute comfort break. I was just thinking you could be selling it too nice foxconn management as an aid too productivity , none of the workers will need too leave the production line. The main think i was thinking of was all the workers doing the company via your device and will become an some good PR for them when its leaked on to youtube showing how happy the work force are and how down with the kids they are doing some tacky cover version of justin bieber or something that fitting too shitting themselves.

      here is article from guardian – http://www.guardian.co.uk/environment/2011/oct/14/environment-home-mobile-phones-laptops

      viral video of fashion of this Filipino, Philippines “Dancing Inmates” from Cebu Provincial Detention and Rehabilitation Center (CPDRC),

    • Becky Newborough 10:11 am on October 20, 2011 Permalink | Reply

      Classic post – well done for seeing the funny side to your illness and for making me smile :)

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