Border Lines

From London to Berwick: Culture shock? Oh, yes!

“Welcome to the weird and wonderful world of chemo”

‘I still can’t believe we’re going through this.’ The sight of my morning drugs: steroids and Capecitabine (a drug that stops cells making and repairing DNA so that cancer cells cannot reproduce and survive) prompted my 14-year-old’s comment.

‘It’s surreal, isn’t it?’ The voice may or may not be mine and may or may not say the words I think it’s saying.

I am at the point in my chemo cycle where the world is a distant, lost place. A place I observe from outside. I make a mental note to an area that must still somehow be wired to the real me that, if I ever set up a cold-calling scam, pressurising cancer patients at key points in their chemo cycles would ensure a really great hit rate. Personally, I’d sign up to anything in my current state of abstraction.

Six months ago our little family was in manic upheaval. The 14-year-old (then 13) was heading off on a new adventure. For two years my husband and I waged a battle to dissuade her from going to boarding school: there were our principles (already smashed by private school attendance of her three half siblings); the finances; and the fact that I simply didn’t want her to go. After all, what was the point of me without a child at home? But she slept with the prospectus of her chosen school under her pillow for a year. Her persistence wore us down. We dithered and said she could sit the exam. The battle was lost. Or won.

On 2nd September 2015 we took her to the school and agreed that we must put all our misgivings aside and get behind her new adventure. In fact, my husband had begun to relish having a little more time with me – who wouldn’t?! And he’s been granted that, but maybe not quite in the sneaky long-weekend-away manner he’d anticipated. By the time our 14-year-old was on her way home for October half-term, I’d been diagnosed with bowel cancer (if you’re interested you can read more about that here) and we were wondering how we would tell her, her sister and brothers, and the rest of our family and friends.

And now, a colossal operation down the line, we have entered what one of my new cancer buddies dubs ‘the weird world of chemo’. I added ‘wonderful’ because there is something so extraordinary about the effects these drugs have on you that it is difficult not to have a sense of wonder about it all. Who’d have thought a dose of drugs would make your nervous system so sensitive to the cold that you’re not allowed in the fridge or freezer for 48 hours in case your oesophagus goes into spasm? The good news for me is that I’m not going to lose my hair. But I feel almost guilty about that. A chemo fraud, if you like.

Dressed for the fridge

Dressed for the fridge

Post-operation and during the general trauma of being in a ward where it feels as if doctors and nurses are just about managing to remember how many patients they have and what they are in for, you think you’ll never forget the small indignities. The waiting for your wound to be examined by a team that doesn’t look you in the eye; having your urine bag emptied; being asked a checklist of questions about how much you’ve drunk, how much you’ve peed and whether you’ve opened your bowels – and sensing that asking the questions is more important to hospital life than your answers.

A lot of the time it felt like being in a class of 30 primary children with just one teacher. Although in class vomiting or soiling yourself would probably put you in pole position for attention. I don’t blame the doctors or the nurses for this – although just like in real life there are people who work in medicine who are nice and those who are less nice. On the whole I blame lack of resources – particularly human – and an attitude that, I believe, has built up by stealth over many years since management started trumping medicine. As a patient, you always know they want you out of that bed to make way for the next body. You are also keenly aware that you are trespassing in an environment that is not your domain. That sense is compounded by a sort of conspiracy that ensures that you will never feel totally welcome there. For example, people walk into rooms and don’t acknowledge your presence, because you’re in their space not somewhere you truly belong.

As a patient you always know they want you out of that bed to make way for the next body

When nurses stand around your beds in the ward discussing how they can’t wait to be out of there, and how they want to be on holiday now, and how no one wants to go to ward such-and-such because it’s a poison chalice, you know things aren’t quite right. When a night-shift nurse comes into a post-abdominal surgery ward with a streaming cold (the terror of anyone who’s had their belly slashed in two is having to vomit, cough or blow your nose), a relentlessly loud voice and squeaky shoes, you know things aren’t quite right. When you’re told they’ll be ‘right back with your painkillers’ and a couple of hours later there’s still no sign, you know something’s not quite right.

Of course, you are also ill, frightened, and in pain. Probably no amount of care is going to stack up to exactly what you think you need. Even so, I can’t help thinking that if hospital wards were run more along the lines of ‘this is your home during your stay here’ rather than ‘you’re just someone else passing through’, healing and spirits might be improved (don’t get me started on the food). Part of me craves for the return of the Staff Nurse or Matron who – when I was six and having my tonsils and adenoids out – seemed to know exactly what was going on in his/her ward, and who was doing what at any given time.

You are ill and frightened and probably no amount of care is going to stack up to exactly what you think you need

But, as I say, time moves on. And, so do you. Frankly, you’re just relieved to be alive and out of hospital. And very grateful that there are people in this world who are prepared to poke around in areas of your body which most of us associate with graphic veterinary programmes. Not to mention people prepared to work excoriating hours because there simply aren’t enough of them, suffer abuse at the hands of those they treat,  and have their morale battered through the endless political shenanigans that are tearing lumps out of our wonderful NHS. No wonder doctors and nurses are as keen to get home from hospital as the patients.

So. I have left the ward to the next tranche of patients. And the next, and the next… I have all but forgotten the eight weeks spent showering with a plastic bag taped over my wound, the infections, and the scares. Even the shocks and disappointments that felt so huge at the time now gather dust like discarded party balloons. I have entered the next chamber of the cancer machine. I am on my third of eight adjuvant chemotherapy cycles. This treatment is designed to reduce the risk of the cancer coming back. The op to remove the tumour in my bowel was completely successful, but the tumour had grown through my bowel wall and was present in five of 28 lymph nodes – thereby increasing the possibility of some loose cancer cells drifting round my bloodstream and potentially leading to secondary cancer. Knowing that this treatment is incredibly brutal I did ask my oncologist if, in my position, he would go ahead with the chemo. Perhaps predictably he said yes.

I’m grateful that there are people who are prepared to poke around in areas of my body which most of us associate with graphic veterinary programmes

And so chemotherapy begins

And so chemotherapy begins with an IV shot in the arm

We looked forward to the chemotherapy with a desperation that bordered on fanaticism. I needed to be well enough to start it, the sooner we started, the sooner it would be over, then we could put all this behind us….We read about the side effects and wondered what that would mean in real terms. How hard can a bit of pins and needles in your arm be? Tiredness? Nausea? The latter was my biggest fear and the one I have been troubled with least so far. In fact, irrationally, it was a purple blob which appeared on my forehead one post-chemo morning that reduced me to a gibbering wreck. It went pretty much as quickly as it arrived and, whichever way you cut the side-effects, life simply doesn’t let you dwell on stuff too long. There are beds to be made, school trips to stock up for, meals to be cooked, walks to be had, and, yes, laughter and silliness to be embraced.

The husband was galvanised by the news that unprotected sex during chemotherapy was out of the question – unless he wanted some buckshee doses of chemo. We live in a small town where attempts to discreetly buy condoms thrust you back to the mumbling paralysis of teenage years. My husband set off to an out-of-town supermarket and bumped into a friend on his way in. He bought some chewing gum instead, worried that they’d think he was having an affair. I found it a tad hard to engage with his attempts to ensure sex would be possible through chemo. Possible was one thing. Probable quite another.

Nevertheless, there’s a weird paradox about having cancer. You really don’t want to think about it too much. You long to do ordinary things and to have ordinary conversations and be able to continue with ordinary life. But, somehow, you’re thinking about cancer all the time. It’s always there. It has changed your life and it will continue to do so. It refuses to be ignored. And, so, in amongst it all, my husband’s quest for condoms was actually a source of light relief and entertainment for both of us.

You receive dire warnings about your compromised immune system during chemo. You might be struck down at any minute by a dramatic and life-threatening infection. The merest prick of a rose thorn could lead to septicaemia, an infant’s cough could send you to A&E with pneumonia. This does make it almost impossible not to be self-obsessed and cancer-obsessed. One part of you wants to enter a chemo purdah until it’s all over. The other wants to be as normal as possible – grabbing a coffee with friends (when you have cancer loads of people want to have coffee with you – and pay for it: win-win!) whilst trying not to worry that someone with some awful stomach bug sipped from the cup before you.

You try not worry that someone with some awful stomach bug sipped from the coffee cup before you

I always hoped that if I was seriously ill I would be like Cousin Helen in What Katy Did or Beth in Little Women. Suffering beautifully and inspirationally and encouragingly. People do respond well to a positive sick person. Positive sick people are way easier to be around. I guess it’s a two-fold thing: (1) It’s really hard to know what to say to someone who’s going to pieces or moans all the time (and, trust me, well-meaning as it is, ‘It’s going to be okay’, isn’t totally the best choice) and (2) It’s nice to imagine that you would be ‘strong’ and ‘positive’ in their situation. I’ve met inspirational people on their third rounds of chemo, facing unimaginable discomfort and anxiety, who laugh and joke and encourage. And, although I’ve not seen it, I’m guessing that like me they crawl under the bed sheets from time-to-time and have a good sob. Not because they’ve ‘given up’, and not because they’re ignoring the countless blessings they still have despite their illness (yes, you can be fed up and know you have many blessings in your life, and that there are others worse off than you). No. Because, like my 14-year-old, they can’t quite believe they are going through this. And it’s hard. And there’s no right way to behave or deal with it.

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15 thoughts on ““Welcome to the weird and wonderful world of chemo”

  1. Linda Jackson on said:

    I came upon this by accident.( looking for a new sun lounger, dont ask) and Like everything you write it had me nodding and chuckling with delight. Wishing you all the best, and keep your chin up. Thank you.

  2. Helen on said:

    Wishing you well. Just jumped on the cancer train myself – such fun! Mine is breast cancer. Mastectomy & reconstruction 10 days ago & I’m waiting for results. Love the north east. Spent my adolescence there 🙂

    • Hi Helen – thanks for stopping by. If you’re going to go through something like this, the north east is certainly a fine place to be. I hope you are now somewhere equally inspiring and comforting. All good wishes for your recovery and the results. Waiting is such a funny old business.
      Jackie x

  3. David Stubbs on said:

    Thank you for this. I am currently awaiting my 6th chemo of eight. I have all the symptoms and side effects that you describe. What lies in the future? For me after mid May when I have my 8th (last?) session of chemo. By the way I’m in Spain, but the situation is exactly the same.

    • Hi David – sorry you’re going through this. It’s certainly not pleasant. Sadly there are so many of us. The side effects are certainly intense. I’m rather hoping they may drop my dose for number four or give me a central line. My poor arm and hand are totally hammered after just three cycles! I hope and pray that the time after mid May will be a real time of regeneration and peace for you. Thanks for commenting – the wider the dialogue on these subjects that are so hard to talk about, the bigger the impact. I hope. All the best. Jackie x

      • David Stubbs on said:

        Hello again,
        What I forgot to mention was that before we moved to Spain, I taught at Berwick High Schol from 1991 to 2008. Dilys worked there with me for eons.
        The pains and tingling in my arms and hands after the chemo are indeed very unpleasant. I also have a large swelling on my forehead, strange.
        What is strange is the feeling that “I have (had?) cancer. Where to from here? Am I no longer in control of my life? The answer is, I don’t know. Everyone carries on the same, until they ask, “Oh, you were ill. How are you now?” “I have cancer”. There’s no answer.
        It was a very traumatic period in my and my wife’s life. It centred on the Spanish Health System. May I add that neither I nor my wife speak Spanish with any degree of fluency and so there were difficult moments, but also hilarious ones too. The staff at the Spanish hospital were superb, from the surgeon, who performed my 5 and a half hour operation to the nurses who lifted me in my bed and bathed my more than ample body. It is the system of a relative being in attendance 24/7 which nearly finished us. My wife was wonderful, but sharing a room with a man from Mars and his wife from Venus nearly killed us. However because we have no other relatives in Spain, no one could take over. There were volunteers amongst friends of course, but performing some of the necessities in the middle of the night is not really what you want a friend to do. We got through and were sent home before the catheter was taken off, and my wife had to bath and dress the stitches. (It was cancer of the colon, I had, but no one mentioned the ‘c’ word at all. ” You have a tumour.”)
        Thank you, Jackie for your wishes and I hope that you come through and the chemo does its job.
        Regards,
        Dave Stubbs

      • Hi Dave
        Gosh what a time you’ve had. It’s hard to imagine going through this in a foreign language! I’m glad your treatment has been sound albeit challenging. You and your wife must be exhausted. The chemo is certainly one hell of a thing. The tingling arms and facial muscle spasms make for some interesting moments! Dilys has been in touch so I’m really glad to hear from you. Only sorry you’re having such a rotten time of it. I agree about the ‘ where do I go from here ‘ thing although am encouraged by the many people here in Berwick and elsewhere I’ve met who have exited cancer world and continued with life. I also can’t decide whether I have cancer now or not. Very strange. Good luck with the final treatments Dave and if you’re ever back in Berwick do look is up. Jackie

      • David Stubbs on said:

        Hi Jackie,
        Just thought I’d drop you a line after my sixth chemo session. In Spain it is done this way. I have an appointment at 8.00am, to which I am supposed to bring a relative. (My poor wife). I have a blood test straight away. There is always trouble find an appropriate vein in my hand or arm. I try to change from left to right each session. Yesterday my normal man wasn’t there and I had a lovely young nurse. Sets off the blood pressure at my age. She found a vein, but I wasn’t convinced. (Neither was she). Kept the needle in for the chemo. Wait outside for results of blood test. Usually 90 mins., but has been 4 hrs. Yesterday quite good. 10.20 see doctor. Prescribed tablets (capecitabina 500 mg) 3 after breakfast, 3 after evening meal for 14 days. Good wait outside to be called for treatment, usually 30-60mins, while Anne goes to pharmacy (in hospital) to fetch tablets. 11.45 called to treatment room. Hitched up to machine two drips, one lasts for 15 min only, the other 2and a half hours. 15 mins no problem. Change to “limpio” which means clean. Problem just drips out, meanwhile other chemo drip suspended. 15 mins of trying, can’t get both to work in same drip. Comprehension of Spanish long gone by this time. Disconnect “limpio”, carry on with chemo. Worry, will the “limpio” have to be connected after chemo, thus doubling the time. Cannot get through with my terrible Spanish. My fault not theirs. I’m in their country taking advantage of their health system. Problem is, the vein to which I am connected, is too fine to take both drips. Every 10 mins. nurse asks, “dolor?” pain? No, no pain. It’s not until afterwards I realize that the “limpio” is to calm the effects of the chemo going in. 1.15 finished. Quicker than normal. No need to put in the “limpio” now, I don’t think I could have take any longer. Needless to say tingling pains in hand and arm worse than normal for rest of day. Someone tried to shake hands with me later and was surprised when I rapidly withdrew my hand. Next morning as usual, still tingling in hand and arm. Worrying whether it will be constipation or the opposite this time.
        Thought it might be of interest for you to compare the treatments.
        On another matter, I don’ t know what Dilys told you of our history, but it bears a marked resemblance to yours. We moved from Ealing to Ayton in October 1988. I had no job in the north or Scotland. Commuted to London until December 1990. By which time Mrs Thatcher had done her worst. We had two children ( 5 & 3). Then got the job at Berwick High. As you say, Culture Shock. Major. More of that if you’re interested when chemo is over. Still no nearer to finding out what happens next.
        Good luck with your future treatment. Let me know how it goes.
        Dave Stubbs

      • Hi Dave
        It sounds like a very similar procedure in Spain to that here in Northumberland – other than the need for a relative to be present and I usually have my blood test the day before the IV. My husband does wander over from time to time to say ‘hi’ which is nice but he doesn’t have to be there. Like yours, the nurses usually have a bit of a poke at various veins before they find a suitable one! I’m having the chemo into a vein in the crook of my arm now as I have such intense reactions to the IV. In fact, the oncologist is reducing my dose. The first time I had the chemo I either didn’t hear of they didn’t say that they run a saline drip through first which, as you say, clears the passage for the chemo. I am so suggestible that, thinking the saline was the chemo, I began to feel intensely tired, imagining that the chemo was having an immediate impact! What a slog it is! But hey-ho, it may increase our chances of not having a recurrence!! I look forward to hearing more stories of your relocation ( Ilived in Acton when I forst moved to London in the early 80s) and experience on the other side of chemo! Thanks so much for being in touch and keeping me posted. Jackie x

  4. You write so well that reading it brings everything back to me. I was diagnosed with stage 4 bowel cancer & had 2yrs of treatment. Capecitabine is harsh drug & much easier via a line. The good news is I’m still alive !!! Fit & back in the real world.
    One day you will look back on this as a bad dream! I know cancer could be lurking somewhere in me but I can’t let it worry me & every6mths I get a clear scan is another 6mths of living life.
    Keep writing and here’s wishing you a speedy recovery.

    • Hi Liz
      How great to hear your story. Thank you. I’m so glad you’re relishing life and looking forward. That’s such an encouragement to those of us going through what you’ve already dealt with. Thank you so much for commenting and here’s to a continuing clean bill of health!

  5. Pippa Turton on said:

    I too went through Cancer Treatment (Breast Cancer, also in the Lymph Nodes) – in 1998 – my original prognosis suggested that I may not survive more than 2 years – I had fairly heavy duty treatment which has now slipped to the back of my mind – a thing of the past – not pleasant at the time, but I kept the belief that the experts who were caring for me knew what was for the best – apparently they did! I have had a couple of scares since, but thankfully all is still well. One of the most difficult things I remember having to cope with was well meaning friends, who had done some research, and found the ‘Latest alternative foolproof cure’ – they meant well & genuinely wanted to do anything they could to give positive assistance – my only advice would be to listen to your doctors and believe in their training – once you start doubting that you will find you become less positive about your own chances of recovery – stay positive – endure your treatment and relish the prospects of a full recovery – Good Luck & who knows, maybe we can meet one day and compare notes! Pippa (Tina Lang’s former Sister in Law!)

    • Hi Pippa thank you for commenting and for sharing your story. So encouraging. You are right about listening to the medics. It’s good to be engaged and informed and to ask questions etc but I certainly don’t feel like telling the experts how they should approach my treatment! I have had some wonderful care from excellent and compassionate people. Take care. X

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