Hello constipation! – Oct 2018

Once the worst of the vomiting from this second round subsides I no sooner start to relax when I discover another delight of chemotherapy, one that had been alluded to in the various ‘side effects’ literature but I had not previously had the pleasure to encounter.  Hello constipation!  And who knew how uncomfortable a condition that could be?  I suppose I had got away lightly in the first round as I had been having the marvellous smoothies.  Also, I had taken some Senna tablets, in fact I asked the specialist nurse if it was okay for me to do so and she had replied, “yes, in fact I’d recommend it”, though at no point had done so….  If I sound a bit grumbly at this point, I apologise.  I do understand the huge pressure the NHS is under, I understand the chronic underfunding they are battling against and I know how hard the individual staff are working.  I suppose my gripe is I would have found it very helpful to have a short chat with someone about some of these likely side effects and options to minimise their effects or at least be prepared when they occur?  For the 30 minutes or so the chemo is dripped in a nurse sits with you, perhaps this could be a good time to discuss some of these issues, talk about remedies, warning signs, how to help yourself prevent the worst onslaughts?

In fairness the hospital has a Big C centre that I could be visiting and I’m sure I’d get lots of answers and advice there but I’m only ever at the hospital for my chemo treatment and somehow I’ve not felt up to wandering over there to ask questions that I don’t know I need to ask.  Anyway, in the event, once I am at the stage where the cramp in my stomach has left me so snappy that the family can bear me no longer, David calls our GP, the ever-wonderful Dr Duthie, who immediately prescribes some sachets for David to collect for me and books me in to come in for a visit.

The sachets themselves are for regular aid for mild constipation or in high dosage for the charmingly described “faecal impaction”.  And guess which camp I’m in!  I start the treatment – nothing.  I take the second dose that night – still nothing shifting.  And on the third try….  Hallelujah!  Houston, we have lift off!  The relief, the sweet relief tempered slightly by a minor new problem.  Whereas previously I was desperate to fart in order to release some air, now I am petrified of farting, lest more than air escape me…  But after a settling period I feel so, so much better. 

At the GP appointment we talk through my experiences thus far with Dr Duthie.  He suggests some measures to help alleviate the worst of the side effects.  For the next round, he advises I start to take the anti-sickness pill Ondansetron, a day in advance of the infusion of chemo to help prevent the vomiting from starting.  In addition he will let the District Nurse know that I may need an anti-sickness injection over the weekend, hopefully to avoid any need for me to be driven to Norwich, vomiting into a bowl.  As Ondansetron is itself a notorious constipator, I should have a sachet of the bowel livener a day while I take it.  I feel immensely cheered by this meeting with its actual plan of action.  That feeling of taking back some control, however illusory, for me is the best medicine. 

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Chemo Go Chemo Go Chemo Go… July 2018

The chemo regime begins for me, with the insertion of a Portacath.  A cunning device that will sit below my skin so that intravenous chemo can be piped directly in rather than through a canular which tend to be a problem with me and my tiny deep veins.  The appointment is for 7.30 am which horrifies me as I’m not an early riser but needs must.  David and I arrive about 10 minutes late and I wait, nodding off gently for about 40 mins.  Then they come to do the pre-procedure questionnaire.  They check my name, date of birth then ask me to wait a minute.  They return, apologising profusely.  It seems we were not 10 mins late, rather 24 hours early.  They are too busy to squeeze me in so we agree to return the next day.  I feel, foolishly  I’ve gained a reprieve. To add to this boon, that night England win a penalty shoot out to proceed to the quarter finals – could this be a good sign?

The following day there is no dodging it and we return to the hospital where, despite the early hour the mood is chirpy with chatter of the England win.  I find myself becoming very tearful.  This worsens as I am taken in to the bay,  I have no idea why.  It’s not a difficult, dangerous or painful procedure.  it will last only 30 mins, under local anaesthetic and they are explaining everything to me as it happens.  I try to keep breathing, nice and calmly, deep breaths.  I’ve done this so many times in scans, when the panic starts to rise.  But the tears still come.  This is not about this procedure, this is what it represents and I am overwhelmed by it, overwhelmed by my fear.  Afterwards I wait and they make me a strong sweet tea.  I am shaking uncontrollably but it subsides gradually as the tea kicks in.  I am very relieved to call David to say he can come and get me, I want to go home.  I can’t delay any longer, I’ve avoided it for 15 years but on Friday I will start chemo.

On Friday we head to the Colney Centre, where we’ve been quite often for appointments with Dr. P.  This time though, we won’t be going through the doors to the consulting rooms, today we will go left into the Weybourne Centre, were chemo is administered. When we’re told to take a seat, we grab the two closest to the doors of admittance, like over eager students on the first day of term.  I am weeping, I hope discreetly.  The chap next to David strikes up a conversation.  He is here for his 19th cycle he explains cheerily, he’s now on it for life, as it were.  I feel faintly ridiculous but still can’t get a grip on the waterworks.  Then all of a sudden, I am called, my time has come.  We go through, they are more than happy to let David in with me.

It’s bright and airy inside and we are shown to two really comfy chairs.  They check my Portacath and establish it has settled enough to be used. There’s a bit of pain when they try it the first time, unsuccessfully.  Less so on the second.  And then it’s in.  The source of so much terror for me, drips in, over the next half hour and it’s too late now.  I’m doing this, the treatment of last resort is underway.  While it drips slowly through I observe the man opposite.  He’s not very old, emaciated but he looks happy, chatting with friends and family.  And he’s eating!  Working his way through a sandwich and crisps and I realise I’m ravenous.  As if by magic a Macmillan volunteer pop up offering a sandwich and yes I do want it, I want it very much!  The next step is 5 tiny tablets then we can go home with the third element of the combination therapy to be taken in tablet form for the next 10 days.  I feel suddenly optimistic.  Perhaps I can do this after all.

 

 

 

Appointment with Doom – Feb 2003

I don’t recall how long exactly it took for my biopsy appointment at Addenbrookes to come through, only that it felt like forever.  I felt then (and to my shame still do!) a foolish pride that my referral letter from the N&N described me as a charming 32 year old lady.  I’d never knowingly been described as charming before and I rather liked it.   All I vaguely recall is going to the hospital the evening before the operation and a very kind female doctor shaving patches of my head on one side.  I must have had the operation some time the next day. I don’t even remember how long I stayed in.  But I do remember vividly a conversation I had with the surgeon, I think, following the biopsy.  “I’m generally a very positive person”, I said, “but I do want to try to prepare myself for what’s ahead.”  He took my hand, gave it a gentle squeeze.  “There’s always a treatment”, he replied and I felt very comforted.  Entirely reassured.  Once they knew exactly what it was they were going to deal with it and all would be well again.  I relaxed and went home much happier to wait to be called back for the results.  Again I don’t remember how long this wait was nor how my mood was.  I think all felt okay, the busyness of my everyday life continued though I was not working at all at this stage, my company had me signed off on full pay so I had no financial concerns, something I’m well aware made me far more fortunate than the vast majority in a similar position.

The day came for me to be called for results with the Addenbrookes team.  David was coming with me and for some reason, we decided to make the trip by train, rather than drive.  Just in case the news was bad, we felt it would be better not to be driving.  This was most unlike us.  Perhaps this was our insurance policy – if we are prepared for the worst, the worst won’t happen.  If so, we had gone with the wrong provider.  But a train route had recently opened up between Norwich and Cambridge so we gave it a whirl.  I think we made plans on that journey, of things we do with our garden, planting we’d do, flowers we’d nurture. Planning a future we desperately wanted to be seeing.

We went in to a room and saw a single doctor, a neurosurgeon, quite young, not one I had met when I had my biopsy.  I don’t remember his name.  What was the preamble?  Did he bring up images of my scan?  I don’t think so.  I imagine he told us something about the frozen section not being entirely clear but that it was a grade II/III oligo-astrocytoma in my front parietal lobe. He probably talked about how it was going to affect the motor function on my left side because the right side of the brain controls the left of the body. There was probably other technical information I didn’t take in.  What I did take in was the following words, “It’s inoperable and it’s incurable.”  My world stopped.    I believe he said “I can’t tell you if you’ve got 3 months or 3 years. “, or words to that effect.  I heard nothing after “3 months”.  But there’s always a treatment!  I wanted to scream at him.  The other one promised me, there’s always a treatment.  Much of the rest is a blur, David and I were both sobbing uncontrollably.  The doctor was clearly uncomfortable but I think he told me that I would be feeling anger and be in denial and that he would refer me to Oncology who would discuss next steps.  The journey home was almost unendurable.  It was cold and grey on Cambridge train station and all I could think about was my children and their young lives and that I wasn’t going to watch them grow, I wouldn’t be around to nurture them, be there for them when they were sad or hurting.  That I would be gone, before they even had a chance to create memories of me.