Round Two – Sep 2018

By the end of my “break” I am feeling basically back to normal.  The summer holidays have been particularly long with glorious weather, it felt like they would go on for ever.  Then before I know it, Posy has her birthday and I am due back at hospital for round two.  No tears for me this time, not now I know the drill.  I fair skip into the Colney Centre, ready for my spot in  a comfy chair and a nice cup of tea from a McMillan volunteer.  During the week I had a blood test done at my local surgery.  As ever they  found it difficult to squeeze much out of me but there was enough apparently for them to check my platelets which were excellent, thank you smoothies!  They need to check the white count but they have a machine on site to do this.

My Portacath is used to get the blood and I am delighted it can be used both to get blood out as well as do the infusion, what a clever device, how smug I feel for getting it put in!After a few minutes the nurse returns.  She is very sorry but they can’t proceed with my treatment.  This news comes as an absolute shock to me, this is not something I thought would happen.  It seems my white count is too low.  It has to be over 1 and mine is languishing at 0.24.  But I feel fine!  What has gone wrong?  What have I been doing wrong?  I’ve had all the smoothies with spinach and seeds and other shite, why hasn’t that been good enough?  “it’s just the treatment” the nurse keeps repeating.  I don’t understand and I feel unaccountably upset.  The nurse tells me they’ll defer me a week and my count will come back up.  I should be pleased at the reprieve but I am fretful as I’ve plans to attend a good friend’s 50th at the end of the summer and I’m worried this will throw out my timing.  But I calculate the next week will still be ok and I defer for the week and return home.

The following week David and I arrive at hospital again.  We resume our spot in the comfy chair.  Again I feel fine, as fine could be so all should be well.  My blood is taken through my trusty Portacath.  I’m getting more used to the sensation now.  It’s not without pain but in skilled hands it’s very momentary.  Again we wait and the nurse returns having checked my bloods.  It’s not good news; my white count is up but only to 0.46, still not high enough for the treatment.  The nurse explains we’ll defer another week and that she’ll speak to Dr Pinelopi, my consultant.  She’ll review things, possibly review my dose and we’ll see her next week for a discussion.  I feel I have failed, totally and utterly failed.  David and I return home, dejected.  I resume research on how to improve my white count.  We realise through this research that I am effectively neutropenic and should therefore be taking certain precautions.  These include for example, washing the spinach etc. that I am shoving down in my morning smoothies.  Ooops. However, these precautions are all about staying free of bugs as your system has no immunity to fight infection, they won’t actually bring the white count up.  Further searching turns up zinc and almonds.  I add in a handful of almonds and a zinc and vitamin C tablet to my daily regime.

Also, and this cheers me up beyond measure, I make contact with Hannah, who will be my new specialist nurse.  While Tracey has been lovely over the phone, we’ve never met in person as she doesn’t work on a Friday, when my treatments happen and we’ve had fairly limited contact.  Hannah, however,  will be there for my treatment and I feel comforted that this may help me to sort out some of the confusions and anxieties I am feeling, if I have a face and a person I can perhaps know and just maybe get to trust.

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Not so bad – July 2018

Following the zapping in hospital I am released home to take the next part in tablet form over the next 11 days.  I feel ok, just tired.  I’m also taking a decent anti-sickness which I suppose is helping though today I dropped down to a lower one as there is a risk of constipation with the one I was on.  I feel good enough in fact to decide I will go to see a local play, that a friend is in.  It’s a hot day, really hot and I start to find it a struggle.  Once in the hall, my anxiety rises.  It’s overwhelmingly hot, my friend and I are fanning with our paper programmes but it doesn’t help.  I hope the play will distract me.

As soon as there is a lights out at the end the first scene, I bolt out of the hall and gulp in some air.  A lady appears with a chair for me.  My friend appears soon after and drives me home.  As I get to my drive I puke up some bile.  I guess that was too much, too soon.  It is, also, abnormally hot!  I am still being a bit sick and David calls the oncology centre for advice  They tell me to go back on to the better anti-sickness drugs while I am taking the chemo drugs so that is what I do.  For the next 11 days I pop the pills and dutifully start each day with a health boosting, constipation busting smoothie, packed with raw spinach, fruit and seeds and a bit of yoghurt and juice.  I’d have laughed aloud if you’d told me I’d enjoy anything that looks so repulsive but amazingly I do.  It is refreshing, easy to sip and I’ve no appetite for food.  And this must surely be the most amazing side effect.  I no longer feel queasy, thanks to the anti-emetics, but nor do I want to eat. This is a first for me, I can normally eat under any conditions.  Stressed?  have a snack.  Sad? have a comforting bit of cake.  Happy?  Celebrate with a meal.  There are simply no times when I don’t think a little nibble of something won’t improve things.  Clearly if they could extract the element of these chemo drugs that has this effect, without the poisoning the shit out of your body they’d be making a fortune…  Enough probably to fund research to sort out all our cancer and weight woes!

During the period of taking the chemo I am very tired, I can’t manage without a nap in the day and I’m not getting up to much more than the odd amble out with the dog.  The weather is still really hot and quite humid and seems unlikely to change anytime soon.  I love hot weather normally but this July I yearn for some rain.  Latitude is happening at the weekend.  We’ve got weekend tickets but I have realised I won’t feel up to camping, I’m not one of life’s enthusiastic campers anyway.  But I can bear it at  Latitude as we live near enough that we can bail out should the weather turn really bad. Quite often I just go on day tickets.   This year we had booked tickets  for the whole weekend, the last time our kids would be camping sort of with us and we would be meeting up with friends too.  So I had been looking forward to it, there are some great bands playing, The Killers are headlining the Saturday so I plan to go just for the day on the Saturday.  I can meet my family and friends on site and just enjoy a day of revelry, I can always sleep all the next day.  I can see most of the things I was really hoping to; The Killers, James, Bridget Christie, I can take it easy, not rush around too much.  I can surely manage that.  No, in the event I cannot even make it in for the day.  It’s too hot and I can’t tolerate being in direct heat, the Latitude site is lovely but shade is in pretty short supply.  Despite my enthusiasm, the thought of being out, exposed all day proves too much for me.  It might as well be being held in the Sahara.  Ah well, Ned has a friend without a ticket so I figure it may as well go to him to enjoy, perhaps the karma of giving up the ticket will come in handy!

So I don’t make it to Latitude but with each day I feel increasingly fine.  This is not what I had expected at all.  David and I start to think about what to do with our long summer.  We’ve had to cancel Tanzania on medical advice, all rather gutting but perhaps we can salvage some fun from the holidays.  I call my specialist nurse to say we’re thinking of grabbing a week in Europe I say, would that be okay?  She says no, they wouldn’t want me flying and what if something happened abroad and we had trouble speaking the language?  I feel really dissatisfied by her reasons.  David speaks excellent German and we can get by in French, I’m not being told anything that makes sense to me as to why we can’t go.  Tanzania I could understand but I’ve experience the healthcare service in Europe.  Both my parents died out in Spain and received excellent care.  (They were living in Spain, they didn’t just get unlucky on holidays there!)  I feel mutinous but David is not inclined to discard their advice.  Anyway there are lots of lovely parts of the UK we’ve not seen so we agree to a week in Yorkshire.

 

 

 

 

 

 

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.