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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Author: bombinmybrain

I’ve been living with a brain tumour for 15 years. I’m just embarking on chemotherapy and want to share my experience of that as well as some of the events over the last 15 years that led to it. I’m a Mother of 2, sometime adviser with Citizen’s Advice, a Lover of music, Pointless and the curative values of a good strong cup of tea.

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