Aileen Lamb
Posted by
Aileen Lamb

The wait begins

Aileen Lamb
Posted by
Aileen Lamb
13 Nov 2015

The doc explained that the chemo I’d received would destroy the leukemia but also wipe out the good bits too. I would have almost no immune system for several weeks. This is the main reason that patients being treated for blood cancers must be hyper vigilant and avoid infections at all costs.

In a healthy adult there are plenty of bugs carousing around our systems which are easily fought off and do us no harm. However, in my case being severely neutropenic – really low on infection fighting good white cells – means that I’m at high risk from colds, coughs, shingles and other bugs which could ultimately be very dangerous.

This also causes a challenge around what I can and can’t eat. After talking to the nutritionist I discover I must adopt a ‘pregnancy’ diet. I’m told I must avoid all shellfish, soft and blue cheeses, ‘live’ yoghurt and run a mile from deli and uncovered foods as the potential for contamination is high. Now when someone says no brie…….what do you think the first thing I dream about that night is. A huge, gooey, smelly brie with grapes (also not allowed unless they are peeled;)

The one small positive though is that unlike being pregnant, having chemo does not preclude you from having a gin or a glass of wine – phew! There is certainly a lot to think about before I simply grab something now and eat it.

So I must wait for my body to kick-start again and begin producing neutrophils. Every day at 6.30am we ‘do bloods’ and by 10am the results will be back for the doctor to study. Each day I ask expectantly “have my bloods changed….?” and am told no, nothing yet. We get today 27 since the start of chemo and I’m beginning to lose hope. Maybe my white cells are not going to re-boot? Does that happen? What can the docs do?

On day 28 one of the lovely registrars lets slip that there has been a wee move in my counts. She’s as excited as me. (The size of the move is from 0.000 to 0.01 !) But its a start. The next day there has been a further jump and by day 30 we are starting to see slow and steady progress.

And then the best news, I can go home! 31 days since I started this journey I’m being discharged and can go home for around 10 days.

It would probably make sense to explain the name of my blog just now as much of the inspiration was born out of the boredom of the 21 days I spent simply waiting. I decided to try to create a turban using bright coloured scarves every day. Looking online I found some instructions and realised it’s actually quite easy. So a new turban each day became a wee bit of light relief. Thanks to everyone who’s gifted me some beautiful scarves.

So now I’m away home to wait, this time to see if the chemo has achieved our next goal which is to get the leukemia into remission. Maybe by the end of this I’ll have learned some patience.



Great blog Aileen.

The neutropenic phase is a frustrating one and you have to be so careful in so many ways while you wait for that white blood cell count to rise back to normal levels again.

I really like the way that you describe the neutropenic diet as similar to that of someone during pregnancy (bar the drinking of course!) and may well have to steal that for when I reply to other patients asking about foods that they can and can't eat whilst neutropenic.

Wishing you all the best as  you continue your treatment and look forward to reading your next blog.