Pre-chemo assessment

I haven't written a blog for while.  I've not really had much to blog about I suppose.  It's been the usual ups and downs and getting on with things. I've had days out here and there (see photos), gone for walks, napped, and been occasionally bored as hell.  

Me on Downhill Beach wearing my brilliant NHS wig

Downhill Beach and Mussenden Temple

Glorious Downhill Beach

Today I went and had my third pre-chemo assessment.  This is a regular appointment which takes place every three weeks.  It's to make sure for example that I can go ahead with my chemo treatment the next day or if the dosage needs to be adjusted.

Waiting to be seen

I have mixed feelings when I sit in the waiting area of the cancer suite. It's a peaceful place with lovely nurses and volunteers but I have to admit I find it a bit depressing.  

I look around and it makes me sad seeing how many people are being treated and what we all look like.  I have to remember not to talk too loudly (quite hard for me) or laugh at anything my husband says.  I don't want to be insensitive.

It seems that most people in the waiting area are of mature years with a handful of younger folk.  As Groucho Marx once said, 'I don't want to belong to a club that will accept me as a member'.  That's exactly what I feel like.  I don't want to be in the 'Cancer Club', I don't want people feeling sorry for me, I don't want to feel like I'm in God's Waiting room, I don't want to get older and sit with other older people who are getting treatment.  In my head I still feel like I'm 21 and that cancer can't happen to someone like me.  Get the picture?

Bloods, weight and a debrief

I had my bloods taken and got weighed.  Surprisingly I had only put on a couple of pounds since last time, which is not bad considering I have been comfort eating or eating rubbish because my tastebuds have changed and things don't taste right.  The nurse said she would be more worried about me if I was losing weight.

After the blood test, I met with a specialist registrar for a debrief.  Turns out that my white blood cells are lowish so I need to have a white blood cell injection this week, given by a district nurse.  

The registrar asked me all sorts of questions, plus I gave him a load of information about things I had experienced which I had written down in a notebook.  Things like tummy upsets, heart palpitations, a sore forearm, a sore hangnail and little finger on my vulnerable side (the registrar thought he might have to defer chemo in case it was infected but he decided it was OK), sore chest/throat and feeling queasy during the second week of the cycle.

Top tip

If you're going through treatment or have had surgery, write down everything you experience, when you experience it, what it feels like and for how long.  This is important for when you're assessed.   Every bit of information is really useful for the doctors as this can influence things like the dosage of drugs or if they need to postpone treatment.  They can also give you things that might treat some of the side effects for example tummy upsets or queasiness.

ECG and X-ray

The registrar referred me for an ECG plus an X-ray to make sure there were no issues with my heartbeat and to check that my PICC line was in the right place.  

After I had the ECG, I wandered down to the busy X-ray reception.  I sat in a spare seat.  I wasn't wearing my wig nor a chemo hat - my bare head was on display (I've come to the point where I don't give a toss what I look like when I'm in the hospital).  I saw a woman walking towards me who was staring at me with a look of abject horror on her face.  She was either a) very taken aback or b) about to crap herself.  I thought maybe I had taken her seat so I asked her if I had, but no I hadn't.  The only thing I could think of was that she had been genuinely shocked by my appearance or she thought if she sat next to me she'd catch cancer.  Er, no! 

I got to see my x-ray photo.  It was fabulous to see my lungs in great detail and where the PICC line was positioned.  The registrar took time to explain the different things he could see.  Despite being told when I got my surgery results that my right lung was partially collapsed he said he couldn't see anything of the sort.  Bizarre!

So that was today.  Tomorrow is chemo day.  I hate chemo day.  I hate chemo week to be honest.  But I'll be halfway through chemo so that's got to be a good thing!

PS

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Starting chemotherapy (almost)

This morning I went to the hospital to start my chemotherapy.  Or so I thought.  It turned out that I needed to go through some pre-assessment stuff first and then I would start the actual chemo tomorrow.

I went to the Bridgewater Suite at the Belfast City Hospital where I was given a contraption like you get in TGI Friday's (I'll have a full all day breakfast please).  It was actually quite a welcoming place, all bright and airy and buzzing with nurses and doctors. 

I sat with my husband drinking coffee and getting up and down to go to the toilet.  I must confess my nerves were a little on edge.  I was like a cat on a hot tin roof.

The TGI Friday buzzer

Blood and heart

I didn't have to wait long before my TGI Friday buzzer went off.  I went through to the Assessment Unit where a lovely nurse sat me down and took two vials of blood.  This was so that she could check things like my liver/kidney function, white cells, platelets etc.  

I also had another ECG to check my heart's rhythm and electrical activity.  It literally took five minutes.  My heart rate was 'excellent' apparently:  51bpm.  I was recently told I must be fit to have such a low heart rate.  Yeah, right.

Helpline

I had a chat too with a breast care nurse who explained about chemotherapy, its side effects and what to do if I felt unwell at any time. The overriding message - which she and everyone else I spoke to today kept drumming home - was that I absolutely had to ring their 24 hour helpline if I had a temperature or didn't feel well.  They would honestly shout at me if I didn't.  Even if I had any doubt about whether to ring the helpline, I had to ring it.  There could be serious consequences if I got an infection and they would be able to help me quickly if I contacted them.  

Side effects

The oncology doctor also came to see me to sign the consent form for treatment.  She explained the side effects again just so that I was absolutely clear about what to expect. 

Hearing the side effects hit me quite hard, even though I'd heard and read about them many times before.  There are three side effects that are certain: hair loss, fatigue and sickness.   They can give you medication for the sickness thankfully.  But there are other possible side effects too.  For example, there may be a risk of blood clots, blood cancer, weakened heart muscles, death from infection and other equally cheerful ones.  In my case, the benefits would outweigh the risks.   

One of the more light hearted side effects apparently is that my pee will go red as one of the chemicals is a strawberry colour.

My stomach was in knots as I signed the consent form to proceed with treatment.  Oh crap.  In for a penny, in for a pound I suppose. 

End of life considerations?

After all the tests and signing the consent form, I had a further session with another nurse.  She was kind and down to earth and spoke very quickly with a Belfast accent that even I couldn't quite follow after nearly 20 years of living here.  She explained that it would still be traumatic losing my hair even though I'd had it cut short and that I would look like the archetypal chemo patient when I looked at myself in the mirror.  

She asked me various questions, one of which was whether I had made any death or end-of-life considerations.  Um, no I hadn't.  Oh heck does that mean I should have?  I suppose I'd better get that Will written after all.

Workboots on

I sat with my husband back in reception and got a bit tearful.  I think the thought of what I'm about to face was starting to hit home.  

I've tried to be really positive so far but I feel like there are many dark days ahead and my positivity is in danger of completely melting away.

This sh*t is about to get real.  Or as Adam Keefe, Head Coach of the Belfast Giants, said to me: #workbootson.

I feel scared.

PS

Let me know below if there's anything specific about my breast cancer journey you'd like me to blog about.

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