First Chemo – June 15th 2010

Slept OK the day before but still felt tired in the morning. Mum arrived early to take me and be with me. I spent a while the night before looking on the breast cancer care discussion forum looking at discussions between women through their chemo and read some useful ideas about how different people deal with it all. What was obvious from the site is how different the side effects can be but they do get cumulatively worse. My oncologist said that after the first cycle, by the end of the third week I will be about 90% of my normal self, and then at then end of the second cycle 90% of that and so on through to the sixth cycle.

I realised while reading the discussions that I had not organised myself a wig in case I could not stand the cold cap or if it does not work – and I can’t bare the thought of waking up one day with my hair over my pillow and not having a wig ready at the end of my bed to face the world. So before leaving for hospital I booked myself an appointment on Friday at Trendco – ‘Our professional stylists are here to help you chose a wig to suit you’ ‘All our custom made hair systems are individually designed and are virtually undectectable to both sight and touch, they are each designed and styled to the highest standards…..’.

I had not had my induction to chemo yet as I had been due to have this on Friday but the operation to insert the port and recovery after the general seemed to take all day so when I got to the hospital yesterday at 11am I was weighed; had an ECG to check my heart; had my blood pressure and temperature taken and then was talked through the drugs and the long list of possible side effects focusing on those that if I get them I should ring the emergency line (like if my temperature reaches 38 degrees).

The cold cap goes on half an hour before treatment – so my oncology nurse wet my hair and covered it in conditioner and then squeezed the frozen hat pack (think thick fancy swimming hat) on my head, adjusted the straps to unbearably uncomfortable and then placed the strap round my chin and squeezed so I could barely talk except through gritted teeth. She told me if I could get through the first 15 minutes I would be OK. It was utterly horrid, I did keep it on the whole time but it made the whole thing even more miserable than it otherwise would have – so perhaps the perfect wig is the way to go. As soon as it goes on I felt as if my eyes were dilating and my brain felt light and fuzzy. Fifteen minutes after it was on the oncology nurse set up the various tubes ready to infuse the variety of drugs I would need. This involved sticking an inch long needle (that’s how long it looked) through my newly inserted and still very bruised port. I had had some anaesthetic cream on it but that did not reach the underlying bruising – which had only come up that day and so I had a chest tinged with yellow. Inserting the needle into the port was perhaps the next worst thing, and once it was in there were various flushes and some anti nausea drugs – all of which you can feel enter your body and start trickling around.

I only cried once during the day and it was at this point – my bottom lip went and I just sobbed – not an ‘Oh wo is me why is this happening to me’ type sob but a real child like I’m all hurting and uncomfortable, I’m being prodded and pulled and its just horrible and I know I will have to do it again and again. The oncology nurse had warned my mother that she should keep an eye out for me about 20 minutes in as that was when I was likely to break down – and I did right on cue. It didn’t last long – I pulled myself together with Mum gently chanting ‘mind over matter’ as she rubbed my hand and shoulder. I was pleased she was there. Rupert had wanted to come but not being able to drive was one issue and he also has pretty full on work at the moment – but in the end I think I preferred having Mum there for the first one. You sort of regress back to some child like state – where you are no longer in control and you are feeling rather vulnerable and just have to let things happen to you – and that is when you want your mother. It also means that she could share with me what went on and I am not sure I could have or would have wanted to describe it to her in great detail – but by living it with me she has a good idea of what it all means and this will make it easier for me to call on her when I am feeling low.

Once I had had all my pre meds – the oncology nurse, who had set up a saline drip – came in with 4 huge syringes with the different drugs that make up FEC. One of them is red and is very corrosive – hence the need for the port so that the drugs will be quickly diluted and so have no time to damage any tissue. The oncology nurse manually fed these into the tube going into the port – which took nearly an hour. I then sat for another hour and a half with the cold cap on – wrapped in an electric blanket. There were hundreds of trashy magazines – but it was difficult to focus on them – especially as I could not fit my glasses on under the cold cap.

We had arrived at 11am and were nearly ready to go at 3.30 – but not before another long set of instructions and things to look out for and a huge bag of drugs.

Things to look out for or do: keep hands and feet moisturised as drugs make skin more sensitive and can cause sores and cuts if not looked after; wear soft shoes if going on long walk as skin will chafe easier; look after nails to avoid witlows – particularly important on left arm which is 6 lymph nodes down making the arm vulnerable to lymphadema (essentially where arm swells – and worst case would mean I would have to wear a tight sleeve on it for rest of life if I get this – nice); keep an eye on temperature; go to practice nurse next day at 2.30 to have neulasta injection (to keep white blood cell count up); keep zovirax handy in case of cold sores; eat small and frequently to avoid nausea; keep mouth hydrated to avoid ulcers and clean teeth regulary; drink 2-3 litres of water….and more that I cant remember.

The drugs include steroids for the next 3 days – really to help with nausea which is a big side effect of FEC. The steroids will perk me up, make me fat round the middle and give me a big appetite and so possible weight gain (bald and fat). Then on Saturday when I have finished the steroids I will feel ‘grotty’ probably. I have other anti nausea pills and some anti acid pills and some constipation pills because all the above can cause this. Fantastic.

I felt pretty wiped out when I got back – very tired eyes (which I put down to the cold cap) but I pretty much stayed in bed in anticipation of the ‘SEs’. But the night was OK, I woke once to take an anti nausea pill (best to prevent it as pills do that well but once you have it is difficult to control) and in the morning ate my tea and toast in bed lovingly prepared by my one footed husband – took my steroids and other pills and feel OK, a bit tired a bit wobbly but OK. Ventured out to take the dog for a walk and go for a coffee at my favourite coffee place (taste still with me).

My next adventure is the hair adventure. The oncology nurse said my hair needs to be shorter to increase chance of keeping it – so I have booked a hair appointment for an even shorter hair cut. I have not had a short hair cut for a very long time (if ever) so it will either be fantastic or so unbearably disgusting I will definitely go for the long glamorous wigs and bandanas. To protect my hair today I had to keep the conditioner from yesterday in and not brush it. In fact I have to avoid brushing it; blow drying it; styling it etc all the way through to keep it in place if possible (not that I have ever really brushed my hair anyway or for that matter styled it so should be quite straightforward).

I had my neulasta injection in my tummy today – and am preparing myself for a sore joint night particularly in the hips – as my bones attempt to make white blood cells (I think that is why)….and am now back lying in bed with a selection of wig and hair magazines and a good book my cousin sent me.

Finally the kids and how are they…still confused about the hair issue – will I lose it; when; why not already; Tom is the one who considers it all deeply and comes to my bedroom now and then to ask me if I am going to die and how do I know. Ella much more philosophical – she has a new camara and is charting my progress almost daily – so far so good.

Huge love x