Hair Loss and Cycle Three

Hair Loss and Cycle Three (27th July 2010)

Just as I had predicted the end of last week saw the rate of hair loss increasing. My head itched so badly and hair started coming out in the twenties of strands. You could pull out a minature pony tail with a gentle tug. I knew I was going to have to take control – and felt quite down trying to work out when and how. Then it all came together. I had Ned’s farewell from infant school show on the Thursday so I wanted to have hair for that, then Friday was the last school run (I wanted to avoid facing parents at the school gates with a wig) and I managed that – although I did wear a scarf that day as I had a few bald patches and the hair that was left was simply dead and bedraggled. I could feel quick glances of Mums I know as I passed – I know they would have all been sending me the best vibes but I could not look up from the ground and walked with my scarf and dark glasses avoiding contact. It was going to have to come off that night. Just moving my hair on my head had started to hurt.

I had another reason to get it over with. At work we had put in a major proposal for a piece of work in Africa which I am down as the Programme Director for if we were to win it – and we were shortlisted and called to present in front of a panel of 6 – on the day before my 3rd chemo cycle – so the Monday after that weekend. I could not risk leaving what hair I had left til Monday in case it came out on that day in huge swathes – and I needed time to practice with my wig given that I was going to be one of the presenters. This was a horrible prospect – going on an train early in the morning, then into work to see my work colleagues and then to present in front of strangers in my wig – for the first time. This is not how I would have chosen to have stepped out for the first time in this way.

Once I had picked the kids up I started preparing them for me losing my hair. I showed them how it was coming out so easily and they all had a go at pulling out a few handfuls – to much amusement and recorded by Ella who is taking a photo diary of the whole process. Tom was the one who was upset by this but he did in the end have a go. I needed them to see why I was about to cut it all off – as it was all coming out anyway. Then Ella and I went upstairs to the top bathroom with a towel, pair of scissors and camera. We actually had great fun – Ella was far too enthusiastic. We set it up so she could take before, during and after photos. She just went for it – we tried to collect the longer strands in a bag for safe keeping and had another bag for the shorter strands once she had got closer to my scalp.

We had one ear cutting incident – I had been warning her to be careful around my ears and she had told me to stop fussing she was fine. Until she snipped me drawing blood. It wasn’t too bad but it did give her a shock and she calmed down a bit. She had been getting a bit giddy with the excitement of being allowed to cut a whole head of real hair off (and document the process in detail by camera). The end result made me look like a convict – with variations in lengths mixed in with small bald patches (and then of course the bleeding ear). It was not as bad as I thought and in some ways was quite liberating. I don’t have any strange bumps on my scalp which is quite symmetrical. I had imagined I would have a parting of some kind – I am not sure why – but I do not – I realise this is only created when I have longer hair and pull it to one side and it is not actually how the hair grows on my scalp which is quite evenly spread. Looking in the mirror reminded me of the Sinead O’Connor album cover (although she has far bigger eyes than I have!).

We had been invited to a goodbye party for some neighbours who are leaving to work in Singapore for 2 years – so Ella helped glam me up with make up and then we put on my wig. I realise why I need the scarf – firstly it looks more natural - it also helps keep it in place but it also covers my ears which stick out as they are pushed out somehow by the part of the wig sitting behind my ears. All wigged up I went to change – at which point I learnt my next wig lesson. The wig needs to go on last. So – rather than take it off, change and re-adjust it all again I went round as I was – (with lots of little bit of hair stuck down my back and front from our hair cutting session but luckily it was dark enough at the party for no one to notice). I felt very conscious – few people knew and even fewer of those I had seen earlier in the day would have guessed what had happened – I suddenly looked rather glamorous (as you do not buy messy fluffy wigs). I did not stay long but it was good to step out.

That night I was not sure what to do - my Aunt had told me about these little towelling caps you can wear at night so that if you need to go to the loo or the kids come in you don’t feel so exposed – so I wore a blue cap that night (and felt rather stupid in it). The next day I had another look in the mirror at this convict cut and rang Chris the hairdresser for an emergency appointment. I went over to him that morning and he tidied it all up in the back of the shop with proper shears (cant remember what they are called) – with a number one. This made it look a little less mad. I introduced the boys to my new head that evening – to get them used to it as I realised I would never be able to cover my head from them for the next 3 months so they had better get used to it. Tom said I actually look quite cool, William was very quiet and Ned simply said – urrrrr (as in yuck). But they stared and had a stroke. Ned wanted to know how long until it would be until it grew back again, and he repeats this question daily. Recently he has been coming up to me and spontaneously hugging me to tell me he thinks I look pretty even without hair.

My first trip out in the day light was not with the wig but with a bandana and my sun glasses of course. I felt fine and confident actually – but people do look – but I don’t mind – I feel more real with a bandana than the wig – which is strange as I had thought I would only go out with the wig. It turns out that the wig is a bit uncomfortable – and I feel ridiculous in the house doing normal household things wearing it – so I don’t. I did though go up to the presentation on the very early train and then into work and then to the panel who we were presenting to. I think people on the train were focused on their normal routine and so I felt no great stares like I had imagined. I sat there serenely looking out of the window through my dark glasses. Then I had to go into the office – this was more trying but it was bearable with lots of warm feelings all around – and once we got preparing for our presentations I forgot I was wearing it. Finally at the presentation – one of the women had met me before but I think was confused – something was different but she would not have been able to pin point quite what and then the others I am sure had no clue or where thinking about something completely different. So all in all the first outing was not too bad – but it was a warm day and as soon as I could I took it off and replaced it with a bandana and travelled home wearing one of these – far more comfortable. Rupert had had to go to Canada for a day and so was not there that evening – but returned on the day of my chemo – early in the morning – just in time to see me go. He has finally had the boot taken off his broken foot. He has had to get used to walking on it again – his muscles had really wasted and walking on it was painful to start with – but he is doing well now.

I have missed out one piece of the story. The day Ella cut my hair off I went to the sink to rub my head to get all the loose pieces off and to my horror a nit fell out (a dead one – poisoned by the chemo no doubt). It is hot right now and the children have nearly all been infested (this is what happens at school in the UK these days nits are an everyday issue and I am constantly de nitting children (it can be rather therapeutic) – I usually escape but clearly not this time and when I do get a nit my head usually reacts terribly with all over itching (could this have explained the terrible itching I had been suffering the week before). The next day after coming home from the hairdresser I did the same again – and another 2 fell out…gasp – the horror. I wondered with embarrassment whether maybe Chris had found any but had been too polite to say so. Had I known that that was what had been causing the itching would have been bad anyway as my hair would never have survived the nit comb – so shaving it was the ultimate cure. But can you believe that – I had nits and that is why my head was so unbearably itchy. What ignominy! I am now very certain that I do not have nits as none could possibly hide in my rapidly disintegrating stubble. I had a bath last night and rubbed my head and so much came out that Rupert – who washed out the tub after me did not want me to see it. He described it as a veritable river of stubble. Then last night I had an uncomfortable night – and in the morning my pillows were covered in the stuff – and my head is looking more bald than stubbly. I have lost a few eyelashes but my brows are still there.

The third chemo was 2 days ago – my haemoglobin is down from 12.4 when I started to 10.9 – I get quite breathless. The chemo was more straight forward without the cold cap and I was pleased I did not have to consider this anymore. My Mum came down again to take me – they take my bloods in the morning and then I go away for a coffee while they process them and go back at about 12 for the chemo. I was given the magic anti nausea pill – which has made such a difference. I went straight to bed when I got home and then yesterday day one after the chemo – while I felt wiped out I did not have that all consuming nausea, so was rather over the moon. I even walked the dog twice and was really quite chirpy under the circumstances. Last night though was not so good and I feel pretty rough today – but not the nausea like it was and I am grateful for that. I have stayed in bed most of the time – thank goodness for wireless.

Ella and Tom have gone to Wales with my mother and we will follow on Saturday when Rupert starts his annual leave and I am ready to travel. I am trying to work out if I can have the next chemo (due on 17th August) up there somewhere – otherwise we have to drive all the way down and back again in the middle of the month.

Before I sign off I wanted to list all the wonderful things people have sent and done as I have been overwhelmed by the love and presents and I want you all to know how much of a difference it has made:

Flowers – forests of them
Organic dark chocolate and other goodies
Neals yard packs of spoiling smelly pure oils and bathwash and amazing non chemical deodorant (never used it before but highly recommend – Lavender and Aloe Vera)
Books – to read to pass the time and cook books – what to eat during chemo; plus more how to live with cancer and after cancer type books with meditation cds
Instructions about diet and healthy living
Letters and cards full of lovely words and messages which I have near me in a little box.
Nightdress and beautiful wrap
I have even had a Medicine Puja for me at a Tibetan Monastery in Nepal to coincide with the day of my surgery

With love Lou