For the very first time, I am having to write this week’s blog in a hospital bed. Really not my venue of preference, but as always, I don’t get a lot of choice in these matters. More on that later. The last few weeks have been somewhat eventful.
The aftermath of the first chemo continued as expected. First week I felt pretty rough, second week I improved and third week I was pretty close to normal, except the fatigue. The pain and chest infection that arrived in week two eventually lifted. In week three I was still busy congratulating myself about how well I was tolerating the chemo, when the thing I really, really didn’t want to happen, happened. I was away for the weekend and following all the advice on post cold cap hair maintenance ie; only washed it twice a week, didn’t use product or heat for styling, kept gently brushing it with a wide tooth comb to avoid knots etc etc. I started noticing quite a lot falling out on Wednesday, I hoped it was a case of mild thinning, that I had been told to expect. Thursday and Friday, more fell out. On Saturday I showered and it was hair wash day. I realised at that point that my hair had become matted dreadlocks. My family spent over an hour trying to pull away hair from the matted chunks, but it was a hopeless task. An hour later I was seated in a hair dresser at an old people’s home with a lady asking me whether she should just shave it off. I told her I wasn’t quite ready for that, and if we could salvage anything, no matter how short, that would be my choice. So she set about cutting off the dreadlocks and restyling what little was left. No more than half an hour and £16 (?!) later she did a really great job of giving me a short style with unavoidable bald patches. At that point I thought if it stays like this, I can just about cope with it. Of course over the next few days, it continued to fall. I came home in time for blood tests and chemo the following week. I went to the cancer centre fully prepared for what was to come. I did the cold cap again as I was hoping to stabilise the fall. As my nurse prepared the cap and put the necessary conditioner through my hair she simply said “abi, it’s all coming out”. I ploughed on, got through the chemo and went home. The next few days were rough from the chemo and the hair fall got worse and worse. It’s hard for me to put into words how traumatising, and I don’t use that word lightly, it is to watch your hair fall out in clumps and bald patches grow across you scalp. I had to keep wondering about with a dust buster and a lint roller. I was getting anxious every morning before I got in the shower about how much hair was going to be left at the end of it. It’s a really, really difficult thing to go through. I would put that week up there amongst the very worst. There were a lot of tears. Eventually by the middle of the week, it became obvious that the cold cap just wasn’t going to work for me and that it was all going to go. I decided it was time to take matters in to my own hands. I had read many times that the process of the falling out is generally worse than the end result. So I decided it was time to fast track the process and asked my long time friend and hairdresser if she could bear to go at it with the clippers. Being the true hero she is, she told me that if anybody had to do it, it would be her. She came over, got to work, and there it was, done. There were more tears. So now I have no hair at all. It took all my courage to look in the mirror that day and let me tell you, it actually made my knees wobble a bit. I’m not sure there is anything to prepare you for going from long hair to bald in a fortnight. A week on and I still have to steel myself before catching a glimpse of my naked skull. But the good news, is that the anxiety is gone. You can’t fear what has already happened.
The photos below are all taken within the last fortnight…
My hair becomes the latest thing to add to the list of things that cancer has taken from me. I try not to dwell on these things most of the time. But when the chips are down, it’s hard not to feel somewhat aggrieved. There is probably a whole blogs worth of things that I have lost and miss. As I reflect today, these are the first things that come to mind. And in no particular order; my career. My fertility. My sleep. My confidence. My independence. The ability to have a conversation that doesn’t focus on how I am (snore). The me that was the me before.
While all those things get to the very core of me, I am astounded by the impact of losing my hair. Again, stage 4 breast cancer is not for the feint hearted. I hope this is not about vanity, although almost certainly it is partly. It’s about identity, it’s about control and lack thereof. It’s about feeling sorry for myself because the cold-cap didn’t work and I would have really liked to catch a break. No such luck. It’s because chemo is proving to be everything I didn’t want it to be. It’s also about the fact that if I wanted to have a day off cancer, I could get away with looking like everything was normal. I can’t now. I never wanted to look ill and got away with it for two and a half years. Mostly though, I had quite a difficult relationship with my hair for a long time, it was never quite right, too thin, too mousey, too lanky, too greasy but at some point, maybe in my thirties I finally learned to love it. And now it’s gone. I repeat the mantra, it’s only hair. But, well, it was my hair.
The future is turbans and headwear.
As I said at the beginning, I am currently in hospital. At the start of the week I was starting to come out of the haze from the first chemo and beginning to feel better. Then I started to develop some pain, then the pain became unbearable and I thought I should probably check my temperature. It hit 38.2 and I am meant to hit the panic button at 37.8. Temperature is so important whilst on chemo because it can be an early warning that infection is setting in. Chemo can destroy the blood cells to a point where fighting infection is impossible. I called the cancer centre and they sent me off to the hospital nearest them for blood tests and observation. Of course, by this time it was 9 o’clock on a dark, wet, stormy night.
I arrived at the hospital and spoke to the Doctor who told me they would take blood but it would take three hours to be processed. The temperature had started to drop and he didn’t seem particularly concerned. Then at 10.00 pm, and once again I thanked my lucky stars that my treatment path had led me to him, The Prof called. If you needed further reassurance that I am in the hands of an incredibly caring and brilliant professional, let that be it. Like Mary Poppins appearing on the wind, news of my sudden arrival at the hospital had reached him. I can’t tell you how important the effect of hearing his voice was that night whilst I was entering a flat spin of panic. We talked though what was going on and we agreed that erring on the side of caution was our preferred choice and so he instructed the hospital to admit immediately and begin IV antibiotics. It turned out eventually, that the white blood cell count was 0.3, where it should be between 4 and 10 and specifically the neutrophils were zero where they should have been between 2 and 7. To state the rather obvious, zero is as bad as it gets and the chemo, rather than compromise my immunity has instead obliterated it. Under these circumstances I can not be exposed to any potential bacteria and germs so I am in the hospital and in infection control lockdown. This essentially means anyone coming in to my room must wear an apron, a mask, anti bac and if they plan to touch me (and most nurses do) then gloves as well. I feel like I’m in an isolation unit. I have stayed 3 nights so far and as the results of the blood tests have shown the neutrophils have not shifted, I will be here for the foreseeable. I don’t feel particularly ill, although of course I have the side effects of the chemo in the first place, I am now having two IV antibiotics and a whole heap of other medication including a morphine based painkiller. So mostly I just feel over medicated. I am being really well cared for and looked after and the food is brilliant. The Prof has popped in every day, my chemo nurse has been over to visit 3 times, a couple of friends are keeping me entertained and popping in with the things I need. Mostly though it’s best for people to stay away. I have an endless stream of healthcare professionals coming through my door every day, so I have no time to get bored. You may recall I didn’t want to do the chemo in the first place, and this is why.
I am due back for more chemo in just over a weeks time. That will only happen if the neutrophils stop letting the side down. We need my bone marrow to get a move on. The plan is to be back in the MRI after that cycle and then we will see whether or not all this has been worth it. Let’s remember I was given a 50/50 chance of the chemo making an impact on the spread of the disease.
In other news, a couple of weeks ago this blog went over 10,000 views. I have run out of words to describe how happy that makes me, but to repeat, thanks to each and every person who reads, shares and comments. I am so thrilled that what started as a purely selfish exercise has taken on a life of it’s own. I get messages now hurrying me up to write the next one and that makes me smile a lot.
It seems almost surprising to me that in amongst these last few weeks I have still managed to fit in some “normal” life. A couple of weekends ago we went to Pub In The Park in St Albans. A food and drink festival held in the beautiful Verulanium Park with good bands and a lovely view over St Albans Abbey. It turned out to be a beautiful sunshiney end of the summer last hurrah, so we were very lucky. The ticket had been booked forever ago, so in the run up there was a lot of discussion about whether I would be able to make it. I have to say, the night prior I ended up at the hospital again in a CT scanner finding what proved to be a chest infection. At that point I thought it was probably unlikely that I would sit in a park drinking prosecco the following day, but guess what? I did and I ruddy loved it.
The following weekend was my Aunt Jill’s 80th birthday. We had planned to celebrate in GozFam style up in Wensleydale. So for the second time in a month, I travelled to North Yorkshire to party like an octogenarian. Wensleydale is a special place for our family and, once again, we were blessed with exceptionally beautiful weather. My personal hair dramas aside, for this was the weekend of the dreadlock incident, we had a fabulous time. We managed a couple of walks, luscious meals out and, by way of tradition, there may have been more prosecco.
The last few weeks have not been my favourite. Once again I am blown away by the kindness and generosity of all the people around me who continue to find a way to keep me putting one foot in front of the other when I know I am putting them through hell. I am truly protected by the wings of angels and I am grateful for every single visit, chocolate biscuit delivery, home made soup drop-off, favour called in, message, call, and flower sent to me.
October is Breast Cancer Awareness month. Feel your goddam boobs.
Big Love, AG xx
Ward Thomas / Carry Me Home