Last time I wrote, I was in hospital because my white blood cells and therefore my ability to fight infection had fallen off a cliff. My neutrophils spent 3 days not registering at all and then finally my bone marrow kicked in (as The Prof always said it would), and suddenly one day they went to 0.4 then the next day 0.9 and once they were over 1 I was declared out of the woods. The infection control sign was taken off the door and people were allowed in without a mask. It was really good to know that my body was capable of fighting back against the impact of the chemo, although it took it’s time. I was told that day 9 post chemo is normally the time the white cells hit the lowest point. Mine had hit the floor by day 7, and given they hadn’t been checked before that, we won’t ever know when they actually dropped to zero. Once again, not following the trend does not prove to be helpful. Despite the improvement in the bloods, I stayed in hospital over the weekend on IV antibiotics and finally left on the Monday afternoon, which was my 7th day. It was quite a scary time, and it’s only now that people are telling me “you look so much better”, from which I presume I looked like a heap of shit. Part of the problem being the hospital’s apparent policy on sleep deprivation. I can’t get over how often they kept waking me up. Anyway, I left knowing I had been well looked after and really pleased that I could get some peace and quiet, and sleep, at home.
The following week was chemo week again. Time flies when you are having fun after all… As always, I went to the cancer centre the day before for blood tests. This is important as if there are any signs that something is wrong then chemo won’t go ahead. Having not had a blood test for a whole week, it was time to see whether the shite cells had recovered sufficiently to go again. It’s a good example of how relentless chemo is. It makes you really sick but the cycle is long enough to hope you recover just in time to get the next dose and really sick again. The good news was there was enough white blood cells to go again. You can imagine my joy at that news. The Prof and I had already discussed during one of his many visits to me in hospital that we would have to drop the dose. There has to be a balance between impact of chemo and my ability to tolerate it. Cycle 1 I ended up on antibiotics with a chest infection and cycle 2 I spent a week in hospital. These are not good stats and suggests, as we always predicted given response to previous drugs, that I am not capable of tolerating the toxicity of chemo to any great degree. Obviously the reduced dose is a double edged sword – I should feel better and be less likely to become neutropenic but less dose makes me worry that there is less impact on the disease. On this, only time will tell.
My sister arrived on the Monday to be my chief carer, chef and chauffeur and generally get me through the awful week that is the first week after chemo. She knows now that I can’t stand the smell of cooking or the thought of big meals, and that my chemo obliterated taste buds make me hate most things (except cake), which makes her job especially difficult. I have taken to eating a lot of soup as dry things are basically inedible when your mouth has stopped making saliva. So my sister is now an expert soup maker, and it’s a great way to make sure I eat lots of the good stuff that I am meant to consume to help the body recover.
Otherwise, and I hardly dare say it, this chemo cycle is going OK. The fatigue is real, the nausea and headaches expected, but so far I have stayed away from antibiotics and hospitals. Let’s leave it at that and not tempt fate.
At the crack of dawn this morning, I was back at Mount Vernon and in the hell hole tunnel that is otherwise know as the MRI. As per The Profs plan, after the third cycle we review the impact of the chemo. The options are pretty limited, either it is working and there is some stability in the tumours or, it hasn’t worked and the disease marches on. I will meet The Prof early next week to discuss the results. For now, in order not to drive myself crazy with fear, I am assuming everything is good, until somebody tells me otherwise.
In the meantime, I am getting used to learning to live without hair. An interesting point here, it is only the hair on my head that has fallen. Whilst I am very grateful to still have eyebrows, it’s a bit weird isn’t it?! I would have been quite pleased for some respite from essential grooming but no, lady luck once again fell the wrong side and epilating life goes on.
I have discovered there are a few positives to joining the bald head brigade. The first being that people can now identify me as an “ill person”. Of course that’s not a good thing per se, but if it means people give me a wide berth in the supermarket, then I’ll take it. I’ve even noticed people holding doors for me. Although the second glances and staring is going to take some getting used to. I have even noticed complete strangers giving me eye contact and smiling at me – be assured this is not a thing I experienced often before. Another upside is the time it takes me to get ready and out of the house. No hair washing/drying/styling is a real time win. There is also a cost saving; no more shampoo, product, hair cuts, highlights. I would give all that back in a heartbeat to have my hair back, but for now, I am looking for silver linings. I am also learning the challenges of accessorising an outfit with the right headwear. Who even knew that could be difficult?! I have unanswered questions about a bald head. Is it an extension of my face? Should I include it in my daily skincare routines? Should it be washed, like hair? Do I need to put scalp lotions and potions on it? [Thanks SO MUCH to the lovely friend who sent me some amazing products including scalp cream, so lush.] What do I do with the little tufts of stubble that are now growing in small patches? I don’t know where you are supposed to find answers to these questions, but I am learning as fast as I can.
What is quite strange is that I still find myself locked on to hair product adverts. My brain has clearly not quite adjusted to not having hair. In the supermarket the other day I wondered whether I needed more shampoo. There are still days where I catch sight of my head in the mirror and it takes my breath away.
At some point before I ended up in the hospital, my friend and I had booked a trip to the New Forest for the final weekend before the next chemo. We were working on the basis that that is the time when I should feel at my best and be fit enough to travel. We were due to leave on the Thursday, and as the week before I was stuck in the isolation room and it was confirmed I was going to have to stay over the weekend, an escape to the forest began to look unlikely. However, as time went on, and things started to improve, one afternoon The Prof popped in and it was finally a peaceful time with just him and me, not the usual circus. I quietly asked him whether he thought a trip to the forest was a ridiculous notion. Being the voice of reason that he always is, he reassured me that it was a really good idea, I should continue to be careful but that in the worst case scenario I could be back at the hospital within two hours. And so with his blessing, we set off. It’s hard for me to describe how it felt when we arrived. I love the forest, and the peace, and the trees, and the wildlife (and the cake) so much and I had really convinced myself that I wouldn’t be able to get there. I think I was relieved. And grateful. I have fought really hard to not let this disease stop me from doing the good stuff, and I was about to get really annoyed if that was going to happen. So it was with much joy and some surprise, that I was able to enjoy the space and time that short break gave me. We stayed in the most amazing lodge deep in the forest. From my bedroom, through floor to ceiling glass doors I could see straight out in to the trees. I was woken by heavy rain, noisy pheasants and strong winds. And my god was it was the best medicine for the soul imaginable.
By way of self contradiction, this week saw the first longstanding event in my diary that I couldn’t get to. Last Christmas my sister gave me a ticket to join her in Manchester to see Cher. I think Cher is a legend and some of her greatest hits have been part of the soundtrack to my life. As I could see the date coming in the diary, once I started the chemo I knew it was going to be very dependant on where it fell in the chemo cycle. Unfortunately it fell in week 2, which thanks to the educational hospital stay, I now know is when I am at my weakest in terms of my immunity. Making the decision not to travel and be in a stadium surrounded by thousands of people and millions of germs was surprisingly difficult. At this point the risk is just too high and my health has to come first. And so, I didn’t get to see Cher, and this makes me really, really sad. I try hard not to let my cancer get in the way of my life, not to affect me or those around me too much (I know this is ridiculous) but this time, it just wasn’t to be.
It doesn’t compensate for not seeing Cher, but these last few weeks I have really been enjoying some time outside. Autumn is just getting going and when the weather is good I make sure I get out, stretch my legs and breath in the air.
Today, for the first time since I can’t even remember, I made it back to the Hospice for yoga. So, so great to be back and trying to find some sense of normal in the chaos that has reigned since the start of chemo.
For this and all the gift packages, well wishes and support I remain hugely grateful. I am also, and I whisper this very quietly, feeling optimistic that next week will bring good news. At the very least, I will know, one way or another, whether choosing to do the chemo and suffering the consequences, was the right decision. Here’s hoping.
Please, please, please check your boobs and bits.
Big Love, AG xx
Who else could it be…
I Got You Babe : Sonny and Cher
They say we’re young and we don’t know
We won’t find out until we grow
Well I don’t know if all that’s true
‘Cause you got me, and baby I got you
I got you babe
I got you babe
They say our love won’t pay the rent
Before it’s earned, our money’s all been spent
I guess that’s so, we don’t have a plot
But at least I’m sure of all the things we got
I got you babe
I got you babe
I got flowers in the spring
I got you to wear my ring
And when I’m sad, you’re a clown
And if I get scared, you’re always around
Don’t let them say your hair’s too long
‘Cause I don’t care, with you I can’t go wrong
Then put your little hand in mine
There ain’t no hill or mountain we can’t climb
I got you babe
I got you babe