It is now 30/11/20 13:18 pm. I am sat in ward 7 at my local hospital. I am in room 5. I am waiting for a small procedure this afternoon, where a small wire will be inserted into my breast to mark where the surgeon needs to go in tomorrow. My lumpectomy is booked for first thing tomorrow morning.
I have not written anything in my journal since 06/11/20. That is 2 days after my final chemo. I will share that entry with you below. There are many reasons for this. One being, I have not felt well enough to do much. The final kicking from the chemo went on for over 3 weeks. This was both frustrating and upsetting for me. I hated it. I was angry and low. I had many a conversation in my own mind about what I could be journaling about, but never got the pen to the paper. I regret that now, as the last 3 weeks have brought me such a battering of feelings and emotions that needed processing and moving out. I have talked more to my husband and friends which was helpful. I have cried almost every day. This helps but with no eyelashes, I am left with damp cheeks and salty marks under my eyes.
Another reason I have not shared anything with you or my journal is because I had reached a point in my mind where I was just so tired and fed-up of saying the word chemo, cancer and side effects. I felt I could not write anything of any worth any more – it was all sounding the same. I felt like I was moaning every day. Saying the same things over and over again. This gigantic loop of fear was on repeat. It is so demoralising and damaging – being stuck on the same narrative – sodden with pain and anger. I found myself in my head a lot that first week. I have plenty to say, and feel coming back to my writing now is the right thing to do for myself. But first, the last journal entry I wrote on 06/11….which seems such a long time ago now. Cancer has this weird thing it does with time. It stabilises it completely, stopping it in it’s tracks. Then it has the power to speed it up so quickly, so it whizzes past you and takes days of your life with it. Not one for fast rides and sudden movements nor for dead open spaces – this side of cancer sucks.
6th November 2020
Exactly 49 hours on from chemo#8 the colour started to drain out of me. Slowly followed by life. My blood ran tepid. My eyes gazed over. My back started to ache.
I tidied up my desk, wrapping up for the weekend. I hadn’t noticed I had pulled my wig off. I was taken aback to see it lying on my folders and diary. My left hand flew to the top of my head, with disbelief that it was my hair strewn on my desk. My head felt sticky. The hair is coming back – slightly thicker – but still a bloom of fine white fluffy strands stand up to attention. Like I have been electrocuted or something. But right now they feel damp. Plastered to my baldy scalp.
I’ll never fully know if this is the chemo leaking out or the hormones kicking off. Right now. I actually don’t f***ing care.
I can’ stand up. I feel like screaming out loud. I want to rip my skin off and excavate this shit out of me for the last time.
I stop. This is the last time I will feel like this ever again. I still want to scream but now echoes of relief and gratitude join the bellows of my mind.
Every 3 weeks at this time, I am unwell. Dripping inside with the effects of the chemo. I am a pro at riding out the chemo crash now. Writing that seems odd. I’m now a professional chemo patient. I’ve got my stripes. I’m going into a hall of fame (Is there one? Should be), as a woman who survived chemo. I’m joining thousands – men, children, elderly – all walks of life have a place there. A sad and dark place for some I am sure.
But I survived it didn’t I? The 21 day battering’s of the poison was my life for 24 weeks – almost 6 months. Hell I’m emotional. I am alright with feeling my emotions, but I am going to places within my self that I have never visited before – I don’t know how to put into words what I am feeling right now.
I am heavy, sore and fed up. Scratch that. F***ed off is a much more real description. I wanted to make Mexican chilli chicken tonight for tea and drink a glass of wine. Instead I am lying on my bed sparking at every dart of pain and misery I am being presented with. Shaking. Can’t get warm. Too warm now. Angry. Scared. Cold. So tired. I can’t take my jumper off. Or my socks. I’m looking for my hands but I can’t feel them. Can’t see them. I shake my head to encourage some sense of reality to come into view. I can’t see. Blurred shadows cuddle each eye and it’s vision. Chemo does this – chemo effects our eye sight.
My eldest daughter struggles to see me when I am knocked out like this. She stops her life, and reaches into mine, frustrated she can’t make it stop or offer any kind of solution to what eats me alive in full view of her. She clicks into parent role only too well now, and after 6 months my child role is easily triggered too. I hate this and it makes me feel very vulnerable and very very guilty. She is like glue – stuck to my side. Filling up my water, passing me my medicines, the remote control, my phone…my cat! He has a look-in too but is oblivious to the true life misery that surrounds him. Lucky. She knows the drill now. Better than me. ‘You need your injection before you go to sleep’. ‘Stay awake Mum – you need to eat’. She’s on repetitive loop. She reminds me of a toy she used to have when she was younger. It was an electronic book – turn each page to listen to a rhyme or a song. There were only 4 pages or so if I recall correctly, and she loved it. It drove me insane. She’d sit for hours turning the pages over and trying to match the sounds she was immersed in. I would take it away and replace it with something much more colourful or bigger. But no. She searched the book out again and continued to master the melodies until bath time. This went on for days. She was determined then and she is now. Determined to match my needs with her abilities as a young adult. I must admit now, that yes, I did remove the batteries in the end. Sorry. I did. I don’t think she has been mentally scarred by my wicked, selfish deed, but tonight as I lay here – half asleep – in pain – feeling the chemo cloak tighten its grip – I think about how amazing it would feel now if she could take my batteries out for a few days. Just long enough to reset this battered body I now own. I’m so bloody tired. My body is dragging it’s way through every minute tonight. I try and recreate the feelings of Wednesday – how relieved and positive I felt after my last treatment. I felt joy. Touched happiness, surrounded by those who love me and who I would die for. But it ain’t coming through. Nothing is touchable, as the stench of the chemo does it’s work.
My babysitter needs a shower, so I wait for her to leave me alone. I cry. Chunky hot tears – chemo tears. They fall down my face – dozens of them – in a race to splash onto my chest and gather in a puddle together. As they make their escape, and trickle down the back of my neck onto my pillow, I shiver at the coldness of their touch.
I think of my friend who didn’t get the news she wanted this week about her short term outcome and the tears accelerate further. I rejoiced at the end of my treatment on Wednesday, and she was told her treatment needed to continue for a while longer. Where is the fairness in that? I hate this feeling. It’s very very hard to know for now you might have a little win – feel some hope and relief that cancer and chemo may be leaving your life, when someone close to you doesn’t have that today. Not fair. But when is cancer fair? It rips into peoples lives and takes what it needs with not thought for what it leaves behind.
A burglar. Thief. Con-artist. Murderer.
Sneaky. Cruel. Selfish. Destructive.
I don’t know how long passed but my daughter is back next to me. She is holding my hand as I count down from 10 so my husband can inject my stomach. In goes the juice to stimulate the bone marrow back in to production. I am so fed up of needles now. I feel it jab in to my stomach (probably touched the pasta I ate way too much of tonight) and feel it shoot out again. It is spring loaded. It’s not painful as such. I am just weary of them now. I have had over 70 injections by the time I finish these. This includes blood tests, chemo treatments and Zapotin shots.
There is more to come I know. But tonight I cannot go there. I doze off. Daughter gets my ear plugs, eye mask, meds and turns off the light. I fall under the sleepy spell once more. Not for long. I wake up with a start. How the hell did Christmas get here so soon? It has only just been bonfire night??!! It seems not, as there are 10 drummers drumming on my sternum. I can feel their tiny black steel capped boots marching up and down on my chest bones.
I flick them away but still the pain continues. It rises – ebbs and flows – I try and control it with my breath. I rummage around in my head for distractions. ‘Good things that have happened today’, is the first thing that comes to me. I think of my clients – how I could have left them feeling after our session. We made progress today and reflected on distance travelled so far in therapy.
That helps – so I settle with that and let it play out. I think about how I finished treatment and how much I have dealt with and got on with – almost on autopilot. Crappy word, but I’m tired and need to sleep now. Pen down, light off. Body scan. The drumming is a faint noise – they have moved on for now – so I pull the duvet over my hot and sticky scalp and drift off.