Early morning followed an early night. Checked body for signs and clues to how I was feeling about approaching today. Yeah OK. Nor great. But OK. I can do this I tell myself – yes it is uncertain (you would think I’d be used to that by now), but yes I have come this far and after today I can officially say (or scream depending on mood), I have three cycles left……. Done five already!! It has flown by in retrospect. My lovely once colleague to best friend, cancer comrade, chemo queen – all of the above, told me this at the beginning and she was right. It’s September now – and then it a few weeks I will be smashing the sixth treatment – then a week after that it will be October, and then I will be able to say ‘I finish chemo next month’. One cycle in October – one in November. Then I am outta here girlfriend and straight into a world where plastic bags of medicines DO NOT EXIST. I won’t need to take all the gubbins I do on a daily basis to mange the side effects better. I’ll get my strength back and my identity will start to reconstruct and develop. My hair will return. My anger will go (? – still on the fence with that one), and I will heal in time for my operation in December.
I will get my energy back, I’ll sleep better, worry less (OK – on the fence with that one too), enjoy and actually taste my food and wine again.
OH – you can see what is happening here….. I’m designing my ending. I’m writing the final chapters… from chemo to operation to radiotherapy to THE END. It’s a good technique. You re the main character of your story – so why not be the director too? Harrison Ford has done it very successfully! So my turn – your turn….. You are the script writer too which makes this trio of roles, the roles you play and partake in, a fabulous learning opportunity to gain insight into your responsibilities as well as your priorities. What story do you want to create? What life do you want despite the burden of cancer and chemo?
This make shock some of you, but you should be be on the top of the list of both. You taking personal responsibility and prioritizing your needs will provide an overall increase to your mental well-being. You will be able to identify stressors, set good healthy boundaries, thus avoiding extra negativity and conflict, and determine what makes you feel in good in life – whatever adversity you are facing. Small wins = big short term and long term personal gains.
Take ownership – we are only here once remember. cancer has taught me that lesson.
So whatever your prognosis, – whatever time we have left – if we still find some energy and some hope we can still make the rest of our days on whatever planet we are on, focused more on what we want to do and be the best version of ourselves we can be no matter what. It’s just a thought……
Not a great experience today at the unit
My appointment is always at 10am. I am always early or on time and I always need an anxious wee before finding my seat. Through the double doors, fake smile on, the whiff of hand sanitizer clinging to the air around me, I find my seat and wait for the onslaught to begin. heightened today – prickly feelings of wariness and anxiety as I prepare to meet ‘Docetaxal’. Believe it or not, I only sat and read the side effects to my last drug ‘AC’ a few nights ago. This was a good thing to do. I read them and bloody hell – they are cruel. Thankfully I did not get them all, and some more milder than others, but I am now roused in confidence and determination. if I can survive this – I can definitely survive the next doses on my systematic therapy. Now, bear in mind, if you read the side effects of paracetamol and too much wine – you would be tempted not to take any! But I have strong inners thanks to the wine. I am totally convinced this is why I have managed so well with these toxins! (This is not backed up by any medical research by the way! Purely optimism)
Nothing went quite to plan – minor mistakes today – all the way through – and it didn’t leave me feeling safe or confident. I was not listened to. This is a trigger for me. I have spent my whole life not being heard (which is why I do what I do for a living – I want others NOT to feel this way), and right now, having cancer then chemo – I really need to feel heard, valued and understood. I have not fully felt this way since the misdiagnosis in November so maybe my stuff here – but still, I want to tell you the truth and how it was for me today. I appreciate they are busy and have stressful jobs, but my treatment and experience of it, matters hugely to me.
Firstly, this chemo requires you to start taking steroids the day before treatment. I was not made aware of this nor was I given them last time, so had to have them intravenously. That is fine – get that – took about 40 minutes to sort and administer. Then my bloods needing doing again as they were taken too early with it being bank holiday. An extra hours wait. I did flag this up last time but was dismissed. Bloods have to be taken 48 hours before chemo to check they are ready and able to take another battering. If counts too low you may not be able to have the chemo. So important. I know this stuff now!
Chemo went in – this treatment took about 70 minutes. Then my meds were wrong. No anti-sickness! WTF! These have kept me going and you know I hate the thought of being sick. Nauseas is bad enough – I don’t want the full puke experience thank you. I had to wait for the nurses to email the oncologist and argue for them for me. I was so anxious and felt like a total numpty fighting for these but there was no way I was leaving without them. I have explained this to the nurse last week when she rang and she said it would be sorted. The lady on the unit – dark blue – important – senior, did tell me they had them for me and that was wrong. This member of staff told me I did not need my injections with this lot of chemo drugs too. This was in complete contrast to what I had already been told. So yet again, I asked her to check. She was wrong again. They were in the fridge and now I have to have 8 instead of 5. It is a good job I questioned this or I would have been at greater risk than I am of infections.
After a reply from the oncologist who agreed to give me some of the anti-sickness I have been taking, they rushed the prescriptions through to pharmacy. It got mis-placed. I eventually crawled out of there just after 3pm, feeling emotionally battered and bruised.
My husband who had been waiting all this time for me – heard my heavy steps before he saw me. Poor bugger. I burst into tears and relayed my miserable experience and I threw my distress and anger at him. He caught it. I was absolutely knackered and worn out when I got home. I did nothing. I sat waiting to see what the new chemo had to say for itself. It was silent and I was so grateful. especially after the day I had just had. I was so tired, I could not speak. And when I did speak, I could not get any words out in any decent order. It was embarrassing. Chemo brain was on board and I just wanted out of the day and momentarily out of my life.