And then I realised that to feel more alive, I had to become less afraid, so I did it. Lost my fear and gained my whole life back. What was at the time a chasm in my path, I realise now is just another bump in the road.
Chapter 4 October 21st 2016
Making a brave decision, I join the Non Hodgkins Lymphoma facebook site. It seemed after, that I opened up a portal, people came daily joining too. This disease used to be a drop in the ocean – now it’s as common as tea and toast for breakfast. It turns out this group has been my salvation – there are people out there going through the same thing – different sub-types, different therapies, scans, chemos, but we are all in it together. WARRIORS – not a group for one minute I’d think I’d be in, but now a class of our own, showing courage and stance.
November 1st 2016 – 4.25 AM Been awake since 3.30 AM and I’m getting nowhere here, sniffing frankincense, an essential oil, supposed to help with chronic stress, anxiety, boosting immunity and aiding sleep – – well it’s not working at this doorstep!!! My brain is yattering non stop in a wash cycle of anger….not pity NEVER pity, if all my body organs shut down at the end, my brain without a doubt will be the last thing standing, going on and on. I lay there a while, woke Dave – which I feel guilty doing – he cuddled me, we talked – stupid things really, he fell asleep again – I didn’t. This “watch and wait” malarky is like being on death row in America – you get to the end room and the guards say “It’s your turn tomorrow” – well at least I’d get a meal of my choice – it would have to be cheesy pasta followed by creme brulee, fig the calories. Then the next day I get a reprieve – “It’s OK we got someone bigger to fry – it aint your turn yet”. I don’t know if I can do this.
November 2nd 2016 – Quite calm considering!! Worked till 1 pm, my friends help around me, not overly mushy, but strong and comforting. My beautiful mum collects me and off we go, we had lunch together. Dave come and we went to my second home. We were seen quicker this time. Mum and I didn’t get the chance to play toilet team tag for the entire time of waiting like we usually do. My consultant did a range of tapping prodding and examining, found two more of my extended family lurking in my right groin, good luck squeezing in !! What’s a couple more in the grand scheme of things. Now I go back on Feb 22nd 2017 – ironically a year to the very day of diagnosis.
November 11th 2016 – Got a bloody viral throat thing, coughing till I retch and tears rolling down my face – most embarrassing. Hope this isn’t the start of things to come this winter.
November 17 2017 – A grand breaking day. This the very first day since diagnosis, which I haven’t immediately thought of my illness the minute I wake up. Today it was gone 10 o’clock while I was preparing the children’s snack. I told a colleague, don’t know why – she’s not my closest friend at work, but definitely the most level headed and mostly wise.
November 24th 2016 – As the train steadily made it’s way into London, I peered up at the sky, music in my ears playing merrily, spying a triangular shaped piece of blue, amongst the grey, rather like a beacon of hope. Meeting Jules, my cousin in the Capital, has given me a sense of power and control of myself, although not so completely brave if my ipod was absent. My beloved music keeps me focused. WE meet at Blackfriars with our usual tight embrace, and kind words, strolling across Westminster Bridge in a bitterly cold wind, finding a little bar, which sold so many different beverages, I chose a coffee, she has a vino, asking me a million questions, not minding really, rather than everone scarpering because they don’t know how to handle the situation. On the tube back to Liverpool Street after a long leisurely lunch, a man sits opposite, on the side of his neck sits a tattoo which simply says “Becky”. You do wonder why you see these things at rare times and what they are a sign of. Later on the train home, someone mentions “Park Drive” (I used to live there) I sat and pondered some more.
November 28th 2016 – I feel difference in my lower body only since Saturday (Nov 26th). 2 lumps together and another underneath those – they collectively ache. I feel like I am carrying around a pocketful of marbles.
November 29th 2016 – Flu jab today – concerned of any side effects as personally not having had one before. Terrific stabbing pain in right ear canal twice in the evening – unpleasant.
Dec 4th 2016 – Watched the penultimate “I’m a Celebrity” tonight – celebrity cyclone Starting to cry because I may not see another one, that’s when it happens, so suddenly – how stupid – keeping positive enjoying every day and then breaking down over a TV programme. How pathetic!
December 5th 2016 – Groin pain gradually increasing throughout the afternoon, taking nurofen in the evening. Last night Dave tapped me on my leg. I woke with a jump. Asking him why he did it, he replied “Because sometimes I can’t hear you breathing and I need reassurance you’re OK”. Couldn’t really think of a reply to that but it is sad to say the least.
December 6th 2016 – Pneumonia jab.
December 7th 2016 – Desperately tired today.
December 17th 2016 – Stinking cold, streaming nose and cough.
December 31st 2016 – Received my organ donation card – if they are any good in the end,
January 1st 2017 – Som my 50 x 50 starts. Who truly wants a bucket list. I am 50 in June 2017. I am going to do 50 things by then positively. The list is written. Start with enrolling as an organ donor yesterday. The appropriate medical people will of course have to check them first, but giving life after death is something kind of special to me. Still got a bloody cough causing copious amounts of bile in my mouth – disgusting. Had an early night, Dave sprawled across the bed leaving me with strip barely enough to get a lawn mower down.
January 5th 2017 – Keep forgetting everything lately. If I didn’t see Dave everyday, I’d not know he is my husband!
January 19th 2017 – So tired – can’t keep my eyes open this evening and its only 6.30 pm. It is depressing that I’m unable to sit and read my books, draw, paint or write all my favourite hobbies. It’s all glitter sequins and parties here.
February 2nd 2017 – Hospital check up. Mum’s with me. The toilet outside the Waiting Room is playing relay races between the two of us. Results CT scan 6-8 weeks Next check 8th May.
February 4th 2017 – Another stinking cold. I don’t like this game. I don’t want to play anymore.
February 16th 2017 – This last week I have felt better, less tired, more focused, more energy,
February 22nd 2017 – 1 year since diagnosis a canniversary. Feel angry today. I could scream and stamp and shout, never felt these emotions before now,
March 5th 2017 – Worse day since diagnosis, cried and cried all afternoon – not about the C – there are no thoughts about that in my head, just feeling so darn depressed and at rock bottom. And then one of our friends from Lymphoma Club passed away. He had the same sub-type as me – that’s when it rings home and bites you in the bottom.
April 1st 2017 – CT scan – ironic April Fool’s Day – well it had to be didn’t it?
May 9th 2017 – Cold and cough, groin pain, shattered