Wednesay 6h October 2021 - 3.38 pm

Feeling quite heavy today and yesterday.   Had a busy weekend at mom's and also celebrated a 19 year old's birthday, No 1 Nephew.   

I returned home on Monday and have been slowly unpacking bags, and putting stuff away and the flat looks a tad messy.   But that's ok.  I'll do it slowly and in my own time.

I did call the chemo ward today as I felt like I was coming down with a cold, I have a rather large mouth ulcer on roof of my mouth, and my mouth (roof of) looks a different colour and I've been having headaches for a few days.   Spoke to Sue who said come up and we'll check you out.    So i went up, had blood tests done which showed my white blood count is low as expected, but not so low as to be concerned nor require intervention.   I will continue to take paracetamol for the head.   This being the first round of chemo, I'm cautious and unusually for medical people, they told me to ring!!!!  Heaven for those cursed with health anxiety!   I did discuss with the doctor that I wasn't sure if it was my chronic fatigue flaring up or the chomo, or a mixture of both.   The truth is I'll never know and I don't need to.  I just need to keep myself as well as I can and today that included cancelling a trip out so I can keep myself safe otherwise my chemo next week could be cancelled if my bloods aren't ok.       

Now, it turns out that during chemo one's hair can hurt ..... yes you read that right.   My hair may hurt.  Today,  it hurts.   Infact I think that's what the headaches have been.   Apparently the hair follicles die off and mine are doing so on the right hand side of head.  I have also had some small bunches of hair come out which doesn't concern me.   I will happily shave it off when I need to; the bright side is I've never had a bald head as a hair style and believe me I've tried mannyyyyyy styles, perms, colours.   So bald will be a new one.   It will also save me money on hair dressers.   

So I sit here now, with a general feeling of unwellness.  I am not panicked or anxious just tired.   So I'm going to go lie down and maybe do a meditation.    

I do have new plants to put in the Belfast Sink, but they may have to wait until tomorrow. 

 

Love Titty and Tracey 

Tuesday 28th September - 1 week after chemo

Today I started to feel better and as the days have rolled on this feeling just continued.    The fear has been lifted and instead replaced by someone who is enjoying the minutes, the hours, the days.   I am in the moment, in reality, that place i've feared staying for so long.    

And what has my reality been?

Tuesday was a meeting 

Wednesday I've no idea as I didn't journal

Thursday Sam had a heart attack in front of me and Billy whilst sitting in the van he had just driven!!   

Friday I drove to Mom's and stayed until Monday 4th October 

Even Sam having his heart attack has not sent me back into my comfort zone of numbness and denial.  Billy and I both held Sam's hand as we waited what felt like hours for an ambulance, slowing watching him slip away, watching his eyes fix in one place, talking to 999 asking where the ambulance was, fetching a defibrilator, watching Billy panic when I went near it as he thought I was going to use it on a breathing man !!   The relief when help arrived was just .... relief and gratitude that a power greater than me had arrived.   3 powers infact arrived, followed by another 3.   They got Sam out, off to hospital, only for him to crash and have been thumped on the chest and have a stent fitted.    Sam is a very very lucky man, and I feel lucky and grateful that he did not crash in the van.   

Sam is a wonderful man.  He's someone I laugh with and be naughty with.   He has nick names for people such as 5 course and says things like his internet provider died which was his neighbour!  This sounds awful, but it's not malicious.   His humour is not politically correct and shouldn't be listened to by those with sensitive ears !!   His home is open house to a few good people.  He'll give his meal to someone that turns up unexpectedly .... He's a vegetarian and cooks wonderful concoctions from scratch, including growing his own and also sprouting seeds.   He's not keen on hugs, doesn't show his feelings much, except when he's angry.  He's well travelled, political, and very good with his hands.  He's know he's loved muchly but he's not mushy.    Oh and he hates toilet talk from women !!!!!!!!!!!!!!!!!!!

He is now recovering at home with beer n fags in bed !!!!

Sam is George's dad.  Here's his wall of fame.   

Love you Sam.   

Love Titty and Tracey 

 

Monday 27th September 2021

 I left Palace du Val and returned home to Tutbury.   I was a bit nervous but it felt right.   

Janice came to visit late in the day and we ordered pizza in and watched The Starling, a beautiful film about a child dying and the reaction of both parents, and the part a starling played.   Two of my fave actors as well Melissa McCarthy and Chris O'Dowd.   As time ticked by, I didn't want Janice to leave as I'd be on my own.  I was still anxious about not being able to get to sleep.    

And indeed, I couldn't get to sleep.  So I got up and wrote : 

My fear is I won't wake up if I go to sleep             

The reality is if that happens, I'll know fuck all about it !!!  and my perceived torture will be over! 

My fear about the boys being told I'm dead 

The reality is those are my 11 year old's feelings being projected onto them.  I don't want them to feel pain.  

More reality is they're young men, grounded and loved and supported by a wonderful mother.  They will cope.  I can't prevent anyone's painful or uncomfortable  feelings and to even try to do so is selfish, and also will not help anyone in the long run. 

My fear about being ill in the night 

The reality is if I feel emotionally unwell or scared, I can ring the EAP HELPLINE, THE SAMARITANS.

If I feel physically unwell I can ring the 24hour chemo helpline or 999. 

I DO NOT HAVE TO BE SCARED OR FEARFUL.  HELP IS THERE.   HELP IS ALWAYS THERE IF I JUST REACH OUT FOR IT. 

Writing this out helped enormously.   There is nothing to fear.   It's all manufactured in my head and by my inability to feel those pesky uncomfortable and sometimes painful feelings.   Well, the last week I have felt those feelings, I have sat through those feelings without numbing them with alcohol or food or spending or internet or ...... .   

I got through this time with Val who is an example of someone at peace.  Someone who has a routine, someone who isn't fearful about being alone, someone who doesn't rush through what she is doing, someone who is enjoying her minutes, hours and days as they happen.   She is in the moment.   

Also having a hand in this was the Universe.  This was my moment in time to feel and experience all of this.   

Love Titty and Tracey 

Sunday 26th September @ 7.50 am

 Awake early, arm aching and boob and armpit heavy.   I need to restart my physio exercises because I stopped doing them because my arm felt "normal" after the surgery!   

Realise I am obcessing about how I feel and need to get out of self.   

Today was the second day of my therapy with the "typing therapist".  And wow just enlightening.   Apparently I'm highly anxious.   Not just anxious.  But anxious about ... being anxious !!  

My primary anxiety is and has been probably my whole life my health.  I have health anxiety.  As I've gotten older, and gotten to know myself better, I've learnt to tell what's anxiety and what's real.   I'm typing that briefly, but in actual fact it's been crippling, debilitating and kept me frozen since childhood.  Aside from the operation at aged 3, there was a death in the family and I shut down emotionally.   

Today, I opened up again.   Everything fell into place.   It's like the fear has been lifted.   If I could get through what I had done the last few days, I knew there was nothing more to fear.   Not dying, not being sick, not being out of control.  Nothing.

 

Love Titty and Tracey 

Friday 24th September 2020 @ 5.50 pm leading into Saturday 25th September

This morning I felt still as racey in the head and still unable to stop sobbing.   Spoke to Mom on phone, then Sue @ chemo unit who was understanding and reassuring. 

I had my first therapy session today which came from a referral from MacMillan team.  They refer you to BUPA (or you can self refer) and then BUPA farm it out to psychotherapists.   So, she rang me as arranged at 9 am.  It was an interesting session that I could barely hold up my head to do sobbing frequently.   I have to admit I didn't much appreciate what she was saying to me .... probably because it was the truth !!!   Words such as gratitude and catastrophising.   How very dare she.  And to top it all, she fecking typed the whole way through the session.   Hmmmm.   I knew deep down, she was right in what she was saying.   I was just so distraught and that's ok.    

6 pm had a chicken casserole meal and feel on edge again now, projecting, feeling shaky and worried about going to sleep.    Val told Alexa to put on some music and we sat quietly just listening to it.   In that moment I felt a little peace.   

1.45 am I was awake and thought i'd listen to a podcast about lymphoedema, not because I'm a masochist but because the other breast cancer podcasts had been really helpful.   This one wasn't  though.   Dear God it was a horror story.   I suspect I am just more squeamish and just can't deal with the facts that the lady was divulging.    In a nutshell, she talked about fluid in her arms and fingers coming out of her fingers.   I switched off and tried to sleep again.

Saturday 25th September 

8 am ish I rose and felt like I had been run over by a bus.   I felt heavy.  The opposite of what I've been feeling.  My arm is tighter and that tightness has moved past the elbow.  

Rang Rosemary and was crying own the phone.  I did manage to ask her how she was and she was reluctant to tell me her cousin had died of cancer ... she refused to give me details !!!  and her best friend's husband was dying also and was in his last few days.   I thought one's pain is over, and the other's is ending. 

Realistically, this is day 4 after chemo.  Nurse Chris said at day 5 there might be a drop in mood due to steroids.   Chris also said I may not experience any symptoms initially .... mmmm yes Chris, not quite so for me. 

My energy and the heavy feeling didn't remain low all day.  Infact Val and I did a walk around the Hall Grounds, then sat outside for a while.  When we returned inside, we did a meditation.  I also 3 meals this day (hurray!!), drank loadsss of water and watched Strictly Come Dancing.  

between 4 and 5 pm I started craving sugar/carbs.  I realised what Val had been saying to me for a few days.... in my wisdom I hadn't eaten any bad sugars for days so my poor body was in withdrawal as well as being poisoned and having a bad reaction to the steroids.   DOH!!  My poor body didn't know what the hell was going on.   I couldn't eat earlier in the week due to nausea, so my blood sugar would've been lower but I've eaten today in small portions.   Made a sandwich and ate it in two sittings.  Then had another of Val's Wiltshire Farm Foods ... sweet n sour chicken which I managed to eat most of .   

Tonight, I also had my first bit of chocolate in days ... and I didn't really enjoy as I usually do.  I need not to be worrying about what I'm eating but just be aware and put good stuff in.  

Grateful today for a sober day, a meeting, Val, symptoms easing, eating more, no more steroids, warm safe bed, not being alone.   

Love Titty and Tracey 

Thursday 23rd September 2021 - reaction to the steroids

Titty was still red I observed, even more so.

I was feeling generally VERY unwell mentally physically emotionally.  Poor Val ate her breakfast through my sobs and she just gently held my hand, took my head to her to try to comfort me.   I had a couple of slurps of my protein shake and half a slice of toast but I really struggled to get it down me.

I rang the chemo line early and told them what was going on through tears and sobs.  I told them about Titty.  I told them about the night I had had.  I was to stop the steroids immediately.  I was to ring the breast clinic about Titty and ask them to have a look at it.   During this time, my armpit was still heavy and uncomfortable.  The breast clinic were amazing as usual; they asked if I could get up there and yes I could.   

I asked a friend Lady K of Winshill !! who very kindly took me up to the clinic.   I was taken straight through to a room to have Titty examined as one thing I've observed is that they hospital don't want you hanging around waiting rooms due to immune system being lowered.   Anyway, Sister said it looked red and was probably just settling down.   She did though ask Goddess Carmichael to come in and take a look, and a feel and she said it was a bit warm, and to be on the safe side, she would prescribe antibiotics.    So i trotted off with my prescription off to Carlton Pharmacy.   I was probably a pathetic figure of a woman this day.  I certainly felt it.    Lady K returned me home to Palace du Val where I started popping the first antibiotic.   

Dear God did these antibiotics smell and taste bad.  More gagging as it went into my mouth.  Felt soooo sorrry for myself.   I just don't do well with being ill.   

I'm not sure how the day passed, but it did with Val there, reassuring and solid.   

I went to bed at 7.30 pm, having had a small bowl of cornflakes with some banana.   

Feeling fearful again for my mom and Les.  What is the fear/fears?  The fear is that I will feel like this for the whole 6 months.  I want my mom's hug sooo badly and it came to mind that actually this is my 3 year old self in hospital having a heart operation in 1971 screaming for my mom who at that time wouldn't have been able to stay overnight as we do now.  I feel sad for Les as he's been in hospital now for 2.5 weeks, and we can't visit.   I pray he comes out of the hospital and doesn't die in there.  I can't get thoughts out of my head about the boys being told I'm dead.  I sob at the thought of it.  I see their faces.  I cry again now at seeing their faces.   

My head is still racing with thoughts o death, one being pulled off someone whilst I'm trying to strangle them, the window breaking and a piece of glass falling below into someone's neck.    Very very disturbing and frightening.  Also visions of Les coming home, delivered by un masked ambulance drivers.  He got up and then jumped like a monkey onto mom and then screamed like an animal.  Me and Mom looked at each other.   Then it turned out it wasn't Les, but Martin!!!  All whilst this was doing on, mom's paste table was out on the pavement with stuff on it.   And finally, I was driving my car and I couldn't move to steer it when it was just about to crash.    Woooooaaaaaaaaaaaohhhhhh. 

8.15 pm not asleep, clearly, had some lucozade and a pack of plain crisps.   

Love Titty and Tracey