Thursday, November 11, 2021

9th November 2021 - I smell chemo

Can't believe it's been over a month since I wrote a blog entry.   A summary of that month could be: 

I felt my feelings, I felt raw, sick, tearful, fearful, ungrateful, sad.

I had round 2 of chemo and it was just as bad as the first round if not worse.   My dose had been reduced due to my reaction the first time around.   I had new anti sickness drugs.   But I had the same physical reaction where I felt sick, gagging and not able to eat and emotional reaction that said "I don't want anymore chemo".   "I want my mom".   I had the fear I was dying and all I wanted was to be with my family.   

Well, as you can see I didn't die.  But after 4 days with my friend Val, I asked my friends if anyone could drive me to Solihull to mom's house.    Fran and Chris to the rescue and despite only coming out of hospital the day before, Chris drive me to the place I was longing to be.   It didn't take long before the tears came, followed by sobs. I sat on the settee sobbing into mom's arms.    And she sobbed too.  

I stayed for 6 days.   There were lots more tears that I couldn't hold back.   My crying over the years had taken place in private, on the toilet.  But this emotion was not hidden.   I was able to ask openly for a shoulder to sob on.   

I left mom's travelling back in Beastie, not feeling 100% still but better than I arrived.   Janice stayed with me that night and the following day I went to hers to stay.  She had bought tickets for a wellbeing fair at Buxton Pavilion on Saturday and there was a spare one for Saturday.  

Saturday arrived, and myself Janice and Dawn set off for Buxton travelling along the road from Ashbourne which is a fabulous scenic route.  We parked up at the Pavilion and spent the day at the health and well being fair which consisted of stalls with crystals, stones, hippie clothing and also talks on different topics.   I wasn't fully present for the day, but I did enjoy it, especially the time walking around the Pavilion gardens which were just gorgeous, full of dogs and their hoomans, autumnal colours and just that feeling of being outside.  

I had managed to get an appointment with the Consultant to discuss the chemo going forward.   I'd sworn off having any more such was the trauma I felt.   I'd rung her secretary a couple of times, and an appointment arrived.   I spent about 40 minutes with the consultant discussing my options.  Since being diagnosed I felt I'd woken up to the situation, and wasn't just going along with what was suggested.   I didn't really understand why I was not having radiotherapy first if it targeted specific area.  I'd been told it was bolt and braces i.e. it was a mop up exercise for any floating cancerous pieces attempting to grow and invade other parts of my body, but I don't think I really grasped that part of why I was having chemo.  The consultant really listened to me, she answered my questions,  she understood I'd had 2 bad experiences now and really wasn't tolerating the chemo.   I asked if I could go straight to radiotherapy and she said yes and I asked why I hadn't had that first and it was then she explained about the area in the pectoralis axillary nodes and they were trying to reduce the risk of metastases.    So I was given 3 choices and I opted for a new chemo drug, Abraxane.   New to me, not new new.   I didn't want it that's the truth.  I couldn't even think about going to the clinic again to have the next treatment.   I felt physically sick at the thought of it.   I smelt chemo everywhere I went.   I don't think there is a smell to it, but something I smelt that day when I had to go back to clinic because I was so poorly, I'd now associated with chemo.  Also, smells such as raspberries in a fridge every time I opened the fridge door I now associate with feeling ill.   The petrol fumes when I'm topping up the car makes me gag.  The smell of my own toilet visits makes me gag.   Nail varnish makes me gag and the list goes on.   Even writing this blog has been delayed it makes me have to think about what's happened in the last month and quite frankly, i'm struggling to deal with it all.   

I don't do ill.  I do a tummy bug and then it gets better, a migraine because I know a tablet fixes it.  Having cancer and having to deal with the feelings of it day by day, minute by minute, hour by hour, the uncertainty of it all, not knowing if I'm going to feel nauseas today, or if my food is going to reappear from my mouth (which to be fair hasn't been that often) or if it's going to stay in my tummy and reappear as a solid stool or squirt out of my arse like a chocolate fountain.   It's all the unknown.  It's all out of my control.   It's been terrifying for me.   And probably not that great for the people around me, my family and friends.   I honestly can't imagine what it's like to see someone you love in that state.   I'd want to fix and make it better, but no one can make it better.  They can only do what they are doing and what they have done.   Love me.  Hug me.  Reassure me.  Be there.   

So, I have had the new chemo and I tolerated it so much better than EC which was the first and second one.   I could eat small amounts as opposed to just chewing on a rich tea biscuit which which didn't descend my oesophagus easily.   I ate a lot of baked beans the following week.   I still felt the nausea but it was mainly tolerable with the tablets I am given.  If I was late taking a tablet, the feeling kicked and I knew it was tme. 

I still cried and sobbed at times during the week at mom's house.  I felt because I didn't look as bad as I had the previous time I'd been at mom's that people thought I was ok, I was better. I was talking on the phone.   My messages were more coherent.  But that wasn't the case.   I was still vulnerable and needed support and my mom.  And that is ok.     

The one good thing I did do was to reach out to someone who like me is in a fellowship and who also has had cancer.   Talking to her was reassuring as I was feeling bad because I didn't grateful to be alive, or for the fact that I have a good prognosis,  I didn't feel positive, I could see no light at the end of the tunnel.   And I felt bad for not feeling good or grateful.   But the reality for me is that is how I was feeling and it's partly chemical imbalance and the other part is just being a human being and experiencing feelings.    And it's this part I'm not good at.   It's this part I've fended off for years.   Not totally of course as that would make me completely numb.   I don't tolerate uncertainty very well.   And this experience, this part of my life is making me face uncertainty.   

Another good thing I did was visit my gorgeous boys for a Halloween evening and then a trip out to the Lickey Hills.  It was supposed to be going to see nephew number 3 at football, but it got rained off.  And then the sun appeared so we made the most of it. 

Here ends the summary of the last month.   And I am grateful today for being here.   For feeling well enough today to type this.    


Love Titty and Tracey 



         

Wednesday, October 6, 2021

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 

Wednesday, September 29, 2021

Wednesday 22nd September - oh my goodness: shits about to get real !!

 Last night I got about 3 hours sleep.   

MY HEAD WAS RACING.  

I SOBBED.  I WANTED MY MOM.  

I got up and showered, and whilst catching sight of myself in the full length mirror, I observed that Titty looked a bit red.  She also felt warmer than normal.   I asked Val to have a look and yes I wasn't seeing things.   It was also starting to get a bit more dimply than normal, or as I came to see it later, "pitted".  

Pitted Titty
I took my 2 steroids, my 2 omeprazole, my anti sickness.   I still felt rough, however I managed to do an online meeting on Zoom at 10.30 which took my mind off how I was feeling, for a whole hour.   


I came home to pick up some more clothes as I'd only taken an overnight bag.   I spotted my neighbour in the garden, and it was sunny, so I popped down to eat my lunch.   I took 2 slices of toast and a cup of tea with me.   After about an hour, maybe less, I returned home, during which time I felt worse and worse.  I vomited after eating toast with jam and another with peanut butter.  I actually felt a bit less nauseas after throwing up.   

Val was telling me I could stay as long as I was wanted; my head however was saying she was being polite.   Thankfully, I ignored my head and returned to Val's a couple of hours later.   

I chatted to Val about throwing up and how I was feeling and I rang the chemo unit to chat to them to see if this was what I should be expecting.   In the meeting with Chris the nurse the Friday before she'd said I probably wouldn't notice anything until day 5 !!!!!!!!!!!!!!!!!  soooooooooo notttttttttttttttt trueeeeeeeeeeeeeeeeeee. 

I was tearful on off and worse was yet to come.........

Throughout the night, MY HEAD WAS RACING.  

I SOBBED.  I WANTED MY MOM... 

I WAS STOPPING CHEMO

I WAS ONLY DOING IT FOR OTHER PEOPLE

I'D BE QUITE HAPPY TO LEAVE THE WORLD

VISIONS OF STRANGLING PEOPLE

VISIONS OF GLASS FALLING OUT OF WINDOW AND INTO SOMEONE NECK

VISIONS OF FAMILY BEING TOLD I WAS GONE 

 MY HEAD WAS RACING.  

I SOBBED.  I WANTED MY MOM... 

I WAS STOPPING CHEMO

I WAS ONLY DOING IT FOR OTHER PEOPLE

I'D BE QUITE HAPPY TO LEAVE THE WORLD

VISIONS OF STRANGLING PEOPLE

VISIONS OF GLASS FALLING OUT OF WINDOW AND INTO SOMEONE NECK

VISIONS OF FAMILY BEING TOLD I WAS GONE 

MY HEAD WAS RACING.  

I SOBBED.  I WANTED MY MOM... 

I WAS STOPPING CHEMO

I WAS ONLY DOING IT FOR OTHER PEOPLE

I'D BE QUITE HAPPY TO LEAVE THE WORLD

VISIONS OF STRANGLING PEOPLE

VISIONS OF GLASS FALLING OUT OF WINDOW AND INTO SOMEONE NECK

VISIONS OF FAMILY BEING TOLD I WAS GONE 

All night this continued.    Why the fuck I didn't go wake Val up and tell her and ask her to help???????????     WHYYYYYYYYYYYYYYYYYYY

  

Love Titty and Tracey 

Tuesday 21st September 2021 - first chemo day - the day my piss turned red !!

Val arrived to pick me in up in plenty of time to go to the chemo unit @ the hospital.   We were seated down the far end area where there was a couple of other people.   Each chair had a perspex screen between them.   

We waited a little while, but were given a lovely cup of tea.   Angie then introduced herself as the nurse who would be giving my chemo that day.   I was given a small cup of pills to take which were anti sickness and 

I was given a pillow to put under my arm where the chemo would be being delivered.   First things things, questions, none of which I can remember other than what do I think is happening today.  

the rest of the unit 

Angie explained the process; there would be 5 syringes and a bag of saline which would all go through the cannula that she had fitted, taped down securely so it wouldn't move.  

Initially, some saline and Angie asked if I could feel that and there was a cold ish feeling.   The feelings are important when it comes round to the chemo going through because if there is a burning feeling it could mean it's not going down the vein and burning vital parts of my body !!   Thankfully, there was no burning feeling and in went the first syringe, which was red in colour (the liquid was red, the syringe was clear !!).   

The Poison

Ange did ask if I wanted to take any photos and I was chuffed at this as I have been photographing the process.  

Slowly, syringe after syringe and a whole bag of saline was in my body.   I was officially poisoned and had a goody bag and a booklet signed by Angie to prove it. 

The goody bag containing 

  • Steroids enough for 5 days 8 mg per day 
  • anti sickness tablets for a week after chemo (or as and when needed)
  • chemo record book 
  • car parking voucher 
  • box of injections which were to be self administered for 5 days after today 

The chemo record booklet I was given is my little record of each session, showing exactly what I've been given.   It also has oodles of other information in there including: 

  • signs of infection 
  • 2 cards for me to put on my person 
  • phone numbers for chemo unit
  • phone number for emergency 24 hours 
  • a place to record side effects 


Val drove us back to my house and I packed an overnight bag and then headed to Val's where I was staying for the night.  She'd offered me to stay but I thought I'll be ok on my own, being someone who likes to control her environment.  But then yesterday, 20th September, the thought came "why be alone?" when I'm craving company, when I can't sleep at night.  

and we're off 
I'm so glad I accepted Val's offer because this PM I felt shit.  Nauseas, chronic belching, bloating, then feeling normal for 5 minutes then nauseas again.    I'm lying here in bed tearful, hot, nausea, wondering if and when my sandwich eaten at tea would be reappearing in the white porcelain bowl in my ensuite room at Val's.  Crying because I have 6 fucking months of this shite and after today, I'm thinking I cannot not have any more sessions.  And just take my luck as to whether the cancer returns.  I think if I were to get scan results on Monday and my lungs weren't ok I'd stop treatment and just enjoy the time with my family.  

It's the thought of feeling so ill for 6 months.  A glimmer of reality appeared saying I don't know how I will feel.     


Little did I know on this day, this was just the start of feeling rough.


Love Titty and Tracey 

Sunday 26th September 2021 - what a week !!

Without wishing to catastrophise, it's been a fecking hell of a week.   Today is the longest I've spent at home alone since last Tuesday before chemo..... let me begin .... with 21st September chemo day .... 

  

Love Titty and Tracey 

Monday, September 20, 2021

Titty wears an underwire

Huge news is that Titty and her friend Right Titty, were encased safely back in their pink underwired sports bra.  They soo enjoyed having some scaffolding again after walking round nearly touching the belly button hole!!   It did get a bit uncomfortable at times, so it comes off quickly when we're at home.  


  image copied from https://purpleclover.littlethings.com/relationships/6222-life-40ddddddddddd/

https://purpleclover.littlethings.com/relationships/6222-life-40ddddddddddd/



Monday 20th September @ 23:36 - can't sleep and first chemo tomorrow

So, on Friday last week I had my final hospital appointment of the week, visiting Oncology nurse called Chris.   I arrived half hour early as was still on the bus as car wasn't done prior to the visit.   So I sat in the waiting room, people watching, fill in Covid form and taking sneaky photographs. 

Chris collected me from the waiting room, took my temperature and took me a room and made me a lovely cup of tea.  In this appointment, Chris went through what would be happening with the chemo, when it was going to happen, what might happen, what shouldn't happen, who to contact if any concerns.....


The 3 weekly cycle of chemo, starting in 10 hours and 20 minutes, will always be on a Tuesday.   It will only go ahead if my blood test results from the previous Friday are ok and if I'm feeling well enough.  On hte Monday before the chemo on Tuesday, my lovely consultant will contact me to say if bloods are ok or not.   I have the responsibility to book my own blood tests on line so must not forget to do that.   

I was surprised at a few things Chris said including .... 

  • if you are vomiting, you shouldn't be, so ring the 24 hour hotline,
  • if you have diarrhea it's a red flag, ring the hotline, 
  • in my temperature goes above 37.5 ring the hotline, if i'm so weak I can't leave my bed, ring the hotline.   
    I was totally expecting to be vomiting, spending days in bed and just generally looking and feeling outrageously rough.  I may feel rough, but there's a limit as to how rough before it's a warning something isn't as it should be.   


  • I could get mouth ulcers, if they're so bad I can't eat, ring the Helpline 
  • I could get chemo related fatigue 
  • I could get flu like symptoms 
  • I may not get any or many symptoms for the first few days, other than the steroid reaction
I do have chronic fatigue anyway, so I asked about that in that presumably if it's worse than normal, then could be good chance of it being the chemo.  Basically, it's just common sense (I say that now before I've had any however, when I'm feeling shite and panicky common sense may leave the building).   Chris reassured me though if in doubt, RING.   

Tomorrow, I will also be taking steroids for a few days (4 or 5?), and this apparently may make me a bit hyper and then when I stop taking them ..... there may be a bit of a crash.   Also, on the Wednesday, I'm going to have to jab myself in the belly ... but I can't recall why so I will ask tomorrow.  

If my hair falls out, I can have a £100 voucher for a wig so I've decided on a longish one ... thinking Jennifer Anniston, or a spiral permed one to recreate the look I used to have !!! 

Chris took me round the Chemo unit and introduced me to other nurses and also the lady on reception whose name I have forgotten... but she was described by Chris as the woman that keeps it ticking over (or words to that effect).  It felt like I had been for a job interview, and now being give the tour !!   

I will be give a booklet tomorrow which I should fill in (I do love stuff like this !!!).   This should travel with me to each appointment.    The appointments will last about 45 minutes and for the first one, someone can come in with me so Val will be picking me up, driving us there, coming in with me an driving us home.   She has offered me a bed for the night but my need to control is saying "no, i'll be fine".   But actually today I thought, do you know what you might be ok, but wouldn't be reassuring to be around someone.   So tomorrow morning I'll see if the bed is still available.   

The last few days I have been feeling more positive about the treatment and the outcome.   Maybe partly due to just processing and going through the emotions, accepting that there's only one way to do this and that's to go through it to come out the other side.   I did also last Wednesday have a Reiki session and since then, I've had also more energy and motivation to do stuff.  I have also been doing some meditation and trying to tap into the energy in my body and raise it.   I'm also working with my neighbour over da fence on an art project which is turning out to be rather fabulous.  Neighbour over da fence came round Sunday morning for our 2nd Sunday meeting and we laughed so much .... just what I needed.   

I decided as well to take pressure off myself regarding getting the wedding photos edited ready for this free book that I could have worth £100 ... I spent days getting photos ready, but it's a process that can't be rushed so I accepted actually just because it's free doesn't mean I have to have it.   

My eyes are heavy, my head is heavy, but when I put them both on the pillow, the head won't shut off, not even with meditation tonight.    But I'll go and try anyway.....

Love Titty and Tracey 

Thursday, September 16, 2021

Titty is objecting to too much gardening!!

 I was up at silly o'clock to get the bus to the hospital.   It did though enable me to sit on a bench in the sun and make a call whilst waiting to go inside the hospital.   

Today was a first visit to the Chest Pain Clinic were the lovely Louise took care of me.   She did simple things that made a difference ... she told me her name for starters... she was considerate and respectful I even managed a peak at my heart beating on the screen !!!   It was making some right old squelching noises.   Infact I said to Louise, ooh that sounds wet to which she replied "that's good given the blood that's surrounding it " !!!!! Apparently my old ticker is in good condition ready for next week.

Next was Count Dracula's department, having blood taken.   I was in and out quite quickly.   And then I was home again after my excursion on the bus.      

I had the urge to mow the lawn today, the first time for about 2 months.   I took it really slowly, had fun putting lines in, circles in just because I can.    Also hacked the plants as they're dying off now.   My huge huge thistle had the chop.   It gets bigger and wider every year this bad boy does.   Whilst cutting other plants down, Titty started to object and I was getting some discomfort.   It's the most physical exercise of my upper body for a while apart from physio.   I had the mad urge to carry on, but I did the sensible thing and tidy up and put everything away.  

Filled up the dog bowl with clean water for the passing dogs.    

I tried to have a little sleep which I did briefly but didn't want to stay too long in the bed as i'd not be able to sleep tonight.   Chances are I may not sleep tonight anyway, but I'm giving myself a chance.

I've continued filling in forms, searching for documents and sending emails off regarding financial stuff.  I can do no more at the moment. 

Its been a busy week with 2 long days earlier on so I know I'm going to be resting up the next few days with just my last hospital appointment tomorrow at 3 ish.   

I've also continued to battle with Lightroom.  I can lighten my photographs and titivate them, but I can't then see them in the photobook software .... more research to be done.   I have 2 days left of a free book offer so I really want to get the main photos done.   

The Bride wore Converse and the Groom a Kilt 

Love Titty and Tracey 


Wednesday, September 15, 2021

Wednesday 15th September 11.44 pm - can't sleep

Been in bed about an hour and I'm just lying there wide awake projecting about the future.   Which isn't helpful.   And the projection is negative.   I've had a nice enough day.  I had a Reiki session locally, my first for a few years.   I've had a few co-incidences or as I like to call them God incidences .... 

  • firstly, the Reiki lady turned out to be the one I had a few years ago...  I couldn't find her details as it had been so long to re book so I booked someone via recommendation after asking on my local Fakebook group and I got a lovely surprise to see her standing there when I went to the address.

  • second I pulled a card this morning (archangel Michael - crystal clear intentions "Be clear about what you desire, and focus upon it with unwavering faith") and when he's nearby you'll see colbat blue sparkles with tinges of  royal purple.   Well, during my Reiki, as my face was being hovered over I saw the colour purple ...  

  • During the Reiki energy was blocked around my knees..... now my lovely knees have struggled over the past few years, not with walking, but with things like kicking a football around with the boys, being in goal and my feet feeling like they're stuck to the floor, climbing steps.  Also i'd had a series of falls over a period of 15 years (bizarely starting after I stopped drinking).   I felt that there was some kind of "block" to me doing these things, I'd also convinced myself it was MS or Parkinsons because of the lack of strength in the knees and the falls.   But alas, it turns out after investigation it is FND - a neurological disorder that can cause all sorts of symptoms and can be triggered by trauma.   Anyway, that was a load of information that probably isn't needed... needless to say my knees were worked on today. 

  • I also pulled a card whilst with Reiki lady and it was about letting go.   One of the reasons I waned the Reiki was to get some healing and focusing on letting go and just being.   The Reiki lady also pulled a card for me and that was about self belief which led to a discussion about my creative endeavours and how I struggled to push it to the next level.   

  • The final God incidence was when discussing my creative stuff, I mentioned that myself and someone else were starting to work together on a project .... to which Reiki lady replied she too was working on a community project and would be looking to involve creative people.    

This all blew my mind a bit today.   It also energised me.  So much so, I left the session and saw a park opposite and went to swing for a bit.   I've also been weeding my garden which has exploded through lack of attention as I just haven't been that interested as I normally am.   I'd normally go in for hours, but it's short bursts at the moment.  It's not helped by the fact that I get fucking bitten every time I go out there.

I decided to be pro active and prepare myself for the change in income on 23rd September.  My occupational sickness pay has reduced from half now to zero so I will get the fabulous sum of £413 SSP.  This does strike fear into me as that will be consumed by my rent alone.    I do receive currently about £100 in universal credit because I was working 21 hours so this was a top up.  And then we got the extra £20 per week and do you know what, IT DID AND DOES make a big difference.  It's the difference between not having to worry about running out of money for food or gas/elec or petrol.   It's that simple.   The extra £80 per made has given me a feeling of security.  And that is stopping for me and thousands of others after 8th October (i have written to my MP, daddy's wife but it won't make a scrap of difference).   

We've all heard of people on benefits being slated sometimes as lazy and having an easy life blah blah blah.  So let me share my experience before I got my current job.   I received the sum of £617 per month for EVERYTHING - rent of £360 then, council tax was reduced to about £30 per month, and all the other bills were the same, no reductions.  And every month my direct debits bounced because I couldn't pay them.   So when I got my job for 21 hours a week and a £100 top up from UC (per month) the absolute relief at being able to pay all my bills was immense.  I still had fuck all to do nice things with that involved spending money, but I was grateful for just paying the bills.   I told myself I had gone from £617 to nearly £850 per month so there was a good chance at some point, I could increase from the £850 per month.  But not at the moment. Instead I've been filling in the benefit calculation on the Macmillan website to see if I can get any extra financial assistance.  I will speak to a human tomorrow at Macmillan as they have experts in that area.  I have to say a huge THANK YOU to MacMillan.  They have been fabulously supportive to me and no doubt millions of others.   I have been able to ring breast cancer nurses when I don't want to ring the hospital, I have been able to get emotional support from them when I don't want to talk to family or friends.   And they have already guided me with finances.  They are just there day after day, until 8 pm.   

And then nighttime falls, as does my mood.  And I'm sitting at computer crying again because I'd been to the toilet and I noticed a bit of bright red blood floating around my stools  - INSTANT PANIC.  Not only that, when I blew my nose I was wiping out bits of blood.   OH DEAR GOD that's it i'm done for is what my mind said and I just cried.    Now the reality is I have a couple of piles !!! and if they burst when one is pooing, then fresh red blood may appear on the bog roll or in the loo.   My head just went.  I suppose the truth is I'm feeling quite lonely at night at the moment.  I want company but I don't know whose company I want.   Infact sometimes, I think just a dog will be more than enough !!  I also have my car in the garage and I have 9 am appointment in the morning.  I had arranged for a lift but a friend is unable to do it.   Did I ring and ask anyone else?  NO.  I'll go on the bus.   The bloody bus gets in 40 minutes before appointment.  But that's ok.  As I'm going to the Porters Lodge tomorrow !!! to a department near it so it'll be an opportunity to kill time.   

This evening I also watched one episode of Married at first sight UK followed by 2 episodes of "Mary Kills People" !!!!!   Mary is a trusted doctor working in a hospital in America and she does end of life care for $10,000 privately !!!  Don't think I'll do any more of that series (laughing to myself here). 

So, all in all, an interesting day of highs and lows, tears and blood, chocolate and swings.   

Tomorrow it's hospital for 9 am for 2 appointments and then day is mine.  I have creative endeavours to be cracking on with 

I'm going to end on a positive note with some gratitude.  Top of my list is always that I haven't had a drink today.  For the NHS care and support I'm receiving and the EXCELLENT PROGNOSIS they have given me!  Also for the NHS care and support that my step dad has been and is receiving for his pneumonia.  For the Reiki received today (which was a gift from a dear friend), the food I have eaten and that I have in my cupboards and fridge and freezer, the credit on my gas/elec meter giving me light, the water in my taps,  this slow frustrating computer that I sometimes want to smash up when it crashes containing hundred and hundreds of photographs I have taken, for my overgrown garden, freshly picked raspberries from my own bushes added to the freezer, my neighbour putting my bin out, for feeling safe and securie in my flat. For my family and friends.  And for the cows.  I haven't seen them today, but I know they are there !!!!!   Enjoy my cow below. 



Love Titty and Tracey 



  

Monday, September 13, 2021

monday 13th september - scan day

I heard on a podcast that cancer patients had done that they had something called "scanxiety" which is basically getting anxious before your scans.  

I had my 3 month scan this morning and was in and out the hospital within 20 minutes!   There is an anxiety there with the scan.   Simply, what's it going to show.   When I received the original scan results 3 months ago, Miranda told me there were some marks on the lung "but she wasn't concerned about them".  Infact I don't think she knew what it was.   So at the back of my mind is the thought "what's it going to show".    And the answer is .... to be revealed next Monday when my lovely oncologist is ringing me. 

This week I've 4 trips to the hospital: today for the scan, Thursday 9 am for the ECG, Thursday 10.10 am bloods, and Friday at 3 pm to see the oncology nurse.   In between now and then it's car MOT and a Reiki session on Wednesday which I'm really looking forward to.  

Sleep was pants again last night.  I watched a cracking film The Mule with Clint Eastwood ... brilliant but didn't put it on til 9 ish so was too late for me.    



Love Titty and Tracey 


Friday, September 10, 2021

Can't sleep - Friday night 10th September leading into Saturday morning 3.44 am 11th September

I spent last night watching some mindless television - MAFSUK - that's Married at First Sight UK.  I like people watching and observing behaviour so .... I went to bed at a reasonable time I think and was listening to a podcast (n food addiction and recovery) and the speaker Jillian             was discussing how abstinence alone isn't recovery, it's about reconnecting with self, being in your body.   Why was I was drawn to that podcast?   Because that's where I find myself at the moment.   Eating sweet sugary or carby stuff and numbing out.   This isn't new behaviour.   My issues with wanting to numb out go back years and years.  

Addiction = insane behaviour.   I would say it's insane to  keep eating shit food night after night when I am just about to start my cancer treatment.  A sane person would just be able to act on the thoughts of "mmm this is not good for my body" I'll stop and eat something healthy like fruit.   I'll get my body strong to give myself a chance.   But for me, I am using the food to stay disconnected from my body because I'll have to REALLY face what's going on.   It's possible that food will kill me even if the cancer doesn't.    And that's not dramatic to say that.   It's a reality, one that's in my head.   It's not a reality I feel.... or do I?   Is this inability to sleep about not letting go?  If I fall asleep I might not wake up.  I did a blog back in 2013 about compulsive eating .... and here I am 8 years later.....  (https://refinedcarbbandit.blogspot.com/2013/01/introduction-to-my-compulsive-eating.html).

Looking back, I've always been drawn to television programmes where I could lose myself in the fantay lives of others including LA Law where I was obcessed with Grace the blonde bob haired lawyer with unique eyes, Ally McBeal, Neighbours,  Home n Away, Little House on the Prairy and The Waltons.   

I really do believe that the cancer is a message for me from the universe to say "enough".   Enough with avoiding yourself, enough pushing your chronically fatigued body so far that your whole body is stiff after a day at work, enough of this poor nutrition, enough of giving your energy to things outside of yourself, enough enough enough.    

My body wants some energy for itself.  It wants me to spend time loving it, nurturing it, letting it rest, giving it relevant exercise, letting is laugh until tears come, meditation and yoga.  It's screaming at me so loudly and I keep just stuffing the screams down with more food.   I sit here now, 4.11 am and I want to go eat all the kit kats in the fridge rather than sit here, feeling uncomfortable, and expressing how I feel.   

I'm also obcessing about my scar tonight because it feels tight.  The scar comes from the armpit, down Titty and round the Titty's nipple.  Where Titty is being held together by the scar is where it feels strangely tight.  I feel the need to support it.   It feels like the weight of Titty is pulling it down.   Again, probably hasn't changed and it's my head looking for things to give attention to.   


So, I shall go back to bed now and try to sleep.  I shall pop my bra back on to give me some support.  That small task will ease my mind.   

Love Titty and Tracey 

what a difference a day makes .....Wednesday 9th September

I've woken up this morning (having had good night's sleep) and feel much better than yesterday.   It's no coincidence I suspect that for dinner last night I ate the foods that really benefit me .... protein and wholegrain carbs.   I could've quite easily had oven chips smothered in salt and an egg and red sauce but I'd defrosted that damn fish and sweet potato stew (it's a not a stew really but that's the recipe name) and I wasn't going to waste it.   I've also had lots of rest this last few days, and talking to MacMillan also really was good and a meeting at lunchtime.   

If I'm craving carbs i'm imbalanced so it's a real reminder (again) how different (positive) (not tearful) I can feel.  My protein powder has also been delivered today, so breakfasts are sorted again so this will help will my imbalance.      

Love Titty and Tracey 

Tuesday, September 7, 2021

Those pesky feelings

I have nose dived today again this afternoon.  The feeling of I don't want to be with people, feck off all of you, let me dwell in my misery.   My head was telling me don't ring anyone, don't tell them how you're feeling...so I rang the Macmillan team for some emotional support.   It's easier to talk to them as they're not emotionally involved.   I had a good cry, was very honest about how I am and have been feeling and the outcome .... ?  well, I do feel better than I did before I rang.  

I may have already said this, but from May to getting to a point after the operation when I felt semi normal again, I just did what I had to do.   And now, I am feeling it.   I'm not unique and although to me my emotions can feel hugely dramatic .... usually when I talk them through they're not.   

So, its time to get me and Titty some fish from the oven .................


Love Titty and Tracey 

First appointment with Oncologist

Had my first appointment with a lovely lady today who I observed is a hugger ... she didn't hug me but was demonstrative with her hands.   

I came away with 2 x 4 double sided pages of chemo drug information.   It seems I'm having 2 different ones: 

On 17th September I start the first of 4 sessions, three weeks apart for 40 minutes each with EC.   Then, if that doesn't kill me off, then I'll start another 4 sessions with a drug called Docetaxel.    I jest about it killing me, but there are some serious side effects of these drugs including damage to the heart.  Therefore, another ECG with jelly is on the list for next week. 

Today was really about what's going to happen and going through side effects that could happen (but may not) and getting my first dates for appointments.   

  • blood tests will be done prior to chemo, each time I visit as I understand it, apparently on a Friday apart from the first time which is a Thursday 

  • on this first date I will also have the ECG with jelly (no icecream.... gutted) 

  • 1 hour visit to a chemo nurse the day after the blood tests

  • then the chemo on a different day 

Getting a digital thermometer is on the list as any increase in temperature could be a sign of infection and apparently I don't need any infections !!  And I won't be driving myself to chemo either !   


Love Titty and Tracey 


Monday, September 6, 2021

Oncologist later today, 11.20 am

I have my first appointment with the Oncologist today.   My dear friend Fran is accompanying me on this visit.   I've set up a Whatsapp group of a handful of friends and when I get appointments I message and ask if anyone fancies a road trip !!

The photo below has nothing whatsoever to do with my visit today.  I just love this photo. 


Washing Drying in Borth, Wales


4th September 10.45 pm

 Last night I couldn't sleep.  So I got up and spent a couple of hours blogging until about 3 am.   I'm struggling with how  I feel.   I feel like I'm waiting for the next scan to tell me if there was infact anything on the lungs as presumably it will have grown if there was.   I'm struggling with the thought of 6 months of chemotherapy and living on my own with that.   I'm struggling with the thoughts that this might be an easy way out ..... and I have been ashamed to share that with anyone. 

7th September - 00:03 am 

Did a bit of gardening today, not much, just pulled out a few weeds with right arm.   My head and heart just weren't in it.  The sun was unbearable even for just the hour (or less) that I was outside. 

My thoughts aren't positive, I don't want to talk to anyone.  I feel shutdown, but put a front on when I do see someone I know.   I'm told by the support group I joined today that it's ok to feel like this, it's normal, I've got cancer, i'm had surgery and take each day as it comes.  

I've been what I heard on a cancer podcast "health obcessed" for most of my life.   You've heard the one about the person with a head ache and before long it's a brain tumour in their mind.   That's been me for a lot of years.  When I got into recovery 16 years ago, and no longer numbed my body with alcohol, i had to face some feelings.  I had to face real life, not the one going on in my head.  The one in my head where people didn't die, where everything was lovely, where I always ended up rescuing someone.   For 16 years I've been changing and growing and trying to be the best me I can be, the authentic me.   But I've struggled with it.  


And now having to deal with something I can't control it's terrifying and for some reason I think I should be dealing with it better than I am !!!  When I'm feeling emotional and hopeless, I forget that I sat in front of Miranda 3 months ago and she told me I have got cancer in my breast and lymph nodes.  I am facing the one thing I have always feared yet sometimes thought I wanted.  My own mortality.    So yes, I am popping into denial some days, as that's been my coping mechanism since childhood.  Yes I'm just going through the motions.  Yes I'm eating shitty sugary carby foods in search of the comfort it used to bring me. It's comforting me momentarily and then I'm with me again.   

I have to feel what's going on, express how i'm feeling in whatever format helps me, if I don't want to speak to people today that's ok I can't take on their feelings and I'm powerless over whether they are worrying about me.  

So tonight I give myself permission to be me, to be scared, to be tearful, irritable or whatever the hell else feelings I have without my head telling me "oooh you should be grateful, you should try helping someone else and stop thinking about your self, you should be eating better food, you should be walking like you were before the operation.   Because SHOULD is SHIT.   Should is used to indicate obligation, duty, or correctness, typically when criticizing someone's actions.      

Enough with the SHOULDS.



Love Titty and Tracey 

Saturday, September 4, 2021

9th August - 4pm we arrived @ Clarach Bay

I'm not going to talk about my holiday, other than to say Monday night was the first night I looked at my scar since the dressing had been taken off.   It hit me then, it became real, I'd had an operation, been cut open and sewn back up, had my nipple moved and I'd woken up from surgery and survived gone through nearly 2 weeks of "stuff".  I cried.  When the emotion came I let it out.     

I held onto Titty when I walked, when I went to the toilet, when I got dressed.   I gently placed her into the specially purchased bra from Royce who make bras for breast cancer ladies.         

My boys and the bus driver all helped me when I couldn't get up a step or ramp, their arms extended and I took their hands.   

I think being kept busy during this week also kept me from dwelling on the operation and the outcome and what lay ahead.  I was with the people I love most in my life and that was enough.   I saw the sea, I paddled, holding hands with the boys and screaming when a wave hit above the knees.

my very own boy band who have patiently allowed me to photograph them for nearly 18 years 

Love Titty and Tracey 


Why a blog about Titty?

I decided a few years ago to give up work and study creative arts. Not because I was wealthy but because I couldn't afford not to.  I was craving a new outlet and I suspect it was a creative one.

I spent 1 year studying textiles, photography, drawing, and other things.   I found that the work I created worked best when I expressed what I was feeling inside.  This wasn't intentional, it just happened.   I've continued to use creativity to do this and this blog is my way of dealing with the cancer diagnosis, surgery, and forthcoming treatment.  

I find it very hard to be present in my body all the time.   I busy myself with external things like work, planning trips with other people, watching films or documentaries, or being in the garden.   This cancer has had the effect of making me stop.  Still.   So I have documented and drawn my way through his up until today and I shall no doubt continue.   I have also made many videos, when I was in shock in the early days after diagnosis.  




Here are some of my sketches and scribblings.  I intend to keep blogging and journaling because my scar may be healing, but I have months of treatment ahead of me and its a way for me to process the shit that goes on in my head.   

I have a great support network of friends and family and Macmillan and the Breast Care Team at Queens Burton.    





The expression of my thoughts/feelings/fears sometimes is just best put on paper or fabric or photographed.     






 












Love Titty and Tracey 

A blast of radiotherapy

I didn't think I would write in this blog again as I just didn't want to write about the cancer anymore.  However, a friend said to ...