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 me yesterday to maybe write again.   So here I am, Wednesday evening almost 7 pm.   I was on my way to bed with my hot water bottle and saw the computer still on so ...... 

Since I last wrote in January, i've had many hospital appointments for blood tests, two scans, chats with consultants and I've started the two lots of medication and monthly injection.   .   

The medication Letrozole has a side effect of making ones joints painful, and they weren't joking when they told me that.   So i'm taking pain killers for that ....which I don't like doing but I am doing it now and i'm just left with discomfort ..... extreme discomfort.   

At one chat with the consultant at Derby, I thought I was going to discuss having the radiotherapy which was supposed to be a "mop up" of anything else lurking.   However, when I arrived, I was asked "have you brought anyone with you".   I knew by that question that something nice wasn't coming.  During the appointment with the consultant I mentioned about the dull ache in my left arm (operation side) and i'd had the feeling before, a few months after surgery but it had gone away.   This time though, it wasn't disappearing and was accompanied by a new lump in my chest near armpit.   I was examined and after coming back from the curtain sat down with consultant.   She said it's possible the lump is the lymph node which she informed me was growing and would need 15 rounds of radiotherapy at a higher dose than normal.  This higher dose could cause nerve damage to my arm.   I got upset as I was expecting to get a schedule of appointments for the "mop up".   I recalled being told during chemo that the growth was shrinking so I was confused but too upset to ask any more questions.  I was offered a cup of tea, which I initially said no it's ok thank you and "are you sure" said the consultant "because I'm having one" and off she shot in her trainers to her brew.   I meanwhile was taken into the crying room awaiting my tea and sympathy in the shape of my radiotherapy nurse Sarah.   

Since that appointment, I have been overwhelmed with more feelings, and my mental health in slowly declining and I've been reluctant to discuss it or ask for help.  My head daily thinks about death, dying, my finances and doing a power of attorney (which i did start doing long before I had cancer.... but never sent it off as it was £80!!, feeling forgotten by people, feeling disconnected from people, feeling disconnected from myself, and I'm eating not great food which I just can't stop.  I keep saying no to going out, going for a short break somewhere.   I have funds for an updated camera, but no interest in getting one or taking photos.  My head is saying "there's no point doing anything".   I don't want to tell people how bad I feel and partly that's because I don't fecking want anyone saying "ooooh just do this" or keep it in the day because I know what would be good for me as I've been practicing it for a good while now.....but I'm in a place where I am struggling to do what's good for me.   I feel like if I don't get some of this shit thinking out of me, don't tell people actually I'm not ok, if I keep disconnected, I won't have the ability to do what I am managing to do which and will just not get up.   I had a few days with mom and Les last week and it's better when I'm around people, but I can still feel disconnected and detached.   

Having a dog for the week was amazing in the way that I had a living breathing thing to look after, feed, toilet, walk, and hug hug hug.    My calendar this month says " EVER LOVED SOMEONE SO MUCH  YOU WOULD DO ANYTHING FOR THEM?".   YEAH, WELL MAKE THT SOMEONE YOURSELF AND DO WHATEVER YOU WANT".   And having Tia stay, wow if I could just treat myself like I treated her (going out looking for belly rubs, flopping at peoples' feet with my legs in the air, being in the moment, only eating 1 healthy meal a day !!).   

I think a lot of people will identify with being able to look after others really well, but when it comes to self it's a lot harder.   I read on a cancer support group yesterday about people who were working through their cancer treatment ...... dear God how could anyone do that other than to distract themselves from what's going on.   But momentarily I thought ooh shit maybe I should have kept working.... but the reality is my body was fucked with the chronic fatigue before cancer arrived and I was already off sick. 

So starting Monday 21st March, I have 15 days of radiotherapy.   monday to friday for 3 weeks.  I'm a bit fearful of it making me feel even worse however I'm assured that tiredness is generally the only side effect and maybe a Red Titty.    E45 is all ready to be applied.     

So, just by typing this post, i'm thinking ok what am I (what can I) do:

tonight, make the hot water bottle and go to bed, listening to a podcast 

tomorrow, get up and have breakfast.   have a shower.   brush my gnashers.  go to a support group meeting on line at 2 pm.   then go for my last session with Zella the shetland pony and see if she can help at all !!!   Breakfast is already made and in the fridge.   Lunch is also done or should i say bought and is ready to open.

Despite feeling how I do, I do know that I have a lot of things to be grateful for like not thinking of a drink to sort me out (because it won't), my warm flat, running water, hot water, hot water bottle, food, bills are paid, support via macmillan and breast cancer now who I can ring without making an appointment, I'm not living in a war zone, I have good friends who will help me (if I ask!),  to name just a few ....   

   

Love Titty and Tracey 

   

Chemo is over ...................living with secondaries and thank yous

I haven't updated the blog since November as I just had to deal with getting through each day, feeling those pesky uncomfortable things called feelings.   One day at a time, whatever came up, I went through it.  There was no where to run.   

So, I had my last chemo a week ago.   I'm struggling now to even write about the last session as I still gag thinking about it.    So I'll just thank God that's over.   

It was 5 months of what felt like living out of a bag, going to stay with friends initially, but then to mom's to recover from said chemo.   So when I got home last week from mom's I unpacked my bag knowing I wouldn't have to be going off anywhere again until I choose to.   And do you know I have no desire to be even going on a little holiday ..... yet.

My cancer journey isn't over though yet and won't ever be.   Although chemo has shrunk what was left after the surgery, it also spread it's wings and journeyed to the bone in my spine where it is apparently awaiting oestrogen to make it active.   I got told this in December and it blew my mind that I was no longer in the curable category, but now in the manageable category.  It felt like a death sentence because we discussed timescales of how long people can live with cancer and manage it.   But all I could hear was it's still in there.   

Just over a month on I had a conversation with another Consultant.   I asked why we couldn't do radiotherapy on the bone cancer and she replied because we don't need to, it's dormant.    I was quite stunned at this as I understood when I was first told in December it had spread that meant it was running rampant around my body.    Also no.   

So off to the Consultant I went yesterday to see how I am going to live with the cancer.   Apparently people are doing it all over the globe.  They even go to work still with it.   For me at the moment there's not a cat in hell's chance of me working.   And that's a relief.   

The plan now to keep the oestrogen away from the cancer is: 

Letrozole tablet daily 

Palbpciclib tablet daily 

(Denosumab) injection once a month - this is for the bones - fabulous side effects include getting painful joint !  

1 blood test per month 

1 scan every 3 months 

I have to say I don't relish the thought of all this, however it's better than planning my funeral.   

Constipation 

One of the joyous side effects of chemo has been a change to bowel function.   Having been a regular on the toilet for many many years and not having any difficulty emptying one's bowel, it's been a bit of a shocker.   I started getting pains on the one side of my head and I've been taking paracetamol for about a month or so.   I even ended up having a head scan just to be sure cancer hadn't taken residency up there.    Alas no, it appears that 5 months of chemo have caused me to have a backlog that I thought Dynarod might be called out to.   After 3 days of laxative and 2 suppositories, movement has been slow.   The reason I share this is because I had no idea how poorly a constipated person can be.   I'd been feeling sick as well and put it down to the chemo so was popping anti sickness tablets which it turns out can also contribute to the bowel changing so I was making it worse !!!   

Anyway, be warned.   Eat your fibre and drink shit loads to keep regular.   Constipation is not something you enjoy.  Apparently it will take about 4 to 6 weeks to get back to normal.   

So i sit here typing this update, and it may well be the last one as I don't know if I want to continue with it.   As you know I've also used my creativity, be that photography, drawing painting textiles, writing to deal with life's opportunities for growth.   But this has been different.  Initially, yes it was a focus for me but I just don't feel the same about continuing to journal about it.   Maybe it's just been too raw and still is.   I've lived it and although I create to inform and impart knowledge about subjects not always talked about openly, I feel the need to retreat now and just start living with the cancer.   Getting a new routine, moving to nearer my family, getting my long talked about dog and who knows what else.   

This last 8th months and the gift of cancer has actually led me to rethink what do I want, how do I want to spend my days and surprisingly some of the things I thought I wanted I actually don't.    

I do know that none of us knows what's going to happen in the next moments, days hours weeks.   We may think we do because we've planned it and we're determined and focused and I'm going to live forever ....   But the reality is at any given moment our lives can change like mine did in June last year.  I said then nothing had changed, but everything had changed.   And it continues to change.  I'm much more living in the day than I've ever been.   I'm more willing to sit through/discomfort, pain, fear rather than escape it.  My default setting will always be avoid pain where possible.  But we grow through pain, and in avoiding it, growth is stunted and we remain in that place of safety, fear and fantasy.  Today I'm in reality. 

I'll end this post just by saying how amazing my interactions with so many people at Queens Hospital Burton has been from diagnosis through to yesterday's consultation.  From the out of hours chemo team reassuring me, to Macmillan who are amazingly supportive in all sorts of ways from equine therapy sessions to just being at the end of the phone, also my local pharmacy, the car parking peeps at the hospital, and of course my friends and family who have gone through this with me and who I have cried with, snapped at (or as my mom put it "you're a bit sensitive at the moment") !!!!!  and spent more time with.   

Love Titty and Tracey 

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 

         

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 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