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 

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 

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 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 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 

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 

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 

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 

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 

9th August - Dressing is off and Titty is free

I had an appointment to have my dressing removed early Monday morning before I went off on for a short break with family to Wales which was planned just shortly before I found the lump.   

Janice and Beastie came to pick me up.

The big reveal occurred but I could't see the scar and I wasn't offered a mirror to look.   All I wanted was to get the dressing off and know it was healing as it should and get off to Wales.  I think having the holiday to look forward was a distraction of what had happened.   

I returned home, and Janice helped me get my bags together, and we had a brew before sista was due.  And then I waited.... and waited.... and eventually they arrived.    4 sets of teenage feet jumped out of the hire van as it was toilet stop before heading off.   Hugs (gentle ones) and they shot up the stairs to wait in line for the loo.   I adore these boys of mine.  

My luggage was carried down the stairs and we locked up and headed off to Wales. 

Love Titty and Tracey 

Day 2 to 7 after recovery : flowers, flowers, afternoon tea and mommy - 29th July to 5th August

It was amazing to have my mom staying and looking after me.    She washed me, cooked, cleaned, squashed Titty on two occasions when hugging me whilst I was crying.  We laughed, we watched The Crown night after night, we started to irritate each other by day 6 or 7, but I didn't want her to leave.  

She took delivery of the flowers that arrived from my lovely neighbour Heather n Bob, my half sisters Carole and Ange and she almost gave away an afternoon tea from Langans that was the driver was trying to deliver !!   It wasn't her fault though.   The drive was saying delivery for Amanda.  I shouted down no there's no Amanda I know of in the flats around me.   He went back to his delivery van, and he was making a phone call.  I had a small feeling that the delivery might be for me so I ventured down stairs very slowly.   My landline started ringing, but my mom couldn't answer it and then the mobile.   I opened the door whilst the delivery man was actually talking to the person sending the afternoon tea .... he was saying "there's a woman with short hair at the door now".... !!!! It was funny.   It turned out Amanda aka my friend Mand, had ordered an afternoon tea for 2, and she'd asked them to put to Tracey from Mand but they'd written Amanda on each bag !!!  

I felt spoilt and loved.    

Love Titty and Tracey 

Recovery on the ward - 27th and 28th July

I came to on the ward and I was being asked would you like a tuna sandwich and a cup of tea.   I woffed them down and it was soo nice.   

I was in a small ward of 4 beds, with the nursing desk next to my bed.   I had an oxygen tube on my nose and and bottle containing my blood laying on the bed.   

I recall asking to go to the toilet and a bed pan being provided.  I was asked to roll to my side so the bed pan could go under my bum when I rolled back.   I'd put many bed pans under many bottoms as a carer, but this was a first to be on the receiving end.  During one bed pan event, it was positioned correctly and I was quietly told the lovely lady "Ive set myself".   She didn't bat an eyelid.  Instead she swiftly changed my bed sheet without me having to move off the bed.   This is something I too have done in the past and I have to say, I wasn't anywhere near as efficient as the lady doing it for me that day.     

I dozed on and off all night, waking every hour for the first few hours for observations which consisted of temperature being taken and blood pressure., and also after that for a wee.  I managed to walk to the toilet before the night was out which was good as it made me feel I was ok because I could carry out that task! 

 The drain 

I was told I would have a drain in when I came out of surgery.   This was because I'd had lymph nodes removed.  

I actually imagined a huge tube coming out of titty but it wasn't like that.  There was a tube but it was inside my chest wall and had been stitched in place so it wouldn't come out.  It felt a tad uncomfortable and many times I forgot it was there and moved and then felt it.  I was obcessed about it coming out as well.   Alas it didn't.  I mentioned it to the nurse and she "oh it won't come out it's this big (approx 8 cm !!!  I imagined it hanging by a thread .... there was thread involved as the surgeons has stitched it in place but it would have to have a massive tug to come out accidentally.  

Through the night I unhooked the bottle from the bed, carried it to the toilet and sat it on the chair next to me on the loo.  The bottle didn't fill by much, about 50mls whilst I was in hospital.   Even when I got home it didn't go over 50mls after 3 days.  

Weirdly, when I was sat looking at the rube one day, I saw a little clot and it was the same shape as the lump of cancer I'd seen on the ultrasound screen. 

The drain did it's own thing - the green button on it (shown below) is doing the work (apparently).  If that pops up then it's no longer working.    

One of the nurses gave me a cable tie so I could keep it in one place on the bed which was very helpful.   
.    

I had a dressing from my armpit, covering the side of Titty.   A cling filmed nipple looking as though it was peering out of a window!.   The dressing was blue and there was dried blood under armpit section. 

Snacks 

Because of my blood sugar and hypo history, I planned ahead and took relevant snacks in with me including a protein shake for Wednesday morning, nuts, banana and something sweet.   These were munched throughout the night, slowly which was a good idea as breakfast was cardboard masquerading as toast! 

I sent videos to people at 2 am in the morning .... and I recorded the snoring of my fellow patients, little realising that I too was probably snoring (my nephews informed me of this two weeks later when we were staying in a caravan).   I sent messages on Whatspp that didn't make a lot of sense.  Every hour that I visited the loo I was awake again for a while ... it actually felt like i'd not slept at all but I don't think this was the case.  

Love Titty and Tracey 

 

 

 

27th July 2021 - "operation titty" - and a spiritual experience

Please report to the EA lounge  (elective admissions)…this is what the letter said.   The word lounge led me think this to be like an airport lounge with lots of people in gowns all waiting for their surgery!   It wasn’t like that though.  

Janice and Beastie collected me and she dropped me off at the quick drop off.  I didn't ask her to come in with me.   I just say bye and hopped out.   I made my way to the lounge.  I had to press the buzzer to announce my arrival, and I was greeted by a lovely welcoming lady who took me into her office and went through questions with me.   What was I having done?, When did I last eat/drink?     She also put my “bracelet” on.   These questions were repeated many times during the next hour by different medical staff.            

I was then handed over to another angel called Eloise.   She took me to my cubicle which was a corner cubicle with a large blue leather armchair, and a couple of cupboards.    She came back with two huge, long gowns, some deep blue support stockings, and some slipper socks.  I asked where the toilet was as I knew I’d be needing it many times.     I was told I was the only surgery that afternoon so I would be going in at 2 pm.  Shit that meant only an hour to go by this time.   Originally, I was told I was last that day, and was imagining waiting hours for a 4 or 5 pm slot so news that it was earlier was good.   

I had many visitors to my cubicle starting with a Consultant who would be operating with Mrs Carmichael.  After confirming my name and DOB he asked questions like what did I think I was having done, when did I last eat or drink, any allergies.  He also asked if he could draw on me !!   He marked my left shoulder area and went off.   

He was then followed by the anesthetist who pretty much went through the same questions.   I advised him I had reactive hypoglycemia, to which I felt he didn’t really think was important, so when he finished his questions, I asked if my blood sugar would be checked.  He replied they don’t routinely do it, and then said who told you that you have reactive hypos to which I replied the endocrine consultant at Royal Derby.   I felt I needed reassurance as I hadn’t eaten since 5 am that day and I had visions of all my organs shutting down because of low blood sugar during the surgery and dying that way rather than from cancer!!!

The anesthetist's colleague then visited, asking all the same questions.  He was lovely, young and had a human manner about him.   He gave me reassurance about the blood sugar.   

Mrs Carmichael was the last but one person to see me.   She arrived in civilian clothing, a huge bag on her shoulder.   She asked if I could drop my gown so she could make her mark!!   I thought ooh I've got no pants on which didn't bother me but might I thought bother her (!!!).   She wasn't bothered.  She inked titty and surrounding areas including armpit, and mid chest areas.   

My parting words were “I’ll see you in there” to which she replied “I hope not, if you do see me we’re in trouble”.    We laughed.  

I put on my pink headphones and listened to a guided meditation.   The next thing I knew there were two heads popping round the door and it was time to go.   I switched off the headphones, disconnected the blue tooth and asked Eloise do I need to bring my things.   She said she would bring them and I was taken off with speedy Mel towards theatre.  Mel was a fast walker and he realised I was a bit behind and he joked about going fast!  

I arrived in a room that was quite cool and had 2 people in it, one female, one male. It wasn't a huge room and I thought it was where they'd put me out and I'd be wheeled in somewhere else.   Alas no, I was in the theatre.   It had huge spot lights and gradually more and more people.   

I had to take the gown off that was covering my bum, and then put the one with the back opening back on and they would take it off when surgery started.  I lay The anesthetist started tinkering with my right arm and Mel was also there.    Then anesthetist colleague was on my left side putting pads on my head which would apparently monitor my brain activity.   I lay there, quite calm as the team got me ready.  There was only one woman in the room at this point.  We exchanged a few words and then I felt myself reaching out my hand for someone to hold it.  I momentarily pulled it back down because I thought ooh I can't do that, but it was taken by this lady and reassuringly squeezed.   Her hands felt really tiny but that's what I focused on until I under.   I saw a mask looming down over me and that's the last thing I remember until waking up on the ward being offered a tuna sandwich and a cup of tea.  

Laying on that couch was an experience I'll never forget.  I had a calmness about me and I describe it as feeling like I was being carried or held by friends and a power bigger than me.  I trusted totally the team around me.  I let go and let the surgical team do their thing.

 

Love Titty and Tracey 

5th - 9th August- I'm alone again !

Mom left on the 5th July in a taxi to Lichfield, to catch a train and then a bus.  

My step dad was eagerly awaiting her return.  They frequently shout at each other in their way, no an abusive or threatening way, just probably getting on each others bits.   The night  after mom arrived she rang him and he was missing her he said, even the nagging!!    He met her at the station and at home, he'd gotten a card, written lovely words.   I know she was glad to be home aswell.  

I was alone then for the first time since the operation.   I was ok to be alone.  But I didn't want to be alone in one way, but I did in another.  I'd loved having mom here.   I've said I'm quite happy living alone, but this has made me realise I would love to live with other people (humans or dogs).  I don't want to be alone.  

Love Titty and Tracey 

Janice leaves and mommy arrives (and Nephew No 4 !!) - 29th July

 Janice was leaving to go to Barefoot Festival.   She departed and I eagerly waited my family's arrival.  Janice left the door unlocked, so the nurse could let herself in incase I was asleep.   As usual my sista was late and when they did arrive, I was dozing.  Nephew No 4 arrived aswell, and the bus driver (my sister's fiance!).    I got up when they arrived.   I was conscious of Mitchell not being frightened by what he saw !!!  But I think he felt so car sick he wasn't disturbed by what he saw.   I remember when mom had her hysterectomy and I went to visit her as a woman in my 20/30s.   It really upset me to see after her operation because I'd never seen her like that so I wanted to try to ease any concerns.   

The first bunch of flowers arrived with the family, along with food that filled up the fridge and frozen home cooked meals from sista including cola chicken.   No one wanted tea, they just wanted to get back as was quite in afternoon and lets face it, I wasn't going to be up for sitting chatting for hours.    

Sista, Nephew No 4 and bus driver all left and me and mommy were alone.   I felt like a little girl being looked after.   I returned to bed shortly after to sleep some more and the sleeping went on like this for the whole time mom was here.   

I did get up, have a wash and we did walk around the block but it was hard work.    One day I even went to the shop walking down to get the bus, the bus didn't stop so we carried on walking.   This wasn't my best idea and I thought I was going to collapse in the co-op.   We made it home just about.  Really, I could've rung a friend and asked them to take mom down the shop, but I don't like asking for help.   As the weeks have gone on though, I have had to ask for help especially now i'm on my own again.  

me and mommy munching on a chocolate concrete made by Bgee No 2 nephew

Love Titty and Tracey 

Discharge from hospital 28th July 2021

The consultant came to see me very early and asked how I was doing.   He had a little look at Titty and he was happy for me to be discharged.   He reminded me about doing the physio, but gently at first.   

I thought I'd be out in no time.  Alas no, there were procedures to follow, other patients to discharge and lots of other tasks to do.   I was asked what I wanted for lunch and I said i'm going home.  It was suggested I order lunch as I might be waiting a while .... !!!   And I ate lunch later that day a delicious beef stew.   I was chomping at the bit to leave as I wanted my own bed.  

I eventually left around 3.30 pm ish and Janice and Beastie came to pick me up.   We walked out to the car park to find Beastie and had the slight challenge of climbing into him as I couldn't use my left arm to pull me up.    

I'd put some money aside to get fish and chips off the chippie van which came round on Wednesdays.   I listening for the horn beeping but that day, there was no beeping.   We were in a quandary... what shall we have?   We debated for sooo long.  In the end we opted for chip shop and Janice drove to the village.  I devoured a chicken burger and chips.   

I remember going to bed at some point after food.   Janice lay down beside me and we were watching some shite on our phones (it was a selling site with a live auction of ladies clothes!!!).   I did take some tablets and whilst lying in bed I commented to Janice that I felt like I was floating!!  I didn't take any more of them.   I stuck to paracetamol.    After the selling site finished, Janice departed my bed and set up camp in the living room on the settee.   

Having her there and not being alone I think I slept better.   I slept heavy, probably making up for the weeks of insomnia.    

When I got up to go the loo, I held Titty as if she were going to fall off!!   Infact I walked around like that for a while.   Protecting her maybe as she is precious and needs to be treated with love and gentleness. 

Love Titty and Tracey 

Walkies whilst waiting .....

July was the month for the operation and my little sista turning 40.   The latter came first.   She had a night of camping in Gloucestershire planned and I was staying with the boys whilst she was away.  Usually when I stay, I love to take them out somewhere but this weekend was soooooo damn hot and I had little energy even for the walkies.   I took Nephew No 3 to his first footie practice and that was it.   

We did play Monopoly for a few hours, but even doing that I was devoid of energy, so I used that energy to laugh.   And laugh we did.   We laugh at my stupid financial decisions buying properties that won't generate much income, when we land on a property but the person whose turn it is isn't paying attention and no-one says anything until the next player is on and then we point out they could've made some money there, just sheer sillyness and love and joy and tears of laughter.    

13th July we went out for a meal for sista's birthday.   I couldn't eat all my food.  My appetite had changed for the better in that I didn't want to gorge my food.   

The walking was the focus of my day.   It's all I could really, that and get up, prepare food, wash up, wash myself which didn't happen every day, and try to sleep.   My sleep was pretty bad.  I'd go to bed tired, but as soon as my head hit the pillow my eyes pinged open.   I went through a whole week of not being able to sleep until 4.30 in the morning when the sun was start to come up.   It was also like if  see day light I'm safe.    

Love Titty and Tracey