June 2024 chemo starters

Well done @wjs! Another hurdle jumped! I hope the next couple of weeks are kind :heart:

Thank you @alig1961 and @charley for the information - it’s good to hear your thoughts although it’s sent me back to square one to think again :crazy_face:

@ljlj i had the v shape pillow - I had a mastectomy and I found it really useful to lay on my back - I’ve never slept on my back before and was worried about it - the pillow just snuggled around me and worked - I only used for a few weeks. The little heart shape pillow is great for support and I still use it now. Good luck.

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Well done @wjs another tick for you.

I’m using a V shape pillow, and wrap it around me at night and let my arm rest on it, it stops me rolling over too. My shoulder is more painful than my wound and underarm feels tight. I wasn’t told I needed to wear a bra after either but didn’t have reconstruction. I’ve been wearing pyjama tops and vests/cardigans too.

I’ll have a look at that course for the new year, when hopefully I’ll be into radiotherapy. Maybe if there is one, @collywobbles, we could do it together but you might find one sooner xx

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@jojoh good idea! I’ve booked the next face to face one on March in Southampton- a bit far out in terms of timings for me and could have moved on by then with any luck :crazy_face:. You have to commit to 2 dates.

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Btw I agree the wound wasn’t painful and when I asked the surgeon why my back ached and felt bruised - what had he done to me whilst he was operating - he laughed! But it’s the nerves in your back are all connected to your front - still a bit achey under my arm 6 months later - the sentinel node removal causes that pain :crazy_face:. I’ve got my surgeon review early December.

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@collywobbles I’m having awful nerve pain in my upper arm. Did you have this?

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I read that @pat - it must be horrid. No I didn’t get any real pain - more of a bruised feeling in my back and where the sentinel nerve removed. Sorry Pat. I was lucky and pretty good.

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In hospital :roll_eyes: Yesterday afternoon I developed a high temperature, sweating, extreme shivering and soreness around drain site. Presumed infection so on iv antibiotics. Unbelievable :frowning:

Oh no @pat. Hope you’re okay and start to feel better soon :hugs:

@jojoh Temperature down this morning :grin:

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Good news @pat. Probably one of my worse nightmares tbf!

@jojoh I hope I haven’t frightened you :see_no_evil::pleading_face: Going home this afternoon on oral antibiotics :grin:

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Good news. Hehe no, you haven’t :kissing:

@pat sorry you’re having a few ups and downs with everything. Glad you haven’t had to stay in hospital too long. Hope everything settles down for you soon.x

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@wjs whooo well done for finishing active treatment. I hope you celebrated this weekend, yay. You can join those of us in limbo now, not knowing how to feel about medication and the future!!! It’s an odd time… I so desperately wanted to be at this point a few months ago but now I’m here I’m not sure how I feel!!! :dizzy_face: just take it easy, give myself time… self care… repeat!!!

Oh @pat nitemare but glad it’s under control now … more excuses to treat yourself :two_hearts:

Hope everyone else doing ok. I’ve just got back from seeing my elderly and disabled parents. Seeing them made me determined to enjoy life and try to think positive about my future. None of us know what’s in store for us and with my family history of heart disease and strokes, who knows what might happen!!! Before this I thought I had immense control over everything but I’ve realised I don’t… which in time might be liberating… we really just need to live and enjoy as much as we can.

Anyway… first Letrozole tonight… here’s hoping for nothing happening… ha xx

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Oh god @Pat, what a nightmare. Hope you’re on the mend now? x

Hope you’re home now @pat. Make sure you relax and have people wait on you. Take it easy xx

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Thanks for your good wishes everyone. I’m home on high dose oral antibiotics and feel fine in myself. The district nurse called today to redress it and said it didn’t look too bad, apart from the skin reaction to the dressing put on in hospital :roll_eyes:. There’s still a lot from the drain and its a bit gunky looking :nauseated_face: so she didn’t take it out but hopefully tomorrow :crossed_fingers:t3: Didn’t we say this was a walk in the park compared to chemo :rofl::rofl::rofl:

Hope everyone else is ok xx

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Sorry to hear your challenges @pat - glad you’re home - hope you sheep well and feel a bit better tomorrow.

@donna_51 hope you are ok on your new meds - it’s not too bad for me so far thankfully apart from regulating my system a bit but seems to have calmed than now - recommend taking it same time everyday which I think the instructions say.

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Glad to hear you’re feeling fine in yourself @pat , hope the drain comes out tomorrow.

I have been doing a mindfulness course for the past 4 weeks and to end it the lady read a poem last night which really resonated with me, so I thought I would share with you all;

my brain and
heart divorced

a decade ago

over who was
to blame about
how big of a mess
I have become

eventually,
they couldn’t be
in the same room
with each other

now my head and heart
share custody of me

I stay with my brain
during the week

and my heart
gets me on weekends

they never speak to one another

– instead, they give me
the same note to pass
to each other every week

and their notes they
send to one another always
says the same thing:

“This is all your fault”

on Sundays
my heart complains
about how my
head has let me down
in the past

and on Wednesday
my head lists all
of the times my
heart has screwed
things up for me
in the future

they blame each
other for the
state of my life

there’s been a lot
of yelling – and crying

so,

lately, I’ve been
spending a lot of
time with my gut

who serves as my
unofficial therapist

most nights, I sneak out of the
window in my ribcage

and slide down my spine
and collapse on my
gut’s plush leather chair
that’s always open for me

~ and I just sit sit sit sit
until the sun comes up

last evening,
my gut asked me
if I was having a hard
time being caught
between my heart
and my head

I nodded

I said I didn’t know
if I could live with
either of them anymore

“my heart is always sad about
something that happened yesterday
while my head is always worried
about something that may happen tomorrow,”
I lamented

my gut squeezed my hand

“I just can’t live with
my mistakes of the past
or my anxiety about the future,”
I sighed

my gut smiled and said:

“in that case,
you should
go stay with your
lungs for a while,”

I was confused
– the look on my face gave it away

“if you are exhausted about your heart’s obsession with
the fixed past and your mind’s focus on the uncertain future

your lungs are the perfect place for you

there is no yesterday in your lungs
there is no tomorrow there either

there is only now
there is only inhale
there is only exhale
there is only this moment

there is only breath

and in that breath
you can rest while your
heart and head work
their relationship out.”

this morning,
while my brain
was busy reading
tea leaves

and while my
heart was staring
at old photographs

I packed a little
bag and walked
to the door of
my lungs

before I could even knock
she opened the door
with a smile and as
a gust of air embraced me
she said

“what took you so long?”

~ John Roedel

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Oh @ljlj that is lovely, brought tears to my eyes… soooo soooo true. I am going to try to focus on my lungs now too as my head and heart are all over the place this week! I am exhausted with all the different emotions… when do they calm down a bit!!! I went in and saw my BCN to get my prothesis fitted (looks ok!) and it was the same message… take time, self care, acknowledge what I’ve been through etc… etc… be nice and kind to myself… arrghhhhh… easier said than done in practice!

How’s everyone doing? Anyone else at the ‘end’ … moving on? Happy Wednesday team xx

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