@naughty_boob - anniversaries are hard arent they ? Im dreading the anniversary of my diagnosis … let the tears flow … its cathartic and healing xx
With regard to your post on THAT thread - I had no issue with anything you said , don’t question your role ever … sadly there will always be people who will take issue with you occasionally, no matter what you say or do xx
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@mrsjelly I love your steroid ramblings. I designed a board game whilst on chemo. Wrote my ideas in a book, they become less and less coherent as the steroids kicked in ending up with a series of small squiggly shapes. The board game does now exist in prototype form (sounds very posh, it’s mainly made of cardboard!!!) and has been played by my family. No idea what to do with it now.
@@naughty_boob I’m sorry to hear you doubting your role. The joy of this group for me is that we all have different opinions and ways of expressing ourselves. Whether I agree or disagree, it is always valuable to hear others’ thoughts and ideas and I have never felt any judgement.
So with lots of treatment behind me and 3 Phesgos to go (assuming my heart doesn’t deteriorate further), I am having a wobble. I convinced myself that my hideous night sweats were more sinister than tamoxifen side effects which has been a most unhelpful train of thought. I’ve also had a few episodes of dissociation where I pretty much shut off from life when various triggers come up. My most dramatic one was in a recent job interview where I had a very detailed flashback to my first chemo session and then have no recollection of the next 3 hours (apparently I completed the interview badly then went home) until I was sitting at home on the sofa. I have been reassured by the lovely NHS counsellors that all responses are normal (not the right word but hopefully you know what I mean) and they are going to help me through it. First time I’ve really shared that I’m not quite managing right now but this is a safe space.
Gosh I’ve never written so much. I will have to go now as my 17yo and 15yo can be heard discussing how much chicken, bacon and eggs to cook for their pre bedtime snack. If I don’t intervene we’ll have nothing left for this week’s dinners.
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So sorry you’re feeling so wobbly. Its a horrible feeling when you are in it. I’ve got some weird physical things going on and i just dont know if its menopause or the Kadcyla. So i was wondering if your sweats and anxiety are a hormonal thing too? Ive had to switch to decaf tea and coffee or I’ll flush. Our local cancer care group has advertised an hours zoom course by a cancer menopause specialist at the end of April. Its Dani Binnington, founder of Menopause and Cancer. I’ll report back. I did laugh at you having to go and save the dinners. Half of me admires them eating real food instead of fast food but if they had to work to buy it and plan and shop for said food they wouldn’t be so cavalier in their snack attacks. My 17 yr old is the same, you never know when to expect the aftermath of an eleborate snack prep left across many counters! Can’t complain because she cooks dinner regularly and always checks where my digestion is at before, bless her.
So can we have a competition for weirdest side effect? For the 2nd time of being rundown, I’ve got an infection in my belly button! The embarrassment of having to explain in a curtained cubicle to a 16 yr old doctor that it was itchy and weepy for him to stick his gloved finger in and sniff to check if was smelly! Back on poking the cream in with a cotton bud. So random that even there can get out of sorts through treatment. Sigh…
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@pennyp - I’m sorry you are wobbly but I know what you mean , I have two Herceptin left (they are stopping me at 9 ) and I’m starting to feel panicky … it’s crazy that during chemo I felt chilled and didn’t care about much bad just getting through … it was a blessing in disguise for my overactive imagination …
the sensation you describe is a normal (but admittedly alarming feeling ) to trauma , n a way it’s a form of panic attack , but the brain deals with it by “removing you “ from the saturation so that everything can feel like a dream and not real …
Did you do the moving forward course ?
@naughty_boob Sending one of my biggest hugs possible your way. I’m sorry that the anniversary has brought up some emotion but not surprising. Please don’t ever think you should quit your role as Community Champion because you are excellent at it. You were one of the first people who came to my aid and we messaged almost daily to begin with. You didn’t have to do that but you did. You helped me through the very darkest days and you have a gift for sifting through a post and pointing people in the right direction. For every person who objects to something you say, I will find you 100 who benefit from something you say. I think you are pretty awesome, my friend.
@norts I love that you designed a whole board game on steroids! Surely there must be somewhere that you can submit new board game ideas? Sorry to hear that you’ve been having a wobble of late and I’m glad you’ve told us. That’s why we are all here, primarily. My feeling on it is that it’s trauma and therefore some kind of PTSD. I’m really glad you have spoken to the NHS counsellors about it because I think it needs processing. I was offered 12 sessions of counselling from BUPA and took the lot. Much as I love you all, it is the club that we never asked to join and it happens so suddenly. One minute life is just fine and you think a slow driver in front is something to get in a stress about, the next minute you are finding out you have breast cancer and then you REALLY have something to stress about. Life is turned upside down and then we come to the end of treatment and we expect ourselves to just carry on as before, except that nothing is quite as it was before. I’m so glad that the counsellors have said they will help you through it. I was given various methods to employ if panic takes hold so I used them at the time and wrote them all down for future use. Thank you for sharing this with us. It helps other people to know that it is normal.
@jayveebee That cancer menopause course sounds really interesting. That would be great if you could report back. I like the weirdest side effect competition! I am still suffering from scabby nostrils but I think an infected belly button pips them!
I have end of term Musical Theatre karaoke tonight and then I have the pub quiz that my husband entered us for so that we can publicly discover how bright we are in comparison to all our friends and neighbours!!
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Well I certainly appreciate you. Always been ready with words of support in my time of need. You can never please everyone x
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It’s a good day today, I just had round 9 of Kadcyla so we’re down to being able to count the number of treatments left on one hand! 
Also I just booked a holiday in Cornwall in a couple of weeks. I am so looking forward to having a week off and just enjoy time with the husband and pup. My brain needs a break. 
I first looked at booking this trip in May 2020 and we’re finally getting there 5 years later!
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@kartoffel congratulations on number 9! I’m having number 10 tomorrow and then it will be down to single figures 
well done on booking a holiday- well deserved by now xx
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Thank you all for your support.
Have just had my third Zometa/Zoledeonic Acid earlier today and the side effects are starting to kick in. So much so when I read @salbert ‘s comment I started to cry. I always seem to feel sorry for myself for a few days after as I have horrible flu like symptoms. Any way I bought Lemon Drizzle cake from Waitrose that has no calories and will make me feel better 
I know deep down I am making a difference and being invited to talk to the two new Community Champions training session was humbling, but we are all human and have had a cancer diagnosis which can make us feel vulnerable at times.
I knew this fabulous group of people would lift me up.
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Hi @arty1 i think your comments are lovely, but should be directed @norts. Sorry. Btw. I did do Moving Forward course and found it useful, if only to learn that any reaction to the trauma we’ve been through is ‘normal’, it takes people in different ways, but some sort of physical, emotional and psychological reaction is to be expected.
Penny
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You were so good at our Community Champion training @naughty_boob 
and hope your ZA side effects go quickly. I have that joy tomorrow along with Kadcyla 10 xx
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Had my radiotherapy planning meeting yesterday, luckily didn’t need tattoos (it’s SGRT and I’ve been practicing the breathing techniques which they said I did well). So relieved, I would’ve had them if absolutely necessary but I REALLY didn’t want the tattoos (already hate my weird excess skin flap thing, don’t want any more reminders of this stuff, I can tolerate flat scars). I’ve been extremely lucky and got a female team and they were lovely, not sure if guaranteed to always have them but I’m not going to count on it in case something happens (need to prepare mentally). I found the pulling me around into position and lining everything up was easier once I resigned myself to just going totally floppy and limp (easier said than done, it’s all very tense). Feeling more confident I can do this. Had a ‘lovely’ topless photoshoot for my surgeon today and now I get a week of nothing, hopefully feel okay during it.
My new central port is still achy, very bruised and disturbing my sleep but I bruise easily (wish I’d had it fitted last year, probably would have made chemo easier and maybe saved my veins) and my first Kadcyla went well on Tuesday (much easier than my other chemos). Actually chatted with another patient the whole way through, a new experience for me (all my other chemos everyone kept to themselves). It was her first chemo so I got to share some knowledge and give some advice and she’s started radiotherapy already and got to give me some tips too.
Sadly our family cat died on Monday (13 years old and natural causes but still, we had him from him being weeks old), the morning of my port being fitted so it still feels like a sh*tty week but I’m trying to focus on some good things happening for balance. My own cat now is being spoiled as a result. I am exhausted, start radiotherapy on the 16th.
Meeting up with family at the weekend (if I don’t get side effects) and heading into Liverpool for the day. They have a really cute dog who does lethal farts so should be an interesting day 
.
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@arty no problem. Thanks.
@sez sorry to hear about your cat, its awful when a family pet dies. Extra neck scratches for your cat. Good luck with radiotherapy.
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First chemotherapy under my belt yesterday. It went well and so far I’m just feeling a bit nauseous, with a humdinger of a headache. I hope I don’t experience too many side effects, time will tell. Next chemo in 3 weeks. I’m finally on the road.
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@lilyanne well done for getting your first one done. You will be amazed how quickly the time passes when you lead your life in three week blocks. Take each day as it comes and do lean on this group for support or reassurance if you need it.
Also there will be an April Chemo starts group so make sure to jump on that too
Hope your headache clears soon and be kind to yourself 
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@lilyanne we done for getting that first chemo out if the way … fingers crossed side effects are minimal but do ring your triage line if you are worried about anything x
I’m currently sat in the treatment chair waiting to be hooked up to my herceptin infusion , I’ll be here until six … what a great way to spend my second wedding anniversary 
we did go out for a lovely meal last night though , first night out since last summer !
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