Thanks☺️ my percentages are slightly different for that too but I see what you mean… I’m pretty positive in terms of stuff and the way I see it I can also influence things with my lifestyle slightly (and I’ve come to the conclusion that what’s going to happen will happen so I’m not stressing about it too much) but I was more using it as an example of how you could look at it either way and how it might be difficult seeing your own numbers etc as it can be a big decision to ask for the figures/look them up
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Hey everyone!
Had 5th Chemo on Thursday (2nd Docetaxel) at 10% lower dose. Boo! No reaction but I’m an idiot and I forgot to do my Pegfilgrastim yesterday and only remembered this morning, 12 hours late!. So worried I’ve screwed up and will end up neutropenic again.
It’s been a stressful week with kids exams and some kids trying to steal my son’s phone at school and I’ve totally not set myself up for success with this cycle. Feel frazzled on Day 3!
I hope everyone else is doing okay this week. Haven’t had a chance to catch up on messages and I forget each persons tag within 2 seconds of meaning to reply as my brain has basically been replaced by a watery soup of nothingness.
We already had 2 weeks in Estepona, Spain, booked for Aug 2-16th and I finish chemo on July 4th. We’ve been told to go ahead with it from Day 1 as we had a 4.5 week tolerance for any delays with chemo. I was insured anyway if we needed to cancel as it was booked pre-C.
Looks like we should be fine to go and then I start radiotherapy 2 days after we get back after a 6 week break to recover from chemo. They said 4-6 weeks is what they aim for to recover from chemo so it’s on track at least.
@altoan I was told 3 weeks too for radiotherapy. It seems that’s pretty standard from what I understand. They used to do 6 weeks standard but the methods have improved.
Have a meeting on Monday night with a gynae about removing my ovaries rather than using Zoladex for Ovarian suppression.
Read a massive study last night and the ovarian suppression doesn’t actually do a huge amount for prognosis. Tamoxifen/Letrozole are the winners there. They’re what has transformed recurrence rates. I just would rather be on one drug and know that it’s just Tamoxifen causing side affects and not need to rest from drugs to figure out whether it’s ovary suppression drugs or Tamoxifen. I need to understand the increase in risks of bone density issues and heart risk of permanent suppression to make the decision. My best friend’s Dad trained this gynae so I know I can trust him to do right by me. There aren’t any decent studies on permanent suppression vs. temporary suppression so it’s hard to know what to do.
I’ve always been scared of bell ringing at end of chemo and am relieved to know that my hospital won’t allow it. They said it’s not fair to have someone ringing a bell on a ward where some people will never ring a bell because they’re Stage 4. I’ve never felt so relieved in my life as the bell ringing felt like tempting fate to me and there wouldn’t be enough wood in the world for me to touch to counter that! Am I alone in hating the bell ringing bit?
Anyhooooo, steroids on a taper so hoping to feel a little more human in a few days. It really is the worst bit I think. I’m sure I’ll correct that tomorrow once the bone pain ramps up.
Oh and icy feet things seem to have helped. I thought I had frostbite from them but I’ve got no peripheral neuropathy pains from this Docetaxel so would recommend trying them as it’s a big help to not have that pain this time!
Sx
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I felt overwhelmed about the lifestyle choices at first but now I’ve come to the same conclusion. After ovaries, fat cells are the main producer of oestrogen. Apparently weight training can reduce recurrence by up to 50% which is insane.
It’s surprising how much control we can exert on this with no alcohol (although I only drink maybe twice a year) and fitness and food and I think I’m starting to feel more empowered rather that pressurised by that. Certainly starting to maybe swing that way a bit anyway. It probably depends on how tired I feel as to how optimistic I feel about exercising lots. The steroids probably make me feel capable today and I’ll feel totally different in a few days! 
All we can do is take it one day at a time, try not to go backwards and call it a good day if we take one step forwards. Otherwise we’ll drown if we set a mountain to climb. We’re all legends to have got this far. We’ve stood on the shores with wave after wave and the occasional tsunami hitting us for months on end, with no other option than to keep trying to stand up again. Worse than that, we have to prove we can stand every three weeks so that they can hit us with another wave. It’s the ultimate test of our resolve and our families will never know how much we love them because sometimes we don’t even want it for ourselves so it’s all for them.
All we ever wanted was clear CT scans. Any of us with that already have what we wanted. Now’s not the time to get greedy by demanding more of ourselves. Even if we have to stand still for a while before we step forwards again, that’s good enough. This is hopefully the hardest thing we’ll ever do and boy has it been gut wrenchingly hard.
I loved that Kate Middleton said she has had to learn to be patient with uncertainty. She didn’t reassure people. She was so honest.
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@swk1981 so pleased your 5th treatment went without any hitches. Only one more to go that’s great news and you can focus on your holiday too x
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Thanks. Kicking myself that I’ve worried about being bald and missing a boob on holiday. I can tell I’ve mourned the hair and boob better than I thought as I think I’ll be okay. I’ve stopped pretending I’m all brave to the kids and I vocalise when I’m struggling with it but balance it with “I’ll get there, I just need to be kind to myself!” I think that’s better than faking it. Who knows?
I’ve sorted a bikini that works for me and I’ve had to change all the types of tops as I’ve always been slimmer top half and dressed to accentuate small boobs and slim waist. Everything’s had to become a bit higher cut to hide the missing cleavage. I’ll figure it out somehow to not feel so self-conscious. My god, I kick myself for not loving last year’s body though. What an idiot!
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@swk1981, you’ve summed it up amazingly. I had a conversation earlier with my husband and said the hardest part of this for me is starting to feel a little better after a few weeks to be knocked down again with another cycle. It takes some strength to do this and we all really have.
I’ve said if I can keep on top of my mental health going through this I’ll manage the physical side one way or another. It’s not an easy ride for any of us but we’re all doing amazing.
If anything I take away from this is, if possible take it one step at a time. I know this can be very hard as I’m guilty for looking far ahead for when this is all over.
I’ve stopped worrying what I could’ve or should do to prevent this as sometimes I think it’s the luck of the draw.
2 months ago my sister passed with a massive coronary, no signs, symptoms, family history or anything. She was worried about my diagnosis and how I was coping and little did we ever imagine this would happen.
I’m not saying this to alarm anyone but I think I’ve just got to the stage that it dosent have to be cancer that can harm us.
Going forward my attitude is to live my life as happy and healthy as I possibly can without beating myself up, breast cancer has already done that.
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100%. I’m so very sorry about your sister. You have been hit so hard by 2024. More than any one person should be able to withstand. You’re amazing!
One step at a time is all we can do. Cancer has given us some nuggets of wisdom and a clarity and I think the hardest bit is to remember them and keep the perspective we’ve been gifted and not to return to previous mindsets that take things for granted.
I suspect recovering from 2024 may take all of 2025 and involve itty bitty baby steps but we’ll get there somehow and probably not in a straight line. X
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I think being kind to ourselves is often hard! I know I always put pressure on myself to seem upbeat and happy all the time so not to worry anyone. The trouble is after a while the mask that we often hide behinds slips as it’s just not possible to maintain it!
Yes we need to try and find balance and try and just take every day and enjoy it for what it is.
I’ve had a week of feeling sorry for myself and just haven’t been able to shake it. My chemo doesn’t finish until 22nd August and it just feels like such a long way away!
Yesterday I shoved a bright blue sequin turban, put make up on and met a friend for coffee. I actually felt so much better just getting out and about.
I think that both @swk1981 and @pollyanna1 said that it is a journey we are going through and we will get through we just have to be kind to ourselves and not expect our lives to run at 100 miles an hour like before, our lives have now changed but that doesn’t mean that the changes that we make moving forward won’t be positive ones.
Wow I am rambling!
Happy weekend to everyone.
Josh has 3 ALevels left and finishes next Friday so I can’t wait for that. All we need now is a tiny bit of sunshine 
Helen x
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Loved reading all your messages just now, it’s just so nice to hear people expressing their thoughts that are do similar to mine but I struggle to sometimes get them out, such good analysis so thank you all,
My second docetaxel went ok yesterday, my steroid misunderstanding was fine, picc line struggled to play ball but did eventually and luckily slept reasonably well last night and feeling tired but ok today, they’ve decided to still send me for a brain scan so that’s all booked in for next Saturday.
My son has come home for the weekend for Father’s Day and my birthday tomorrow so that’s a lovely treat, the three children and their dad are off out for a lovely lunch tomorrow but I’ve decided not to go after my ordeal after my last treatment, but I think it will be lovely for them to have time with their dad without me fussing over them or them fussing over me and I’m intending on having a lovely rest whilst they are out, hope everyone has a healthy, drama free, happy weekend 🩷
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@swk1981 im going to ask again about going away between chemo and radio as it seems ideal to me, it’s what I originally thought they might say would be perfect timing and with it coinciding with the school holidays it would be perfect, I will look at insurance for the in between stage first though as I’ve done my quotes so far for treatment being finished and hormone treatment ongoing,
I’ve also researched a little t regarding ovaries being removed but no one at the hospital has mentioned it to me, it’s something I’m going to ask about at my next appointment as in my opinion I don’t need them anymore and i feel the less medication I can take going forwards the better, but I will see what they say xx
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I’m just exhausted with everything today. Sick of being upbeat, and everyone saying how strong I am, and how well I’m coping. And yes I am on the whole, but I’m worn out and sick of this journey. I just want it all to end, the whole journey just seems endless. And no idea of post chemo- end of July- so can’t plan anything. All I’m doing is cancelling stuff. Well that’s my moan over - I will get off the sofa tomorrow, and may even attempt another half marathon. Though if the weather is similar to today I’ll need to be a duck!!
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Oh @gromit12 you’re our toughy of the group. You’ve done so well so let yourself fall. You totally deserve a pity party!
Sorry you’re going through a slump.
I found the lack of clarity of next steps as we reach the end of chemo a bit too much to bear and so bullied them all into a timetable.
You do make me chuckle. My idea of setting a challenge is walking to the end of the driveway (admittedly it is 500m). You go and set yourself a half marathon. Nutter! 
@elle16 I’ll let you know what the gynae says. I have a couple of people in family who had older aged BC/Ovarian cancer which helps me have a case for it. My genetic testing won’t be back for three months (they sent it on Thurs) and that would automatically entitle me to it.
Because I’m private it looks like they’ll do whatever my consultant says though if he deems it to be better medically for me which may make my rules a little different. I seem to recall you having private healthcare which may help you later on. Also, check on your insurance. Mine has a clause that pays me if I choose to use NHS over private. It actually pays out a LOT for doing that so check your fine print as I would have been paid thousands for it!
Have doctors given any reasons for saying no holidays yet? Is that in case of chemo delay? Surely you’re out of that given you’ve only got the last one to go?
@hc1973 the second half goes faster. I remember July 4th always feeling like miles away and it’s scary now how fast it’s come and the “WHAT NEXT?” snuck up on me, hence my consultant bullying this week to get ducks in a row. I wish I’d done it earlier. Xxx
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@gromit12 i was just talking to my friend about this being strong/brave nonsense this morning. What happens if we can’t be strong or brave for a while. We will still get the treatment, we will still feel rubbish and we will still be the people we are. Sit back and watch for a while, no one can be that warrior all the time. Recharge and reset, tomorrow (or even next Friday) is another day when you will be feeling better. We are entitled to own our emotions and sometimes they aren’t positive ones, just for a while. Take care and I hope you feel good soon.
@swk1981 @elle16 i wonder if it’s another example of telling us stuff when they judge the time is right. I mentioned going away for the week to my Nurse a few weeks ago and she didn’t raise any concerns as long as it doesn’t interfere with treatment. I’d agree that in between chemo and whatever is next seems perfect!
So I’m venturing out again tonight, have had a two hour sleep in preparation 
and am hoping that my running buddies will be kinder and more supportive than the people last week.
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Well done @altoan
I’ve found my Oncology Lead (nurse) to be more protective of me and dissuade me from things like the Take That concert whereas my Oncology consultant is more like “Go for it!” All have been massively encouraging of the holiday though but my Oncologist is giving me blood thinners for the flight (although her husband died of DVT when her boys were in junior school and I remember it happening after a flight so I suspect this makes her extra cautious!).
X
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@hc1973 I’m close to you finishing wise for chemo as mines is 20th August so we’ll both still be getting it for a bit…. And I know what you mean about it seeming far away. I can’t believe it’s mid June already though so hopefully it passes by quickly!
Just seen all the messages and hard to reply to them all. @elle16 i hope you have a lovely birthday!
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Thank you belle, i do think time has gone really quickly considering that I feel like my world has been tuned upside down in the last 6 months , I think it’s because the times I’m really poorly my brain blocks it out once It’s passed,
@gromit12 you are incredible, you are allowed to feel down, it gets on my nerves too when people say how well I’m doing and look when I know I look awful and feel like crap 
, if you are up for your marathon then ho do and best of luck 
@swk1981 thanks again for the information regarding my medical insurance, I haven’t even informed them about it so I will try and ring them next week, the private doctor that’s treating my shoulder is aware so I’m assuming some info would have been fed back, I’m with bupa that’s paid for through my job, not sure if I can switch to them regarding further treatment once I’ve gone the nhs route but will check and didn’t have a clue that they might pay out for choosing not to use them will look into that next week too.
Regarding holidays, think you may be right in that they were concerned about any delays I might incur, my next oncology appointment is for the 22nd of this month so will definitely be asking ,
Sorry if I’ve missed anyone out, my brain is fried, and just keep falling asleep today 
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Just catching up on all the messages - been keeping my head down as the anxiety about my second docetaxel next week is really getting to me. We went for a lovely meal out this evening to celebrate the end of GCSEs and for a short while I forgot I had cancer and then suddenly I remembered 
. Like @gromit12 I still have surgery to go, so although I can’t wait for the end of chemo, it’s still a long road ahead of me. We are aiming for a holiday in October (if radiotherapy is done by then).
@swk1981 and @elle16 - good to hear your second docetaxel went well, really hope it’s easier this time for both of you.
I’m also getting fed up with pretending to be strong! And if anyone else says ‘well you look well’ I think I’ll hit them!
I’ve not heard about the x ray on my picc line, so hoping that’s a good thing!
Hope everyone has a good weekend, Emma x
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@elle16 If you have Bupa, you might also be eligible for reimbursement for a wig and bras for after surgery. Check on your registration certificate when you log in to your Bupa account, there’s a category called cash benefits which will show what you’re entitled to.
Thanks @kartoffel I never even thought about contacting them , I was more than happy with nhs and once the ball was rolling just didn’t give it a thought, I had a little look at my policy last night and think it’s definitely worth me ringing them, don’t know if I’ve left it too late now but as I’ve used it this year already my excess has already been paid for the next 12 months so it’s something I’m hoping my brain will be able to get on with this week, 🩷
@elle16 - Happy Birthday! 
hope you have a nice day x
@gromit12 - hope you are feeling a little less miserable today?
Taking my youngest two into Norwich today to buy prom shoes, weather looks awful so hope we don’t get too wet
Have a good day everyone - and hope Fathers Day goes well for those celebrating it, Emma x
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