Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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@ClashCityRocker I've worked all the way through chemo, and now 10 months later I do still have brain fog effects - I find I can concentrate on things pretty much as I used to before, but I forget stuff more if I don't write it down (or more if I don't look at my lists!) and I don't make connections and think through the implications of stuff as much as I used to. I don't know whether it will ever come back. I cope okay though (sat here struggling with a complicated spreadsheet!)

My addition to the chemo-wear discussion is not to wear anything that you really like and might want to continue wearing, as things take on an association with chemo and you don't want to look at them again! I sold a nice Orla Kiely bag that became my chemo bag because I couldn't unlink it. Not everyone might have this though!

I cold capped and iced my feet and I was really cold. I also had a poncho although never actually took it off. I got one of those battery operated heat pads that are meant for back or period pain and that helped a bit towards the end of every 5 or 6 hour session, though the battery didn't last as long as I would have liked.

@TopOfTheCliff glad you are clear of the genetic risk. I’m interested to see what, if anything they give me. I don’t like the sound of this cap stuff and all of the foot issues. 🙏 That no other crap gets chucked at me for a while because I’ve had my share I reckon. Signed up to do a meditation course next week - sadly no llamas. Although one of our friends down the peninsular has a few on his property! Maybe I need to go and stroke one…

@lucysmam hope your results appt goes well today x

Well today is my oncologist appointment post chemo. I’m terrified but excited to get it over. I can still feel the lump in my mind it’s transported itself but that could just be me. I’ve kept some toast down me. I don’t know what to wear does anyone else make an extra effort? I may put my wig on!

@FairyWren7 what convinced me to take Cape was the improvement in 10 year survival from 85 percent to 92 percent. That’s a 50 percent reduction in the risk of death which convinced me and my oncologist that it’s worth it. Still a battle but I’ve taken 620 pills and have 500 left.

Good luck today @lucysmam and @EachandEveryone May it all be as good as possible xx

Top

@SierraSapphire I’ve gone off ginger totally since chemotherapy. It makes me feel sick instantly by association. Also the nice little sitting room in the West wing of Top Towers where I languished after chemo makes me queasy to go into. I’m going to give it a total makeover after I finish treatment.

@SierraSapphire yes! I get the association thing. Not so much with the chemo but hospital stays & other things. I've abandoned plenty of outfits and bags because I associated them with not so pleasant events.

Thanks for the well wishes for today. We're on the bus & my belly is doing flip flops 🙄

@EachandEveryone no extra effort, outfit wise, here! I just go as me - wide legged, colourful, jeans, vest top and floaty wrap top thing that I think was actually sold as a beach cover up today. I hope your appointment goes well 🤞

@TopOfTheCliff when you put it like that it’s a no-brainer. I see my oncologist next Friday so I’ll be asking lots of questions. I need to do some research. I better start writing my list of questions - knowledge is power.

Well done Top, you truly must feel like you are near the end of two marathons back to back but you are still taking the time to help others. Thank you 😘

If there are any TNBC fellows and/or BRAC1 on the thread who have any other info on drugs/treatment after chemo and mastectomy please give me your knowledge.

Fluid seems to be finally down a bit. Either that or it isn’t working properly!

Here’s my old lady red setter out for a shady walk this morning. It’s a glorious day here.

Finally I am home! Had my op, they started off laparoscopically but then went to the midline incision and removed uterus, cervix, fallopian tubes, ovaries, omentum, lymph nodes. I was fortunate that they managed to release the bowel adhesions so I have no resections.

My bowel, however, although no longer on strike, is still in a teenage-like state of high dudgeon at being manhandled and generally accosted and is misbehaving accordingly. It seems immune to all attempts to appease it with peppermint oil and I'm not sure how many more days of jelly and ice cream I can deal with. Ironically, my favourite dessert as a child!

The surgeon, when he came to debrief me after the fact said they could see no evidence of infection, so who knows. Was a bit bummed about that as, as we humans do I suppose, I was hoping for an easy answer. Got to wait the four weeks for the results.

Now I have not enough to do and too much time to think. I actually feel a bit better, apart from the bowel issues and post surgery pain and stuff, as they gave me 4 units of red cells afterwards so I'm less anemic. All dressed up and nowhere to go, so to speak.

@LemonDrizzle10 What a beautiful girl!

@FairyWren7 I am trying to look forward and be positive. I’ve just been offered a 3 day residential vegan yoga retreat in October which sounds perfect for a detox after finishing Cape. Then I’ve got the Moving Forward course in November and my sailing buddy has just been chatting about plans for 2024 which makes me happy. Keep looking at the goal and not backwards at things we can’t change!

@MyNamesGaryAndImAddictedToChips sounds like you're recovering post op quite well. Bet it's nice to be home.

Just back from a lovely catch up with a close friend, but now have a rare afternoon and evening to myself as DP is out on a much needed lads day!

I'm feeling rather sluggish and trying to figure out whether it's

A) My body telling me I need to rest after a fairly busy (but not insane) few days

B) My mind telling me that I clearly need to rest because it doesn't want to utilise this perfect time to actually do several of the tasks I've been putting off during treatment/recovery and actually I will feel much better with them done.

Basically I'm trying to decide whether I'm genuinely in need of a lazy day or just procrastinating!

Well I’m trying not to be annoyed. Got a lift all the way there to be told from my consultant that the reports fr two weeks ago aren’t back yet. Honestly. I’ve been so tense over the whole thing. I asked him about the lump I can now feel on my pubic bone and did he want to feel it. He said no it will be on the scan. On a more cv positive note he said he doesn’t suspect any surprises only that I will need radio and to keep my long line in just in case. I know he’s fed up. We all are 😊 it is indeed a beautiful day. Im at Hatfield house having a break.

Well, I'd just written a post & managed to press 'active' instead of @ for some reason 🙄

Today went well - ct showed everything stable which I'm taking as a good sign considering just how ill I was when I started chemo & how well I'm feeling lately.

We discussed my tooth - my consultant has no immediate concerns wrt continuing the chemo for the full 18 weeks since it's niggly & the discomfort is focused on that tooth rather than my jaw iyswim. Handily, she knew of a local dentist taking on NHS patients that I hadn't thought to ring - I thought they were just the emergency clinic so discounted them but apparently not! She says get it checked out but they're not to do anything else without her say so, which is fair enough.

Next steps are Ribociclib and Prolia. I have a crib sheet for the Prolia, but not the Ribociclib so will have a hunt for some info later on. If anyone has any reliable sources in the meantime they'd be appreciated!

The most pleasing outcome was that I can look at going back to work on a phased return from after October half term. I'm so happy about that!

We had celebratory burgers and ice creams on Clifton Park, and a wander to the museum too 😊

@EachandEveryone I would find that frustrating! Hopefully you won't be waiting much longer for the results.

Glad you had such a positive day @lucysmam - and sorry yours was so frustrating @EachandEveryone .

We've just enjoyed a lovely Pimms in the garden.

That all sounds positive @lucysmam , I was thinking of you today. Sorry your appointment didn't tell you your results @EachandEveryone .

I signed the surgery consent forms to have my tumour removed today. Hearing all of the risks is awful. I'm 31 with 2 young DC. I came home and made a pretty complicated dinner and then couldn't eat it for sobbing like a complete muppet. It was like I'd blocked out my thoughts and feelings but then didn't have anything to distract me anymore. My mind is buzzing from "DC2 starts school, we need uniform" to "I haven't got a will, I should figure that out." and everything in between.

@FairyWren7 I left teaching for a few reasons. I was a part-time UPS teacher who didn't just say yes to all the bullshit so wasn't well liked by SLT shall we say. I also wanted more time for my own DC. I missed my eldest's nativity because I just wasn't allowed to go for example. And overall really for my mental health. I'd started to think it would be better to crash my car than get to school. I raised workload/wellbeing several times with management but was just told it was me. 3 teachers left at Easter, a further 2 in July and several support staff so I don't think it was! Have tutored since and loved that - it's all the best bits of teaching! Just isn't sustainable working when my own children are home from school.

@lucysmam I start a new job for the civil service in September! Although that's now looking like when I'll be recovering from midline surgery 🤦🏼‍♀️

@MyNamesGaryAndImAddictedToChips I hope you recover well, I’m heading for a similar operation soon (maybe September).
Waiting to hear from the hospital as to a date for that and whether I’ve to have more chemo first.
So I’ll be interested to hear how your recovery goes. X

I’m sorry @Crimsonbow - that all sounds incredibly stressful. X

@RedRosesPinkLilies Thank you. I'm okay when I don't think too much, aren't we all? I think we're heading for similar surgery - I'll let you know if I get any more tips than I've seen on here. The plus side of having young DC is I think I still have my maternity leggings and joggers in the loft so getting them out and washing them is on the to do list. I bought bigger pants for post-birth but now they're just my pants 😂 I'm going to treat myself to some even bigger pairs.

Having a play with the nhs predict tool, what is KI67? Does anyone know and been tested?

Thank you all for your kind words of support after DD’s trip to the hospital and for sharing your experiences. She is on a combined pill and it seems these are not recommended for women who get migraine with aura, so she’ll need to switch to progesterone only.

@lucysmam congrats on your stable results. @EachandEveryone I’m so sorry you had a wasted journey. @MyNamesGaryAndImAddictedToChips I’m glad your surgery has gone well. Sorry to hear you’ve got some bowel issues. Happy to offer what advice I can from someone whose bowel has been annoyed with me for the past 6 months.

@Scandimandy re Ki67, it’s a marker which indicates how rapidly the cells are dividing, higher suggesting a more aggressive tumour. I asked about mine but was told it ‘wasn’t tested on the NHS’ by my unhelpful surgical consultant. It is tested by some trusts which is why it’s part of Predict, but obviously not all. My Predict results are really shocking but there are all sorts of reasons why they are out of date and overly pessimistic.

@Scandimandy after my breast surgery, when they unexpectedly found cancer in a lymph node, I was borderline for chemo. My oncologist then offered me the KI67 test to help me decide what to do. It came back very low and when we put it into Predict it meant chemo didn't really impact on my longer term survival rate so I decided not to have chemo and just go with the radiotherapy and ongoing hormone therapy.