Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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Thank you so much for the MRI advice and descriptions! Everything online is so (understandably) clinical and reading your recounts has really helped. And made me laugh!

I knew the no metal thing but hadn't considered my bra. I also have surgical pins in my lower leg and I asked about this when I rang to rearrange the scan and the person said it wouldn't matter. It's a pelvic scan so presumably it won't be my whole body in the tube.

Been thinking about my granny a lot. She had her stomach removed due to cancer and presumably chemo (I remember her wigs on display in her room, I was only young). She lived nearly another 30 years, and lived well. She died at 94 of just being 94 really. If they could do that 30 years ago then I'm trying to be hopeful for now.

Good luck with surgery today fairy and what

I was diagnosed with breast cancer on 28 June. It's also in my lymph nodes. Got a fright last night as my armpit was hurting and feels very lumpy. I suspect it's on the move. Can't find out until I can get an MRI scan but it's been cancelled twice as the scanner is broken!

@FairyWren7 have you tried the breast care nurses with your implant question, they can help with a surprising amount of things! Good luck to you with your surgery, I’m coming up to three weeks post mastectomy with reconstruction now, good luck to you too @Whattodotomorrow

Hi @1Strawberrycat welcome to our lovely club!

I know it's super- hard but do try not to panic about the lymph nodes. When I was diagnosed with BC last year I managed to convince myself of all sorts of spread. It's rather rubbish about the MRI. Do you have a treatment plan in place?

@FairyWren7 and @Whattodotomorrow hope all goes smoothly for you today.

Thanks for the good luck wishes.
Best wishes @Whattodotomorrow

Slightly less nervous now. Had to have some radioactive stuff injected into my left side this afternoon to help locate the sentinel node on that side.

I’m pushing for one surgery and implants. Plastic surgeon is concerned about the outcome with implants. Loose skin concerns. But then the tissue expanders expand the skin.
The other issue is I’ve had six surgery on my stomach - there will be a lot of scar tissue in there. Plus the clots and pulmonary so I really don’t want another long surgery.

I hope it goes ok.

Yes the implants are a much quicker op than diep - I was told 2 hours rather than 12 though seen some saying 8 hours for diep.

Bad re MRI Strawberry You can also be referred to another hospital if that would help, maybe call breast care nurse and see if there's anything can be done to speed things up.

@FairyWren7 sorry you didn’t get a response to your question. I only had lumpectomies so didn’t feel qualified to reply but wish you well with the surgery. It’s like being on a conveyor belt and you are a helpless parcel.

@mowly77 hello again. You sound as though you are resolved to go to see family and take the risk regardless. I guess if you cost out worst case scenarios then go for it anything less bad will be a win. It’s rubbish though.
I have done four cycles of cape with 5000mg daily in Two doses. Apparently I now have grade 2/3 hand foot syndrome and have earned an extra week off the drugs then a dose reduction for the future. It’s a relief that the nurse took it more seriously than I was. I’m actually pretty well otherwise. They just cause manageable nausea and diarrhoea and tiredness which I can cope with. Halfway through and apparently the consultant should have phoned this week but she didn’t schedule it. I’m not bothered as there is nothing to discuss until I finish treatment. Feeling quite Zen today.
@1Strawberrycat welcome to the thread none of us want to be on. It’s all terrifying and you will convince yourself you are riddled with cancer. The scan will tell you what you need to know. Knowledge is Power! It will get better once you have the results.Sending strength and calm xx and the Calm App helps if you need it.

I’m popular this week. It’s only Tuesday and I’m on my fifth drop in visitor already. Must be the cake supply or my listening skills! Perhaps the nutty church lady was right and cancer has made me kinder and more empathic.
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Welcome @1Strawberrycat . Like you I was recently diagnosed with breast cancer that has spread to the lymph nodes. Waiting to learn my treatment plan on Monday.

No wonder I was feeling so lousy. Currently in hospital on the sepsis pathway.

Hope all surgeries go well today.

@MyNamesGaryAndImAddictedToChips oh no! Had you actually started chemo? I thought you were still waiting for a plan. Hope things settle quickly and you feel better soon.
Feet up here and visitors banned for a bit. I’m exhausted!

@TopOfTheCliff I haven't started any chemo, not got a diagnosis yet. I think this is from the previous surgery. Have an appointment next week to discuss more surgery.

Five visitors in two days?! I don't get that many in a month! 😄

Nor do I usually @MyNamesGaryAndImAddictedToChips I am not sure why I am suddenly so popular. DH must have told everybody I am bored or lonely or something. I’ll interrogate him later.

Crikey @MyNamesGaryAndImAddictedToChips not what you need! Hope you're soon on the mend.

Morning everybody. I have been a bit quiet on here lately, and there's masses to catch up on. Sending positive thoughts to all, especially people recovering from surgery or waiting for results. @MyNamesGaryAndImAddictedToChips - I assume you are getting heavy duty IV antibiotics, and hope you are doing OK and they do their work.

@mowly77 - that's really tough, and so unfair. If your original insurance doesn't cover you, is it worth trying again with a new insurer from scratch, given what you know now?

I have just had a few indulgent days in London with DH and DDs, catching up on all the celebrations we have missed over the last year because of my treatment, and their exams. Probably the biggest highlight was seeing the immersive production of Guys and Dolls at the Bridge Theatre. We went to the Ivy next door for a pre-theatre dinner after seeing you recommend it on here @EachandEveryone - thank you. There was another bald lady sitting near us and I did wonder if she was another reader or poster on this thread!

Oh I hope you got a nice table as they put us with the afternoon tea lot. I thought it was good for the price. Did you get your buy one get one free ticket to the show? I must say that access card has being very handy,

Good wishes for your surgery today @FairyWren7 . I had a delayed DIEP recon as I definitely didn't want an implant but I appreciate your reasons for not wanting more surgeries etc Let us know how it went when you're up to it.

That sepsis malarkey can get in the bin @MyNamesGaryAndImAddictedToChips ! Hopefully it will be sorted relatively speedily if it's early 🤞

Any ladies that have had the biphosonates transfusions, is there anything I should do in advance - apart from hydrating? I'm feeling a bit wobbly as it's back to the chemo ward & I'm aware you can feel rubbish afterwards for a few days, which I know will take me back to the trauma of the initial chemo. My oncologist said there were no pre-meds but I kinda want something for the psychological aspect! It's scheduled on the first day of school holidays 😔 & I'm already emotionally battered from it being the end of all things primary school. Still, I'm trying to frame it as a positive because it's a risk-reducing treatment & I'm grateful it exists etc etc Any bolstering gratefully received!

@EachandEveryone - yes, we had a nice table with a view. We just booked regular standing tickets, which was a bit challenging after a long day sightseeing, but I am generally feeling pretty well at the moment, so it was manageable.

For anyone contemplating it, in case it's helpful, I am a couple of weeks into Abemaciclib, and doing OK. (I know you made the decision not to take it @Silkierabbit because of the risk/benefit equation, and I completely get that. I was nervous myself but I suspect it's like a lot of the treatments that people are more likely to post if they are struggling than if they are doing OK, so hope it's OK to share a broadly positive experience. Definitely don't mean to minimise or be dismissive of others' experience.) I haven't really noticed any fatigue, and have had slightly dodgy bowels once or twice, but not enough to need to take loperamide so far. Having said that, the regular dose is 150mg and my consultant starts people on 100mg, and then steps up if they are doing OK, rather than doing a dose reduction. So I have yet to experience the full dose, but am planning to stay on 100mg for a few more weeks to get me through summer holidays etc.

@HauntedDishcloth - I had my first bisphosphonate infusion during my first week of Abe, which wasn't great, as then I didn't know whether the side effects were the infusion or the Abe which can cause neutropenic sepsis - but it's rare. (I also didn't enjoy being back in the chemo suite, but it was very quick compared to chemo.) I got a temperature and felt flu-ey and generally fairly rubbish, so probably should have called the chemo line but didn't as I was fairly sure I couldn't be neutropenic, especially so early on. I did a lot of googling and found one article that suggested people should be told to take paracetemol as a precaution, but that doesn't seem to be standard practice. I was nervous to take it in case I masked sepsis symptoms, but hopefully that won't apply to you. I did try to stay hydrated but maybe should have drunk even more than I did? On the plus side, it was all over within 24 hours, so maybe you could plan a day of movies and popcorn for your kids and then should be able to do normal holiday stuff thereafter?

I'm having an utterly cannot be faffed with anything kind of day today. The washer's only just gone on & I've forced myself to get dressed.

Dd1 is making noodles for lunch, and then I'm going to wash up. Hopefully making myself do something will lead to a bit more "go"!

I spent much of the late afternoon yesterday painting more props for work & avoiding everything too 🤷‍♀️ Goldilocks and the Three Bears are ready to maybe be dropped off at school tomorrow, though.

@lucysmam don’t feel guilty some days you just have to rest and recharge. I’m still in bed after a delicious fried breakfast cooked by lovely DH. No doubt he will shortly be bringing coffee and biscuits. I am very spoiled! My feet are recovering slowly. No plans for anything at all today apart from reading a romance on my Kindle.

Hello all.

Sending positive vibes to all those struggling and anticipating today.

I have my results tomorrow. I hope they're not affected by the consultant strike.

I feel like there's a world of choices and decisions I don't yet know about regarding what they may do. I don't mind going flat if that's the easiest thing. I know it may not be though.

I'm looking at probably 6 months off work or more. Teacher.

On the other hand I've discovered Liz O'Riordan. Anyone with a new diagnosis of breast cancer, do seek her stuff out. Mostly on Instagram and she's done lots of interviews with stop breast cancer now on YouTube.

She was a breast surgeon who has had breast cancer herself twice.

The biggest challenge for me over the next few months is that I have young children and elderly parents. They all do and will rely on me.

Hi again - and my thoughts to all who are recovering from surgery; waiting for surgery; waiting for results ;or just generally struggling. Thank you for all the good thoughts & welcome back to the thread no-one wants to be on.

Well, you read my mind @dotty2 I talked to the insurers & I CAN get insurance, I hadn't answered a few of the questions in just the right way because I genuinely did not how to, given that my current treatment is failing & I'm waiting to go on Cape. It's an astronomical amount - £500+ for the middle tier but that's because it's for 6 weeks & in the US (& includes DD). I'm aiming to come back before 6 weeks but just in case ... It's a v good insurers for us cancer-havers & was recommended to me on another Stage 4 cancer board, Insurance With, if that's allowed or anyone's interested. It was much much cheaper for 10 days in the Canaries BTW! (& I was stable then anyway).

I'm packed & feeling dreadful but ready to neck some Oramorph & go off tomorrow. My sister, god love her, was tasked with calling the airline to see if there's a deadline after which you can't cancel the flight. She did that, & she also booked me wheelchair assistance, thinking to be helpful. I have cried & cried. I can walk! I just walked to DD's school & back. But she's thinking I need all the help I can get. I have visions of being on the back of one of those beep beep annoying carts. That would be better than an actual wheelchair. Absolutely no disrespect to anyone who needs or uses one, I just didn't think it would be me, tomorrow. How did it come to this? I'm only 48. I used to bounce around airports all excited, buy something nice, neck a few drinks before my flight, saunter on & watch a movie/wrangle a baby, looking forward to my trip. I'm a shell of who I was. If I feel ok tomorrow morning I will cancel it when I check in. But I suppose I accept that if I feel dreadful & it will help me get on the plane with DD & our hand luggage, then so be it. But, honestly. Cancer is a robbing bastard.

Hi All, best wishes to everyone for surgeries, treatments, results, side effects and the all important R&R. I hope that covers everyone!

I had my final chemo infusion today. I wasn’t sure about ringing the bell, I’m not superstitious at all but I still have 2 weeks of capecitabine tablets so I felt like I haven’t earned it. And it had been a messed up day with delays and cancellations so I was in a mood. Ironically sitting in the chemo chair cheered me up, mostly due to the lovely kind nurses who gave me the time and space I needed mentally and didn’t rush me to fit their timetable. They suggested the bell and at the last minute I decided to do it. DH and I both shed tears so I think marking the occasion was the right choice for us.

I assume it was the 2 week break from chemo and all the fluids and drugs I got in hospital but I’m 6 hrs post infusion and don’t have any of the usual side effects. Apart from being wired on steroids of course. Will be interesting to see how the capecitabine goes as they’ve reduced my dose to 75%.

@lucysmam I love your Goldilocks & the 3 bears! Cheered me right up.