Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Well done @doublec one down! One thing to beware of during the manic phase is late night shopping sprees. I kept being surprised by lovely parcels arriving in week 2 that I had ordered at 3am and forgotten all about.

I had sort of good news about my bone scan. A charming radiographer rang to explain that the room where they mix up the nuclear juice in the hospital has been condemned as unsafe so they can’t do scans. Either I will be sent to Plymouth this week or Exeter next week as I am top of their urgent list now. They are so apologetic and kind I am mollified. I will quite enjoy an outing too.

@doublec you have just a lovely outlook 😊

Please come stay at my pigsty home, if you have another manic phase

Home from bronchoscopy. It was a little uncomfortable at times but I was well looked after during and after.

Sore throat and feeling a bit spaced out so bed for rest of day

@TopOfTheCliff finally! You will soon be able to put to rest that niggling question that has been lurking at the back of your mind for weeks now.

Glad you got good care and that it's done.

@TopOfTheCliff

At last! Glad you've had some good news about getting it done.

@Tilly glad its over and done with and that you received good care..

@TopOfTheCliff glad you are getting your scan soon.

Latest phone call is to say that my bone scan is Wednesday. I have to drive 20 miles to Exeter to get the nuclear juice injected then drive back to the local hospital to have the scan two hours later. I must avoid children and pregnant women as I will be radioactive and wear a red wristband! I’m quite looking forward to it now. What a way to celebrate my last day of treatment!

Well done @Tilllly I hope you are recovering. When do you get the results?

Sending strength to those that need it x
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It'll be 10 days or so for all the tests to be back and the MDT make a plan

That's kind of hilarious
I got the nuke juice the other week and wasn't even allowed to use the loo - apart from the designated one
Still, convoluted or not, you're game on :)

Take a bell with you, so you can ring it and shout "unclean" 😁

My Godson drove 4 hours to spend the day with me today 😊 I'm shattered but happy to have seen him

@SierraSapphire
@RedRosesPinkLilies

It is a little before 4am, a few eggs are boiling on the stove, am eating a hot buttered crumpet while I clean out and rearrange the kitchen cupboards. Yes, am still suffering with steroid-induced mania - am Nigella, Kim and Aggie, alll rolled into one!

Thank you to those posters who confirmed this for me, I had wondered if it was the steroids, and now I know. On one hand, I have been more productive since last Thursday than I have been for decades, however, having previously suffered with manic episodes, this is a huge concern for me and will be discussing this with my oncologist next week. Am thankful there were only steroids during the chemo, and then twice daily for the first three days afterwards. Maybe it might be possible to reduce it further?

Yet another surprise has been how much I have been peeing. I always drink masses, but since chemo, gosh, urination has reached Olympic level. I am a gold medalist, and then some!

Most frustrating aspect is brain function. It's none-existent and akin to pre-HRT brain fog. So much of my day is a near constant reminder of all the reasons I had to take HRT in the first instance. The confusion and inability to process and at times, even comprehend simple information is super scary. Am even struggling with telling time. (On a related note, have found the comments around HRT interesting, and have a few thoughts I want to share about my own experiences another time, possibly during my next manic episode)

As for late night shopping, have no fear, for once that is not something I will succumb to. If anything, quite the reverse in as much as I am doing some major unshopping; have sold lots of stuff online and although I have bought a cashmere sweater and basket bag with part of the balance, the majority of my financial gains are safely in my savings account where they will remain are destined only to be spent on a recovery few months in California. (And maybe a nice little treat/reward in the form of a new watch too)

@Tilllly Was hesitant to proffer any bronchoscopy advice as although my mother did have several, it was three decades ago now. Uncomfortable, was her verdict, IIRC. Hope you're feeling less sore now.

And re. your pigsty house, well, if you're in London, particularly the City, that might be easily arranged although to be fair, a lot rides on how I react to the next round of chemo/steroids!

Apologies if I have forgotten to @ anyone who replied to me. Not an intended slight, just a error on my part/finding it difficult to recall who said what.

Love to you all ❤️

@Slitheringheights I finished CAPOX a couple of months ago for bowel cancer. I had 80% of my colon removed and there were cancer cells in one lymph node so I was offered chemo. Are you doing 12 weeks?

I’m in Australia so our protocols are a little different. I did a blood test a day or two before the infusion then I would see my oncologist on the day of, who would review my results, ask about side effects and decide whether to alter the dose.

You mentioned your arm hurting. It is standard here to have a chest port inserted for Oxaliplatin infusions as they are known to be painful when using the arm. Is that an option?

As for me I got my latest blood test results and unfortunately my liver function is still out of whack so I need a biopsy. SOB! I don’t even really know what they’re looking for, my dr rattled off a long list of things I don’t have. I’ve had an MRI and a CT with nothing abnormal detected. So frustrating that this should be my recovery period and instead it’s just more bloody drs, hospitals and tests. And frankly, having a bloody great needle shoved in my liver does not sound like fun!

Well done for making it through @doublec and for reminding me that I have a pile of clothes to put on Vinted. I have a musical instrument to sell as well but I can't play anymore for medical reasons, but as I find that difficult to part with, I want to find something special to buy with the money, which should be a couple of grand, which is more than twice, maybe three times, what my parents paid for it in the 1980s. On the steroids, after talking to a friend who also had chemo I didn't take many of mine. I was fasting to minimise the effects of the treatment on healthy cells, and I didn't want the sugar hit. I didn't take any of them afterwards, and after the first time I only took half of the pre-ones as well, somebody said the first time is the most crucial because that's when you're more likely to have the allergic reaction, if you've been alright this time, you'll probably be okay next. Obviously I am not a doctor though, so do your own research! Though, I think there are others on here who have said the same.

@doublec if you have had manic episodes before then you will know whether this is just steroid hyperactivity or something more. My DD has had several manic episodes as she is bipolar. If you can’t sleep that will worsen things. If you are having any hallucinations or delusional thinking ( like being the best cancer patient ever! ) then please get some help. If it is just the steroids it will be gone once you finish them.

@Remaker I am sorry to hear about the biopsy when you just want to fight clear of the hospital. Fingers and everything crossed.

I did it! Last dose of Cape taken this morning then a weird day spent driving around and getting the nuclear juice then the bone scan. It only took half an hour in the big machine ( I fell asleep) everybody I met was helpful and kind, and they said I’ll have the results next week. I’m now resting as I had to walk a lot on blistered feet. I feel mostly thankful and tired.
Keep trudging onward everybody xx
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Yay @TopOfTheCliff you did it 🥳 I was just about to post & ask you whether your last dose was tomorrow! Hopefully your sore feet heal quickly and you can enjoy your recovery 🤞

@SierraSapphire I have a bag of things for Vinted-ing. I plan to try and do 5 or so a day...should be do-able, I think 🤔

@Remaker that's the pits! The biopsy is possibly the worst bit imo...although the waiting is a very strong contender too!

@doublec the steroid induced "gogogo" was weird! I hope you/your team get a handle on it soon 🤞

@Tilllly glad to see you were well looked after during your bronchoscopy. That makes all the difference sometimes.

Not much going on here - eyelashes are properly growing back now (I was stood on top of the mirror showing dd1, with the aid of a torch to help her see 🤣), and finger nails continue to slightly detach, but not all the way 🤷‍♀️

It occurred to me, whilst in the shower, that school are going to tell me to wear rubber gloves for watery things but then you have to put up with that horrid, damp, feeling. & I'm not sure that's any better for keeping them as attached as possible, without infection, than just dunking them in water 🤔

Hi,

Hope everyone has had a good day. I had my appointment today. I'm having a lumpectomy on 10th November, but they are going to take my nipple as well, cause if they don't, I might need a second operation if the pathology afterwards find cells. There are various nipple reconstruction options I could go through next year, but I'll see how I feel. The breast care nurse went through everything with me and was really kind. I've been told that it will be two or three weeks off work, I've booked three to be on the safe side, cause I dont want to let the people I work for down at the last minute. They will also be taking a couple of lymph nodes from under my arm. I'll then be having radio in January (5 days), not sure what to do about work then. Feeling relieved on the whole cause I know what I'm dealing with now.

@TopOfTheCliff congratulations! Hope the feet are on their way to normal very soon.

@Octopus45

That sounds positive. Not a long wait for the lumpectomy and I'm glad you don't have to have chemo.

I've never heard that they take the nipple with a lumpectomy. Do you know why that is happening?

@Octopus45

Also you don't have to have radioactive stuff injected the day before your lumpectomy?

@tothelefttotheleft they're taking my nipple cause the cancer is very near to it and its the safest thing. I decided that would be a better option than maybe needing another operation if there are some cells nearby.

@Octopus45

I totally agree about wanting the least operations you need. I asked about a mastectomy but they didn't want to do it.

@tothelefttotheleft Wow, am shocked to read that. It is 100% your choice to have a mastectomy should you want to. Your team absolutely should respect this. And besides, at any point up, even right up until the the general anaesthetic for the surgery is given, you can change your mind and choose to have a wide-local incision instead

Even though initially I was eligible for breast-conserving surgery, I knew I wanted a mastectomy. One of my letters from my MDT stated that I had opted for this, and (patients' choice) typed exactly like this, was added.

You really need to feed this back to your hospital and trust via PALS.

Re. nipples and lumpectomies. My tumour was very very close to my nipple, so that would have gone had I opted for breast conserving surgery. This is due to having having to remove a margin of tissue surrounding the tumour to check the margins.

@Octopus45 The radioactive dye is actually injected to double check to see if there's any/no spread to your lymph nodes. If there is, your sentinel lymph node (and possibly others) will be removed then, not latter. It is decidedly likely you will be sent to nuclear medicine on the day of your op and before you're admitted for surgery.

Also, read up about cording so you know what to look for should you have any lymph nodes removed.

Re. nipple reconstruction. While it is true they can do wonderful things now not only with tattooing and actually building nipples from your own tissue, the former can fade and the latter fail. Might be worth doing some more research into this and asking your oncoplastic surgeon for photographic evidence of their work concerning both nipple and breast reconstruction before consenting to anything.

Hi @Octopus45 - I had lumpectomy and sentinel nodes done late August. I had four weeks off work and then went back as only got SSP but for me I should have taken another week. I struggled a lot that first week back - emotionally and physically. My lymph nodes were clear. I started radiotherapy yesterday for five days and thought I would be fine, but was actually very sore and tired last night. Second dose today. My line manager was great and got me full pay in the end. I’m taking four or five weeks for this as although things are going well I feel knocked for six really and am just looking forward to 2024 now! Everyone is different but I definitely needed more time off than I thought. Best wishes.

I'm doing third D chemo today. It's been ok but have had to drop dose as so tired and have had fever throughout ? due to GCSF. Please be I'm not back in hospital by weekend overheating.
It's been interesting reading about surgery as mine will be after chemo as it's a big MF. I'm in a headspace knowing that mastectomy is way agead and a few nodes if lucky, but also worried about a high BMI which fits me into extremely extreme lardy category. I'd actually be happier having a double,as mixed ductal and lobar and their behaviours are different ? But also worried that in an ideal world need to loose as much weight as possible so that healing isn't affected...how the heck is that going to happen. I am trying, but my exercise drill the last couple of months has been couch to loo every hour..I think someone else also said they'd wee' d alot having chemo.
Add in extra alot of water with a fever, got a high sodium from dehydration and low potassium from sweating despite extra but goodness. How ?
Thank you for hearing me!