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Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

958 replies

LemonDrizzle10 · 20/04/2024 23:44

@tilllly and Daisy.

OP posts:
Thread gallery
18
Lovemycollie · 06/08/2024 08:54

Beautiful pic! My girl is getting on a bit now, she’ll be 13 in October. Sadly we lost her brother last year.

Cancer Support Thread 94 - Sweetness and light - the two noblest of things.
Lovemycollie · 06/08/2024 09:24

Not a great day yesterday. Suddenly feeling very teary.

The hosp phoned to arrange my PET scan but the nurse told me their protocol is to wait 6 weeks post op as images before this are not ‘optimum’. I’m only 4. She said she’d contact my consultant and see if he wants to go ahead or wait and then she’d get back to me.

I’m now worrying the consultant would surely know of this 6 week wait so knows the cancer has spread and wants me to start treatment asap.

Feeling pathetically sorry for myself!

TopOfTheCliff · 06/08/2024 10:09

Welcome @Littlecaf and sorry you need to be here. What type of BC have you got? The chemo regime varies depending on that. As a veteran of two different BCs in two years and 37 rounds of chemo I would say the most useful advice is just to stay in the moment. Don’t look ahead or try to guess the future. Just turn up and do what needs doing today. You will get through! You don’t even need to be brave. Just turn up!

@Lovemycollie welcome. What a horrid rollercoaster you are on. Try not to make sense of the random chaos that NHS treatment seems to create. It is unlikely your consultant has a cunning master plan. The whole system is creaking and needs oiling and prodding to make it work. It is good you have a helpful radiographer and that your scan will happen soon. Don’t forget Knowledge is Power and your team can plan your treatment better once they have this information. It will All be Fine!

I’ve got home from my trip to the Olympics with a tummy bug. I’m travelling on Thursday so have loads to sort out. So annoying! I’m on the tea and toast diet now, but at least I’m over the worst. Just hope DH doesn’t catch it.

Littlecaf · 06/08/2024 11:24

TopOfTheCliff · 06/08/2024 10:09

Welcome @Littlecaf and sorry you need to be here. What type of BC have you got? The chemo regime varies depending on that. As a veteran of two different BCs in two years and 37 rounds of chemo I would say the most useful advice is just to stay in the moment. Don’t look ahead or try to guess the future. Just turn up and do what needs doing today. You will get through! You don’t even need to be brave. Just turn up!

@Lovemycollie welcome. What a horrid rollercoaster you are on. Try not to make sense of the random chaos that NHS treatment seems to create. It is unlikely your consultant has a cunning master plan. The whole system is creaking and needs oiling and prodding to make it work. It is good you have a helpful radiographer and that your scan will happen soon. Don’t forget Knowledge is Power and your team can plan your treatment better once they have this information. It will All be Fine!

I’ve got home from my trip to the Olympics with a tummy bug. I’m travelling on Thursday so have loads to sort out. So annoying! I’m on the tea and toast diet now, but at least I’m over the worst. Just hope DH doesn’t catch it.

Hi @TopOfTheCliff thanks for responding. I have primary invasive breast cancer that’s HER2 positive hence the chemo first then the surgery. First chemo round was last week and I’m still on the floor (typing on Mumsnet!). Today I feel brighter but I was totally naive in thinking I’d be able to anything this week or last week. The fatigue is awful, and the pain in my legs is bad too. I’ve had a bit of loose stools too. I have tried ringing the chemo unit helpline for some suggestions but no reply. The nurse muttered something about antihistamines for bone pain but there was so much info being given out my brain didn’t store that bit.

i have signed up for MacMillan buddies - first talking appointment this week - also the Horizon centre in Brighton looks absolutely amazing - I might book a massage for later this week if I feel ok.

I’m totally grateful for all you amazing women who have done this previously and are still here to tell the rest of us that we also can do it. Thank you 🙏

TopOfTheCliff · 06/08/2024 11:47

@Littlecaf Are you on EC-THP? The EC is the Red Devil injections which wipe you out for a week but the steroids keep you manic and awake for a few days. If you do it fortnightly you don’t have much time to recover but it’s over sooner. Three weekly is easier to bear but strings it out. The THP is the Herceptin part for HER2 and I found the taxol and the white cell injections made my bones hurt a LOT! I had ibuprofen, paracetamol, codeine, amitryptiline and gabapentin to control the pain! You should have a goodie bag full of Imodium and anti sickness pills so use them freely as needed. The HP bit causes a bit of gut upset but the risk is allergy when it’s given. The nurses know exactly what to do and keep you safe but it’s a bit alarming. It’s a rough routine but it’s doable a day at a time. You will get through this, probably get a Complete Pathological response, and come out the other side by Christmas!

dancingwhilstfacingthemusic · 06/08/2024 12:43

@TopOfTheCliff - reading with interest as I have BC and am waiting on test results to see if I might need chemo rather than radio. I am currently making plans to close down my business for a few months should that happen and finding reliable people to take over existing promises.

I have DCIS and invasive carcinoma. It's hormone led but I'm HER negative (I think - whole new set of words to learn!).

Taking a day at a time is certainly the thing although I'm an inveterate planner, so it's hard to, sometimes.

@Littlecaf I hope you find something to ease the massive discomfort. it sounds like you've found some decent support routes but I wish none of us were in this situation.

TopOfTheCliff · 06/08/2024 13:22

@dancingwhilstfacingthemusic I guess you had an Oncotest after surgery to look at whether chemotherapy will benefit you. I hope you don’t need it. Somehow at every turn my team said “we think you should have X,Y,Z, just to be on the safe side” and I ended up with every possible treatment. My BC1 was triple positive, BC2 was triple negative. I’m a medical marvel 🙄

dancingwhilstfacingthemusic · 06/08/2024 15:11

@TopOfTheCliff Yep. Bit of a surprise after the first lumpectomy. I hope I don't need it either but will take each day as it comes. I've had a second op to widen margins and am recovering steadily - a little more tired after the second op within a 3 week timeline.

Gah. I think we would rather be marvels in different ways.

Littlecaf · 06/08/2024 15:57

@TopOfTheCliff I’m on herceptin and it has an antihistamine in it too? Yes I have a bag of anti sickness & anti diarrhoea, and steroids plus white blood cell injections. Actually feeling a bit perkier today - my brain is back after 6 days of mush although I’m still exhausted. Paracetamol and Claritin seemed to have helped the painful legs today. I might actually go for a walk later. Gosh it’s such a learning curve!

LemonDrizzle10 · 06/08/2024 16:06

@Littlecaf my first chemo knocked me completely off my feet, I was literally crawling to the kitchen for a drink of water: I nearly didn’t continue with it. It got easier as time went on - think my body got used to it a bit. I had two weeks between treatments so I’d just about recover before the next one. I did manage to complete the treatment though and I’m really glad I did.
How many have you got?

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EachandEveryone · 06/08/2024 17:04

I’m every two weeks as well. The first week is a write off I know that but at the time you just want to be asleep and alone in a dark room. The sweating has been horrendous. Then the second week it’s like I’m a different person.

does anyone have like a pot belly above their belly button? It’s really uncomfortable. I’ve had it examined and had an mri recently. I’m seeing the consultant tomorrow does anyone else see theirs every time they are due chemo? He’s lovely but I darent tell him I’m spending £70 a week in cabs. Just so I can see him and let him know how I am.

I refuse to get public transport this time.

Littlecaf · 06/08/2024 17:38

@LemonDrizzle10 yes I have a similar experience - it knocked me off my feet totally last week. Today I’ve done and load of washing and emptied the dishwasher - but that’s it. I got dressed too! Taking that for the win. I’m going to have to make sure I have solid childcare for at least the first ten days. Good to hear your body got used to it. Mine is every 3 weeks for 6 lots. It does prolong the actual treatment but I think 21 days is the minimum recommended for one of my drugs anyway. Wishing you the best. We can do this.

LemonDrizzle10 · 06/08/2024 18:06

@Littlecaf I’m out the other side now. Finished my treatment last year. Still not quite got my energy back fully though. I’m in my new groove regarding my daily schedule: I no longer feel frustrated that I can’t do stuff because I’m tired, I just naturally build in the rest breaks and don’t feel guilty about them!

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londondragonite · 06/08/2024 18:57

That's very good advice, @LemonDrizzle10! Just what I needed to hear right now.

I re-read my post op letter. There's actually a big difference from what I was told pre-operatively from the initial biopsy - it turns out my breast cancer was not invasive ductal carcinoma but pleomorphic lobular invasive carcinoma. I'm feeling a bit thrown. Trying not to Google too much. Down a bit of a worry rabbit hole.

Waiting for my first oncology appointment on Thursday.

LemonDrizzle10 · 06/08/2024 19:16

@londondragonite have you spoken to MacMillan on their helpline? Think they’re open until 8pm. They’re a great alternative to Google! They’ve got a health team as well as financial team etc.
It's taken a long time to accept that I’m not as energy filled as I used to be. I’m enjoying watching the olympics!

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Zoopet · 06/08/2024 20:44

Hi everyone
I'm going for a CT scan tomorrow ready for 15 sessions of radiotherapy.
I've had chemo and a lumpectomy already.
This evening I've noticed that I've got a lump just above my scar that feels quite hard.
I'm panicking now that it's more cancer.
I had my lumpectomy on May 23rd this year and the scar has healed well.
The lump is new.🙁.

Penguinsa · 06/08/2024 23:31

Sorry to hear you found a lump Zoopet I also had one - best to phone breast care nurses and say but its often scar tissue - mine was scar tissue when they scanned and fairly hard. I was given an ultrasound and told all clear there and then.

London I had lobular as well, 3 of them, it doesn't make too much difference - does grow as a spiders web to start with then lump at end and MRI best at detecting.

Welcome to the newbies. Chemo is tough going and I hated it but it was only for 4 months and it does end. And not everyday is awful. Drink plenty especially pre chemo, eat little and often can help, be careful to avoid infections - use a digital thermometer to take temp twice a day or immediately if feel ill and immediately call chemo line even if middle of night if goes out of range that way it helps avoids effects becoming serious. I never got serious side effects apart from steroids and also got neuropathy. Report neuropathy as well - mainly on the taxols. Sickness etc there are so many meds let them know and they can change meds, also don't be afraid to have less sickness meds if they are causing stomach pain / indigestion - I need 1 to 2 ondansetron per week they gave me 6 and told me to take 6. Steroids check with the oncologist if badly affected or chemo line - mine were significantly reduced but they are to stop allergic reactions so they like them at start. Keep a daily diary of symptoms can help, gives a pattern for each cycle. Its common to be terrified - I found it helpful to view it as 1 chemo and see how it went and I was terrified throughout but you just need to turn up - they are used to people crying / panic attacks etc. You can also request meds for anxiety but when people say cancer patients are brave its really just doing it as its that or death and many of us were absolutely terrified but it does end. And whenever you get chance for a nice day out take it, in a 3 week cycle generally last week, weekly Pax is more meh throughout but sometimes they give you a break due to neuropathy and then take your chance to go away. I went to see puffins.

Worth seeing dentist pre chemo, probably private given lack of nhs and get any work needed done and extra fluoride toothpaste, quite brutal on teeth but mine are fine. Eyesight can also be affected, anything really let them know. With taxols worth using ice socks and ice gloves (Amazon have them if google chemo plus those terms) and take a coolbox from a camping or similar shop - can use ice or frozen peas instead. Cold cap is an option for some not for me but can help with hair loss. I found surgery, radio and hormone tablets fairly easy but chemo and the tests for cancer hell on earth but once through a very difficult year you do get to a new normal. I am now 2 years all clear and seen my 2 kids to be 17 and 18, one into Oxford Uni, the other really struggled and is SN but am back taking holidays - last one Borneo with my daughter, and have just got a new job which I love so good things can happen again. Obviously there's a lifetime risk of reoccurrence but I tend not to think about that, I don't want cancer taking any more of my life through worry and I am going to enjoy life now until it returns. I would say the good thing is you meet lots of lovely people, there is lots of support and sympathy and it was like the ultimate exposure therapy - hellish to get through at times (mainly mentally) but now I am much tougher and will do things now I would never have been brave enough to do before. I am back to best fitness ever been at and memory back to normal, do have some neuropathy and hair is still a lot shorter than before but finally better. So curly before. I have DIEP surgery on 13th. I also found a chemo buddy useful during chemo, I had a couple of people going through chemo same time and we moaned together - find someone similar attitude to you, I was a moaner. So it was lots of this week was rubbish, but just having someone who got it helped. One was from here via PM and other was from another cancer forum. The charity SomethingToLookForwardto was great, gave us a free week on Cornish coast in July. And financial help if needed (I got ESA, can also get PIP) Macmillan can help, and apply as soon as you feel up to it, can take a while but gets backdated.

EachandEveryone · 07/08/2024 13:07

I’ve just come from my pre chemo meeting and it threw me to see a different consultant but she was so lovely. I had my mri after three treatments which I think is quite early. Anyway it hasn’t grown and it’s still in my groin only so they are pleased. I’m over the moon and I will remember this when I’m shitting myself and crying next week😀

LemonDrizzle10 · 07/08/2024 13:14

@EachandEveryone 🎉🎉🎉🎉
Well done!

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thesandwich · 07/08/2024 13:44

That’s brilliant @EachandEveryone

tothelefttotheleft · 07/08/2024 17:26

EachandEveryone · 06/08/2024 17:04

I’m every two weeks as well. The first week is a write off I know that but at the time you just want to be asleep and alone in a dark room. The sweating has been horrendous. Then the second week it’s like I’m a different person.

does anyone have like a pot belly above their belly button? It’s really uncomfortable. I’ve had it examined and had an mri recently. I’m seeing the consultant tomorrow does anyone else see theirs every time they are due chemo? He’s lovely but I darent tell him I’m spending £70 a week in cabs. Just so I can see him and let him know how I am.

I refuse to get public transport this time.

I do. I think it's bloating from the chemo. That and the big weight gain.

EachandEveryone · 07/08/2024 17:37

Yes I asked the consultant and there’s nothing on the mri in that area she said it’s just a thing nothing to worry about. If feels like everything is stuck there yet my belly is relatively flat it’s weird but nothing to worry about.

Zoopet · 07/08/2024 18:30

Thank you@ penguinisa.
Isoke to my bc nurse this morning and the radiotherapist called in a bc nurse before I had my CT scan who checked the lump and said it was fluid.
Phew.
Emotionally exhausted from panicking now but at least radiotherapy can begin.
Hugs and support to everyone on here. Xx

Zoopet · 07/08/2024 18:30

*spoke.

dancingwhilstfacingthemusic · 07/08/2024 18:51

Glad to hear it was fluid. Must be such a relief.