Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Thanks for asking both. Dd has blood test friday and they have given me numming cream. It's my older one, aged 12.

Her rash has spread but she's still well.

I'm making lunch then we are going to see Wicked later.

@cannaecookrisotto@Ventress@ForestFlowerFairy
No more scans for me until my annual post treatment mammogram probably next August or September. I now face the 5 years of Letrozole and will collect from the pharmacy this week. My radiated boob hasn’t gone red or any darker but I do get some stabbing pains if I do too much. It’s still very lumpy. Does anyone know if you have any further checkups with you surgeon, after the first one post surgery? When will it become clear what my boob will finally look like because I’m wondering now I’m almost 11 weeks post surgery?
I hope everyone is having a relaxing Sunday. It’s lovely and sunny but cold here.

@LeftBoobGoneRogue , I'm 6 months away from my last radio appt. Boob is still a bit lumpy and hard and I expect it to remain that way for quite a long time. It hasnt changed much in the last 3 months or so, but the effects of the radiotherapy can take up to a year to settle down.

I've just had the unaffected breast reduced to match, and this boob looks more natural, with a softer rounder shape - the cancerous one practically has corners 😁. My surgeon did warn me that this would happen, and that they will age at different rates (I'm 55). She has suggested that some time in the future, she could put more fat into the unaffected breast as it will likely become smaller than the irradiated one. We'll see how it goes - not sure i want more surgery!

Evening all, how is everyone?

My brain is fried from chemo this week, fatigue has hit hard and I’m in for the last PC tomorrow!

waving to everyone and hoping everyone’s having a nice week as much as we can whilst going through this shit show!

I’m really poorly round 4 is horrible, went bed early with tiredness now in pain.

Hiya Cannae ! I’m back at work struggling through this horrible waiting time in between biopsy and verdict as to what happens next Everyone I work with is lovely and we have a good laugh so it takes my mind off ( most of the time) and xanax has become a new friend!

oh that fatigue I know it well it’s hard to describe if you’ve not been through it. I was speeding around with no sleep and a big red face the first couple of days and then would crash like a huge blob. What’s PC?( sorry it’s probably my xanax brain) Do you have a week or so in between chemos when you feel a bit more normal?

Did you start your letrozole and how’s it going
LeftBoobGoneRogue ?

Hi to everyone else too

How many round are you having? I had six every three weeks ( first time around ) I remember the 4th being hard too So sorry you’re in pain is there anything that could help relieve it?

I collected my letrozole late afternoon but haven’t taken one yet, because I need to read the patient information leaflet first.
I also had my follow up call from the radiotherapy team checking how I am. Apparently the vague nausea I’m feeling is related to fatigue. One end of my WLE scar is a bit red and sore so I have to keep an eye on that and she suggested keeping my E45 in the fridge to cool the boob. Still getting some stabbing pains in the scar area especially when I do cleaning and cooking.
Sorry you’re feeling rough @littlebilliie@cannaecookrisottoi hope that wears off quickly.

The fatigue is just so odd isn't it? It hits like a train. I hope you all can get to rest and relax as much as possible

I hope final paclitaxel goes well today @cannaecookrisotto Thinking of you x

Hope you and your daughter enjoyed Wicked @FcukBreastCancer.how is her rash now?

I hope the pain eases @littlebilliie - do you have decent pain relief? If not please get some from your GP.

I'm on my seventh day of Letrozole now @LeftBoobGoneRogue but as I'm still having weekly chemo I have no idea if it's giving me side effects. I will be week 13 of pax this week and the neuropathy is really starting to affect me. I can barely type and my fingers feel like sausages which have been hit by a mallet. My toes are a little better than last week weirdly.

Hoping just two more weeks of chemo before I move to Ribociclib. I should also start the Zoledronic acid infusions this week (with chemo). Also hoping that they let me have chemo this week and don't decide that the neuropathy rules me out.

Can you use an icepack on scar area? E45 in the fridge is a good idea, hope it helps.

I had tamoxifen for 10 years ( two sets of five) and a couple of years of letrozole. For me it was mainly hot flushes really nothing that noticeable .

@Ventress neuropathy 😡 they didn’t give me the last weekly dose of taxol ( out of 18) cos of my feet . It took a while to get back to normal afterwards and I still have a tiny bit of it slightly 8 years later but mainly really fineGP gave me vitamin D after chemo had finished which I reckon helped me and walking once I was up to it with good supportive trainers really seemed to help ( though that might have just been my imagination) Hope you’ll be able to have your treatment Sending best wishes

@Ventress had a scary few days as dd vomited twice Sunday night unexpectedly. However, she is now recovered and at school today. Pin prick rash still there but faded due to her being off her feet. Her other rash is going with the cream I'm using. I'm hoping it will follow it and go away. I was keeping a very close eye on her. Saw a thread on here last night about shingles in kids meaning high risk of cancer. She had that in Feb and it's one of the reasons I'm worried about her. Then I started a Google argh.

Think I'm still recovering from a sleepless night looking after and worrying about dd.
Got my blood results for fatigue and were all ok. Iron was a bit low for me so hoping some iron will help (ferritin 37).

Need a few days off from worrying 😟
Having lunch with colleagues today and then non exciting day of getting car to MOT tomorrow.

Hope all those feeling rough get a better day and some sunshine where you are.

There are so many new people on this thread, and as lovely as it is to meet you all it absolutely sucks you're here and going through this.
A little about me, I'm 40 have 2 kids both at uni. Sons having a bit of a rough time, we also have a nightmare rescue dog, we got her just a couple of weeks before I was told I had cancer so a difficult dog has been more difficult as training has been challenging.
I have head and neck cancer so had a really intensive treatment of surgery to remove the main tumour followed by 6 weeks of daily radiotherapy and weekly chemotherapy. I now have nerve damage inside my mouth, and whilst taste had gone, then returned and everything tasted of salt in the last few days other tastes have started coming back and I'm doing my best to eat foods I normally would.
The other side effect is my salivary glands aren't producing enough salivare so I'm constantly sipping drinks and need to add moisture to all foods. I managed a sandwich with masses of butter, cottage cheese, coleslaw and ham just to make it wet enough to deal with the bread and ham!!
Hopefully none of you have these side effects because they won't be microwaving you're neck and mouth but I am happy to offer advice based on what I've experienced with food and drinks
I'll find out end of January if this has worked, if not, immunotherapy or more surgery will be next.

I know what you all mean about the tiredness, I seem to be able to do something one day and the next the fatigue hits. The other fun side effect is my snoring, If I started speaking Latin noone would be surprised, I sound like a demon from a horror film!! Fell asleep on the sofa and my poor husband who is the least tech savvy person ended up connecting sound cancelling headphones to the TV to drown me out and watch a film. He was so proud of himself for a) recording me snoring and b) doing something techy without me, I can't have him get too independent, he needs to think he needs me!!

I'm learning to pace myself, I'll do one thing a day and make sure the rest is set aside for rest, although my rest time now seems to consist of following the dog around with a cloth because she's having her first season. She's like an incredibly moody teenage and extra growly...fun!

My son, hummm not really sure what's happening there. He visited his sister this weekend at uni claiming he wanted to 'talk about our traumatic childhood and why we are the way we are' except all he did was profess his love for her flatmate and keep pushing until he was told to leave....he's totally ignored me but is messaging about Christmas on the family chat so my assumption is he's coming at this point....my daughter is concerned he's drinking too much, and as I can't drink, she's not bothered about drinking and my husband won't drink alone we've agreed to a dry Christmas. Sons not aware of this plan, but alcoholic drinks will be removed and plenty of soft drinks purchased...I'll report back if there's a mutiny 🫣

I wish you all a lovely calming day

@ForestFlowerFairy blimey it never rains but it pours does it? Dealing with all that treatment then tricky times with your son. My two fell out just after my treatment finished cos of a silly argument about nothing much ,clearing away dishes or something daft ( probably it was really the weirdness of the whole year and seeing their mother spending loads of time lying on the sofa ) , and didn’t speak to each other for a whole 12 months which broke my heart and was difficult cos we were still all more less based in the same house. They are now back to being close phew. At the same time work stuff was going on ( but tohell with that) .At my grand old age of 59 I’ve come to the conclusion that this is some sort of pattern that life has, it throws it at you more or less in one go and then the brighter days come along all of a sudden .
Haha good on the non alcoholic xmas plan !! Get him lots of chocolate instead 😅 oh and I snore like a dragon these days and have done for ages. I don’t actually know how I’ve still got a DH 😅

@ForestFlowerFairy Oh and we’ve got a rescue cat who turned up on our door step exactly two years after we lost our beloved elderly dog. He was only a youngster and in a bad state but now he’s a chubby healthy gangster !

Thank you @Nonamelass - you have reassured me that my sausage-like mallet hit fingers may not be forever. I had a Vit D test with my usual pre-chemo bloods last week. I have a bottle of high dose Vit D in the bathroom cabinet for when I'm given the go-ahead to take them.

I'm glad your DD is feeling a bit better in the last couple of days @FcukBreastCancer I hope you have a good lunch out with colleagues (perhaps a pint of Guinness to aid your Iron levels?!)

@ForestFlowerFairy how is your puppy doing apart from the teenage angst? Is she less volatile? Probably shouldn't call her a puppy now that is having her season. Will you have her spayed after this?

I'm sorry to hear your update about your son. He sounds as though some stability at home, in a dry house, surrounded by people who love him would be helpful to him. An afternoon of making mocktails together could be fun. I hope he comes home at the end of term as planned.

Has your dentist given you high fluoride toothpaste? Mine said that because treatment causes dry mouth, and bacteria is killed by saliva, that higher fluoride toothpaste is beneficial to keeping teeth healthy. It tastes horrible but then so does everything else!

Blimey I hate how many new members are here but I’m really glad you found us ❤️. I find it really helps to talk to others in a similar boat, other people who don’t have cancer just don’t get it so they. I hope you all find the same peace here too. If there’s anyone lurking, please do feel free to drop a line and say hello. We’re here if you need a handhold even if you’re just going through tests, biopsies etc.

The chemo fatigue is a different kind of tiredness isn’t it. It’s like having lead in our brain and limbs. I tried to make a coffee earlier using the Dolce Gusto thingy and pressed the start button but failed to put my cup on the tray. So came back to a coffee flood!!! Was shit because then I had to clean it up

Halfway point for me today, I slept through most of the chemo, woke up having been disconnected and 30 minutes left on my cold cap!! So that was a win.

Came home, had a shower but the lovely cleaning lady must have nudged the temperature twisty nozzle, but it’s a bit dicky and gets stuck and I couldn’t turn it down. Now, I’m one of those weird buggers that can’t have a bath because it’s too hot, nor can I have a hot shower so I usually have a lukewarm setting… anyway, I had to sit in the bath with the shower on trying to not scald myself to death (it was probably a reasonable temperature for normal folk). Got out feeling like I was wearing a 3 piece scald!!
So that was my daily excitement.
Work seems to have gone really busy, which is a good thing because I’m self-employed but a bad thing because I have cancer and really cba. So I’m thinking of training up my sister to work for me on a Friday. She has a similar background to me so if I can close the gap between her current and required experienced it will be good for both of us.

@littlebilliie
I’m sorry to hear your feeling so poorly, have you let your med team know to see if there’s anything they can tweak or add with post-meds to help you? Might be worth mentioning

@Nonamelass
Ugh, the waiting period really is hellish, have they said when your results will be? I’m glad your colleagues are lovely, it does help when we have supportive people around and work has been a good distraction for me, it sounds like it is for you too :).

PC is Paclitaxol and Carboplatin - the chemo im on. I’ve done the first 12 weeks as weekly, next week I move onto the EC (Epirubicin and Cylophosphomide) which is every 3 weeks… and probably gonna kick my arse!!

@LeftBoobGoneRogue
I’ve heard a lot of recommendations for a cream called MooGoo. I’m not sure if any of the old gang are lurking and can comment on it too but have a read up on it. Apparently it’s bloody marvellous!

@Ventress
It does hit like a blooming train, I’m sorry to hear neuropathy is giving you so much jip. Fingers crossed that subsides once you finish the Taxol in 2 weeks 🙏.

@FcukBreastCancer
Fingers crossed the pin prick rash also buggers off! It’s one thing when we’re worried about ourselves but something entirely worse when it’s one of our kids!! I didn’t see that thread about shingles, but try not to Google. I Googled my type of BC shortly after being diagnosed and absolutely shit my pants. The reality is it’s now highly treatable and Google/stats hadn’t got the memo yet.

Lunch with colleagues sounds nice!

@ForestFlowerFairy
It’s wonderful to hear your taste is coming back and you’re able to eat your normal foods! Just in time for Christmas!
When in Jan is your appt?

I’m laughing at your demonic snoring , and your very tolerant DH!! Mine would be giving me a good poke to shut me up…

A dry Christmas sounds like an excellent idea and it’s your house so your rules…
Sorry to hear your fears of son drinking too much, another worry you don’t need at the moment. I can’t say anymore than what the others have already said, and @Ventresspost about the stability of home with people who love him is excellent.

I’m also going to get onto my dentist about some flouride mouthwash as I’m still suffering with a mouth like Ghandis anus!!!

@cantbelieveIamhere
How are you getting on?

Sending hugs and peace to all.

@Ventress I’m not gonna lie doing up tiny buttons is a bit of a challenge sometimes but that’s about it fingers wise. Feet ( not actual toes) were more the concern with me. Now sometimes it feels like Îve got a sock not pulled on properly under my foot if you see what I mean. I tend to wear good comfy shoes there’s loads of really nice trainer or shoes in different makes, a bit pricey but worth it. I save cheaper high heels for special occasions 🤣. But I live in a capital city and commute / walk to work so wouldn’t be wearing heels much anyway.

Oh @Ventressi wish you hadn't asked about the puppy...5pm today she growled and lunged at my daughter (19, not a child for anyone new) she was stroking her, dog stared into space then just went nuts, I pushed daughter out the way, husband stood between and she flew at him in her panic, his arm is a bit gnarly and she got a finger as well.
Left dog in the room secure, did my best to clean him up and I've now got her safe in her crate.
He's refusing to go to the hospital....

However, we have all agreed this is the second bite and we're not equipped to give her what she needs.
Unfortunately by the time I cleaned him, got her safe Dogs Trust were closed
I'm going to have to make the worst phone call ever tomorrow and not crack and agree to keep her like last time (again, for the newbie's, she bit me mid treatment, we put it down to stress, we got her right before my diagnosis)

So that's a dog we must re-home.
A husband in tears because we're rehoming.
Son who I'll need to call and let him know, he won't take it well

Thankfully my daughter is in full agreement so me and her are going to have to be the grown ups until this too has passed.
So yes @Nonamelass it really does pour, this feels somewhat like I need to build an ark, anyone fancy sailing away from everything?!

@Ventressyes to the high floride toothpaste, it doesn't actually bother me in terms of taste thankfully
Being able to drink again is also helping hugely with the dry mouth and I've set up a humidifier next to my bed to try to help.

@cannaecookrisottoso pleased with your chemo win today, and that you are at the halfway mark. I do hope the next half is as smooth as today's session.
I have the mouthwash as well as toothpaste but thanks to the mouth ulcers still I'm refusing to use it
Not sure on Jan appointment, all I know is they can't do any scans until 3 months has passed, which takes us to the end of January so I'm hoping for the best but dreading the wait, at least when I was in lots of pain I was too miserable to think past counting down to more pain killers, now I've a good 7-8 weeks of overthinking!

@cannaecookrisotto god yeah it’s hellish, your body might be able to wait but your mind not so much !!! See oncologist on the 17th for results.. it’s been slightly delayed which almost caused me a meltdown… !!!! Ah ok for PC . Oh I know that feeling over not actually being able to do anything ( re the coffee) literally throwing a pizza in the oven was an effort !( Our freezer is in our basement so I also had to go downstairs to get it in my defence)

@ForestFlowerFairy I am so sorry about the rehoming and understand how heartbreaking it must be , but for what it’s worth I think you’re absolutely doing the right thing. For her and for all of you. I know Îd be devastated too, but you have to do what you have to do.
oh yes that Arc sounds good!! Can we go somewhere nice and warm? but not too hot (and it needs a built in swimming pool and comfie sun loungers and a few good box sets please)

@Ventress a month or so after my final chemo, I developed some neuropathy (nothing at all during chemo, for some reason). My oncologist recommended that I take a vitamin B complex, as it's been shown to help. I've been taking it for about 9 months and the neuropathy has practically gone. Obviously, check with your oncologist if you can take it!

@ForestFlowerFairy that is so sad. You’ve had a trying time and really done your best but the hound is not right for you guys now.

@Nonamelass sorry you find yourself here. This group was boundless support for me through 3 surgeries and 16 chemos last year, ending this March. I was unlucky twice with them not getting margins during surgery 🙄. I’m currently on anastrozole and have just started Ribocyclib. I have a zol infusion every six months. I’m resigned to it but sometimes am wtaf has happened to my life?!

Oh no, I’m so sorry @ForestFlowerFairyWhat an awful experience. I hope your husband is okay but agree that he should be checked at the hospital and make sure his wounds don’t get infected. I agree that you are doing the right thing but I know that you all must be feeling so bad about that decision. Virtual hugs for you all.

I understand what you mean @Nonamelass. Good shoes are a must! I loved your post about your rescue cat. That is so beautiful. We lost our gorgeous dog in June, and then I got ill shortly afterwards so I really haven’t processed her loss at all yet. I realise that’s not healthy. Perhaps I need to borrow cannae’s psychologist?!

Training up your sister to help with your workload sounds inspired @cannaecookrisottoAlthough working with family could come back and bite you. I’m not sure I could work with any of mine (although that probably says more about me than them!)

Showers and baths are not supposed to be stressful! I hope your poor scalded skin is feeling better now. DS likes a shower which is practically molten. You two wouldn’t get on!

Congrats on finishing the pax and getting to halfway! I hope the EC won’t be as bad as you fear.

Thank you @BatshitCrazyWoman- I will check with the oncologist about vitamin B complex.