All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Chemo, colds and GCSE's in our house. Myself, dh and dd2 have colds. Last night my temperature had climbed to 37.9, rather too close to the 38 go to A&E level. Thankfully it then dipped back to the mid 37's so I got to sleep in my own bed, and is 37.3 this morning
So now we need to prevent dd1 from catching it with a full week of exams next week.

Rust and mishmash I'm sorry you are both feeling very anxious. Rust I think your anxiety will lessen when you start active treatment. I think my anxiety will ramp up when I finish active treatment. I only have 4 more weeks of chemo, and I think the doubts will start flowing fast once that's over even with a few sessions of rads to add to my treatment and herceptin for a year.

Just echoing the sympathy for those feeling anxious. I'm nearing the end of chemo and now feeling anxious again. Please tell me this eases over time.

boobz (or anyone else into their exercise) can I ask how soon you got back into it after treatment? I really want to start doing more when chemo has finished but not idea what is realistic.

Rust and Mish I think the anxiety is all part of the process unfortunately. Once treatment started I felt better about it as I felt that although chemo isn't great at least something was being done to deal with it. I also had a lump and bruising after my biopsy, mine lasted about 4 months and really only disappeared just before I had surgery.
Mysilly sending lots of anti cold vibes your way for all of you.
I'm off to see my surgeon today as the wound that got infected still isn't healing not sure if they can do anything to speed it up, would be good if they could as they won't start rads until its healed apparently.

Waving to anyone I've forgotten or who is waiting for results!

Hi Sandwich. This is going to sound like a steathboast - it's really not...

I used to do HIIT 6 x a week pre chemo (Insanity mainly, but also did Barry's Bootcamp when in the UK). When I started chemo, for the first 5 months I did 4 x HIIT a week (and a 7am Barry's Bootcamp class on the day of chemo, before starting the actual chemo at 10am...)

I went down to 3 x a week in the last month as the weekly flights from Rome to London, and the tax chemo, was making me more tired.

I then got back right back into it after my last chemo for a month before I had my surgery, then had to take 7 weeks off after my MX. I had the op on 12th Nov and went for my first run on the 28th December. 5 days later I ran 10 miles as part of my marathon training (it wasn't supposed to be that far, but I had to start at week 5 of the training program to fit it all in by April 10th when the Rome marathon was!) I then combined 4 training runs and 2 HIITs a week for 14 weeks to get me to the marathon itself.

So in a very long winded way of answering your question, I never stopped I just cut back by about a third. I think this was key to me not having any side effects from the chemo. I was like a woman possessed when I got to the 28th Dec and my surgeon said I could exercise again - I had so little control over the cancer and the outcome, but a lot of control over exercise, eating and my fitness post cancer, so I have probably gone overboard. But then I am an all or nothing person.

Wow boobz! Hats off to you. My C25K plan is probably doable then 😉 (I was quite ill before diagnosis and haven't been able to do much, just back into walking and yoga). I do think control is part of it for me too.

Anyone got any suggestions as to how I can occupy myself for the next 10 days before I see my specialist? I still can't talk properly following all my seizures so can't go to work (I'm a secondary teacher). Previously I was spending much of my free time making plans for pregnancy/new baby but as I don't know if we're going to be able to sensibly continue the pregnancy I'm trying to avoid thinking about that. So that leaves me at a bit of a loose end and I just don't really know what to do with myself.

LittleGrey do you like sudokus or other puzzles? Reading? A good series on Netflix or NowTV? Knitting or crochet? Colouring?

I'd recommend not taking on any big projects, but try and have lots of little activities that do not require too much concentration and that you can pick up and put down whenever you feel like it.

Try and get out for a walk every day if you are able. Fresh air really helps and it's good to stay active.

I was where you are a few weeks ago. I had two weeks between being told they'd found something probably cancer, and having a definite answer and a plan. I found distracting myself was definitely the best way to cope. I finished a blanket I had been working on for Woolly Hugs, I cleared out some old clothes and books, that sort of thing.

I promise it really does feel easier once you have some certainty. I hope the next ten days pass as quickly as possible for you

Sandwich good luck with C25K. I did it a couple of months after chemo finished. I was quite ill for a long time, but the running made me feel stronger and more in control. It was actually really bad for my nerve pain so I have stopped now! But it feels good to know that I could once run 5K

If you find that the running is too much to begin with, you could try just walking first. I was quite ill for a couple of months before Christmas and didn't leave the house much, so my fitness really suffered. I have been gradually getting fitter again, and I have been using my Fitbit and building my steps up a little each week.

Not posted for a week! Had 1st Paclitaxel last Friday and felt better for a few days, but then that TMI constipation reared its ugly head and I felt miserable. Got that sorted - ended up with diarrhoea (definitely TMI) then found I couldn't have chemo this week as, for first time, neutrophils were too low, so only had a blood transfusion to bring red cells up to "mediocre"
My temp replacement started this week, and I met her on her first day. Hope to get in again this week for more "training" and because some professional colleagues have asked me out. Can otherwise keep in touch by phone and by e-mail ( we get each other's and I have full remote access)

Welcome to new people - sorry you have had to join us.
Best wishes to the regulars, wherever you are in waiting for results/ treatment. Special best wishes to Rust, baby Rust and the whole family!

For those wanting some occupation during the waiting period/treatment, as Leslie says, don't take on a big project but go for stuff you can put down easily and is interesting but not too demanding. And nice walks really help too if you aren't quite as fit as Boobz!

Hello I'm new
I have breast cancer
Just had 2 lumps out yesterday mastectomy coming unless tests say no point
Resukta Thursday on senitel node and week Tuesday genetic results

Diagnosed on 9/5
I'm crying a lot. Feeling sick post GA yesterday and fed up

I've got to tell my mum who is elderly and I'm in 2 minds about whether I should or not and we don't have an easy relationship

Its all 'Me me me' at mo

I know. I'm really selling myself!!! lol x

Hello ipso . So sorry about your situation, but you have come to the right place. Your feelings now are very normal and understandable. We have all here been there and some of our newbies are where you are right now. Of course you are upset and anxious. I have breadt cancer and have had lumpercomy, chemo , radiation therapy and am now taking Tamoxifen( hormonal therapy). It will be one year this June since I found my lump and the feelings are still fresh and very vivid. As regards your mother, you alone know if that would help. I personally have kept my cancer from my mum and wider family but because I do not want to worry her as she is almost 80 and quite depressed as it is. If you think your mother with whom you say you have a dificult relationship may complicate matters for you and add to your anxiety then consider waiting. If you think telling her would make a positive difference then maybe this is the chance to patch things up between you?
I know this probably sounds strange now, but once you start the treatment you wil start to feel more in control and composed. I know waiting is the absolute worst part though. Once you get your resukts you can start to focus on the treatment plan your team wikk draw for you. They will be aiming to guve you what is best for you, so always ask and tell them what you need to know.
Here you are welcome alays to ask or just have a good rant. We do not judge here and we know whatbit is like, unlike people who though kind and symoathetic, do not really get it.
Best wishes for reassuring results.

Lily good to hear from you sorry you've not had the best week. I'm glad your temp has started though that must bring mixed feelings for you

Ipso welcome, I agree with Royal that what you are feeling is totally normal and you will start to feel better once you get the results and treatment plan. The GA will make you feel low for a few days too do be kind to yourself. Keep posting about anything and we will try to help

Hi Ipso, It is a tough time waiting for results and it takes time to get your head around it all. I was diagnosed in March, a month after my mum died and I agonised over telling my father - I didn't want to worry him and we also don't have an easy relationship. In the end I did tell him and I'm glad as he would have been upset with me if I had kept it from him. However, only you know what will feel right - look after number one, yourself, and you will know what is the best thing to do for you.

I had a lumpectomy 2 weeks ago and am waiting on the results of a further test to determine if chemo needed - will know Tuesday week. There is a lot of waiting but I've found that has helped me get my head around things in between the wait times rather than being launched straight away onto the roller coaster.

Rest assured, you're not alone

Best wishes to everyone getting results this week. Lily I hope your neutropenia is short lived and you can get on with your treatment.

It's a chemo day for me, but I guess I will need to check in with my helpline because my temperature keeps going up a bit in the evenings. Not to 38, but last night it was 37.8. Hopefully I will still get my treatment.

Hope you get the chemo today silly dog and that it all goes smoothly

The plan is to isolate me in a side room, check my blood, and if all is ok to do the treatment. I think it will be fine. It's quite hard to avoid colds when living with children.

Morning all, been a bit tied up this last week - DS1 turns 12 on Wed so we've been doing birthday things as I have chemo on Fri so next weekend is a wipeout He's enjoyed himself but I still feel a bit bad that I'll leave for the hospital for bloods on Wed before he leaves for school. There's always the chance it'll be delayed again by my pesky neutrophils I suppose and I'll get to enjoy the Bank Holiday!
Saw my oncologist last week, he was surprised by the tinnitus on my chemo drugs (TC) and suggested they could reduce them if it's still bad this week. There are risks with reduced chemo though so need to think about that - if I have to have chemo I want it to be it's most effective. Also a tweak to the anti sickness meds to make that more bearable.
Welcome to the newbies - sorry you have to join this awful, unpopular, (but welcoming and supportive!) club. As everyone says, results are the worst bit, I'd pretty much shut down by the time I got to my staging scans but been much calmer since and trying to get on with it.
I have discovered why the onc is so keen for me to be post menopausal and go straight to letrozole - it's because my cancer is lobular not ductal. He wants me to have an extra anti osteoporosis drug with my last chemo (this has flu like and nausea side effects - to go with the chemo, bleargh) then start on tamoxifen during rads, and assess my menopausal state after that to clarify if I need ovarian suppression... so that's my year pretty much planned out.
mrs have you got your gynae apt yet?? I hope so.
fresta How is your arm now?
mysilly hope your temp doesn't delay your chemo.
lily glad you've recovered from the last chemo but how annoying to have this one delayed.
rust thinking of you, hope that baby is doing well
My brain has stopped working - I do jigsaws for brain neutral activity - so best wishes to everyone waiting for results or procedures.
Waves to everyone else.

Hi pepper, that's very interesting about the letrozole. I find it a balancing act, asking questions because I like to understand but being afraid of hearing too much. It's always a shame when this gets in the way of family life, my DH celebrated his 50th by taking me for rads. Not exactly what we had in mind. I'm glad your little boy had a good time.

I have an appt for a pelvic scan this afternoon, but still no appt to see a consultant for a follow up. It's very frustrating, the secretary sounds lovely , promises she'll sort it and will ring me back, then nothing. I'll speak to the radiographer about it later. What she sees will give me an idea of how much I need to push further. Very frustrating though, made worse by the fact that DH is winging his way to California again with work. Jealous - who me?

pepper, my arm is still swollen and although the edema is very localised and just the inside of the wrist and the inside of my upper arm it does seem to be getting worse. I've taken to wearing a support bandage on my wrist which has kept it under control a little. The cording is MUCH better though and I hardly notice it now. I have an appointment with the lymphoedema people on the 8th June. Also got my radiotherapy initial planning appointment this Friday. Hope you manage to enjoy your DS's birthday!

MySilly I hope you can have your chemo.

Lily nice to hear from you, hope you have a better week.

Welcome to the Newbies too

Hi all.
Not had an appointment letter yet and it's been a week since the doctor sent the referral off to the breast clinic. Should I chase this yet or would you leave it a couple of days?

Hi chewing, I'd be tempted to call. There will be a certain number of breast clinics a week and you don't want to miss the ones this week. I know it's very frustrating for you but experience tells me that sometimes you just have to fight your corner.

Just back from my pelvic scan and the two ovarian cysts have gone. The lining of my uterus has reduced from 17 to 14mm, also positive I hope. But I still need an appt with an actual gynaecologist so I'll be back on the phone myself tomorrow.

Fresta, sounds like you're having mixed results with your arm. So you're off for your tattoos on Friday, hope that all goes well.

Ipso, how are you feeling now? The waiting is horrible I know.

Mysilly, hope your chemo was able to go ahead.

Leslie, have you planned a holiday before your treatment starts again?

Hello to everyone else, lots waiting for results at the moment, the worst time.

Thanks MrsRhod - I'll get on the case (I have form for 'fighting' my corner over other things )
Glad to hear about your vanishing cysts - sounds very positive.

Just finishing chemo now in a side room. I had a small lecture about not calling in my temperature when it was 37.9 but actually my bloods were fine and so it's just a cold.
Chewing I agree it never hurts to chase appointments.

Hello all. Mrs, good to hear the scan showed some positive signs. Hope you manage to see the doctor for further reassurance.
Mysilly, good to hear you got today's chemo over and done! How many more now?
Fresta, sorry about the arm but hey good to hear no more chording! Are they going to tell you what the fluid build up in your arm is now? Is it affecting your agilit much? Hope they sort it out for you.
Pepper, many happy returns to your DS. I can imagine the frustration you have felt.
Lily, sorry you had a couple of rotten days.
Waving to everybod else.

Glad to hear the cysts have gone Mrs Rhod and hope you get that appointment soon

Glad you were able to have the chemo silly dog hope you have few side effects

It's quiet hope everyone's ok

Morning all, another close shave for my bloods this morning , had my review and white blood cells too low again, but this time they were persuaded to send me home with 2 extra GCSF injections and I should be ok for chemo on Friday. I think they may reduce my docetaxel anyway because of that and the tinnitus.
Just heard that another close friend has been diagnosed, which is really grim she seems to have been told it's very likely but awaits full biopsy results, her mum and aunt have both had it.
In good news I went out with some girlfriends from work last night, and even though I felt a little guilty being signed off and all that (if the kids are too ill for school they don't get to go out and play!) it was so nice to just go out, enjoy and have a gossip, and my taste buds have perked up briefly so I enjoyed my meal as well
Waves to all - DS1 had a lovely morning for the 30 minutes we had to celebrate his birthday!! And his last present has just arrived so I can wrap it up before he gets back from school last minute moi?
Actually - quick question - had my rads appt through and I have a similar delay to you fresta so my pre scan/tattoo thing is a month after my last chemo and my first rads is 3 weeks after that (but the tamoxifen is immediately after chemo) which isn't my question at all!
Which deodorant have you used through rads? It says aluminium free, I have just had a Salt of the Earth one delivered and it smells like cheap air freshener to me!!