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

Hi everyone. I can’t keep up either hope you are as well as you can be , not too tired by treatments or by the torturous waiting for results / treatment plans

@cannaecookrisotto I know biopsy results were supposed to be sent for my appointment tomorrow with oncologist but appointment has been put back til next week 😳 .I’m going straight through the oncologist cos I’m still under the hospital from the last Tit event in 2017 so that’s fortunate I suppose?!!? Did I tell you I’m in France? So it’s a bit different here.
Hope you got your treatment and sorry about the nose bleed !! That’s all you need !

@FcukBreastCancer How did the the appointment go with DD , did you manage to see blood results?

@cantbelieveIamhere @dancingwhilstfacingthemusic It’s knackering. No two ways about it. I too am in total admiration of those coping with young children as well and those working at the same time as doing treatments 💕

@Inthebasement I didn’t work during treatment. I suppose I could have during radiotherapy ( which for me with breast cancer wasn’t too hard) but not chemo

I have felt completely exhausted today and that’s without any treatments. I keep almost forgetting about it but now I know biopsy results will be in the mental strain is probably draining my energy.😉

Hope you are all having the best evening possible, best wishes to everyone.

Yes my dd's consultant put me out of my misery on blood test for her. Blood glucose was higher side of normal. (We also had a letter in post to say vit d low.)
He suggested we test her for ceoliac disease, so we went off to a different hospital with a peads department. All very efficient and she was very brave. Blood glucose was repeated and was normal. Phew.

Ceoliac disease kind of fits but I do hope it's not that. We have a family member with it so dd is well informed on the restrictions it poses.

Both kids seem to be getting colds. Oh joy.

@cannaecookrisotto nose bleed sounds quite a scare for you! Hope no repeat.

@ForestFlowerFairy I hope you had a calmer couple of days.

@Inthebasement I always found my nurse better at answering questions, but my consultant was quite rubbish. I have good sick pay at work and I'm taking off a decent amount of time with their blessing. No problem getting a sick note so far

@watchadewin sorry you've had to join us. In my first few days I did take some sleeping tablets, is that an option for you? I hope tonight is a better night.

@Inthebasement
Is it bad to say that its nice to have someone on here with the same cancer? Obviusly hate that you have it…but you know what I mean. Been trying NOT to google too much because there are so many and they vary so much in prognosis after 5 years. Just trying to enjoy my last few days of not officially being diagnosed, if that makes sense. I can’t control what I’ll be told on Friday…so I’m aiming not to let it ruin every day until then.
Can I ask how often you have Chemo, and also how symtomatic you were before you found out? My only real issues are extreme fatigue, a feeling like I’m constantly on the verge of getting a virus, and a few digestive issues. I honestly thought it was just perimenopause/being a woman with kids and a job and doing too much.
How long do you have to wait after your last Chemo to know how well its worked? I’ll have my fingers crossed for you!

I know exactly what you mean and that's why I posted.

There's no point googling things like survival rates because the stats pre-date the latest treatments so I know I have a better chance than the stats suggest.

My symptoms were abdominal pain and swelling, feeling full after eating a small amount and constipation. First time I went to the GP I was told it was just constipation and take laxatives. Went back because the pain got worse and I started losing weight. Thankfully the Dr I saw second took it seriously and sent me for blood tests and scans. Thought it was gynae at first. I started a thread called something like "Probably ovarian - cancer anyone give me a hand hold" in the unlikely event that you want to follow my whole journey.

The chemo I'm on is Pola-R-CHP. Six sessions at three-weekly intervals. PET scan at the half way point showed still some active disease, so obviously I'm worried about that. I will have another scan after the final chemo. Should be two weeks after but that will be Christmas so it's likely to be early January and I will find out some time after that.

Ohjoyohbliss

Exactly the same symptoms that took me to the dr. They biopsied a lump on or near my liver but the dr who did the biopsy said it might be a lymph node…
Did anything show up in blood tests?

Fingers crossed its all gone for you after your last sessions.

I’m off to read your thread now. Thanks for replying.

Annnddd lost another post!!! When I accidentally scroll back on my phone with my thumb it deletes the entire thing grrrr.

@ForestFlowerFairy
It would be my pleasure to listen to and support your friends podcast! I’ll make my DH and mother listen too!
The Christmas BBQ course sounds fabulous, really lovely that you’ll be able to enjoy it. Sorry to hear about your salivary glands though, is there absolutely nothing they can do?

@Ventress
Do you have a scan or appt tomorrow (or today now rather)? I have the 10th burned into my brain for you, or is this my chemo fog striking again? If it is today I’m sending you a huge handhold, do let us know how you get on and I’ll be checking in afterwards.

The Manuka honey can be used on wounds too :). It comes in different strengths, apparently the higher medical grade strengths should be avoided during chemo, so I went for a low 10UMF to help with my sore mouth, throat and boost immunity. However I find it quite vile, so prefer the sore mouth at this point. My mum (who loves honey) says it’s delicious. I got mine off Amazon, the brand is “Steens” and it was about £20 I think. The higher the UMF the more £££.

@FcukBreastCancer
So glad to hear your DDs results were reassuring although do hope it’s not ceoliac disease. We will all be thinking of you on Friday too for results day. Surely they’ve got clear margins now. If they don’t let me know and I’ll send your surgeon a glitterbomb in the post!

@watchadewin
I keep my journal in the drawer next to my bed. Then close the drawer on my worries. Also handy for the 3am wakings when you can get the journal out quickly and eject the thoughts.

@Ohjoyohbliss
It’s fab that you are there to help @Inthebasement, I had similar support at the beginning of my treatment and it was such a comfort.

@Inthebasement how are you holding up? We will be thinking of you on Friday. Like @Ohjoyohbliss says, stay away from Google, it’s out of date with stats and data. If I Google my cancer (I’m triple negative BC), my prognosis is terrible when in fact new treatments have come out and it’s much more treatable than it used to be. But Google had me scared shitless! So now I only read peer reviewed studies on the subject by reputable medical journals such as Pubmed. And always remember you are not a statistic, every diagnosis is personal so don’t give much thought to these 5 year survival stats. I know it’s easier said than done, I was the same.

@cantbelieveIamhere
As long as we get to bedtime and the children are alive and fed I class that as a win . I have a lot of help from my mum otherwise I really wouldn’t be coping. Especially at the minute with this virus, I was sweating wet through this morning changing a nappy! Though I was going to have a bloody heart attack but mum came to my rescue. She’s a good egg.

I’m really pleased your side effects are less shit now they have the nausea under control. I’m much the same with the mole analogy, I often refer to myself as a couch hermit.

@Nonamelass
I did read up thread that you are in France. I do love France. I used to visit often for business in my old job as that’s where our corporate HQ was. In Levallois Perret. Hope I’ve spelt that correctly!

“Tit event” also made me chuckle. How annoying they moved your appt to next week but good that it’s directly with the oncologist. They brought my results appt forward after my biopsy by over a week. I didn’t suspect anything though because during the scans and actual biopsy they told me it was a type of cyst and “nothing sinister”. Yeah righto.

@dancingwhilstfacingthemusic
How long after finishing chemo did you start to feel more normal physically? I’ve just hit the halfway mark and the end is in sight!

Waving to everyone else, I’m sorry if I missed anyone, I lost a whole post and now I don’t know who I replied to and who I haven’t so my apologies!

In my news, no news to the contrary so can assume chemo is going ahead today. First EC. A bit nervous but has to be done so the show must go on.

Baby fatfat started crawling today, her timing impeccable when I’m feeling so gross. But was so lovely. Just popped her down to go and make her morning bottle and she just scurried away! She’s been on the verge for weeks now but something must have clicked and off she goes.

Now she’s obsessed with the mop bucket in the kitchen. She’s like one of those wind up toys, as soon as I put her down she beelines for the kitchen (gets that from me). Que emergency Argos order for multiple baby gates before I find her eating the cat food or something.

My throat is really inflamed, I don’t know if it’s treatment related or virus related but I sound like a 60 a day smoker and it’s taking a lot of effort to talk for any length of time. My heart rate is also high whenever I exert any kind of effort. Climbing the stairs puts me around 132bpm. So I’m just trying to rest as much as possible.

@ForestFlowerFairy I thought you made perfect sense. I am also so glad your dh stepped up. It’s so hard taking a pet in to a rehome or especially to be pts. It’s great to hear that your “pink nosed terrorist” (love the name!) will continue to be loved. I can relate to finding toys and so on. I found a squeaky yellow football yrs ago that is still in my dresser drawer. Wishing you peace in the coming months (as much peace as we can dredge up sometime).

@dancingwhilstfacingthemusic What is EC?

I’ve realized through the past 2 weeks or so that I am feeling so weak that I can barely walk ten feet. I’m regularly able to walk around the house and use 2lb weights with my arms but can’t seem to do a thing. Yesterday the whole family went to “LEGOLAND “ here in So. California. Beautiful day, temp in the 70’s f. I couldn’t walk. I asked my dh for a w/c. My poor dh who has pulm. fibrosis due to long covid and is on O2, started to push me! I enlisted my lovely and healthy dds to do it instead. This is the first time I’ve not been mortified to be in a w/c. It’s definitely something to tell my oncology nurse next Monday. For all of you that experience similarly my heart goes out to each of you. At the beginning of this cancer journey one of the case managers told me that nurses receiving chemo go from the infusion center right back to work. I can’t believe how anyone could be expected to go to work while being treated. From being a relatively recent mn follower I find the UK to be extremely generous as far as necessary benefits to the disabled and ill etc. So much more than the US. I feel so bad for all of you (and anyone going through this). Prayer, love and hugs to each of you.

@cannaecookrisotto congratulations on your DC starting to crawl! It's so joyful to watch them realise that they can move independently, yet at the same time such a worry - especially if you're unwell. I hope your sore throat clears up soon.

@Sbmpp that level of weakness must be horrid. I hope you enjoyed the Legoland experience as much as you could do and well done on DDs for being so supportive.

My insomnia continues apace, but I'm signed off work so at least I can rest up when I need to. However, my anxiety seems to have lessened since finding this group. It's probably a connection thing; I'm not the only one going through this ( even though I'm only a beginner right now!)

Wishing a peaceful day for everyone.

I have carried on working but I am working from home and work have been very supportive. That said, I’ve had enough now (13 rounds of taxol so far) and I need to rest. I’m going to take January as sick leave I think, and then see where I am health wise. I too have no idea how cannae and others with young children cope. If not for DH our household wouldn’t function at all because I’m certainly not capable .

@cannaecookrisotto you poor thing. I’m sorry you are so poorly at the moment. Are you able to rest? Your husband can chase your gorgeous crawling baby around!

Yes I have scans today. Thank you for asking. I hope to find out the results at my oncologist appointment on Monday. My breathing has got worse the past few weeks but I don’t know if that’s the lymphangitis or my having caught a bug. Hopefully it’s a bug.

I’ll catch up with everyone else once I’m back from the hospital. So much happening on here with you all. Wishing you all peace, comfort, gentle hugs, sleep (I would love some of that too please) and swift results and treatment for those waiting xx

Yes, I had elevated tumour markers on blood tests.

@ventress good luck today, and yes you should take sick leave, I dont know how anyone is functioning at anything other than getting through each treatment and being well enough for the next one.

cancer is enough to be dealing with

@cannaecookrisotto hope you start to feel better, not sure you should be having chemo when you feel ill already, but hope that it goes well.
lovely news that baby is crawling but to me it sounds exhausing...

there are so many people on here now my chemo brain cant keep up with whats going on so i wish us all well. this is day 6 for me and finally i feel a little better and definitely better than last time. more injections still to go though until i can relax although they have hurt this time but not so many side effects.

@cannaecookrisotto what awesome news re babyfat but argh! nail everything to the ceiling. This was the stage where we ramped up "babyjail" aka the playpen for my two! By the time I reached my last EC I was really tired - the impact built. Also, on the last EC I had fannied around Paris the week before as, miraculously, my bloods were ok for me to travel for the long-planned holiday for DS's 25th birthday. I think a couple of weeks after the last EC I was coming out of it but tbh I've been more tired than before treatment - they say it can take a year for you to start feeling fully on all cylinders. It doesn't help that I started letrozole a few weeks after finishing chemo as that makes me tireder (currently on anastrozole but it hasn't made any difference to the joint pain). All the best with the EC, keep on top of the sickness tablets and drink lots of fluids. Also, move around - which you'll have to do thanks to baby fatfat.

@Sbmpp EC is a combination chemo, Epirubicen ("red devil") and cyclophosphamide. Despite all the scary talk about the "red devil" it was ok. I had been rather sick on my last of 12 paclitaxel so spoke to the team about it. They gave me a week off, dropped the EC dose and gave me some mega antisickness tablets. I took them with absolute adherence to a timetable and wasn't sick on the EC cycle. The filgrastim injections were a bit spicy tho by the end of treatment, as the bruising was building up on my tummy. Everything is doable day by day.

@Ventress glad to hear that things are encouraging re dd. Please just keep an eye on things. Without wanting to worry you, my ds2 was in and out of the dr's with stomach pain for a few months, having normal glucose each time. He presented with t1 diabetes a few months later. My dh has coeliac. Hopefully it's just a bit of a glitch for you guys and nothing comes of it.

@Ohjoyohbliss glad you've found this band of people going through crap things. We can rail at the world and support each other.

Morning everyone!
@Ventress you are amazing for managing to work even from home through 13 taxols. Absolutely take sick leave if you can in January !! Best wishes for your scan x
@FcukBreastCancer glad you got DDs results , crossed fingers that it isn’t coeliac. Really hope your margins are good this time round.
@cannaecookrisotto
baby fatfat nickname makes me smile 💕 once they’re off ! They’re off ! No stopping them, a whole world to explore and mops are very interesting . Big play pen needed maybe? Sorry to read about your throat but glad you’re half way through. At the top of the mountain , you just need to work your way down now
Levallois Perret perfectly spelled .
@Sbmpp sorry you are feeling so weak but how lovely to have your DDs there to help. Hope you enjoyed Legoland.
@ForestFlowerFairy hope things are feeling a bit easier now.
Hi to everyone else and best wishes xx

Hi all
I thought it about time I shared a little bit of sunshine after my miserable last updates
Margo, our dog I'm not thinking about because I'll drive back and get her and I know that's the wrong thing for her

BUT, happiness only:
Today I went shopping with my Mum to try and sort Christmas presents, I did get tired quickly so in a 4 hour trip had to stop for lunch and a coffee but it felt amazing to do something 'normal' I had an alcohol free wine, and the waitress was really helpful suggesting small bites that were soft so genuinely it felt like a great day out.

My biggest issue in all this has been my throat closing and being unable to eat, then starting and only tasting salt.
Everything I read suggested the taste of salt can last 8-12 weeks and it's been 2-3 weeks since I started eating again and already the salt has faded and I can taste foods, not fully, much of it is still a bit muted but that's still better than expected. I missed vegetables SO much and happily munched on steamed broccoli as a side today.
So for anyone and googling things, it can be helpful to manage expectations but sometimes, like with my salty taste buds you can recover quicker. All small victories like this should be celebrated
New biggest issue, I'm quite forgetful. I did manage to walk out of multiple shops without the shopping bags today - My poor Mum was grabbing them and basically keeping me safe, I also left my card at one till as well. Marginally amusing to me as I managed to shop without carrying bags. I wonder how much of the forgetfulness is the pain medication as opposed to the cancer treatment though.
As soon as I can get my brain functioning I shall be skipping back to work and getting some routine back. Anything to distract from waiting until the end of January for results ☺️

Big love to you all, do take it easy, rest when you need, tie up small babies that have started moving and take faith that some side effects can heal quicker

@ForestFlowerFairy Very happy to hear you’re eating broccoli!! I do understand the taste changes. My problem is everything tasting like nothing. I add salt to all my food. If I get a few more rounds of chemo that might change!!

Evening all :)

My brain is super foggy this evening so I’ll catch up properly tomorrow but just checking in with @Ventress to see how your scan went today, did they say how long results will take? Sending you big hugs and will be back tomorrow!

Waving to everyone 👋 xx

@Ventress fingers crossed on that scan. I have some kind of them every 3 months it seems. An EGD is about due too but that’s separate and with sedation which is quite nice actually (propofol). A brief respite from the cancer.

@dancingwhilstfacingthemusic thank you so much for the response. Based on what I googled it is not a drug for me based on my type of cancer (esophageal). I so much was hoping on a good response to the immunotherapy.

@dancingwhilstfacingthemusic
The filgrastim injections were a bit spicy tho by the end of treatment, as the bruising was building up on my tummy

I have Zarzio, which I think is a brand name for filgrastim, for five days after every round of chemo (five days of steroids followed by five days of Zarzio. )

They warned me that it might give me aches and pains, but I haven't had much of a problem with it. A bit of back ache last time round. I have it in my thigh or arm if my tummy is too bruised or lumpy from the Tinzaparin injections.

@Ohjoyohblissand @Inthebasementvery best wishes to you both.

Thank you all for your good wishes about my scans and tests yesterday. They all went smoothly and no enormous delays (which I always worry about as I never want to be late for anything!) I had my usual pre-chemo blood test last and now I’m wondering if if will be full of ct dye!

I hope you enjoyed Legoland @Sbmpp. If it’s anything like the one in Windsor you will have had a great day whether using a wheelchair or otherwise. We used to go a lot when my son was young.

@dancingwhilstfacingthemusicamazing that you managed a trip to Paris in amongst your treatment. I can barely get to the garden centre 100 meters up the road!

Your update is fantastic @ForestFlowerFairy I am not much of a shopper but that sounds like the way to do it - lots of breaks and your mum to carry the bags 😊

Thank you everyone encouraging me to take some time out after Christmas. To be honest another reason why I want to take it is to be able to think about doing more. At the moment I’m pretty much house bound. The only place I really go is the hospital. I’m just so exhausted by the end of the day I can’t contemplate doing anything else. I hope that if I’m not thinking about work all the time I will have the energy to go out and build my strength up. There are also groups which my CNS has pointed me towards but they all meet during the day.

I hope you are feeling better @cannaecookrisotto💐and managed to sleep last night. Scan results hopefully on Monday 🤞

Baby FatFat will be baby svelte now that she is crawling- as others have said , nail everything down!

For those who have been here a while you may remember that in October we got a replacement range cooker. Well, the main oven’s thermostat didn’t work and despite trying to repair it it still doesn’t heat. So, we have returned it, and the new one is being installed now. Fingers crossed this one works.

iI also have my annual review with my manager later. I will give her the news about the January break…

@Inthebasement

Thinking of you and your appointment today.

Can I ask if anyone has been through the menopause?
I had a call with my oncologist today who asked if I had any new symptoms or issues. I mentioned the forgetfulness and she instantly went to menopause and asking if I had hot flushes. I knew my treatment was likely to start menopause but I didn't think it would happen this soon.
Thankfully no hot sweats but when I googled symptoms of menopause it listed multiple things, those I have, all of which started post treatment:
Tinitus
Brittle nails
Forgetfulness/memory issues
Changes in skin / dry skin
Irregular periods
But no hot sweats or hit flushes

But in my mind these are also all cancer treatment side effects. Has anyone had menopause without hot flushes?
How do I know what's cancer treatment V menopause?!

@ForestFlowerFairy I had to stop my contraceptive when diagnosed (hormones breast cancer) and felt like shit. I wondered if it was menopause. My periods did not return, then made an appearance last week after 3 months. I'm dreading them being monthly if that's what happens. I went on the pill as they were so bad.

Brief update from me. Results appointment today pushed back a week :(