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

My head is totally up my arse.
I’ve done my Xmas shopping, just in case.
I’ve even been to church and for the first time cried. I’m not even religious!
I’m in pain and nothing helps.
feel like I'm in limbo , here me moaning when you ladies are going through the mill.
Im scared basically.

Oh @cheshirecatsmile I'm sorry, I say it to everyone but when you start treatment you will start to feel a little better mentally.
There is no harm in going to church and crying, I'm not religious but I find some places simply feel peaceful and allow you to express your emotions, if that's the church for you, use it.
I had one particular bench in the garden I sit at when low, it's the place I allow myself to grieve and feel sorry for myself. There is something to be said about allowing yourself these moments to simply buy sad and let the emotions out.

You mentioned Christmas presents - try not to think of it as just in case, be super smug, you're one of the organised ones with your shit together in October, come December when my DH is going nuts because he didn't realise he needed to actually buy anything...like every year!!
Did you buy anything nice?

@DanFmDorking - don't tell my husband I said so, but Dune is one of the most boring films I've ever watched. We saw it at the cinema so I even had to pay for the experience!. I hope you are feeling a bit brighter today.

Thank you @cannaecookrisotto that is a great suggestion. Not sure I could top Peppa Pig World for a blood test but I could try the Eden Project or the Minack theatre perhaps? I have booked a blood test at the hospital in Penzance online. I will follow up with a call once I've spoken to the chemo team on Friday and make sure everyone is happy. If it's not a goer I will try Lloyds. Just gives us that one extra day down there. It's as much for my family as me - they've had a shit year and few days R&R somewhere would be so good for them. My lovely SIL is coming with us too.

LOL at the 1970's bush! I hadn't even thought of body hair - I've got some distinct bald patches on my head today. Body hair is holding out better but I'm refusing to shave my legs as it's a waste of my time. My new beanie hat should arrive later...

Your dad sounds either annoying as hell or scared and just trying to obsessively fill the silence with nonsense @ForestFlowerFairy . Would he be offended if you just told him to STFU because you need the peace and quiet and he's stressing you out? Half way is a huge milestone - well done! I'm sorry the treatment you are having to endure is so horrible but half way - keep that first and foremost in your mind. Soon it will be two thirds of the way, then three quarters and then you will be at the end.

Hope the nurse meeting goes well today @FcukBreastCancer. My sister told her surgeon she wanted a smiley scar and it's really lovely - it's a big smile which reminds her that the tumours and disease is gone and that her journey back to health is in full swing just as yours will be.

I echo @cannaecookrisotto, whether it's good news (which I hope it is) or bad, that having someone with you on Friday for support is so helpful @cheshirecatsmile . I was on my own in A&E when I was told about my secondary cancer diagnosis (they thought I'd already been told) and it wasn't much fun. I'm not religious either but I love churches; they are calm, peaceful and serene. Of course you are in scared and in pain. You wouldn't be human if you weren't. It's a bloody horrible time when your mind is racing and full of the worst thoughts and it snowballs and tries to engulf you.

I like @cannaecookrisotto 's idea of having a notebook where we write all the negative and crap feelings to get them out of our heads and then put them in a drawer.

You have a large family and have done your Christmas shopping?! Respect to you. I've got both DH and DS's birthdays before I can think about Christmas (that's my excuse anyway). I do have an online food shopping slot booked for 23rd December but that's as far as I've got.

I got myself a note book , I finished the grandkids presents . Teenagers all the way down to pre toddlers
also have 6 birthdays between now & Xmas.
Been down to see my daughter in law. Lives 10 houses down. So that was nice.
my aim for later today is to have a hot bath and some self care, galaxy hot chocolate with a splosh of baileys and a bar of galaxy, in fluffy pjs.

@Ventress ...Dune is one of the most boring films... the thing is, I kept watching it for about an hour thinking, 'it will get better' - it didn't.

@ForestFlowerFairy congratulations on reaching half way - it's a long journey for you - good luck

@cheshirecatsmile Crikey, I'm sorry you're going through a really bad time - please tell your Oncologist - they might be able to adjust your treatment or give you a suitable painkiller.

@DanFmDorking Dune is terrible, the old one was such a cult classic as well and I never understood why!!! Not attempted to watch the first one.

@ForestFlowerFairy your dad sounds like he’s filling any and all gaps with conversation! T cut on a motorbike box 😂. Sorry I shouldn’t laugh. But otherwise we’d cry wouldn’t we.

Sorry Radio was a bit of a cluster feck today but well done on getting through it! Halfway through 👏🏼. I’m hoping the other half flies by for you and you can put this shit to bed and start to recuperate and convalesce. I have a “roadmap” somewhere that tells me how many sessions I will need so I’ll check that out. Yes have a look at him, I’ve not checked him out, let me know if he seems ok and will have all the answers to my nipples questions.

@cheshirecatsmile 6 grandchildren! How lovely. My parents love my kids more than they love me 😂. But I’m all for it.

A giant snail??????? What’s his/her name? How does that work? Do you cuddle it??

Retail therapy sounds good!

Are they doing genetic testing on you with your family history? It’s ok and perfectly normal
to feel sorry for yourself, this is a big deal, don’t underestimate and try to downplay, you’ll end up bottling it all up and losing your marbles. Let the feelings come, feel them and let out.

Your head is going to be up your arse fully until you have the full picture and a treatment plan. Then once you get cracking forward with it you will start to breathe again, just hang in there. I got some
diazepam off the GP for this point you’re in right now, don’t be shy asking your GP for a bit of chemical help if needed.

Church sounds good to me, if it helps you then do what you need to do ❤️.

Popping in to give everyone a virtual hug. I’m on the other side of main treatment although on the joys of anastrazole. I would totally say do a notebook. I had a star chart in mine for treatments, pages of positives that had happened, small acts of kindness etc, and a page of things to do/ read when I needed to get my act together if I was having a wallow.

a year on from the start of chemo I am super proud of myself and my family for getting through it. It was really helpful for tracking symptoms, levels of glumness, sickness and … bowels. Also things like whether I’d got out for a small or big walk, mad steroid baking, mad steroid Vinted purchases, etc.

@dancingwhilstfacingthemusic I think you make an excellent point, I had a chat with a colleague today between chemo and radiotherapy appointments and said I'm finding this stage with treatments and the routine good, I only really have a couple of hours in the morning before we travel for afternoon appointments - so I have to focus on drinking levels, medication, cleaning feeding tubes and all the other fun stuff. What worries me is when I don't have daily appointments and as much of a target. I think the recovery time will be vital for settling a routine and journaling - new targets to keep focused on moving forward.
Hopefully even as a usual mindful reminder of this time, all these thoughts of 'when I'm well I'm going to...' and making sure I really do these things and not fall into old habits.

I'm usually quick to get annoyed, frustrated at poor time keeping etc and rude people - yet since my diagnosis I have this weird calm feeling, very much a I have no idea what this persons day is like so I should be nice kind vibe, (other than wanting to gag my Dad this week) I'd love to keep this sense of tolerance.
But honestly, he's still talking and if you don't hear from me again I've been arrested for assault!

@dancingwhilstfacingthemusic it’s lovely hearing from you and how you’re doing on the other side ❤️.

Im absolutely petrified of the other side. I know that sounds bonkers but at the moment I’m in a routine of treatment whilst being wrapped in cotton wool by multiple healthcare professionals.

I’m absolutely shitting my pants at what happens when I slow down and jump off the treadmill that’s stuck on the setting of “uphill gradient at max speed”.

I feel like I’ll never be able to be the same person I was before because I can never unhear the words “you have cancer”. Those three words completely undermined my entire sense of safety and security in myself and my body to recognise when something is going horribly wrong, and also my safety blanket of “that won’t happen to me” has well and truly fucked off. I feel like anything is possible now and if it can it will. When my CT came back clear of further spread, I was shocked! My first go to protocol was “the worst is happening” and I’m going to struggle so much with shaking that off. Especially because I was plodding along for months thinking it was blocked milk (thanks to the GP) and only after a few months did I start pushing harder for referral.

I’m worried about spending the next 5 years feeling every twinge in my body (that 2 months ago I wouldn’t have given a second thought) and rushing to the GP in a state of panic that it’s returned.

I’m scared of people saying to me “it’s time to move on” or “time to get back to normal” and biting their head off.

I’ve declared to my family that at the end of active treatment, I’m going to have to take myself away, alone for a week, simply to reflect on what the actual fuck has just happened. So I will be finding the most luxurious child-fee Sandals resort in Barbados for this period of reflection 😂.

Like a bloody zoo animal that’s become reliant on the zoo keepers for survival. I think this is when I’m going to need some serious therapy. I’m going to need help to embrace a new normal and a new me.

Hearing of people like you that is now feeling things like being proud of yourself gives me hope for myself in being able to move on. At the moment I feel a lot of guilt, firstly as a burden on my family (I know I know) and secondly for not advocating for myself harder with the GP who kept sending me home to try a bloody hot compress. I feel like I’ve let my kids down, and that those 3 months could change everything for my prognosis, outcome and recurrence chances. I swing between que sera sera and mortal dread sometimes. Then some days I feel like I’m absolutely smashing it and everything is going to be fine. The good days become more and more as treatment continues (I’m so lucky with the side effects but appreciate this can change when I start EC so just taking each good day as a win for now.

So all this brain dump (I’m so sorry ❤️) to say that I’m scared of treatment but also scared I’m going to come out the other side a mental, anxious and twinge obsessed nervous wreck 😬.

If you ever decide to leave nursing @cheshirecatsmile you should consider becoming a personal shopper, you clearly have a talent! I hope you enjoyed your self-care evening and got some rest. Not long now until the waiting is over.

I agree with @cannaecookrisotto and @ForestFlowerFairy that I felt so much better when I had a diagnosis, even one of non-curable cancer, because the wonderful NHS machine clicked in and suddenly there was a targeted aim - to get me into remission, get me as healthy as possible and keep me there as long as possible. It felt so positive compared to the weeks of never ending diagnostic tests to try and rule conditions out while every day I was deteriorating. I genuinely thought I was going to end up on a ventilator with nobody having the faintest idea how to make me better, and that scared the total shit out of me.

I hope you have managed not to kill your dad @ForestFlowerFairy .

Your reaction to what happens afterwards is very natural @cannaecookrisotto It's fear of the unknown. I think that you will still have lots of appointments and lots of support even once your BC is cured. It is a five year closely monitored pathway after all. Hopefully at the end of the five years you will be happy just with the annual check ups and less intrusion into your life. There is always going to be support available when and how you want it. I have colleagues who were given the all clear many years ago and they still go to their MacMillan groups and keep in touch with people they met on their cancer journeys. It's a bit like the NCT group who still meet up when their kids are doing their GCSEs
You have told me not to feel guilty and I say the same to you - don't you dare! Your family will support you through this fucking awful journey and, later in life, you may well support them through something lousy they have to deal with. Don't feel guilty. Put your energy into your girls and your health

Thank you @dancingwhilstfacingthemusic, it's so good to hear from you.

Haha @DanFmDorking - I think it's human nature (or perhaps just human laziness) to give a film a while to see if it gets better. I would suggest not bothering with Dune 2 though - it really doesn't get any better (yes, for my sins, I sat through that too).

I slept last night. I cannot tell you how much better I feel today as a result. I got a vast 6 hours uninterrupted sleep and my brain fog has lifted, my eyes feel less wobbly and even my hand tremor feels lessened. My hair is still falling out in big handfuls but at least I have a nice cotton beanie to cover my bald patches
I had my flu jab this morning. No side effects, or hurty arm (technical term), yet. COVID booked in for two weeks hence. Chemo number 5 tomorrow.

I cried again last night, as lay on my side and was snuggled up with my parasite. How the hell did I miss it!! My boob is swollen ffs.
going to see my 9month granddaughter today for naba snuggles.
today I’ve got right sided weakness. My arm and shoulder just ain’t cooperating with the rest of my body.
I just want tomorrow over and done with.
And walk into work tomorrow afternoon with a smile on my face.

@cheshirecatsmile sorry to see you have to join this group but everyone here seems lovely and welcoming.

I am in limbo at the moment have a large lump well 2 lumps and am waiting for scans to see if its spread which means I cant get my plan sorted until scans have been done.

Good luck for tomorrow, take someone with you and at least it means stuff is happening and you will know more.

I am googling and running away like peep behind the curtain its all very scary and out of control and I have chemo and surgery or surgery and chemo to come and I dont know which would be best because actually I just want to rewind to before lump time.
Best wishes to you and your family and of course as always to everyone else here battling every day with this shit.

I’ll come back and respond shortly but just nipping in to say to @cantbelieveIamhere get off bloody google before I hunt you down and confiscate your phone!!

Google is the enemy right now. Statistics are out of date, treatment is ever changing and every individual diagnosis is different. Even those of the same type, stage, grade etc. Everyone’s bodies are their own individual statistic so all Google will do is scare the shit out of you. I learnt this the hard way 😂. I got home and searched “Triple Negative Breast Cancer”. Saw that is was an extra spicy variety and according to Google I was proper fucked. But then spoke to an actual Oncologist who said “alas not! We have a wonderful new chemo plan called Keynote 522 that includes Immunotherapy that has revolutionised TNBC treatment and significantly lower the risk of recurrence”.

So fuck Google. Stick to the safe websites like MacMillan, Breast Cancer now and come here if you have questions. When you get your results, and a treatment plan, then maybe dip your toe gently in the water of your type (on the safe website again). Pretend you live in Russia and Google is censored is probably the best option to resist temptation.

When are your scans booked?

Pressed blooming post too soon, excited steroid fingers kicking in @cantbelieveIamhere. All that to say, I promise you my good tit that when you get the full picture and and plan, those immediate scary feelings will start to lessen. They will sometimes pop in to say hello but less screaming down your ear all day ❤️.

Stay here with us too, let us support you. I’ve found it so helpful being around others that have been on the receiving end. We’ve got you, and in a month once you’re on the road to getting well, you’ll be here comforting newbies too xx

@Ventress I feel terrible prattling on worrying about after treatment ends when you’ve had such a shit time of it, I’m so sorry. I believe, with all my heart, that you will be in remission, as healthy as possible, and for many years to come ❤️.

Thank you for your lovely post. I will be happy with lots of appointments (can’t believe I’m saying that). I’m just hoping I can get to the end of the 5 years without a recurrence. But then the other part of me thinks “fuck it que sera sera”. Worrying about it isn’t going to stop it coming back is it. I can’t put my life on hold and if it does come back, I’ll have wasted those years worrying about it. Bloomin catch 22.

I hear you about my family and I genuinely know they love being here for me, I just feel bad that they’re worrying all the time. I think out of the lot of us I’m the most chilled. My mum is terrified, she tries to hide it from me but sometimes she slips. She keeps shaking. It doesn’t help that my sister (we have different dads) is at risk of Huntingtons disease (it has a 50/50 chance of parental inheritance and her dad has been diagnosed in the past 3 years). So I think mum feels like she could lose both her children. The news about the new HD treatment a few weeks back was so welcome. We were all over the moon! I am going to try and find mum a therapist or councillor. She’s bottling it up for my sake but she’s going to implode otherwise.

So glad you had a good nights kip and feeling brighter! A cotton beanie - I’m going to start stocking up. Cold cap is working for me so far but I think when I get to the EC that will change. I don’t want a cold head at Christmas!!

@cheshirecatsmile how did it go today? Ive been thinking of you. I’ve got everything crossed that you’re going to pop in and say goodbye to us because your results were the good type. But if not, you will find so much support here with us ❤️.

It does feel like a parasite doesn’t it. I feel like my tits a massive traitor and it can piss right off. I hate that I have to keep it and do surgery after chemo but on the plus side, I can feel the bastard frying and getting smaller each week. Rest assured that whichever comes first, chemo or surgery, they will be treating you with the best outcome in mind possible and they won’t piss you around. The NHS kicks in super hard. I hope baby snuggles helped you feel better for a bit. Nothing beats that snuggly baby smell 👶🏻.

@Ventress ...I would suggest not bothering with Dune 2... - Dear God there's more than one? - arrgghh!

Good luck today @cheshirecatsmile having a plan helps so much if the news isn’t what we want to hear.

morning , thank you.
I’m ready to go , other half is fathing about. What is it about men!

Oh i know this feeling
I think my dh knew I'd leave without him on appointment day if he wasn't ready!

I hope you get good news.

@cheshirecatsmile
What is it about men! - remember now - 'Every chair's a clothes hanger'.
Good luck for today 🙂

Had consultation, found 2 areas , 1 on each breast. Left boob just a cyst but she wanted it checking.
just had mammogram, bloody hell.
waiting for my ultrasound.

All done
Had circles drawn all over my boobs
Had mammograms
Had ultrasound
Had fine needle biopsy x4 needles. Bloody hell that hurt.
Drained a 8mm cyst
The main lump , looks like a large cyst but they couldn’t get the needle in hence 4 tries.
They don’t think it’s dodgy, but doesn’t look normal.
So keep an eye and come back if I notice more changes.

That’s great news @cheshirecatsmile ❤️

@cheshirecatsmile - yes good news, try some arnica tablets to help the bruising of the biopsies heal more quickly. Well done and free art work!.

@cannaecookrisotto thank you and I am googling mostly on sensible sites.

I have ct scan with contrast on sunday afternoon so thats the roast dinner cancelled.