Cancer Support Thread #79 Newbies Welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@KitchenFishCurry ah ok. My hospital only offer the tummy version I think. Hope you continue to heal well and thank you for the info

I just had a random thought in my head. Why aren't oncologists called chemotherapists? 🤣

@balkanscot that bone scan plate is a trip isn't it? NOTHING made me more claustrophobic of all the scanning than the bone scan plate. It didn't seem to stop coming at my face!. Truly the human Xerox machine.

This BSO pre-surgery prep is a faff - some expectation setting would have been helpful. Bloods were low on Monday ( I know - its the start of my week off!) so now I have to go in tomorrow to retest. Tuesday I went in for pre-prep swabbing and went home with a bag full of stuff to take, jam up my nose, wash body and hair and an enema?! I get they are going to be fiddling near the digestive tract but still, wasn't prepared for that one. Can't wait to huddle on the bathroom floor at 530 am on Friday. I had to draw out a schedule to keep track of everything.

Im going to rage if my bloods aren't good tomorrow - at least I've managed the filgrastim injections ok.

@MrsPnut top news! Here's to NED and an unremarkable pelvis 🤞in the very near future

I'm starting to get the brachy dread

Great to hear the good news on the scan results

I tried to get my 2nd Covid jab booked in before my mastectomy in June & you'd have thought I was asking for the moon on the stick! I don't think there's a snowball's chance in hell I'll get in beforehand judging from the my conversations with my GP surgery (who have never contacted me about my diagnosis and never put me on the CEV list - the only thing going for them is they're just down the road).

I'm massively asocial and don't really do friends so a good side-effect of that is I get to avoid those awkard interactions! I only have one close relative to deal with on my side of the family (due to being an only child of only children) and DP's family lost his mum to cancer last year after living with it for 10yrs so they have an idea of how to approach it.

@PhannyPharts I'm having delayed reconstruction after mastectomy as I'll be having radiation therapy afterwards and the radiation can detrimentally affect any reconstruction efforts. Later on, after all is hopefully healed well, I'll go for a DIEP flap reconstruction as plenty of spare flesh and skin on my tummy to use. I'd like a bit of a reduction at the same time even though it will mean a later surgery on the other side as well to even things up.

@HauntedDishcloth I think I'll be having radiotherapy after too although they've not really spoken to me about those things in detail yet. Surgery wise they just asked if I wanted the boob off and I said yes please seeing as it's riddled. I said they could take it now if they wanted but they declined.

Off for the picc flush and bloods today. Tomorrow it's ding ding ding round two. My last half hour quickie appointment turned into four hours for blood clots all along my picc line so hoping for none of those shenanigans today.

@Bloodybridget @Babamamananarama @balkanscot super scan news

@MrsPnut here's to NED. I had a shower and good investigation of my new boobs this morning. Boy they are smaller! It's weird - I actually feel kind of shapeless and could definitely stand a smaller tummy to go with them. I put on a regular favourite jumper and I am drowning in it They are glued all over and there's an itchy spot in my cleavage that is driving me potty.

@Lunificent I don't avoid foods like that but I did look into the use of many things like antioxidants. I'm particularly keen to control that during chemo as alas many items popular as anti-cancer supps are antagonistic to chemo (for the same reasons).

It's highly unlikely that you will hit a really high anti-ox level through diet alone so I wouldn't worry about fruit and veg - the issue really is more with supplements so I also cut VC and some other things I had been taking. I intend to revisit all this if/when I ever get off chemo properly. It's complicated and does depend partly on your particular subtype.

@PhannyPharts wishing you good PICC karma.

@HauntedDishcloth yes - absolutely nothing doing from my surgery wrt getting my 2nd jab before surgery.

I sometimes wonder what it is I really want from other people when I talk to them and I can understand people not knowing what to say for the best. Sometimes I don't know myself.

A little bit of sympathy/empathy - showing understanding that this is a bit shit but no emotional drama/tears. If I don't seem emotional (which I don't irl) - have some imagination and realise you're not seeing everything. Let me set the tone - I'm prone to black humour myself but sometimes I'm too low for jokes. Don't talk about being 'positive' as though my prognosis depends on it - it doesn't. I can't sweep the risk under the carpet - I need to face it.

@Acinonyx2 you have summarised perfectly what I want when I talk to people. I am also prone to dark humour and often people seem disappointed when I am not laughing and joking about it all. People seem frustrated when I won't see the 'positives', 'well at least you didn't get a lot of sickness' and seem cross when I won't bask in that with them. Most of the time I am like you though, I don't know what I want.

I want people to acknowledge that it's a shit disease and I am probably having a bit of a shit time with the treatments. I don't need more than that, and I certainly don't need platitudes or geeing up.
I do joke about it because I have a dark humour but let me lead it.

My close friends are very good, possibly because I am known for being very matter of fact and we've known each other a long time. They offer specific things and I never feel bad about asking them for lifts or picking up prescriptions etc. They are also good at texting but not expecting a response.

What I find hard is people that I may have known years ago and had little to do with due to geography etc saying things like "I'm here if you want to talk". I just think "Why would I?" I've barely spoken to you since we left school.

My very best friend lives in Sunderland and we haven't seen each other for ages. She was due to come and stay last April and the lockdown happened. We have a weekly phone call on a Sunday afternoon and I really look forward to it. We chat about all kinds of things and very little about cancer (just an update if I've had an appointment that week).

Welcome to all the newbies, sorry you find your selves here. Waiting is just the worse, big hugs.

So please to see so many good scan results a d those recovering from surgery are doing well.

I'm tired from the chemo this week but just wanted to pop in and say to lunificent smoothies are fine. At diagnosis I was living on soups and smoothies due to swallowing issues. The dietician & pharmacy said any foods in the natural state are fine but not to add extracts or supplements to increase antioxidants as it can interfere with chemo.

I have smoothies or use my juicer most days and eat really healthily with lots of veg, beans, lentils etc. I have had very little toxicity so far and im really trying to support my body as much as I can with good nutrients as it's going through a lot and I want to feed it the good stuff so it can heal.

Jean glad 1st chemo was ok. my port has been the thing that bothered me the most. It was very bruised and uncomfortable and took about 2-3 weeks to heal which I was not expecting as they really played it down.

One bright spark in my life this week was supposed to be a hair appointment, and hairdresser has just phoned up to cancel because she is sick. Last appointment was August, and chemo has stunted most growth since then apart from also losing a lot from the top of my head
due to thinning. It was the highlight of my week , small things eh!

Fantastic news about scans balkan and bridget.
It is exhausting adjusting to scan news, whether it's good or bad you have a whole new reality to rapidly adjust to, plus the hangover exhaustion of all the worry and anxiety that's built up which you can finally release yourself from.

I would be interested in any more info about antioxidants and chemo - I have been having lots of smoothies and occasionally adding supplement powder without thinking I shouldn't. I should check with my pharmacist I guess? I didn't realise antioxidants were counter productive with chemo.

@Babamamananarama the situation with antioxidants is very complex. Ordinarily, as has been known for a long time, antioxidants can supress carcinogenesis in the first instance - but newer research shows they can also supress some of the pathways that act against cancerous cells once formed.

In particular - some chemo drugs act via pathways dependent on ROS (reactive oxygen species - the ions/molecules produced by oxidation that antixoidants mop up to restore order). In that case, antioxidants will reduce the effectiveness of the drug, e.g. resveratrol reduces the effectiveness of paclitaxel by this means.

The problem is that it depends on the exact conditions of the cancer cells and which drugs are in use and in the end, dropping antioxidant supps during chemo is probably the safest option. Whether they are worth taking outside of chemo depends on the specifics and it seems at present there are many gaps in the research making it difficult to get a precise picture.

Not good news from my appointment today, the tumour didn’t have clear margins on the lateral side and of more concern is that 10 lymph nodes are involved and tumours found in the surrounding tissue from the axial clearance. None of the lymph nodes were seen on the last ultrasound I had and also my tumour was more than double the size seen on the ultrasound. I need urgent chemotherapy because it has been growing in my lymph nodes all the time I have been on hormone treatment. The wait for NHS chemo is 4-5 weeks so I will have to have treatment from healthcare at home privately. We’re trying to organise an appointment with the oncologist for next week so I can get started. I also need a PET scan to check there is no other spread.
I’m going to need a further operation after chemo to remove the margin or a full mastectomy.

@MrsPnut I am really sorry to hear this - you must be so disappointed. It will take a bit to absorb and adapt I expect. I'm shocked on your behalf. I hope you can get the new plan going right away.

@MrsPnut I am so sorry. It's shitty news. I hope they can get the chemo going ASAP for you.

@MrsPnut I'm sorry. That's a lot to take in. I hope you can get chemo underway ASAP. Thinking of you.

@MrsPnut I'm so sorry to hear this and I'm really hoping you can organise the chemo to start soon. Sending you a hug xxx

Oh crumbs @MrsPnut Get that chemo working on the blighters & the PET scan as quickly as the logistics allow. I got my PET scan results the very next day, which was reassuring as I hope yours will be too amongst the rest of the rubbish news. Unmumsnetty hug coming virtually your way.

@MrsPnut I'm sorry you got such crap news today. I hope they can get you started on the chemo quickly.

So sorry to hear your rubbish news @MrsPnut. Hope they can get the chemo going ASAP. A friend had chemo via healthcare at home and she said it’s brilliant. Sending you a big hug x

Sorry to hear the that mrspnut. That's a lot to take in, I hope you are ok. I have hospital at home, just for disconnection and they are great. Hope you get the chemo set up ASAP.

Oh Pnut that's a huge amount to take in. I hope you can clear the decks and give yourself some time to process that over the next few days. Sending love.

Sorry to hear this @MrsPnut. Here's hoping that they can start the chemo quicker than predicted.

Thanks all, I had healthcare at home for PICC care in Feb and March and they were fine but I have two pugs who object loudly to being shut out of any room and they have no concept of personal space so will climb all over anyone new like the chemo nurses.

@MrsPnut I am so sorry to hear that the bastard seems to be still hanging around. Sending you big hugs and thinking of you. I hope the PET scan goes as smoothly as it can under the circumstances and that there are some good news, whatever they may be. I would have thought you fall under NHS chemo priority - forgive me for asking, what is treatment at home privately? I do hope chemo starts in whatever way/shape form as soon as possible. It is so hard to take things like this in, after you have already been through the mill.

After the initial elation I am now getting anxious again. I want them to do a CT scan. The new “trauma” injury is a bit uncomfortable if I move in a certain way. Although I know that rib injuries are notoriously slow to heal/stop hurting. If I was my consultant I would have ordered a CT scan.

Bloody hell, cancer, will there ever be peace in my head again???