Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I am feeling better today, thankfully - it's just taken longer than expected. Good luck for those going in, and I know it's a bit of a cliche but just take it one step at a time. Take all the help offered and don't feel useless for doing it, I don't like relying on other people and have found it hard, but actually it's the only sensible thing to do!

@MeowSplat dont let my drain experiences worry you - I’d had 3 surgeries and my surgeon explained that it amplified my er, seepage. Just have a clean set of nightwear just in case!

Hope the MRI goes smoothly. I deal with it by calling it the disco tube and imagining I’m on the dance floor at a nightclub. I just have to remember to keep still !

@drivinmecrazy so pleased you’ve got a date to go by. I had a wide excision lumpectomy for my first surety, with the wires and the radioactivity as you’re having. Nothing hurt pre surgery and I joked that I was spidermum having gone radioactive. I practised visualising something nice and breathing steadily which helped with nerves going under and the next thing I knew I was coming round. I was comfortable and was fortunate to be able to manage my pain with paracetamol.

They put a block in during surgery which helps with pain afterwards. I didn’t need many painkillers for the surgery discomfort but took what I needed - a friend had described it as a paper cut sensation. I was sceptical but it did settle to that.

I found pillows were helpful as I needed to sleep on my back. I could lean at an angle lying on one, or in the early days have a couple in an inverted v behind my back and another in the crook of my knees. You’ll work out what’s comfy for you.

Have a water bottle next to your bed, not too heavy, as you’ll be thirsty and drinking water helps wash the surgery drugs through.

We’ll all be thinking of you on Weds.

I have pax 3 on Weds - I’ve had a good week thanks to the mouthwash and gels although am very tired. I make sure to walk daily and the. Set myself a small job as a key thing to do. Anything else is a bonus. I am fortunate to have family support. They’re also going to give me my first biphosphonate infusion (osteoporosis drug) which apparently gives flu-like after effects so I might not be so chipper for a few days. It’ll be another one done though.

how’re you today @ememem84? @frostyfingers glad things are improving.
waving also to @BatshitCrazyWoman

@dancingwhilstfacingthemusic This pillow advice is helpful (not that I even have a surgery date yet!) I'm a front/side sleeper and have always found it almost impossible to sleep on my back....also fear I will likely just keep rolling over in my sleep which may hurt a lot 😬 I might need to buy some sort of properly supportive full-body nest/wedge type thing, just to force me to stay on my back at first! Has anyone else had this issue/possibly have any tips or recommendations?

I bought a wedge but didn’t find it greatly helpful. I put it at 90° eventually so that it propped me up a bit (poor dh as there was no room for him and my weird hours of sleeping would have kept him awake).

I used a pillow in the normal place, 2 in inverted v to be propped up. This helped at first. Otherwise, I lay with a pillow behind me and another one down my front so I could steady my operation side. I was a front sleeper so it took a little adjusting. Without the ruddy frozen shoulder it would have been a great deal easier. I couldn’t roll in my sleep as it was ouchy, so having a pillow behind/ to hug helped me greatly.

I may have mentioned that a really practical thing has been to set up an Alexa echo dot which I can use to voice control radio/ podcasts etc and vitally, to control a WiFi lightbulb which also dims. I only have to ask for the light on off/ down etc.

I was fine to get out of bed after my lumpectomy but found after the mastectomy that I did need the odd bit of help sitting up in bed at first. This was exacerbated by the frozen shoulder on the other side, so if the op is on one side and the other shoulder is ok hopefully you’ll be fine. Keeping moving is good during the day to ease out those muscles which have been in unusual positions overnight. A microwavable heat pad helps with aches and pains.

Keep telling yourself it’s just a little time. Rest up and potter as you wish. We are stronger than we know.

Anyone got any tips for helping with anemia? My red blood cells are low again, I’m eating red meat, leafy veg, eggs etc but I’m exhausted. I’d like to at least be able to walk the kids to school (ten min walk) this week but I can’t even do that. I’ve got some Floradix but it tastes awful and made me vomit at least once.

I’d just like a bit of a normal week before my last chemo.

All I can say is make sure you are having vitamin c as well @Littlecaf as your body needs it to absorb the iron (eg fresh oj with the floradix). If you are tired like this hopefully your team can offer better advice.

Still snotty here but feeling much better. Hoorah. So we shall see how the bloods go today.

I have an apt with my consultant surgeon today too. Hw sees me every 6 weeks and does an ultrasound to see how things are going. Last time I saw him he mooted that surgery would be around feb half term. So that’s what we’re aiming for.

hopefully depending on bloods I start paclitaxil tomorrow. 10-12 weeks of that.

I’ve cancelled everything at the weekend and later this week (except for a nail apt which I cannot cancel or change on Friday!) because I don’t know how I’ll feel. But I’m reliably informed that pacli is better tolerated than EC so I’m hopeful I should be ok. I was very lucky and had minor side effects to EC so fingers crossed.

Sending strength and solidarity, Littlecaf! I've got my penultimate chemo today and I totally know what you mean.

I'm vegetarian so my version of this is miso soup with nori/wakame (seaweed) which is high in iron. But if I wasn't vegetarian I'd probably start drinking some Bovril which has a high iron content and is quite comforting.

Itsu seaweed is also a nice snack with good iron levels.

Glad you're feeling better @ememem84, hope bloods today are good.

The sleeping thing is an absolute bugger @MeowSplat, I can mostly only sleep on my back at the moment and it's horrible, every time I try and lie on my unaffected right side gravity takes over and the wound gets really painful no matter how many pillows and cushions I use. I had my first really bad night last night and ended up taking codeine to help with pain and make me sleep so now I'm wiped out, yuk.

I stupidly started reading an article in a Saturday magazine and the first paragraph mentioned the same cancer as I have and called it aggressive and incurable which has really rattled me. It's hard to remain positive when you read stuff like that.

Not a great start to the week for me, I hope everyone else's is better.

@frostyfingers sorry you feel like that - and sorry you read that too. There is so many cancer stories in the media right now it’s hard to get away from - I feel like it surrounds me some days. I have to flick past all sorts of social media posts and articles on news websites. Try to remember what your consultant told you about your specific diagnosis and not what you read in an article. (I could do with doing that myself).

@frostyfingers I second @Littlecaf ... that article sounds really triggering and needs to go in the bin..its not about you.
I am spending Monday waiting for the nurse to come and flush my PICC line and feeling a bit flat now half term has ended. I am not good alone in my head. @ememem84 I'd be interested to know how paclitaxol goes.. I start weekly doses next Monday. EC hasn't been too bad although the last one kicked my a*se a bit.
Happy Monday everyone x

I'm following you a few days behind, @ememem84 😂 I hope your appointment with the surgeon goes well. I have one with mine on Wednesday - my surgery may be end of February. I'm really hoping paclitaxel is better, as dose dense EC completely fucked me up, I only just feel a bit better today, 11 days after the last one! I am old, though (60), perhaps that's it! I'm still losing weight 🙁

Cancer seems to be everywhere I look at the moment @frostyfingers , I spend a lot of time quickly scrolling passed things.

hope all goes well with bloods @ememem84 I have bloods tomorrow and hopefully paclitaxel 3 on Weds. I’ve tolerated it fairly well so far. This week I have the phosphate osteoporosis drug too, which apparently gives flu like side effects - anyone else had this? I have three spread over my chemo and then six-monthly for 3 years.

@londondragonite thanks for the seaweed tip. Another veggie here (& also pokemon go fan, which is helping with my daily walks!).

@frostyfingers that’s not helpful eh? So many of these are based on people’s reactions to historical treatment too, where the evolution of interventions means that the outlook is much better. FWIW, I have had similar as I read an article about recurrence with breast cancer. For some, getting to five years clear resets the risk to the population level’s. For mine, hormone sensitive, that’s not the case however, which gave me a doom spiral that I’m going to be chased by it forever. But things will improve with treatment and I’ve been reading about a research project where they’re developing a blood test which picks up very early indicators (cells within the blood), well before any lumps or other changes are shown. This is for people with er+ her2- breast cancer but shows the sort of thing that’s happening to help us down the line (https://www.royalmarsden.nhs.uk/trak-er).

@BatshitCrazyWoman I hope paclitaxel goes better. Can you explain what you mean by dose dense ec? I have four on two-weekly cycles at the end of my 12 pax 😬. I think you’ve all heard how in a bit concerned about that part of my treatment! I hope your surgeon meeting gives you more of a plan. I’m finding the oral gel and mouthwash invaluable for mouth pain / taste, I hope they can give you something to relieve the side effects.

Bloods done just waiting for a call with oncologist to see if we go tomorrow or not.

took some treats into the ward today. The staff are amazing and really helped me through “phase one” being EC. So treats for them. M&S’ finest tubs of goodies.

MRI done..... now begins yet another wait.....but hopefully the last wait before an actual plan!

I'm feeling a mess of emotions today.
Looking forward to getting off the starting blocks with surgery.

But so up and down emotionally.

Understandably I don't think my DH can keep up.
He tries to sympathise but then illl throw that back at him because he can't possibly understand.

Poor bloke doesn't know whether he's coming or going.

He's a very pragmatic type of person whereas I'm definitely more emotional.

Don't mean anything by this post, just venting.

Does anyone else have a partner who views these things through a different lense?

@dancingwhilstfacingthemusic I started my chemo with 4 x EC two weeks apart. I did find it very tough, but you may not (like I said I'm old 😂)

Thanks @BatshitCrazyWoman I’m 58 so chasing your glam heels. Will just have take each day as it comes, although I did ask my consultant about a possible chemo break for an important event and she said “if you’re well and your bloods are good … oh you’ll have started ec”. Didn’t fill me with confidence. Well done for getting through this first part.

I have the same 4x2 week cycles. But it’s still the end and then it’s done 😬.

@dancingwhilstfacingthemusic this is exactly what I am worried about too! I also have hormone positive HER negative, and I don't like the way that the probability of recurrence seems to carry on into the future at the same level: the level's low, but not dropping off over time as far as I can see. I am very glad to read about this trial... thank you.

@drivinmecrazy I can really sympathise with you.
I had my surgery a week ago today, and honestly I felt emotionally better almost immediately. Physically tired, dizzy, some pain etc - yes, but emotionally I feel much more buoyant. I know everyone is different, but that's how it was for me. Waiting for treatment to start is so difficult. And I can easily imagine that your dh - or anyone else - however well intentioned is bound to say things that will feel wrong. I have no advice except to be v kind to yourself however you can, and know that you are in a very difficult patch.

@drivinmecrazy echoing @breastcancerpanic : emotions all over the place, v volatile post diagnosis pre-treatment seems to be standard. You’ve also had a long old wait which is torturous. Sweeping generalisation, but I think it’s quite a male reaction to be solution oriented, we’ll do this, then that, and not quite know how to deal with messy emotions. It is tough for husbands/partners.

Try not to look too far forward re recurrence or you’ll drive yourself nuts. I still have to work on that. I had TNBC which is aggressive & has a relatively high recurrence rate in the first 3 years, & then tapers markedly. It also has fewer treatment options. I had a spell of feeling upset about ‘fewer options’, but then decided to try to focus on the ‘good’ bits, have aggressive treatment and crack on. All the information we have is, I feel, a two edged sword. We are better informed than previous generations, more treatment options, more coming on stream, but more stuff swirling around in our heads feeding anxiety.

Vent away, be very, very kind to yourself and a bit kind to your husband if you can manage it, and you think he deserves it!

@drivinmecrazy I think it must be so hard for partners/husbands, and (massive generalisation incoming) I think men have less emotional intelligence than women, and are not good at just listening and maybe giving you a hug, and instead come out with thoughtless comments that they think will help. Hugs to you, and vent away!

I have a 'boyfriend' (ridiculous at our age to call him that) but we don't live together. He quite often says 'I feel your doctor has a finely honed plan, and you will beat this'. That's probably true, but bloody hell I've been having a rough old time since the beginning of August, it would be nice to have a hug and for him not to say that. I'd also like him to do practical stuff for me when I'm feeling like crap, as I live on my own, and have been struggling with everything. That's my little rant ...

Update from me.

bloods all good so we start paclitaxil tomorrow. Said to my oncologist that I was nervous about it because it’s new but whilst he gets that he still told me it’ll be fine!

also had an apt with my surgeon today. Did ultrasound - cancer is looking smaller and feeling softer. Win! And we talked surgery. Provisional date 25 February. Also win. Date in the diary. Which is a huge step.

he also showed me an implant. So I know what to expect. He’s advised reconstruction at the same time as mastectomy ( unsure yet whether it will be single or double - this is dependent on genetic testing results).

Rant away. I’ve shouted at DH too. Because how can he possibly get what I’m going through?!

i agree I think it is hard for the mens. But to be fair to DH he has been amazing (I don’t tell him this enough though).

I have found this to be such an emotional rollercoaster, it all seemed unreal until I had a surgery date, and now I've had that I feel in a bit of a no man's land. People keep asking "is that it then?" to which I don't know the answer, and "are you better now?" to which I do but they probably don't want to hear it.

My DH has been amazing but I still don't think he can grasp the enormity of how different I feel, not just physically but emotionally. That's not a criticism of him but I think he's hoping that once I've recovered from surgery then I'll be ok - and I can't say yet whether that's the case or not.

I'm glad that you have a date @ememem84 and some encouraging news, likewise @drivinmecrazy.