Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

New thread

I’m sorry to hear your latest news @Pinchaperfect but as others have said, nothing is guaranteed in the cancer world and timeframes are only estimates. My brother had a 10% chance of survival from his cancer and he’s still here 25 years later.

I am taking capecetabine but I’m also having infusions of oxaliplatin so it’s hard to unpack which side effects come from which drug. Also I’ve had bowel surgery for my cancer which causes diarrhoea so there are 3 possible causes there! Overall I would say the capecetabine haven’t caused me too many issues. I get diarrhoea and feel a bit tired. I also have peripheral neuropathy but that seems to be from my infusions as it hits straight after I’ve had one and improves over time, even while I’m still taking the cap tablets. Does anyone else find it annoying these drugs all have ridiculously long names?

I’m having some liver pain now from the chemo which is apparently ‘normal’ and though my liver enzymes are elevated they’re not at concerning levels. I can’t take ibuprofen when on chemo and my oncologist said to limit paracetamol so I don’t upset my liver further so it has meant more time on the couch and I save the painkillers for when I really want to do something. I saw my daughter perform in her school musical last weekend. I felt like shit that morning as it was only a few days post infusion but I’m so glad I went.

The Cape will make your hands and feet dry out and peel. Going into hot water will aggravate that. I have been avoiding my lovely hot tub. I reckon you could probably swim in cold water though, and maybe get the spa day in quick before you start.
Bedtime now!

It's because I work in theatres which is considered 'high risk' and I need to be on treatment for a year, my half pay runs out in September so I have to go back really and I can't go back clinical whilst on treatment. Mainly due to the IV steroids I'll need to dampen my crohns because it can flare on immunotherapy, so they've offered me redeployment instead of continuing on sick pay. X hope Glasto is good!

I think I feel pissed off because I can't drive at the moment because it's my left arm that is sore so I can't change the gears quick enough. I want to go swimming but the wound is dehiscing under my arm so it's all wrapped up at the moment, and I don't like walking but I have to do that as my only exercise 🤦‍♀️. I went public with my cancer spreading on Facebook this week, I got a bit sick of nosy people messaging me angling for info. It's out there now.

I know that I am lucky to have such an incredible team and a lot of options in front of me with regards to being stage 4.

@FangedFrisbee don’t be afraid to set boundaries. People are unbelievable. I even had an ex boyfriend from 17 years ago that treated me like absolute dirt and cheated on me pop out of the woodwork - he heard on the grapevine that I had cancer and text me saying “what’s the prognosis?” Like I’d be sharing private details about my diagnosis with him! I had a cut and paste message I used to send to save me typing stuff out (and also stopped me from sending rage-filled fuck yous..)

@Pinchaperfect so sorry for your news. It can take a while to get your head round it when the treatment plan you were expecting changes. Especially when you were making plans around it.
@TopOfTheCliff , as ever, you are an inspiration. ( you really don’t need to try ALL the treatments for us…much as it’s appreciated ❤️) Hope your energy levels get back to sailing levels.

@Pinchaperfect I'm so very sorry to read your update, that is so unfair. Sending love Xxx

@FangedFrisbee I'm so sorry you're having such a tough time. Cancer takes away so much and no-one outside of this understands. I also hear you on not being able to drink alcohol as just another thing. I drank very little before my troubles began but it's nice to have the option. I can't drink at all on 3 of the drugs I take and there are times, especially around appointments and results, when I would just love a glass of wine. I agree with @Worry on setting boundaries, somehow having a cancer diagnosis makes your medical information available for everyone and also they are free to dish out all sorts of stupid advice. I had someone I barely know ask 'what stage cancer is it?'

I'm in my early 60s and had quite a sudden change in my bowels a fortnight or so - blood and mucus. Lost a few kgs over the period (but could be the anxiety that's damping my appetite) went to A&E as was worried - did a load of blood tests and all within normal limits and told nothing ' imminently catastrophic'

Fantastic care so far from the NHS - saw GP Tues and 2 week referral done. CT abdomen booked Friday and a load more bloods/poo samples and waiting for colonoscopy.

I am currently overwhelmed and feel utterly enveloped by anxiety about what the outcome will be. Off sick from work as I can't focus. I have a lovely supportive partner. Any good advice about managing this period ?

Thanks everyone, and thanks @TopOfTheCliff , hadn't considered this, just grateful she said i could still swim tbh as ive only just started back at this after my heart op.

@FangedFrisbee and @WorryMcGee Thats one of the reasons I went public last year too, because a few friends knew, then every man and his dog seem to find out and got loads of messages, so was easier to tell everyone. Sorry you can't drive and do the things you want to at the moment, cancer is shit.

Thank you @Remaker That's fantastic to hear about your brother, and I know you're all right about them not knowing exact times, it's just when you're intially told, it takes me a few days to digest everything that's said properly.

@spiggydit this bit is the absolute worst bit, be kind to yourself and know that you’re completely normal in feeling like you do. My only tip is stay off Google, please please stay off Google. I stay clear of cancer forums as well (I don’t include this thread in that description obviously!) but I know others find them helpful. We have a virtual Rage Room here which you can let off steam in (I’m often in it but there’s plenty of virtual crockery for everyone to smash)

Thanks for the support! I knew you guys would get it!

I think I'm feeling frustrated because my mum loves 2 hours away and is desperate to see me before treatment starts but it's like cancer has become my new full time job. They expect you to be able to 'pop in to clinic' or 'could you come in tomorrow for a scan' and I can't do that if I am 2 hours away. That's where my boundaries need to be a bit tougher I think

Speaking of the Rage Room, I need it again today. BCN said to me today in relation to Tamoxifen (and my decision not to take it): “well if you looked at the side effects on a packet of paracetamol and believed they’d happen you wouldn’t take them either”. Where do I even start with that?! First - patronising AF. I am perfectly capable of making risk-based decisions and deciding which risks I am comfortable with and which ones I’m not. Second, you don’t tend to take paracetamol every day for 10 years. Third - paracetamol isn’t a daily reminder of one of the most traumatic experience you’ve ever been through. Fourth - paracetamol nasty side effects aren’t “2 in 10” like tamoxifen is, they’re much rarer than that.

How dare she compare having to take bloody Tamoxifen every day to taking a couple of paracetamol once in a while. Asked her again to tell me what the actual benefit to me would be rather than the usual “x% reduction in risk” (x percent of what? A 50% reduction sounds amazing but if it’s a 50% reduction of 1% what’s the point?!) and of course she couldn’t answer because they never can, so yet again I find myself having to explain that I would rather take the unquantifiable increase in risk over the almost certain impact on my quality of life and mental health. “Oh many women feel like Tamoxifen is a lifeline” wow okay that’s great but I’m not many women, I’m me, and I can’t even look at the packet without breaking down in tears.

I’d been feeling so positive about my decision and like a cloud had been lifted for the first time in months, and she’s dragged me back down 😞

smashes plates

@WorryMcGee thank you for both the validation and the advice. Trying to stay off Google but distracting myself with other mindless scrolling !

@WorryMcGee when I was challenging the treatment plan that my hospital had given me. The CNS was more concerned with trying to argue with me about the benefits of having it than helping me make an informed decision. It took a second opinion from the Royal Marsden to convince me that my decision was right. But I still don’t feel able to contact the CNS is because they were so unsympathetic to me. I found some research somewhere that showed that medical staff were really quite unaware of the side-effects of various treatments on people.

@Pinchaperfect what shocking news for you, cancer is shit, but fingers crossed that treatment is as effective as possible for you.

@Pinchaperfect sorry to hear your update, such a lot to get your head round. Keeping everything crossed for a good response to treatment.

Agree that you need to have firm boundaries, everyone seems to feel they've got the right to know about your medical history. I had a bit of a falling out with a work colleague the day I was diagnosed - she sent me a shitty text for not telling her exactly what was going on about three hours after my appointment. I was like 'look, I need time to process this myself, and then speak to my immediate family, you are way down on my list of priorities at the minute'.

It's the people who you're not close to who ask straight out 'what stage are you? What's the prognosis?' that get me. It always seems like they're asking 'so, you gonna snuff it then?'

Another chemo and radio down, my bladder was impeccably behaved thank god!

Hi @FangedFrisbee

Good luck with your new treatment, I will keep my fingers crossed for you it's effective and you don't feel too unwell on it.

I'm so sorry to hear about your cancer meaning you can't have a baby. I apologise if this is outrageous, but I wonder about surrogacy but 100% you and your partner's biologically? I know a couple that did that because she has a mitocondrial disease (they didn't use her eggs for that reason). It did cost them their life savings and they had to go to Florida. I apologise again if this suggestion is completely inappropriate.

Please don't feel it's hard to post having a different cancer to most xxx. I very often feel totally out of place with other breast cancer patients because mine is not hormonal and all they ever seem to want to discuss is oestrogen blockers which is completely understandable, just that I am not on them because they wouldn't help me, plus my cancer is more aggressive. Cancer is unendingly diverse.

I am an two immune therapies and get a lot of diarrhoea on them, but it's painless and I actually prefer it to when I was constipated for 2 months on EC chemo. How interesting the symptoms you listed mean they are working (the ones you are starting).

Hi @RedRosesPinkLilies

That sounds very thorough! I really hope your results were good enough for the optimal dose of chemo or at least close to that.

I have since spoken to a friend who said the only fibrosis she would worry about would be lung and if it was spreading further in the lungs. So I am going to leave my kidney fibrosis for now, and next year when they do my next pancreatic MRI I will see what the report says.

Thanks for trying to find the name of your test, I think your description was more than enough xxx

@Icantfindanewname

Interesting you had surgery first. Was that last June, so 2022? If so, our timescale is the same, I was diagnosed last June, although my treatment started with chemo.

When did the CIPN start for you? I agree, it is the worst side effect for me too, although I had other horrible things too. Thank goodness the amitriptyline worked so well for you with that.

Wow, your hair is already so long!!!!!!!!! Did you go bald? I did and mine is now a super short pixie, which I am fine with for now. No idea how to grow it out though and I had long hair pre-chemo. How kind of your hairdresser, he sounds really lovely.

Yes, I have often thought about exercise, how I need it but rarely did any. Since your post I contacted Safefit, which sounds exactly what I would have loved, but they said they won't be taking on anyone ever again now, the trial is over. How great you knew and joined that, it sounds like you have done really well on it!! His name would be useful, thanks! I will PM you. thanks for offering that x

@Pinchaperfect

I am so, so sorry to read your update from yesterday. I read it yesterday and have thought about you a lot today. I hate cancer so much there are no words.

As others have said, things are changing fast in cancer treatment, and prognoses can turn out to have been wrong or can also be changed. The head of a Maggies centre told me that there is a massively huge amount of guesswork in cancer care.

Good luck on capcitabine. I hope it's effective and doesn't make you suffer too horribly with side effects. I don't know that chemo.

I can imagine it was a blow about immunotherapy. Did they explain why you can't have it?

So sorry to read your news @Pinchaperfect Cancer is just so unfair and you and your family must be so overwhelmed at the moment. Thinking of you...I know it’s cliche but remember you aren’t a statistic.

@WorryMcGee I hear you about the BCNs…I do understand that they must work in difficult circumstances and at times a very stressful job. But the ones I have experienced do seem clueless on the emotional demands that cancer puts a person under. Surely they get continuous training? Sorry if that offends any nurses on here…I get it must be extremely difficult to put yourself in a patient’s shoes when there are so many other time demands.

Im currently feeling like Wonder Woman. I had reaction to the last round of Docetaxel (sp?) so the docs answer was to change the chemo drug or give me more steroids. I went with steroids as it was just awful acne and spots so in the grand scheme of things I thought better Chemo outcomes trumps spots! Interestingly my hair is growing back on doc…I’ve almost got a full covering! Has anyone else had hair start back growing before chemo finished? I’m not complaining…but I would really, really struggle if it fell out again. I’m not convinced about the horse shampoo but will try the Lush bar I think!

Sending positive vibes to all those awaiting results, those undertaking treatment and those on the other side. X

Pinchaperfect So sorry to read your news and hope you can defy the odds.

Worry That is one of my pet hates reduces risk of reoccurrence by 30% etc just to make it sound like a big number not saying 30% of what. The Tamoxifen I did get them to show me the model, its online at PredictBreast and it was 10 year figures but there's overlap in benefit from chemo and hormone tablets. For me there's something like a 10% more chance of being alive with Tamoxifen as in 10 in 100 cancer patients live if take it and don't if don't. So I take it but even just getting it does my head in. Somebody has decided NHS prescriptions can only be for a month apparently to save money probably because people give up but I need it for 10 years. So every month fill form in for gp then drive to chemist then often don't have brand as shortages so wait and drive back. Such a waste of time and this time gp has lost prescription as well like I don't have enough stress. And now today got a call from receptionist at gp saying doctor wants to talk with DS, he's mute. Nothing can ever be easy.

@WorryMcGee

I also got that idiotic spiel from the BCN about the side effects of Paracetamol, that if you read them listed in the leaflet you'd never take it. She was saying it in the context of CHEMO (!!!) I felt like hitting her in the face. Stupid cow. Surely they can't truly believe comparing Paracetamol with Chemo is even vaguely at all acceptable, reasonable, accurate, proportional or fair?

That BCN also told me BC doesn't go to the brain. Well, my type DOES: 50% of first metastases of my type of BC are in the brain.

I suppose the NHS is soooo desparate for people willing to be a CNS that they literally employ anyone willing to turn up.

@SummerCycling oh you are kidding. Seriously. That’s even bloody worse! God I find it so patronising. Comparing chemo side effects to taking paracetamol ffs.

I’ve felt so low all day. It had been so nice to feel positive again and now I’m right back where I started, feeling like I have no hope and that whatever my life is now will just be shit.

@Silkierabbit I feel like a
broken record with it. 30% of what, 50% of what, do I count the lymph node with the teeny micromet in when looking at the PREDICT tool or not (because on the one hand they tell me that if it had just been that one micromet I wouldn’t have had chemo or lymph node clearance as it doesn’t “count” but then when they do the tool they put two positive nodes in…well which is it? Either it counts or it doesn’t) what studies are there on lifestyle and reduction in risk and all I get back is the same unhelpful answers.

It’s probably somewhere between the two @WorryMcGee - I had that when my second opinion couldn’t work out whether I had a tiny patch of lymphovascular space invasion because my hospital had smudged the slides. It only seemed to make 1% difference, though I had to dig through a lot of research papers to find that out. My oncologist just shrugged.