Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

woken up with really bad throbbing back, ribs, pelvis. I have been told this might happen a couple of weeks after the first chemo.

Is this just t abad day or is this new normal?

Ive taken iprobrufin and paracetamol. I assume thats ok, nobody has told me not to

@EachandEveryone for every cycle up until now I’ve had bloods done two days before the chemo appointment and also a telephone appt to talk briefly about side effects. In that call they tell me bloods are fine and they’re going to “authorise my chemo”. I’ve never had to do/book anything myself it’s all done for me but when the phone call didn’t happen this time I thought it was weird. Turns out (at least here anyway) it’s not ordered until it’s authorised, and they have to speak to you before they authorise it regardless of bloods being fine or not so as I got missed somehow nothing happened! I called the chemo suite, I find the nurses in there easier to talk to than my BCN but that might be because I see them more often. They were lovely and sorted it out for me within 20 mins of me calling - someone went to the consultants break room and said one of them had to call me 😂

@Nimbostratus100 my pelvis absolutely kills for three days after paclitaxel. It’s so painful I can’t sleep, only co codamol touches it. That and shooting pains like the lightening crotch you get when pregnant 😬 it didn’t happen on EC but I found that a lot easier than I’ve found this one (I hear most people say it’s the other way around) it goes away as suddenly as it comes on, I hope yours goes too x

I have exactly the same pains with Paclitaxel three days after. Luckily just normal painkillers work.

thank you - I wasnt even sure it was ok to take the normal painkillers, but had already swallowed them before I had thought!

I took Kalms to help me sleep I didn’t realise we are not allowed valerian. I think I will ask someone to make sure as they really helped!

@Nimbostratus100 you can take pretty much every kind of painkiller but if it’s not enough then ask for stronger ones. I needed para/ibu/codeine and also gabapentin to get me through paclitaxel as the pain was ferocious. Once I was on the right combination I sailed through.

Just had a lovely tea and chat with a new friend off a FB cancer page who lives near me. It was so nice to talk to somebody who gets it! She is on her fourth time round with BC which makes me feel like a beginner on my second.

Question - How do you learn to live with the crippling fear?

I’m nearly 3 months out from chemo. All clear so far. Now on anastrozole to keep it that way hopefully.

But, recurrence rate for me is anywhere between 50-90% (statistically it’s 80-90% but that date is from before inhibitors we’re a standard, new data suggests 50-60%) and I still find myself writing myself off and not daring to see any future. I am back to my old self, I’m working full time, making the most of things but inside I am terrified, all the time. All the time. I don’t want to die. I don’t want to wonder if I’ll make 40. How the hell can I stay positive? I did wonder about counselling but don’t know where to start and I think I’ll just cry ha.

so sorry you are feeling like this. 💐@AGreatUsername

Thanks @Nimbostratus100 I’m normally so positive I’m struggling with this!

Have we heard from @thereisonlyoneofme lately? I’ve been thinking about her. I hope you’re okay, as okay as can be.

@AGreatUsername sorry to hear you are struggling with the Fear. This is one of the subjects I covered with my new friend today. I suspect you need to give in to the tears and have a good howl about how unfair it all is and how terrifying because on the other side of the tears and rage is a form of acceptance and coping that allows you to function. Counselling would be helpful I think.
My new friend and I were laughing at our black jokes about planning our funerals and what music we want. I was rewriting my will in my head and planning bequests. It kind of helps to go into those dark areas and come out again unscathed although it does shock innocent relatives and friends if they overhear you. I hasten to point out that neither of us has a terminal diagnosis but you can’t help the Doom thinking from sneaking up on you every now and then. Rather than panicking and running away I think maybe it’s okay to observe how you are feeling and acknowledge it before telling yourself to stop being morbid and do something useful.
Tomorrow I am going to see my favourite BCN for the big reveal on my wounds. They have been covered up all week and I have no idea what’s going on under the dressings. Also she has me down for a coffee and a chat which she thinks I need.

Sending strength to everybody that needs it
Top x

I've been having a frustrating week, and I feel like nobody gets it. But I think you lovely ladies might. Sorry this is long...

I'm two years out of active treatment for BC, and on Zoladex and Exemestane now. The Exemestane is really tough. I've had phases of barely being able to walk because the side effects affect my joints so badly. But through trial and error I realised there is one brand of Exemestane, from a pharma company called Zentiva, that is fine. Side effects are manageable. My GP and onc were delighted with this discovery and specified the brand on my monthly prescription.

Fast forward to this month. I can't get my meds anywhere. I've called 12 pharmacies. I've spoken to two pharmacy head offices. I've called Zentiva directly, and they're telling me the meds are in stock, but the wholesalers don't seem to be ordering from them at the moment. They suggested Brexit might be to blame as they manufacture somewhere in Europe.

So I'm stuck. I can't go to another brand because I can't go back to the level of pain I was in. I don't want to cut short my endocrine therapy as I'm very high risk for recurrence.

What now? My oncologist is trying to find a private route, but I'm going to run out in seven days and it's not looking hopeful.

@AGreatUsername I get the fear, too. I'm only paying very minimal pension contributions because I can't see myself getting to that age, while knowing that I'm a total idiot thinking that way. I'm 41. This is hard, so I'm sending you solidarity rather than an answer...

@KentishMama Can you try another AI, i.e. Letrozole or Anastrazole, until you are able to get the specific brand? Although of course, they may have as bad or worse side-effects. Or Tamoxifen, which is not supposed to give joint pain. Or have you tried taking the antidepressant Cymbalta with the Exemestane? It's not licensed for joint pain in this country but does ease AI-induced joint pain in many (I think it's called another name in the UK though).

I have every sympathy! I'm on Tamoxifen at the mo but should be on an AI. I felt like my bones were on fire with Anastrozole; Exemestane was better but trashed my liver so I'm plucking up the courage to try Letrozole. If not, my oncologist will keep me on Tamoxifen as that will give at least some level of protection. The hot flushes are brutal though & my head is gone - I found my phone in with the cat food the other day & went to pick my son up from school at the wrong time, on a regular day not even when he had an afterschool club. I try to laugh it off most of the time but it's just another rubbish thing to add to the massive pile of rubbish cancer stuff!

Im so fed up. I have an awful feeling round two will not start tomorrow.
nobody has rang me. I finally got my CNS to answer her bleep at 1500 and she said theyd been trying to ring me since yesterday. Thats not true Ive not had any missed calls and I have an answering service like everyone else. So, why not leave a message? She said my oncologist is on AL and I have to speak to another CNS who can prescribe my chemo after shes spoke to me. I said lets get off the phone then so you can tell her to ring me. Apparently I have to answer seven questions before she can prescribe it. She hasnt rang and my chemo appt is at 1200 tomorrow. Im at my wits end and normally Im lovely and relaxed going into it because it feels like something is getting done. I suspect this has gone tits up because of the consultant going on holiday. Even though he has been in touch with this nurse and told her my bloods are fine.

can she prescribed it without talking to me?

@HauntedDishcloth I've thought about changing, but the idea of trying another medication with bad side effects makes me want to weep. Last year I could barely walk. I had a few days where I had to slide down our stairs on my bottom because I couldn't walk them... I just can't do that again.
I know that Zoladex and Exemestane combined had the best trial results for my cancer, and I know I can hack it as long as it's the right brand. I'm just so... annoyed! Getting a prescription filled should be the easiest part of this entire cancer circus! I guess I'll be hitting the phones again tomorrow.

Hi was advised to post here.
Been diagnosed with rectal cancer yesterday via a colonoscopy.

Just looking to see if anyone has any experience of this. I know everyone says stay off Google but convinced myself it’s already spread as been experiencing pelvic pain on and off which is apparently a sign of advanced cancer. I’ve got a MRI tomorrow and CT next week. I know I have to take a step at a time. I feel like I’m dreaming and I’ll wake up. Many thanks for reading.

@AGreatUsername You need to cut yourself some slack and give it time. You are only 3 months out of active treatment and there is no way I would expect anyone to 'snap back' to how they were before. There is no before (sorry, Station Eleven fans!) to return to, there is only now and the future. Youve gone through a trauma a lot of people fear and if they do go through it, much later in life. So dont put so much expectation on yourself that everything is absolutely fine and dandy. Eventually you will learn to retrust your body and cancer will fade into the background.

As for the Fear, I fear progression and eventual death, but after two years of this MBC crap I eventually realised that none of us know our last day. People die out of the blue all the time, I could still pass from something unrelated to cancer (though that would suck!). Sure the odds are really bad that I will even see 50, but I don't really focus on that any more. Cancer is gonna cancer and there isn't much I can do about it but enjoy the time the drugs are giving me now and if there is some miracle breakthrough, I hope I am lucky enough to benefit. I certainly stopped my pension contributions a few years ago, though, and in a strange way its kind of a relief to not have to worry about retirement. :)

Echo @HerbalRefreshment , @AGreatUsername Be gentle and easy on yourself. Three months is nothing in the scheme of things. You may feel on the surface like you are back to your normal routine, but there is no 'old self' anymore. You've been through something incredibly traumatic, & that will forever change you — and not always negatively. You may discover depths of resilience you never knew you had. You may find you have less tolerance for those annoying fuckwits that do not serve you. You will need to take time to process everything. The fear will never disappear completely, but it will lessen. Live in the present. When I get The Fear, I tell myself that I know I'm going to die of cancer one day, BUT NOT TODAY. You, of course, may never die of cancer. We will all die, but (hopefully) NOT TODAY.

For me, there are very little upsides to having MBC (none in fact, I simply refuse them) but saying that, I no longer worry about getting dementia or saving any money whatsoever for retirement. My worries have been shuffled like a deck of cards, dealt out, & reprioritised. Which makes a refreshing change, if nothing else.

I know this is an anonymous forum but reading these posts makes me wish I could meet you ladies in the flesh. You write with such strength and wisdom. I hope I too reach the level of acceptance that you have. Today though I only have anger. Anger that I’m in this position; anger that I’m still only in the early stages of this f…ing treatment mountain; anger that even after the active treatment is over the drugs will most probably continue to f..k me over; and anger at living with the fear. I just want me back.

@Cocopops555 welcome to the best thread none of us want to be on. You are at the most frightening point in the whole shitshow right now and it’s hard to believe but once you know more and have a plan you will feel better. There’s a reason why we always say DONT GOOGLE because it’s random stuff and out of date. Stick to Macmillan or NHS choices or a site specific to your problem like GUTS UK. Try and keep busy and use a Calm App or get some pills from your GP to help you sleep if you need them. None of us coped very well at the stage you are at. But it gets easier.
I don’t know much about your condition but there will be somebody here who does, and there is always somebody around if you want a good rant.

@Whattodotomorrow only a few days ago we were discussing the Rage. It’s my default reaction to every bit of bad news. Go with it and have a good rant and a swear and smash up a few unwanted objects. I got through the whole awful Cancer triathlon and six months later I got a new primary and had to do it all again so I totally understand where you are coming from. It’s not fair and we don’t deserve it and it’s not sent for a reason - it’s just random bad luck and it sucks! On the surface I am polite and friendly and cooperative but cross me and I am a monster! You are among friends here xx

Thank you all, you’re all totally right of course. I am generally employing the NOT TODAY notion but as we all know some days this is harder than others! I am off on a wonderful holiday in 2 weeks with my short short hair and chemo fattened tummy and I plan to enjoy every moment.

Exactly @AGreatUsername . I just had chocolate cake for breakfast cause its Friday, February and why the F not? :D #LivingInTheNow.

Theyve cancelled my chemo today. All because they couldnt get intouch with me. They left one message on my phone with no return number. Im so, so angry. Ive already had a two week break from it. The only reason I know its cancelled is because I just rang the chemo suite and they said someone has cancelled it. I feel sick what does this mean? Do they do it on a weekend? Will it spread if I have a full week off?

@EachandEveryone I’m so sorry. If you have the energy call and keep calling until they fit you in somewhere. Two nurses stayed until 8pm for me yesterday as the paclitaxel didn’t arrive until gone 1pm because of the late ordering yesterday (and I cold cap so takes a lot longer), hopefully you will find similar kindness at your hospital. If you can get someone to speak to you this morning maybe they can fit you in somehow tomorrow, especially if yours is one they have in stock anyway?