Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Sierra
seven weeks of delays in total because of incompetence / mistakes. Is it this bad everywhere?
I really think it is like this everywhere-I’m at a ‘centre of excellence’ and they’re on their knees, combined with huge structural disorganisation that means right hand doesn’t speak to left hand. Individually everyone is lovely, but they’re paddling against the tide of chaos just to stand still.

Thanks @mowly77 for the reassurance. It's people who I've had to give some version of for work that are most tricky, and then the very specific questions about the details of what's going on. People knew I had a hysterectomy but I didn't mention why, expecting that was all it was going to be, I'm now saying "further complications after surgery" though it may become more difficult after a while, depends what I get away with with cold capping / wig. It may become very obvious I am a "cancer patient".

Yes @MrsWooster, the nurse did say "this keeps happening but nothing changes". This delay could be general under capacity, the previous two have been down to staff negligence (lying about a scan) and incompetence (angry at me for raising valid questions and refusing to discuss so I had to go to a second oncologist in that hospital - who did discuss it with me - and get a second opinion from the Royal Marsden who confirmed my understanding was right). I already went through PILS to try to get things moving but I am going to make an official complaint.

@SierraSapphire how awful for you, especially after the hassle and delays you've had. You build up to chemo and then to be turned away and advised to go next week is not acceptable. I was once in the chemo unit in a full bay of 6 patients and 4 were sent home as their drugs weren't available. I was lucky that day but this then created more delays for those who had to return.

I found the lack of privacy over my diagnosis really upsetting. Everyone seemed to feel it was fine to ask all the details and most didn't hold back with advice and stories of someone they knew who had worked throughout chemo, didn't have any side effects and some did it so well they didn't even lose their hair. It was another kicking when I was down, I suffered a lot of shame surrounding my diagnosis that somehow I'd 'let myself' get into this terrible state of health so this made it all so much worse. A particular low point was when I very nice neighbour of mine, whom I'd not spoken to for many months at this point, tentatively asked if he could help me with anything at all as he had heard that I was unwell. I then realised that one of the other neighbours had 'spread the word' without my permission.

@Fantasea thanks for the sympathy! I'm starting to wonder now whether the risks of chemo now outweigh the benefits as I will be 11 weeks after my hysterectomy when it's more effective after six and I was borderline anyway. I'm going to try to get further advice today.

I don't mind the general "how are you?" questions (without the head tilt or the gentle touch on the arm!) as you can answer them in your own way giving as much or as little information as you see fit, it's when people start to ask very specific questions about diagnosis and treatment and what you've done and what you haven't done that I find much more difficult because sometimes it all feels too stressful to think about at all, especially when they then try to find you advice, but I haven't really found a way of dodging those type of specific questions without seeming rude, but maybe I just need to not worry about seeming rude! I'm also not entirely sure who's passed information on, I didn't stop DD who is 19 from talking to her friends and so they probably told their parents, and we live in a smallish community so I don't know who's going to know when I go out. I feel some shame about my diagnosis too, I'm not sure why.

@SierraSapphire sorry you didn’t even get your chemo. When you’re all geared up for it you must have felt so furious and upset, I would be in pieces.

Yes it’s a shitshow everywhere. I’ve been warned delays could be possible as the department that actually makes the drugs is really understaffed. Can’t change any appointments for example as they won’t rebook them.

PALS yes definitely complain (but they’re too busy at my trust to get back in the allotted timescale). BUT it is an official process so they will have to look at your case, answer difficult questions about their own failings, & report back. Eventually.

I would go with what the Marsden say about chemo and whether or not you need it/ delays etc if possible, if that’s what the second opinion was about.

As for other people asking for specifics: they can do one! Now is the time to EMBRACE being rude. Well personally speaking of course! Frankly I find it liberating.

My sister in law is one who has to know every detail, I avoid taking her calls as much as possible. Its like an interrogation by the Gestapo, and ends up with me feeling more depressed as shes always telling me how awful I must feel,and she doesnt know how I cope etc. She rang two days ago and left a message and Im leaving ringing back as long as possible !

My brother is the worst for this, he sends me single questions by text and I respond in detail but then he doesn't reply, so I feel like I'm just managing his anxiety and emotions rather than him supporting me. Ironically he has health issues and he hates being asked questions about them!

Good lord @thereisonlyoneofme & @SierraSapphire I wouldn’t be having any of that.

I am so fucking in the doldrums at the moment. I’ve been reading DD a chapter of Winnie The Pooh — original old school 1950s copy that was my mums — -and I don’t half feel like Eeyore.

I’ve just burned a 16 year old friendship to the ground as he’s been shit. Would be amazing if he ever asked me how I am let alone anything else. I do have mixed feelings about this however. I am very angry but not with people. It’s not their fault. The universe is awful and random and unfair.

@SierraSapphire could you stop answering your brother’s questions? I know I would, simply for the reason HE ironically is causing YOU more stress, and at this time in your life you need to minimise YOUR OWN STRESS and PUT YOURSELF FIRST.

But I also appreciate we are all different. And I’m definitely in the mood to burn Bert thing to the ground. Problem is we are women. We have been conditioned to be nice and caring and look after others’ feelings. Mm right now I say FUCK THAT

Hi @Silkierabbit I love that you forgot your own cat and wondered why you had so many pictures of a cat on your picture roll! That’s properly cheered me up. My chemo brain is awful coming along with me menopause brain and the-drugs-I-take brain. I fully sympathise!

I frequently walk into rooms and forget why pick up my phone and forget what I was going to do with it literally can’t remember anyone’s names … haven’t forgotten I’ve got 2 cats yet though although I am sure the day is not far off

@mowly77 sorry about your friend, this certainly does highlight which friendships are and aren't strong. I've got a very old friend who when I saw her once before my surgery and once after was great but hasn't contacted me since she found out about the chemo. My brother - I do ignore his questions sometimes - know I should tell him directly really but there was a lot of male anger in our family and because our DM is very frail and needs a lot of support I keep the peace (though it does occur to me this is probably not helping the cancer and he does practically nothing for DM anyway).

Glad it cheered you up Mowly Things maybe improving DH said to me he had gone downstairs and could not remember why and did I know and I did. 😎

Am mid radiotherapy now, 2 down, 3 to go, finish on Wed, very quick, about 5 mins each time. So far fine, just felt a bit sick, but 1 onda and sorted. Using Aveeno cream as they don't supply anything but that is fine atm. Endocrinology also called me in for blood test cortisol on Wed and another one in September and after radio is finished its just hormone meds and reconstruction operation at some point. Hair is growing, grown about an inch from chemo which finished end June.

Hoping can get to France after radio to see MIL etc. DD is doing brilliantly, GCSEs went really well, loving her punting job, doing every day pretty much her choice, A levels next, results on 25th June. Floof is amazing. Sorting house as well now, finished clearing things, all clean thanks in part to one-off cleaners, doing new flooring soon, great to be back to that. DS still no education plan and not great so he is my big project but hope to get him back on track before too long, will help being on less treatment. Want to do more exercise as well once recovered from radio and looking into options.

Love to everyone.

Glad you’re not finding radio too bad Silkie. Sounds like you’re on the home stretch now treatment wise!

I start chemo Thursday. I am sick with fear. No idea how it’ll feel (carbo/taxol, no idea whether you feel sick or tired or unwell or what). I’ve got my induction this morning and clinic tomorrow for questions.

I wore jeggings two days in a row Thurs/Fri as I was making the most of seeing people before chemo, turns out it was a bad idea as my tummy has been so sore and swollen since. I’d thought 8 weeks post debulking I’d be fine, but no.

My main fear is my CT next week. What if it shows more. What if it’s bad. I’m petrified. I’m picking up some Zopiclone today to help me sleep as I’m barely managing to due to the fear. Every twinge is instantly cancer in my head. I don’t know how to get mentally strong again.

Hope the chemo is kind to you but kicks the cancer out Great The first one is the worst to get through as its new but once you are through that cycle (keep a diary) and it pretty much repeats so you know what to expect. Unusual to have sickness on Pax, well you have it mildly but you are given lots of meds and maybe 1 bad stomach a week and slight nausea on a couple of days but just so say you don't want to eat cream but can eat everything else. Call chemo line for different meds if its worse but that its very rare.

You do get tiredness and that builds throughout but its awake on steroids and can't sleep 2 days then tiredness but its more annoying than anything. Neuropathy was my worst thing and its still there after finishing but I was quite extreme for it.

Its normal to be scared for scans, though as you do more of them you get more meh about the actual scan process but results are always terrifying.

I have not achieved mental stability, have massive rollercoaster of emotions, does not help having kids problems to deal with as well as my cancer. Hope you can but otherwise just take one day at a time and use counselling / meds / chemo buddies as needed and you get there and it does end. I am definitely not keep calm and carry on, more like keep having a breakdown and carry on.

I'm going to be a day ahead of you @AGreatUsername - will let you know how it goes. I'm assuming I'm going to be fine on the basis that I'm pretty fit and also friends my age (53) have managed relatively unscathed. I might have a cruel surprise but I'll deal with that at the time! I am worried about the longer term effects though and also whether my life is going to fall apart in the process. DD will be leaving in September and many of my friends work in education so they'll be around a lot less. Also am I just going to have to stay in a lot because of risk of infection? It could all be very boring and isolating.

The advice on here from women who've been through it is always good though.

Hi folks and hello to new faces. Sorry to hear about the pleural mets @MrsWooster that’s a hard blow.
Well I might just cast off the ropes and go back to sea! This is turning out to be a tricky week. It’s my lovely DDs wedding on Saturday and we have builders here and I’m rushing round getting things ready, nails done etc. DH is away and doing a very hard sports event so I don’t want to trouble him or my DD. I have got appointments for eyes and my swollen arm and now I’ve gone deaf in one ear and have to have an urgent brain scan and take lots of steroids and I think I’ve got a lump in my other boob. I am trying not to panic or catastrophise but life was a lot easier out at sea worrying about rocks!
On the plus side my lovely BC yoga group had a session with alpacas today that was brilliant. I’ll post some pictures. My soul was soothed!
I would really like to put the clock back to the time when I was actually a bit bored with my life. It’s too damn interesting now. Sending love to you all
Top

Lovely pictures Top

So wonderful your DD is getting married, hope its a great day, sure it will be.

Sorry to hear about your health worries, hope they prove to be nothing, probably will be but always scary these tests. Good you are keeping busy, distractions always help.

Good luck for your chemo too Sierra

Third radio done, its so quick, 5 mins though for some reason feel sick on it and thought would be sick over machine today. Thankfully wasn't. Its so easy compared to chemo though and rare to feel sick on it but no tiredness or any other symptom yet. My numbness is worsening from chemo, weird. And its only odd moment I feel very sick, maybe nerves. 2 to go, yay and a blood test on Wed then no appointments in person until 8 September, just one phone call. That's 4 weeks with no hospital visits, for first time in almost a year.

Proof of chemo brain. Getting a wooden floor fitted and builder wanted picture of room so I said here's a link to our house pics on Rightmove. Only what I sent him was a link to a Pamela Reif workout. 🙀

Top I’m sorry to hear your medical news-I hope it’s ok. I don’t wonder you want to be back at sea-following your adventure was marvellous!

Sorry to hear about the issues and panic Top although yoga with llamas sounds fabulous I am most impressed. Yes life at sea is sounding good now

I am also wondering how Olivia Newton John lived with breast cancer for thirty years.

and now I’m going back to sleep as I’m tired and feeling yukky.

@great @SierraSapphire hey it’s ‘nice’ you are chemo buddies … agree with keeping a diary of symptoms and then you’ll see your patterns. Wishing you very good luck. I’ve done 12 paclitaxel although they are at a 75% reduced rate so you can do it too. I have to carry on which is aghhhhhhh if I decide to of course. But right now my symptoms are just about managable so we will see.

Sorry to hear they want you to do more than 12 Mowly urgh but I guess it makes sense if its working. I had mine after surgery with NED on scans so all I saw was side effects. How long do you have to carry on for? Will they scan you again to see what is happening with cancer? I think I would carry on if cancer still there and appears to be working.

I think with ONJ she had her first BC diagnosis in 1992, at an early stage. Then she had a second cancer - either a new breast cancer or a different cancer - in 2012/13. The BC metastasized in either 2017 or 18 in her spine. Im not sure where the whole she was living with it for 30 years has come from?

Also the news did not disclose how she died, although I see her niece or someone is spouting off in the Mail about how thin she looked on a Facetime call last weekend. So who knows. All sorts of things have a chance to go wrong when you live with MBC.

Does anyone else feel that every conversation they have with the hospital is a battle?

I've just spoken to my consultant about a number of things, and it kept going along the lines of:

• Why does my second opinion pathology report have something different from yours?
• It won't change your treatment plan
• No but it might change my decision, so why the discrepancy? Did you have different information because you did the surgery?
• No (slightly scathingly) It won't change your treatment plan (implying it doesn't matter)
• No, but I have two reports that have conflicting information, I'd like to know which is correct so that I can make decisions
• The priority is to get you into treatment.
• But that's not answering the question I'm asking.
• I'm sorry you feel that way.

Aaargh. I feel no one there is on my side. They've made some pretty big mistakes so I'm guessing they're trying to avoid admitting any liability but I feel upset every time I try to get some answers.

@sierra, your Dr couldn’t have been more dismissive and patronizing if they’d tried and I’d have been tempted to poke my finger in his or her eye.