Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

🤣 I suspect she'd had a few wines & sent a ranty email.

Union man was very helpful - they've backtracked on the 6 weeks no absence, apparently it won't matter. & OccHealth report will be mine to do with as I wish. Still not convinced OH can tell them much I can't. Still not sure what me being able to use the bathroom has to do with anything either tbh. If I couldn't do that, why would I be working the job I am 🤷‍♀️

They had an HR person sit in who made it very clear that they won't be handing me my notice if I do have time off. I did say I wondered if half the problem is I appear well & our admin squirmed a bit. HT tried making out I hadn't told them about potential side effects from any of the meds - I pointed out I did...last meeting...the one with magically vanishing minutes 🙄

She also queried where the last meeting's minutes were - seems no-one's seen them 🤔

Union rep's taken lots of his own notes & says no more meetings without him - obviously they know they'll be held to doing things properly there rather than me fight my own corner & be told silly things. He did say it's seeming to be an academy wide thing at the mo - so maybe they're cracking down on staff absence/policy.

Feeling better going into the Easter hols but think I may start job hunting anyway - everyone I like is leaving & I don't want to work with dicks who annoy tf out of me, or for a company who think I'm having time off to take the piss & think they can bully me into being in if I'm not good, with threats.

Boob job colleague called in to see everyone - totally blanked me 🤷‍♀️. Dick.

& then I walked into a CT appointment letter - at a hospital 2 hours away by bus. Erm. No.

So I rang to change it. They want it in April so it'll have to be other hospital that's not easy to get to on this date.

Nope. Also not good enough. Has to be the one only 40 mins away.

But there's nothing til May, she says. Well, May will have to do them then 🤷‍♀️ not my problem if they haven't got suitable appointments available, they can "want" all they want...I'm not spending 4 hours of my day on the bus for a quick scan & not being dictated to 🤷‍♀️

Off to the shop shortly for wine!

@lucysmam thank god they've backtracked on their pathetic " no time off for six weeks policy" 👏
I'm not sure about the purpose or value of OH tbh. I had my initial review ( by phone ) last week and she basically reiterated everything I'd told the Head anyway!

I think the " looking well" thing is a problem we might all face at some point and it's bloody annoying!

Union Rep guy seems sound.. 👍

Boob job colleague.. what a joke and piss take!

Power to @lucysmam 💪
Enjoy the wine ( no end of term ranty emails mind, or you'll definitely be looking for a new job!! 😂)

🤣 I'll keep it all in my head @Enigma52 !

@Alittlewornout Alittlewornout Have you had the biopsy now? Did they indicate when they might be able to let you know the results? Good luck and keep us updated x

@lucysmam wonderful kittens!! 💕and great job at work together with the union rep standing up to those ignorant bullies 👏

@TopOfTheCliff shocking what happened to you in the supermarket with that huge trolley. Falling over / being knocked over is awful, it seems to have an extra psychological effect that isn't obvious until it happens to you (I fell some months ago). I hope you're recovering from that.

@lucysmam
Excellent news on your progress with work and firmly knocking them into line. Your union rep sounds very on the ball and experienced. Hopefully you'll hear no more nonsense like this.
I have the same issues in that I look well so management were last week pushing for my plans on treatment and a return date. I'm currently taking time out at my GP's suggestion so that I can have my scans and consultations in peace without having to arrange time off from work before I accept them which was becoming a pain. I had to firmly pop him back in his place and mention that I am covered under disability legislation for him to shut up. I felt quite harassed.
I'm so annoyed that I'm taking next week off too so I can spend time helping youngest DC with their college coursework and taking them out places like the zoo - just to have a bit of fun while they're ignorant of my condition.

@Enigma52 Good to hear you're getting reflexology and soon acupuncture as well. Things like that can really help I think. I could have 10 hours of reflexology a day and still not find it too much. Good luck with sertraline, I hope it's effective for you.

Was it you who asked about Diazepam? That's what I use for MRIs and it's great for keeping me relaxed enough despite being claustrophobic. I take about 6-10mg depending on how long the scan is and what's involved eg mask over head and face or whatever. I'd be very scared otherwise, so it works very well.

@Tillly Daisy is so adorable 💜

@demivolte how are you recovering post surgery?

@MothralovesGojira Have there been any developments on them explaining radiotherapy any better yet, or listening to your legitimate concerns?

@SummerCycling thank you for remembering me. Unfortunately not good news the blood cancer is back. There is a plan which will start soon. Utterly devestated but remain hopeful.
My young adult children are home tomorrow absolutely dreading telling them. However at least I can give them a plan. My aim is to keep life as normal as I can for them and me.
I have the best consultant so I will put my life in his hands literally.

I've just googled reflexology to check I knew what it was 🤣 does the having another person touch your feet not bother you @Enigma52 ? I can't decide how I feel about it!

@MothralovesGojira surprisingly the HR person was more "on my side" than expected, as well as having the union rep there. I think there must have been some discussion prior to us joining them. She made it abundantly clear that she understood the setting targets was not productive & that it shouldn't have got to the point it was stressing me out.

Good on you for taking time out to do you things. I think sometimes employers forget we're people, in the same way the NHS sees us as numbers. & actually, sometimes we all need to kick back, whether it suits them when we do it or not 🤷‍♀️

@SummerCycling I'm so excited for the kittens. Mummy cat looks to be doing a good job & quite perky in the latest pics 🥰 She was off galavanting around dd's friends house sans kittens on the photo dd showed me earlier 😱

@TopOfTheCliff is the bone infusion similar to the Denosumab?

@Alittlewornout I hope telling your children goes ok. Mine just carried on as normal plus tablets/nagging to do (or not do) things 🤣

Fave colleague has decided to pass on pub day tomorrow 😥

@SummerCycling

Nope, absolutely none.
The last consultant has actually written to my GP complaining about me stating that I am being a bit awkward and reluctant to proceed but not stating why. I'm not sure what they were hoping to achieve - shame me into treatment on their timetable perhaps? They did add a P.S. to the bottom of the letter stating that oncology will definitely not see me at all and that I would have to wait until after surgery to find out what was going to happen. So seeing as it's two different hospitals with one dealing only with the surgery and the other doing just the oncology, the second hospital will not discuss treatment with anyone until I am officially passed over to them. Full Stop. It would have been nice for someone to phone me and let me know rather than me sat waiting for an oncology dept. appointment letter that was never ever coming.

Anyway, I finally had my bone scan this week and that will be a minimum 10 day wait for results. DP & I have decided that we can't tell youngest DC (and therefore none of the other DC) until end of May which is when college ends. Then I have an unmoveable chunk of important stuff to do in June/July so the earliest that I can consider any treatment is end of July. My plan is to hope the hospital will rescan me by end July and then consider options after. DP & I have gone round and round in circles trying to find a different solution but there really isn't one. Youngest DC is so mentally fragile and under so much pressure that it seems very unfair to light the cancer bomb under them when this is their last chance to take their college exams and they are doing so well and trying so hard to get good grades. So, please fellow suffers - no judgement please.

Wow @MothralovesGojira how does that work then - surely the depts need some sort of communication going on (although, from experience, that's hit and miss). What if something happens & onc input is needed (if it might be - I have no idea in reality).

I've just realised, I still haven't had the call I requested from Cardiac dept in the Christmas holidays 🙄 will be chasing that next week then.

@lucysmam well i thought it was head massage when I arrived! 🤦‍♀️ Only when the therapist start taking about feet, did the penny drop; I am
incredibly dense right now! 😂 Anyway, it was nice to be somewhere different, In a relaxing environment.

Why has fav colleague dropped out of pub? Email scandal?

@SummerCycling yes I will take anything right now. Funny you should mention MRIS.. when I had my
CT on Friday, I was sweating and my heart was racing. awful. So
hoping sertraline does something to
dampen this horrid anxiety.

@Alittlewornout there's always a plan, take a little comfort from that at least.
Thinking of you 🌼

@MothralovesGojira No judgement. You have to share information with DC when the time is right for you all as a family.

@MothralovesGojira Awful that you're having to cope with all of this together - we're Mums, DC always come first. Take care of yourself.

@lucysmam
Well, the way having two hospitals works is that it doesn't work really. They have a weekly Multi Disciplinary Team (MDT) meeting once a week where they discuss the new cases. So the BC clinic says we have patient A who has xyz. We will do this type of surgery & then RT so Oncology confirm no involvement needed from them. BC clinic then says patient B has wxyz and we'll do this type of surgery. Patient B will probably need chemo if you're agreeable. Oncology will just go ok we'll wait for transfer of patient B from you and we will then decide if it's appropriate. Post surgery BC clinic discharge you to RT or oncology and then you don't see them again for 12 months (at 1st post surgery mammogram). You're then transferred to hospital 2 who may or may not deal with you promptly or lose your referral (they lost mine on my first BC). So, basically the only purpose of having MDT's is so RT/oncology know how many patients to expect. It's not to work out a treatment plan to keep the actual patient informed of what will happen to them. They will not see any prospective referrals to discuss post operative treatments just in case BC clinic have got their biopsies wrong. It's madness because what you end up with is going into a life changing event with no idea of what will happen afterwards and those who choose to ask deeper questions get rebuffed by the BC clinic because they have to respect the boundaries of the oncology gods in hospital 2. Last time I never saw an actual oncologist until after my first chemo session - that's how horrific it is here. Obviously some patients will disagree but I'm a mid 50's, unattractive post meno woman who sticks a lot of stuff in the fuck-it bucket - I fully appreciate that I am not ideal patient material 😆

@Enigma52 @ajandjjmum
Thank you for understanding

@Alittlewornout
Sorry this has happened to you again.
I'm also on my second go of the cancer merry-go-round. My youngest isn't great at the moment so we've chosen to not say anything to any of them as it's unfair to expect the other two to keep secrets from each other.
I hope that it goes well.

@MothralovesGojira it is so frustrating for you to be caught in such a Catch 22 situation. Would a private oncology consultation help you get better information about your circumstances and the benefit of different treatments?
While I totally understand and respect your decision to delay telling your DC or starting treatment it makes me anxious that your cancer may be spreading and the delay will adversely affect your survival. The reason there are 62 day treatment targets for primary cancer and 31 day targets for secondary cancer is to reduce this risk. I was lucky enough to start chemotherapy within two weeks of diagnosis both times, and even then I was scared stiff the cancer was on the move. I am worrying for you!
Oncologists are well used to dealing with assertive postmenopausal women who want more information and evidence before committing to life changing treatment. That is their job, listening to and meeting concerns to reach a concensus. You just need to meet the right one and sit down for a productive conversation, not the battle you have had so far! I am frustrated for you xx

@MothralovesGojira I am so sorry you and many others also find yourselves on the cancer rollercoaster again.
Absolutely no judgement re sharing information with your kids. We all know our children best and as parents we make a judgement call on how and when to impart the news. I have kind of known for a couple of weeks but just confirmed yesterday. I haven't said anything until now because it wasn't clear and I didn't have a plan. Now I do I have some concrete info and I hope this will help alleviate some of their concerns.
I am upset on your behalf that you feel so unsupported and unheard by your medical team.
I have struck gold with mine, he gave me a big hug yesterday and promised he would be with me throughout these next steps and will always have my best interests at the heart of any treatments. My lovely husband also thinks he is fantastic. We both feel safe in his care whilst realistic he can't perform miracles. I will start treatment within a week. I can't ask for anything more.

Chemo pup-date
Have had her for nearly a year now.
We’re getting closer every day.

@TopOfTheCliff
Thanks for that info about targets Top. It makes interesting reading and confirms that I was not treated within time limits.
Where I am you get a 'named' oncology consultant who doesn't actually see patients so I never saw him. What I did see was a stream of different 'team members' each time I had contact so I had no continuity at all. During chemo I went to get bloods done the week before each session but had a telephone appointment the day before treatment day and that would be with a nurse - never a doctor. They would then order the chemo drugs for the next day. So I never saw an oncologist until I'd had three rounds of chemo and that was a "right you seem ok, off you pop" because I got sepsis after round 3. When they thought that Herceptin was causing changes in my lungs I saw a doctor who said that it would probably develop in to lung cancer eventually and stopped my Herceptin half way through (I'd had 8 of 18 treatments) They did a final blood test and a nurse held me down while another ripped my picc line out (yep I still have nightmares about that). I had a CT scan four months later and saw a different oncology doctor who said lungs were the same and didn't see another one again. I was not given a forward plan or any info for the future. I'm quite envious of anyone who sees a doctor more than once and a hug...that sounds like a fantasy scenario! I don't know what's going on at our two hospitals but it's nothing like I see described by others on here and I'm a bit perturbed by it.

I can't afford a private consult which would probably be with the named oncologist who never sees patients ironically.

I'm ok with waiting until July. It is what it is and I can see no other way forward at the moment but I understand the risks. I've spent the last two years preparing youngest DC to be more independent because I knew deep down that this was going to happen again but I just need to get them through college first. My first indication that the cancer was back was in December when the cat took to licking my head again (he did it the first time). I knew at my mammogram last month because the nurse had a slight shift in how she dealt with me when she checked the images which pinged my spidey senses. To be honest it helps that I have alexithymia so I don't get overwhelmed by the emotional side of this but I have had several therapy sessions this week so that I can double check myself and will have some review sessions next week too. I'm not walking into this blind but I thank you for your concern Top.

@MothralovesGojira that is such an odd system. My daughter who is an oncology registrar loves seeing her patients through treatment and getting to know them and their funny ways. Where is the job satisfaction in being an anonymous name on a file? My oncologist is the almost the same age as my daughter and has become a friend. Maybe the next time you go will be a better experience. The doctors who train in oncology are usually kind and good at empathy. Here’s hoping!
I’ve been doing Easter baking. DH has already take a chunk out of the Simnel cake so I am hiding the lemon fairy cakes from him 😀

Well that was a bit of a crappy day. Went for my immunotherapy and kidney function is out of whack again so immunotherapy stopped, six weeks of steroids and if not better I’m screwed basically. They have said they will look for clinical trials for me. Can’t quite get my head round it and haven’t cried either. I’m done.

I am just home from a few drinks. Fave colleague is not coming back & I'm gutted 😥 Job hunt is on. That'll be fun 🙄

@Enigma52 @SummerCycling
I've also had diazepam for the MRIs
I'm not given to hysterics but having an MRI... it does help

@Whatevershallidowithmylife
So 6 weeks of steroids to repair kidneys?
Has the immuno attacked them?

And there's no other treatment, no targeted drugs?