Cancer support thread 91 - don’t borrow tomorrow’s worries

[LemonDrizzle10]

New thread

Not sure why the NHS seems to think no-one works & everyone is waiting around for them to say "yes, I'll take whatever appointment most disrupts my day & be happy with it". Massive sweeping statement there, sorry, it's really starting to grate on my nerves.

Yes @lucysmam and with all the stuff in the news about withholding medical treatments, or whatever it was for people on benefits who don't get jobs, you think they would try to help those of us. who've got jobs to stay in work in the first place so we don't just give up, but no.

@Slitheringheights sorry to hear about your covid hope you're on the mend soon.

@Ikeameatballlunch hope you feel better soon. Think I'll be having radio in January, really hoping I'll be able to work through it, but not sure. I've taken three weeks off after a lumpectomy, but realising two might have done. I had to decide in advance to get my work covered and also to claim some benefit just for two weeks, Like you I'll be anti oestrogens by then, haven't started them yet and having hot flushes already.

As ever, apologies for not fully reading everybody's posts. TBH I'm struggling a bit mentally at the moment, although I know I'm in a fortunate position and my surgery is over. I've got an appointment to check my wounds tomorrow and a post op follow up check up next week. Just bought myself a new outfit from New Look for Christmas, a short black skirt and a loose long sleeved silver top, which I hope looks alright with a crop top under it.

No, far easier to schedule appointments that aren't suitable & require us to be covered by someone else! Could make a full time job out of attending appointments at this rate 🙄 & it's always met with bafflement when I request they note that it needs to fit around my working day as well as theirs 🤔 . That said, the cardio reg did look surprised when I answered his "do you work" question with yes. Maybe they genuinely see more cases who don't but it seems odd not to accommodate those of us who do.

But what do I know 🤷‍♀️

I'd say I was way more stressed out about the day-to-day how am I going to manage work thing than any of the long term consequences of cancer. I am self-employed and because they were so unrealistic about timescales I just kept not scheduling work because I was under the impression that simmering was about to happen, whereas if they'd been honest in the first place about how long the waiting times were, I could've fitted in a couple of extra months of work it's a lot of money to lose.

Hello everyone. I hope it's okay for me to pop back on- apologies for not keeping up with the chat very well, I've been checking in but bit all over the place.
I felt like DH and I were feeling a bit calmer, we've done some research (proper websites, not googling) I felt more positive. But am struggling this evening due to various things. Just feel exhausted, mentally and emotionally. The multi-disciplinary meeting is tomorrow, doctor was hopeful we would get an appointment Thursday to confirm diagnosis. But I missed a call this afternoon to book an MRI scan, which has now thrown me into panic and also upset me that I may end up with a diagnosis that is incomplete.
I just want to know now, so we can stop this half-life where we're just waiting. My DC are picking up on it, they're all very clingy and emotional and that is making me feel worse. I'm getting a lot of intrusive thoughts that are based on me "jinxing" things if I make certain choices, or that things that are happening are a "sign" that my diagnosis will be terminal.
I know it's normal to feel like this. I got a lump in my throat earlier- my hen do is booked for this weekend, our wedding is a week away. I probably do have cancer. And I just felt really sad that in another life somewhere I am fine and healthy and looking forward to my wedding. I still hope I'll wake up tomorrow and find it was all a bad dream.

Oh @youdontneedtopoo I want to send you a big hug! What a terrible time for all this to happen when you should be enjoying the run up to your big day. Try to remember there is a very good outcome for almost all breast cancer patients and that your team will make sure you get all the treatment you need.
Keep batting away the intrusive thoughts.
Top x

@SierraSapphire
So frustrating isn't it
I'm sorry your struggling
I'm in the same position
Turned down a much needed promotion in October thinking I'd be post operation and unable to start
I've still not got a date, and next appointment not till new year
I wish they'd be much more upfront about the situation and timescales
I had no idea 2 week cancer wait was 2 weeks for each tiny step
And apparently once your referred to university hospital you have to start again, from very beginning

Hello everyone,

Hope it’s ok for me to join on here. I was referred to breast clinic this time last year with breast pain mainly in the left. When I had my appointment at the clinic she thought she felt cysts and nodularity in both breasts but everything was clear on ultrasound (no mammogram as not old enough).

Throughout the year the pain/ache was still on and off.

Past couple of weeks the pain came back in the left breast in similar place (bottom side of the breast) very sore when pressed in certain areas. Feeling the breast it just felt generally lumpy and thick so I made another appointment at the GP. This time (different GP) she didn’t even do a full examination only a quick squeeze (not even in the area of concern, and only the one breast) and just said straight away “oh yes it does feel lumpy I’ll send you to the clinic again. Best to get these things checked as even without a lump people your age can have inflammatory breast cancer or something else”.

I am already an anxious person so as you can imagine this has me spiralling. I certainly shouldn’t have googled inflammatory breast cancer.

Anyway the GP appt was yesterday and the hospital just called and my appt isn’t until 6th December so another two weeks away. I have felt sick and tearful all day today and don’t know how I’m going to get through the next two weeks. My husband is the polar opposite of me and so laid back that he won’t even entertain anything being wrong until the appointment so he is useless to talk to about this. Last time I only waited 8 days for a clinic appointment which I appreciate was lucky, but I drove myself mad in this time let alone 15 days.

It just feels different this time. Something doesn’t feel right. I also work for the NHS and send referrals to the 2ww clinics on behalf of other professionals and I haven’t known anyone to wait 15 days in our trust like I am going to have to. It also doesn’t help mentally that every day at work I will see letters regarding cancer so it is always fresh in my mind.

I am so sorry to moan when there are people on here with very real diagnoses. I am just petrified and struggling to function and needed somewhere to sound off.

Bollocks

The oncologist has just rung me. He wants me to come see him first thing in the morning.

@MrsMoggy
Oh I'm sorry to see you here but you are "welcome"

The waiting is the worst part and in my experience the longer you wait the better the outcome. You can't second-guess the outcome of this so do your best to just distract yourself

@Tilllly
I have nothing useful to give you
Please accept these flowers 💐 💐 💐
Xx

Well I'm just finished packing my bag for the lumpectomy tomorrow morning. First small biopsy was inconclusive. Large volume biopsy "couldn't rule out malignancy". So it's the full whack tomorrow. I'm terrified of general anaesthesia and I have a documented case of iatrophobia (fear of doctors and hospitals) which is mental as my dh is a doctor.

We had to cut our holiday short at both ends to get in my preop and magseed insertion before we went and then getting back today instead of Saturday for the op. On the way home today we blew a tyre and had to wait for the AA so I'm even more on edge now. Luckily I take bedtime painkillers that should help me sleep. I'm allowed to drink water until 6am so will be up early. But it does mean dh is off and can take me, wait with me and hopefully pick me up, as I plan on coming home tomorrow evening (they're expecting me to stay!!).

I know I'm still really low risk but when they got so much out at the LVB I was hopeful I wouldn't need an operation. But here we are!!

@Tilly sending you virtual hugs and flowers.

@MrsMoggy the waiting is so hard. In September I was in a similar position to you and had to wait the full two weeks. At the time I started a thread and a lot of other women joined with similar stories (for want of a better word) and wait times. The majority of them were ok, the lumps were harmless, cysts or similar. Mine unfortunately turned out to be cancer, but it has been an early catch and I'm having a lumpectomy. Not what you want to here as well, but I'm telling you cause I'm still standing taking it day by day. Like others I was beyond terrified and was particularly scared of the surgery, but I am ok and taking things day by day. I'm not going to lie. Please feel free to PM me if you want to talk.

Disclaimer, I hope I haven't offended anyone on this thread as I know there are lots of people in worse and certainly more difficult/complex situations, certainly not trying to say I'm alright jack.

I'm not offended @Octopus45 please don't worry

We're all at different stages of a similar journey, speak freely 😊

@weegiemum wishing you all the very best for tomorrow. I understand your fear of GA's, I felt the same, all the staff were very kind and reassuring and I was fine. Sending you a virtual hug.

@MrsMoggy I am going through the wait as well. As someone else I know quoted, who is now a year clear from breast cancer, it is "a living nightmare". If you want to chat via PM I'd be more than happy to- I'm not very good at keeping up with threads.

@Tilllly I am sending all the good wishes I can for you for tomorrow 💐

Hi everyone ...
I've just had my second cancer diagnosis. Unrelated to the first. I can't really process it properly - I felt like I've already had my share of cancer, so I didn't expect to have a second one. I should probably be in pieces, but I'm not, I just feel very odd.

Diagnosis 1 was breast, stage 3, lots of lymph node spread, treated with lumpectomy, node clearance, chemo, radio, Zoladex, Exemestane, Zoledronic Acid. Active treatment ended January 2021.

Then I started to get really bad headaches this summer. Abnormal scan results - first they thought my BC had metastasised to the skull bone. But after weeks and weeks of back and forth, it now seems to be.... bone cancer. An ultra rare chondrosarcoma of the skull base.

It's treatable(ish). I'm scheduled in for surgery in two weeks' time. Endoscopic surgery through the nose, takes all day. Might not be a complete resection, but they'll try. Then next year maybe proton beam radiotherapy, depending on how surgery went.

I feel like I'm calmly wrapping up work, and buying Christmas presents and doing all sorts of practical stuff, and inside I'm screaming. I am so shit scared. This is a big surgery. And a second cancer, what does that mean for my actual long term prognosis? On the other hand I'm grateful it's not metastatic breast cancer, but a second primary that can be treated with curative intent.

My head is a mess, and I just needed to admit that somewhere.

@Tilllly thank you for taking the time to reply when you have so much on your own plate. Will be thinking of you.

@Octopus45 so sorry that you didn’t get the good news that others did on your last thread. I keep thinking back to when I was at the clinic last year and waiting for my turn for the scan and they called a lady’s husband in and you could hear her crying from a side room. She was younger than me, probably only late twenties. Just scares me that that could be me this time, selfish as that sounds.

When I was there last year and got the all clear I thought great it’s over, yet here I am again 12 months later. If I’m lucky and get the all clear again, if I’ve just got lumpy breasts and breast pain, how will I ever know when and when not to get checked out and what if I miss something.

i also have a fear of needles and injections and veins completely freak me out to the point of almost swooning so even further tests on the day I am going to struggle with. I went alone last time but will be taking my husband this time just in case. Just want to sleep away the next two weeks waiting.

@youdontneedtopoo I read your earlier posts on this thread and you sound similar to me, I am also 34 and the problem is with the bottom of my left breast ( well that’s where I think the problem is anyway, that is where the pain is, last year they seemed to find thickening etc in both breasts though which came as a surprise to me so who knows!)

i have a couple of weeks to wait until my breast clinic appointment. Can see you have had yours and are waiting for further information and plans, I hope you hear some good news or at least a firm treatment plan. I’m so sorry this has all come when you should be celebrating your wedding

Oh for fucks sake @KentishMama

Bastard cancer

I'm also on my second
BC in 2021 now stage 3c lung. So I feel for you

Obviously you're hit hard now but you have a treatment plan, it'll be tough but so are you

@weegiemum I hope tomorrow goes well for you!

@Tilllly you too, I too would have a bollocks moment! Did they give you no indication what they wanted?

@MrsMoggy step away from Dr Google - it will do you no good 💐 The waiting is definitely the worst part, it's ok once you have a vague idea what's what.

@KentishMama that sounds hugely scary, sorry you're going through this.

I rang to cancel the MRI today, with the intention of ringing cardio at my local hospital where I was seen, and was told it's up to the Dr to agree to moving it there. So I will ring cardio tomorrow, tell them they need to cancel and re-request at my local hospital at hours that suit. & if they get arsey I'll just not go & wait for huffy phone calls/letters 🤷‍♀️ I'm still baffled as to how they offer not a single appointment that isn't super stupidly early, or end of the day. Do the machines demand an extra long lunch break?? Do they assume that those hours suit everyone? Do people not exist in the middle of the day?

I'm starting to get very annoyed that I (a fully grown grown up, with full capacity) am being told I need the permission of the doctor to decide what suits me/my needs/my willingness to travel for hours for a 1 hour appointment. I don't need anyone's permission to change things to suit me, thank you very much. Maybehaps your system doesn't work for everyone who does work & have things to be doing 🤔

I didn't even factor in the fact that food needs to feature in the day somewhere, when I worked out rough timings yesterday. Literally travel, hang about for them to be late, and come home, plus the expense of it

Fave colleague keeps asking me if I'm calm 🤣 No I'm bloody not. Everything and everyone is doing. my. box. in! Everyone makes sympathetic "mhm" noises, but really, they don't get how frustrating it all is. Especially with no bloody symptoms of anything at all barring the lumpy bits!

@lucysmam
That drives me mad - the assumption that you just sit waiting for appointments and if doctor says, you immediately comply

No
It's either the MRI has found something in the brain, or the field is too large for radio

Exactly! I have other things to do alongside being a patient of any kind including impatient, not just wait around for them.

Work wouldn't mind - they'd cover me - but then it sets me back with my little charge there too...we're getting somewhere this week & he joined in with half the nativity songs before we went for a break, today. A day off will mean start all over again with stand offs over coat hanging up & being outdoors.

Aarrghh! Bloody frustrating.

I hope the outcome is a suitable plan for you @Tilllly 🤞

Im not going to go into too much detail but I got a text today from a very upset nurse at the other side of the country who shares my name. You can guess the rest. I dont know what today clearly my referal form to occy health had been filled in wrong.

Oh @EachandEveryone - a data protection nightmare!

@lucysmam The "permission" thing gets me too. I recently moved one of my breast cancer routine treatments back by two weeks (because I had meetings with the neurosurgeons that clashed!!!), and the nurse told me she wasn't sure I'd be "allowed" to delay my treatment. "Allowed"! WTF. Last time I checked this is my body, my health (and lack thereof), and my life. And I'm really too busy to wait for permission and paperwork.