Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

Hey MarthasGinYard of course it is ok. We've all been exactly where you are and know the absolute fear. We are all here if you want to talk more about it. When are your results due back?

Shally you too. It's such an awful time waiting for a diagnosis.

I am firmly ensconced in the oncology ward now and started my chemo yesterday evening after a slightly delayed admission. Man this is going to be a loooooonnnng stretch - I begin my 4 day infusion today. It has dawned on me that 4 days is a really long time. You could have a nice 4 day camping trip. Or a mini break to Lisbon. Or that nice girls weekend I had planned to Seville last June which got cancelled due to Covid ....

Fantasy trip planning it is.

Luckily this ward is pretty quiet and civilised. Just hoping I don't start feeling tooooo dreadful. Planning to be very very proactive with asking for anti nausea this time.

Thanks both

Scan was yesterday but private so hoping sooner than the 5 days she said

I'm going to try and speak to consultant as pain worse than when I saw him last week when he thought it didn't sound serious

My Gp has given me sleeping tablets so I've had a bit of sleep

Thank you

Welcome @MarthasGinYard and @Shallysally, happy to hand hold while you wait for results. Please do not Google. ❤️

@Babamamananarama hope the time passes quickly and you can dream your time away.

@Acinonyx2 final chemo. High five!

@Bloodybridget hope you get your call. A break sounds heavenly.

@backformore and @AlbertCampion DS aged 11 being at home is such a relief but I know he needs to go back to school as I feel (he doesn't) he's missing out. He will miss his SATS as last chemo is 7th May then it's 21 to 28 days for the immune system to build up so it will be the end of May when he goes back.

I have booked the Rocky Horror Show for November for me and DD1 so have something to aim for. Have been so many times and love dressing up. 🤣

Still feel like I've been hit by a bus after my Covid jab.

Big wave 👋

HCx

@MrsPnut sorry to hear your vaginal woes continue. I'm a 34 FF so wouldn't mind some reduction!

@FizzyOrange oh don't get me started on childbirth ! I do fancy a little J-cloth surgery hat. Must ask about that.

@BadEyeBri Hard to gauge the temperature for chemo so a light top with an optional layer or blanket is good. Wear something so they can access the bit to put in the chem (I have a port - so bought a shirt with some front fastening). It can easily take 10 mins to get parked at mine so I always end up too early unless dh can just drop and collect. Savoury biscuits, boiled sweets, and a bottle of water flavoured with cordial (so you don't have to keep getting/asking water -it's a faff once you're hooked up).

@backformore fab trip! Dh is American and we both have family there so we may plan a trip going the other way to you in 2021 - if I can stop spending all out money on retail therapy!

@Babamamananarama glad they got that PICC sorted. The problem with the steroid buzz is that when you come off short doses you crash - it can bring on a proper depressive episode not just a return to normal. Should be short-lived but when I was on the higher doses for other drugs I really felt ready to lie under a bus when I came off them Now I plan cleaning for steroid days

@Bloodybridget annoying when appts don't run to plan but good news about Norfolk - I love it out there. Very peaceful.

@Shallysally and @MarthasGinYard waiting for test results is always a very anxious time. Let us know how it goes and we'll hope your stay here is short. Where is the pain Martha?

@AlbertCampion how many more Albert? Dr reduced my last drugs to 80% this time as I was getting so sick and he said it would be fine - there is data for that - so I said YES PLEASE! So today is the usual start of the downhill week and I don't think it's going to be as bad .

I've totally lost the plot with DD's year 11 schoolwork (and she is well bored with it) and there are sure to be replacement GCSE assessments coming although we don't know what they're covering or when So I'm trying to pick up the ball and plan some catch up - I've divvied up her subjects and asked dh to cover some while I recover a bit more then I'll step back up (hopefully!). Year 11 is just a total shit show.

Hoping I might manage a few minutes on the guitar - it's quite tiring sitting up with it but at least I can gaze at it and watch endless youtube tutorials.

@HumphreysCorner I am delerious with relief to be done with chemo. Nurse on Monday was saying: it seems to go pretty quickly. And I though - are you nuts? These 5 months feel like at least a year!

Love the Rocky Horror Picture Show!

Hi Aciniony

It's above belly button and right ribs with occasional left pain and odd shooting pains In back.

Don't think scan results will be done until Friday. I phoned secretary who called the hospital.

@MarthasGinYard you mean Friday next week? Oh that's a long wait for you. Let's hope it reflects that they don't think it's that urgent. Everyone was expecting the worst from my CT (I already had cancer diagnosed by then) and I had it Fri results Mon - it was clear though. And the close call I think made me much more sanguine about my actual diagnosis. I remember I felt like I was going to pass out going for the results though.

The important thing is to get this all checked out and figure out what's up and get a treatment plan, if you need one, for whatever it is. Anything that gets you closer to that is a good thing.

Hi they mean tomorrow if think.

I'm really thinking the worst as I'm sure we all do

That's really good news to hear your latest scan was clear

@MarthasGinYard Oh tomorrow would be good! A CT is pretty good at picking up stuff - but the stuff it picks up can be all sorts of things, not just cancer. They found some bony islands on mine - but who cares! Everything crossed for tomorrow!

Thank you so much

Acinonyx2 that is b helpful info re the steroids. That's exactly what happened to me last weekend - I went rapidly from chipper to completely morose and everything is awful. It's useful to be able to correlate mood to drugs.

Hi everyone I’ve been lurking since I first posted. You’ve all become people sat round a table chatting in my head! I need to remember everyone’s user names!
I had a biopsy on Tuesday after the first fluid test was inconclusive. The biopsy was ok I hate needles and I survived by holding the nurses hand...tight! I’ll be honest I am petrified this has been 6 weeks of letters, and the unknown but I felt strangely relieved after the biopsy. The doctor said my lump/area would need removing but said he didn’t think it was cancer but couldn’t be sure. I also have a lump in the other breast I need checking again. The Macmillan nurse was lovely as well.
It’s hard I want to be positive but I’m also expecting the worst.
I read in admiration all your humour, I’m fully expecting to pass out when they need to take blood!
Like someone said how I had a baby is beyond me now

@Acinonyx2 You are so right about the steroid days (and the crash, which is where I am right now - ugh). I convinced my doc to reduce this treatment by 10% as response has been good so far, so I'm hoping to avoid some of the more annoying side effects this time. We shall see. Last time they dragged well into my "good" third week, which felt like a rip off!

@Shallysally @MarthasGinYard I'm so sorry you've found yourself here, but you are among friends and people who know exactly what it feels like to be at the waiting stage - by common consensus, definitely the worst part. Hang in there!

@Babamamananarama Four days sounds epic - you poor thing. I hope you're in a nice ward and have some good distractions (or can at least sleep your way through lots of it). I get terrible restless legs, so the thought of sitting for more than a couple of hours is torture for me. I get some very odd looks from the chemo nurses when I end up standing and pacing around my chair instead of sitting nicely like everyone else!

@Babamamanarama Try to get anti-nausea & anti-sickness meds beforehand if you think you'll need them, as it's more effective to prevent symptoms taking hold rather than treating.

I'll be 50 next year so with that & hopefully being finished with BC treatment we're planning on doing a big hol, possibly Canada to visit my godmother in the Rockies or more likely Disney land, for Star Wars. I love the planning stage!

Currently in chemo ward undergoing 2hr obvs after Herceptin. Delayed start due to pharmacy printer not working so no prescriptions printed. My first chemo was on a day when the whole NHS IT network went down!

@MarthasGinYard I got my scan results the very next day. Hang in there

@Acinonyx2 Yay for being done with chemo! On the subject of hats & childbirth (!): I needed a D&C after DS1's birth - when I went into hospital to have it under a GA I got dressed before theatre in the gown & hat only to be told by the porter that the "hat" I'd put on was actually a pair of disposable knickers

HauntedDishcoth They least they fitted your head, I was offered a pair after being admitted to A & E and staying 4 days and I could barely get them up one leg !

I haven't posted on this thread but I pop in now and then. I had lumpectomy, chemo, radiation and herceptin. All finished about ten months ago though I haven't been discharged from oncology yet.

I saw @Bloodybridget's post about the Patience Inn. It brought back memories of all nighters after chemo and dexamethasone.
Bridget The breathlessness and palpitations sound unpleasant, I do hope you get that callback soon.

I saw a few people having nerve pain after lumpectomy and SNB. They don't warn you about that do they. I had the burning and pain. Once it all subsided I have permanent numbness under my arm though no loss of movement or function.
Steroids. I had weekly chemo and in some ways it was milder but in other ways harder as frenzy of steroid induced energy and vim.

I’ll catch up properly later. Just wanted to say thank you to all you lovelies for your kind words.

Had a call from GP’s secretary. She was lovely but her tone of “my goodness this is urgent” didn’t help. Hopefully should have gynae appt by Monday.

@Skap nice to hear from you. It's always good to get messages from the other side of treatment!

Warm welcome and much sympathy to @Shallysally and @MarthasGinYard, and hello again to @Delamero.

@Babamamananarama hope your hospital stay is tolerable and that they take good care of you. Agree with you that a four day holiday can feel quite long (in a good way!) But I hope the time passes quickly, and that you can sleep. Have you sussed out your fellow patients?

Waving and sending good wishes to everyone else. I called the nurse again this morning and eventually got the call from a registrar that should have happened yesterday. She arranged for me to go there on Saturday morning for bloods, and a transfusion if necessary.

Just had a call from the hospital and my bloods mean I miss tomorrow's chemo. Also means I start the Red Devil EC Easter weekend. Wanted to be well.

@HumphreysCorner that's a bummer. is it the WBC? And sorry about your Easter weekend.

@HumphreysCorner hugs to you. Its the being in the mindset that a treatment is going to happen on a particular day, then when it doesn't it leaves you floundering. It is the loss of control and unpredictability of bloody cancer and its treatment that I am trying to get my head around. So much of our mental and emotional energy goes into preparing for treatments, scans, results, telephone calls etc that any slight deviation just leaves us in turmoil.

@MarthasGinYard - mets pain usually is worse a night and/or increases over time. Alternatively, if some of your pain is new it could be due to stress or how you are holding your body. I complained to my dentist 18 months before my diagnosis that I was grinding/clenching my teeth at night. No more clenching since!

Best wishes for your results!

Pain is certainly increasing daily.

I'm pretty sure the news won't be good.

So frightened