Cancer support thread #74 - come in, we're here for you.

[Hippiechick162]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread iswww.mumsnet.com/Talk/general_health/3760336-Cancer-support-thread-73-come-in-were-here-for-you

Current members, please do introduce yourselves smile

Hello all, newbie to this thread here.

My left breast's history. ... it got the all clear from microcalcifications end of last year, which were found after I took it for a mammogram having found a lump after much prodding. The prodding was brought on my said left breast feeling Not Quite Right.

And it still felt Not Quite Right in January so I prodded it again and this time was rewarded with some sticky brown discharge from two ducts. Yay. Off to the docs again and three visits and two ultrasounds later I have today had a biopsy on a small 3mm lump next to my nipple. It now feels even more Not Quite Right.

Back for results on the 9th March. They don't know what's going on. Lump apparently looks ok but they cant tell until they get the results. It isnt in the ducts so shouldn't be causing the discharge. They can't see anything that would cause the discharge. They have said it is likely they will want to remove whatever they are unclear on even if the biopsy is clear. Yay again.

I have googled. I know the odds are in my favour even if it is cancerous somewhere in there. I have a hysterectomy booked for end of April and if I need breast surgery I will need to move that as I cant be off work forever. My head is full of planning and dates and what do I tell the children and work projects and trying to not think the worst. I'm 42 and the kids are 18 and 3.

Babyshark

The photo of my "solid large tumour" taken at Cystoscopy was like 2 square quilted linings. It was a CIS. which oddly afterthe Radiotherapy sessions disappeared despite being told that the CIS would not react to the Rads and needed another type of treatment.
My last rigid cystoscopy early this month showed no CIS at all so was a mystery to them.
The first thing you will have done is, I think, a TURBT - Transurethral resection of bladder tumour under GA, which is what I had.
If you are lucky you will be discharged the next day or even same day.
Let me know how you get on. I have been given a temporary "All clear" and to be checked for regrowth in 6 months time.

After 3 months of waiting, I finally got some more solid information re my tumour.

Looks like it's going to be a double whammy of operation and either radiotherapy or PBT as they'll only be able to remove so much due to its close proximity to my brain stem.

Just waiting for my appointment at St. George's now.

Ouch, that sounds tough, Sisyphus. I hope it's soon.

I actually had a great day today. Managed a rare trip out of the house to see Paul Sinha at a comedy club. He was talking about his illness, and afterwards I told him about mine, and got the loveliest sincere hug. He's a proper gent.

That's lovely @BitOfFun

Lovely bit of going out-out news BOF .
Just about organised to fly off island at crack of sparrow’s fart in the morning . I have appointments at 9am and 11.30am to meet surgeon and discuss mastectomy on 17th .
Back home on evening flight so have treated myself to pay lounge at Manchester airport as I think I will be waiting there long enough to warrant the expense !

Hoping to see Hippiechick162 briefly as she will still be an in-Patient .
Talk afterwards .

Thinking of you tomorrow. Hope all goes well.

@BitOfFun so glad to hear you got out and had a good time!
@SisyphusLangClegRocks hope you don't have to wait too long for the appointment.
@Trumpton definitely a good idea to pay for the lounge! Hope tomorrow goes well, and that you see @Hippiechick162!

Good wishes to everyone else, sorry not to check in with everyone. I went out for a walk this afternoon and developed a sore knee that kept giving way, by the time we got home I was dragging myself along and leaning on DP. Quite alarmed by it, and hoping it clears up quickly!

What a sweet photo @BitOfFun. I love the colour of your hair BTW x

Hi everyone, I'm home. Came home yesterday (day 3 after op) still sore and movements not easy but I'm home! Just waiting again now for results and chemo plan. Could not be happier with my new boob that's not trying to kill me lol! and my new tummy. Hope all are doing well xxx

@Hippiechick162
Well I am sat sitting in Wythenshawe outpatients waiting for my first appointment of day and you have escaped off to your home already !
I am so impressed and it has given me a lift towards my mastectomy and new boob on the 17th !

@Hippiechick162 yay! Well done. New boob a plus I guess?

I'm feeling crap. Tummy pain, bloating, nausea and spotting. If I haven't got cancer I shall have to give myself a stern talking to! How did your DHs respond to the waiting? My DH is being far too nice ( to the point of being irritating). He's also blocked off the 6 weeks after my appointment next week assuming I'm out of action. I've reminded him that last time I had first appointment in June and didn't start chemo until august but he's cancelled a walking holiday, a trip to his very elderly mum etc and I think that a bit preemptive.

@Trumpton I wish you luck! That the appointments are quick and you're not stuck there for ages and that your op goes well and healing is good.
@Sooverthemill oh my DH was florence bloody nightingale! He drove me insane. Far too nice, I wanted the messing around bitching etc but he was just sooo nice! He's got over that now thank goodness. When is your appointment? Xx

Saturday marked six months since I finished my treatment. I have been doing some thinking, and have also looked back through these threads a little bit. I see posters in the same cold panic which i was in when I first posted, others going through all kinds of difficulties through their treatment and some who are where I am now - through it, but not yet out of it.
I was talking to DP about my feelings, and described it as like living with a box (bear with me).
All the fears I have experienced can be packed into the box, but it isn't big enough. I can force the lid onto the box, but to keep it closed I have to sit on it. Sometimes I can feel the contents of the box trying to get out, and at other times they are calm.
If I try to stand up, the lid flies off and the contents of the box land on top of me. I then have to sort them out, repack them carefully (with the big ones at the bottom) the replace the lid and sit on it again.
If I get positive news for long enough, I might get a lock for the box and eventually I may be able to stand up and walk away from it. But it will always be there, in the room with me and if I leave the room I will have to take it with me.
My hope is that eventually I will be able to put the box in a corner with stuff on top of it and from one day to the next I'll forget it's there.
Does that make sense?

Today is mum's Birthday. Her last I was seriously ill in hospital but had a bouquet of flowers delivered to her. Little did we know that she had stage 4 ovarian cancer that would be diagnosed by the end of the month. We had no idea she was even poorly. They gave her two months but she survived four. It still seems surreal today I'll be taking flowers to her grave.

Perfect description redspook and sums up where I'm at. I'm sitting on a bumpy box at the moment!

@Hippiechick162 not until next Monday. Am expecting a scan and biopsy that day. I'm going to ask them to do as much as they can that appointment to save me coming back ( because I have a server Ely I'll DD I care for 24/7 and alternative care is very difficult. God knows what we will do if I do need treatment,)

@redspook in December I had my discharge from follow up for Hodgkin's lymphoma and that was obviously great. But in the run up all my old fears re-emerged that I thought I had got rid of. The old 'what ifs', the worry when a random symptom appeared . I'm not sure you ever successfully put away the box but I hope you can. 6 months is still very fresh.

Okay so that should read ' I have a severely ill DD I care for....'. My iPad conspires against me

Well, just got back from my pre-op assessment. Got to go back tomorrow to get bloods done as I'm T2 and my last sugars were a bit high, but I'm on different meds now.

DH then threw a spanner in the works by suggesting I have it on the private to speed it up, rather than the cash benefit that I was going to claim. I don't know. It would be nice to get it all done quickly but I don't know how it works. Can I go back to nhs, or do I have to stick with private, and is it better? Or is it a case of a nicer room? Aargh!

Glad my ramblings made sense to you, @WTF99 and @Sooverthemill.
Yes, six months still does feel very raw, and as if it all happened yesterday.
Even if I get a lock for the box, I won't be the only person with a key.
The contents are shuffling about at the moment, and will be forcing their way out from under the lid as I get closer to my next MRI next Friday.

Well I'm having my first appointment with the oncologist Wednesday to discuss chemo. Anyone know what to expect? How long it's going to take etc? I've ordered two wigs online yesterday so I'm prepared. Do I get a free one as well? Nervous now. I'm trying to tell myself I'll know everything in 48 hours time

Babyshark It is a little bit more than just a nice room. Depending on where you live and how good the services are there you may find that waiting times for appointments, results etc are quicker. I have been treated privately paid for by my health insurasnce. I went to my first appointment on a Tuesday, to the direct access breast clinic, had all scans, biopsy etc and surgery the following Monday. Results of tests on tumour seven days after that and chemo started four weeks after that.

Having said that, the treatment is no different than it would have been if I had gone to a nhs centre.

At the end of my health insurance contract year I wasn't sure that I would be able to continue to afford the insurance if they banged the premiums sky high. I spoke to the oncologist about this and he said not to worry that if that happened he would speak to my GP and make sure I was transferred to his NHS practice. So you can switch back if you need to. It didnt happen in the end. The premium went up but by a reasonable amount.

Where I think the private health treatment has been helpful was during chemo where I had a private room, a nurse with me virtually the whole time and with time to answer all questions and I could pick my appointment times. Not the most important things.

@Nonotmenori you do get a free wig if you are having chemo. Mine was very nice and I had a kind person help me choose. But I never wore it! I went bare headed at home and shoved a hat on outdoors and once it started growing back I left it. The oncologist will talk you though options if there is more than one and explain everything that might happen and you will get a pack of info and probably meet your specialist nurse who will go through stuff like when you need to contact them ( eg you run a temperature). They will also explain the meds that go alongside chemo eg anti nausea, steroids. I would take someone with you who can help you as questions and remember what is said.

Sorry for your loss @Walnutwhipster that must be very hard

@Nonotmenori While I tried the cold cap it did nothing for me and I did lose all my hair within a very few weeks of starting chemo (although, weirdly, I kept both eyebrows until last week when one fell out and not the other, not the best look!). My hairdresser made me a lovely wig but I just haven’t really worn it. Instead I’ve been wearing cotton or bamboo beanies I got from Etsy and Amazon, which I found cooler and more comfortable. I’m due to finish chemo this Friday so hopefully more hair will reappear soon...

@Thatsalargeagegap welcome. You’ve had a lot of back and forth there. How are you feeling?

@Robstersgirl thinking of you. I hope you’re being cared for while you recover from your loss.