Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

Purple I do that all of the time. I go out in my DH's car and then look all around the car park for mine! That is before any possible excuse of chemo brain.

Blimpy Great news and, in the nicest possible way, I hope never to see you having to be here again.

Hello, the lovely @TwitterQueen1 directed me here.

I was diagnosed with breast cancer end of Feb and had surgery mid March. Was expecting to have radiotherapy by now but results have come back that it's triple negative breast cancer so am now due to start chemo at the beginning of May. Haven't had my pre-chemo appt yet, have that coming up this week. To be honest I'm not quite sure what triple neg breast cancer means and why I have to have chemo and I'm too scared to google to be honest. I'm also too scared to read all the chemo bumf from the hospital (I know I sound pathetic) although I will read it all before the appointment.

Anyone experience of using a cold cap?

I think @SnowsInWater is cold-capping. I didn't bother because you spend an extra hour or so in treatment and there's no guarantee it will work. But you have to go with whatever feels right for you.

I can't help with BC I'm afraid - I have ovarian - but there are (sadly) lots of others on here who can help/advise, including a few triple negs.

I'm really crapping myself about the chemo if I'm honest. I've had a haematoma in my breast after the surgery too which felt like such a setback and is still causing a lot of pain. I'm normally a 'get on with it' kind of person but I feel very scared by all this.

That sounds horrible Catching .

I wasn't expecting to have to have Chemo either. The surgeon told me it would be surgery, radiotherapy and "tablet treatment" After the surgery the test showed ER and Her-2 receptive so now 12 weekly sessions with Herceptin and Paclitaxel.

When you think you are going to get one treatment regime and then they tell you it will be different it feels as if they have found out something worse than they expect but I don't think that is necessarily true.

I would be asking them what it means and what the treatment is designed to do. I hope you are able to get answers that will reassure you.

Catching. Don’t read the leaflets if you don’t want to. I just skim read the stuff about side effects so I had a reasonable idea but the nurses will go through everything with you anyway. I’ve said this on here before but early on when I was diagnosed someone from Macmillan said some people like to know everything and others nothing. And it’s ok if you don’t want to know detail. I found knowing nothing/very little helped me not to google.

I didn’t read my diagnosis letter until recently as was I was just too scared at the time. My cancer was HER2 positive with lymph node involvement which was all I knew. I had my chemo before surgery.

I found loads of support on here whilst going through chemo.

Xx

I'm another horror for not reading leaflets. I just know that I'll start to psychosomatically develop every side-effect going if I know what I'm looking for.

MrsT Hamilton was wonderful!!! I think it's useful to know the story beforehand and to have listened to the CD a few times though - we only listened about fifty zillion times .

Hi catching
Sorry that you're in this situation but you've found many good people here.
If it helps, the chances of survival for breast cancer are very good indeed, and that includes 'triple negative' sorts. Triple negative means that the lump doesn't have three particular sorts of chemical in it. Those (HR, ER and HER2) have particular drugs that tackle them. For yours, it's chemo that tackles it. And radiotherapy, usually. Different sorts of breast cancer have different treatments, and the newer combinations of chemo etc are improving things all the time. I had chemo (and rads, surgery etc) back in 2011. Wasn't fun. Was doable. Still here. Mine was HER2+ sort, not triple negative, but I have friends with TNBC (as it's also called) who are still very much alive and well after years and years. Hopefully this will be the case for you too.
None of this helps with the sheer eek of it all, I know. But, from reading the latest oncology papers , I'm quietly confident of TNBC research progress.
Meantime, Do Not Google. Nearly all of what you will read about cancer is nonsense, on there, or stuff relating to treatment types from years ago, not the brand new potions.

If you've got a good breast cancer nurse, ask them anything you need to - and ask away on here too.
PS - cold cap - works for about 6 out of 10 people, with most chemo regimes. Ask your team what the odds are for the one they're putting you on.

Amberlight, do you mind if I message you for advice? I don't want to impose.

As I'm not a medic of any kind, I can guarantee no wisdom at all, but yes, happy to chat.

Hi again. Hope you are all enjoying the long weekend with your nearest and dearest.

Hi catching. I’ll only be slightly ahead of you on chemo but am going to try the cold cap so will let you know what it’s like. Hope you are managing to get your head round the chemo news and view it less fearfully now.

For me it’s 2 more sleeps until first chemo session. Had the side effects chat on Thursday and was given the chance to talk to a current patient on the ward who showed me her port and told me a bit about what to expect, which was v useful. I also had an MRI scan on thurs - I’m pretty brave about procedures of all kinds but 45 mins face down in an MRI was at the limit of tolerance for me. The music didn’t work for the first half either so it was impossible to ignore the loud noise! Unfortunately I get to have another after two rounds of chemo.

And finally I wandered over to Selfridges and on spec got fitted for and bought a wig as an insurance in case the cold cap doesn’t work. I was surprised by how ok it looked. My hairdresser says he will give it a little trim next week to make it look less wiggy and more like my style!

I have this strange sense of wanting to get things organised and straight before chemo starts, almost as if I’m preparing not to be around. So I have been doing lots of laundry, dealing with admin, tidying up, getting new school uniform and shoes for my children, getting the wig and so on. It’s like nesting or something.

Catching of course you're worried about chemo, it's the fear of the unknown. You will have days when you feel rubbish but they'll be plenty of days when you don't. When I had my first lot of chemo I worked right through it and felt pretty ok but my second lot I felt worse so it all depends on what chemo you're having. I found ticking the days off on a calendar helped to see how far I'd come helped

Brassica I was the same with getting things organised and I think it helps to keep busy and take your mind off things. Even now I'm constantly chucking things out much to my DHs annoyance

TQ Hamilton sounded fabulous! And your daughters are the doubles of you

I hope everyone has a lovely Easter 🐣

Me too with getting organised ahead of treatment. My house is cleaner and tidier than it has been for ages At least if I feel rubbish after the chemo I wont have to be feeling guilty that I don't feel like doing housework/

Many different forms of chemo of course, but for those on a fairly standard once-every-three-week pattern, for me day 1 was a bit weird, with enough steroids/antisickeness stuff and chemo curiosities to make things yuk but not arrgh. Then days 3-5 tended to be the worst for stomach, tiredness, nausea, anything else. Then gradual improvement over the next week, and then pretty much back to normal for week 3. Everyone's different of course. Don't accept nausea as inevitable; there are at least eight levels of anti-nausea stuff they can offer now, so if the first gambit doesn't work, they've plenty more to offer. I found ginger was great - as ginger beer, crystallised ginger etc. Took the edge off the remaining nausea. Rest all you can in the naff bits. Give yourself a treat to look forward to each day - a tele program you love, a magazine,whatever. If you can schedule a mini break or trips out for week 3, that helps also.
I had a port, as I was having herceptin too. It was great, though (strangely) only the oncology nurses knew how to use it and had the right kit for it. So every time I had to go to a different department, they were still having to use ordinary needles in the veins. Hoping they might be better at it after these few years have passed.

I second what amber has said. I felt my most normal in week 3 of chemo so I would try to schedule any nice stuff or anything else I needed to get done in that week.

xx

Hi bit of a lurker - first time poster.
I got diagnosed with Breast Cancer in January. Had 4 sessions of chemo and 2 to go. Found the first 3 easy, the last one hard but starting to feel better. It was emotionally and physically hard rather than mentally hard. Just 23 days to go before chemo is finished and I can't wait....

Hi catching I am cold capping. I was very distressed last Wednesday when my hair started coming out in handfuls and a shower seemed to leave half of my hair in the drain but that stopped within 48 hours and I would say I probably have 50% of my hair left. It is fairly thin now (it was never thick) but I don't have any obvious bald patches. I am due my third round of Chemo with cold cap tomorrow (my treatment is every two weeks) and I am basically going to see what happens after that before I decide what to do.

The cold cap adds two hours plus to my treatment time. Personally I find it unpleasant rather than unbearable, I take paracetamol half an hour before I arrive as advised by the nurses and that does seem to help as it gets more uncomfortable towards the end, I took more paracetamol after four hours last time. If I have another big shed I will probably just bite the bullet and shave my head. I bought some nice colourful head wrap things over the weekend and it is Autumn now in Australia so easier than Summer which I appreciate is no comfort to you.

Sorry to see more people here as newly diagnosed, as I have said before I find it hard to follow threads (and anything really, even my tolerance for crap tv seems to be ten minutes) so I am not the best contributor but my thoughts and prayers are with everyone in this group.

Thanks for the kind thoughts purple.

Please don't feel you have to follow the thread Snows - you can simply read (or not read) and chip in when and if you want to, or if you have a particular concern.

Some of us old timers have been around for a while so it's easier for us.

Hello everyone,
I'm back after finding out last week I have a recurrence. Incurable But treatable. I wish I hadn't asked about prognosis because 12months is nothing...I have a young child. Still trying to get my head around it all but feel like I'm being followed by a black cloud, even on the sunniest of days.

So sorry to hear that Storm. What cancer do you have?

Welcome Gib, you're more than halfway there with the chemo now! The 23 days will fly by, I felt the worst halfway through the chemo then the last couple were easier to deal with. Will you be having any radiotherapy? Or is it just the chemo then a scan?

Hello Shestood there's a couple of people on here who are not curable but treatable. The timescales they give you can vary so much so try not to dwell on 12 months and they're coming up with new treatments all the time so there's always a possibility about getting on a trial.
Do you have a partner/husband for support?
I have a son although mines 16 and I think that's the toughest part of all this. If you're feeling low all the time have you spoken to the doctor about antidepressants? Or a short course of sleeping tablets if you're struggling with sleeping?

Sorry to hear about that Storm.
Purple - got to have surgery then radiotherapy but I'm going to Majorca for a week after chemo and REALLY looking forward to it. Flight is booked so unless my oncologist says that I can't go - I will be off :)

Hi... sorry not read TWT, but just looking for some advice please ref my Mum...

I think they are investigating for lung cancer, she's had a couple of CT scans, Bronchoscopy/EBUS and just last week a PET scan

Cancer was mentioned briefly at the original consultation, but we were led to believe they were checking for TB (which I think her GP has said is clear)

We have an appointment next Monday (week today) with the respiratory team, but what happens if it is cancer?

I have no idea what to expect, what happens etc ... just looking for some advice please.... so we kinda know what to expect (if it is C)

Thoughts to everyone in the same boat as us xxxx

TIA xxx

Hello OldSpeclkledHen
This thread is for people who have cancer or who are waiting for the results of cancer investigations.

Tbh, we are reluctant to advise relatives because each case is different - as is each patient. And your mum may not have cancer anyway.

The Macmillan website is your best resource here: www.macmillan.org.uk/
You can find information for carers and relatives on there.