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 do you visit the hospice before staying there? So glad purplelad had a good birthday! When my kids start to drive, I want them having 1000 lessons!

I'm back in hospital again. Bloody neutropenic sepsis. Am going to miss ds's 5th birthday on Sunday too, which I'm gutted about.

Posted too soon.
Wren glad you're feeling okay after the op. Hope recovery is smooth for you. Defo take on that tip about not wasting good wine

Snow Losing the hair wasn't as bad for me as I thought. Cold cap wasn't an option for me, so I just shaved it before chemo started. You get used to it, and there are loads of nice scarves and hats you can buy!

Oh *tahiti that’s pants!

Fingers crossed that your white bold cells resurge vigorously and you can be sprung on Saturday. If not, would DS play along with having an Official Birthday in a week or so?

Glad to hear that purplelad had s good birthday. I have z term learner driver too. We can’t possibly afford to insure him, but I think it’s good to get a licence because then it’s done. It did seem weirdly and very suddenly grown up, but I got used to the idea quite quickly

Sorry for being dim, but when you say being referred to a hospice, what would they be doing for you at this stage?

Tahiti sorry to hear you're banged up again. I'm assuming you're in solitary? You must be sad to miss your DS's birthday but hopefully you can see him and have some birthday cake and have then have another half birthday when you're out.

Have you got stuff to keep you entertained? I find it difficult to focus on books and MN is throwing up such boring posts lately...

Yes I get to visit the hospice and have a look around and I can have treatments like acupuncture while I'm there. I think they also look at my medication to see if they can give me anything else to help
I'm just hoping I can get in as my nurse said it gets really busy and they get booked up quickly. It's a shame they have to rely on donations when they can make such a difference to end of life care

Oh that sucks Tahiti ** any idea how long you'll be in for? I'm sure your DS will have a lovely day and you can celebrate properly when you get out

Noodles how are you doing?

Hi. Sorry I haven’t been around for a while. I have been lurking. Not really sure what to say most of the time.

This campaign made me think of you lovely Lacies

London that's a good story. I can't believe the idiocy of some campaigns. "Two is better than one!" FFS
And yes, all the huggy, smiley, lovey, friends together, braiding hair crap.... do people seriously think people with cancer act and think and behave like this?

Cancer is a hard, lonely, frightening business at the best of times.

Thanks for the link London - absolutely bang on. I’m thinking of everybody ... just plodding along here, back into things at work but really feeling the fatigue as a result... my brain is fried and I could barely remember my own name today ... thank goodness it’s Friday!

Thinking of everybody...

Hello, new to this thread, I have been reading bits of it for the last few weeks wondering if I'd want to post some time, and today - well, yesterday - I got what was essentially confirmation that I have a cancer, in the shape of a text message notifying me of an appointment at the hospital where I was to be referred if it was cancer. Sorry, very clumsy sentence! I think it's ovarian cancer.

I have an appointment on Monday afternoon with the acute gynae consultant at my local hospital where everything has happened so far, when I expect to get an actual diagnosis and info about the initial treatment plan, then I think the next morning (at the cancer centre) will be about surgery. I imagine the surgery might be quite soon, and I'm wondering what I should take into hospital with me - good to be prepared!

I've seen how kind, generous and supportive you are to each other here, and I hope, if I'm joining the group, that I can give, as well as take.

Very good wishes to everyone here, on whatever stage of the journey.

Hi bridget and welcome to the club no one wants to join, TQ is the poster who will be able to help you with specifics of ovarian cancer.

But I think we all know that the waiting for test results and actual treatment plan is one of the very worst bits.

Who’s with you this weekend?

( TQ - you don’t have to run today. I’m doing a 10k for you even though last couple of runs have been dire)

Bloodybridget
So sorry to hear this - but is there any chance it could be cysts or endo? Have you had a CT scan?
I was dx with ovarian cancer just over 2 years ago so please do ask me anything you want to. This is definitely the worst time, when you don't really know what's happening.

iVamp thank goodness! I'm cheering from the sidelines...

bloodyBridget I only contribute occasionally because I didn't have ov ca but something else (Mucinous Borderline) which my local hospital - no gynaeoncologists- diagnosed as cancer on the basis of CT, MRI and blood tests. There's some sort of index and my age and 'suspicious cysts on the omentum' apparently ticked enough boxes and caused them to jump the gun.

They did the right thing by referring me to a big teaching hospital and the first words my lovely surgeon said to me were, 'Well, I think it's benign.' Ime, those lower down the hierarchy are trained to take the worst case scenario route so you're seen by an expert - and you do need one to decide 'not cancer' as much as if it is.

I don't want to get your hopes up, but it sounds as if you could be in a similar position. Unless there's obvious spread, it's difficult to diagnose ov ca from scans. Even a subsequent biopsy was 'inconclusive'. It depends on your personality, but some hope, any hope, was a godsend for me in the ghastly 2 week waiting period between appointments.

Incidentally, the usual procedure seems to be chemo first then surgery for a full debulking - removal of uterus, ovaries and omentum, sometimes appendix. Then more chemo. So, even if it's bad news, you might not need your hospital bag yet.

TQ V pleased to hear about the shrinkage. Ca125 can be so misleading. I know it's useful for some, but such a worry when you're not a typical responder.

Thymeout
The timing of surgery depends on whether 'it' has spread. My friend had surgery first because 'it' was a self-contained mass located in one just one place. It was confirmed as OC and although it didn't burst she was subsequently offered chemo as a preventative measure.

Thank you very much for the responses, TwitterQueen , iVampire and Thymeout.

I have a wonderful DP who will help me through whatever comes, and lots of brilliant family and friends too - we are very lucky.

I have had tv ultrasound, MRI, and CT. Thymeout I've never heard of your condition and it is very good to hear of something else benign that it could be. I know that the gynaecologist has shared scan and test results with the other hospital (I'm in London, it's the Royal London) and because I was notified of an appointment at the London so quickly, I did jump to the worst conclusion. Although of course if it is cancer but very early stage, that would not be the worst.

Interesting to know that if cancer they might do chemo first, I kind of hope not as I would like to get surgery over as soon as possible (we have holidays planned ).

I really appreciate your replies, I will update when I've been to both appointments. Hope everyone can have some good times over the next few days.

Welcome Bloodybridget
So I managed to train at the gym yesterday (just 30 mins before going to see Detective Piccachu at the cinema) and I did 30 mins walking/jogging (more walking than jogging though). This is totally the hardest part of this all for me. The loss of my fitness. I was in training for VLM when I was diagnosed and I could run 8 miles and not be remotely out of breath. Now I'm back to being knackered after running 60 seconds. I will get back there though....

Bloodybridget I was at St Thomas'! Window bed for the best view in London. Still am - just being monitored at my local. Best of luck for tomorrow and Tues.

TQ Yes - it's still a mystery to me whether they can tell whether a tumour is malignant or not from imaging, or just deduce that it must be from spread. In my case, a v large tumour but no obvious spread was a positive sign - to those qualified to interpret scans. Unlike my local. (I was rung up by a CSN who, when I asked about surgery, said no, chemo first.) Chemo before surgery would have carried a greater risk if there was a chance it was benign. Also it was squashing my lung.

TQ - the event went well. Damp, so presumably no/low pollen and I felt back to normal

gib1973 that sounds tough. I was able to keep running throughout diagnosis and first treatment, and still do it now I’m on a long term treatment plan. It’s been such a positive thing that I can easily see why loss of ability to exercise - something that has happened to a number of posters - is such a blow.

How are you going about building up again? Does your council go any useful things like Walk4Life or a Get Out Get Active programme?

Or straightforward C25K?

And warm thoughts to all Lacies, and wondering if you had a good weekend. freddie did the Moonwalk last year - did anyone (or their family/friends) do it last night?

Morning everyone, and welcome to Bridget - I hope the appointments today and tomorrow show no cancer but it sounds as if one way or another there could be some heavy treatment for whatever you have. I hope you haven’t had too worrying a weekend. Good luck.

Sorry to hear about the sepsis and missing your little boy’s birthday, Tahiti. How are you feeling, and do you know when you’ll be well enough to go home?

I have my second chemo (EC) tomorrow. Over the weekend I had quite a significant loss of hair which gave me a big wobble. I have thick hair so touch wood it’s not very noticeable to others yet but there were handfuls coming out and I fear it’s just the start. I guess I’ll still do the cold cap tomorrow. I also have rosacea which is flaring up a bit and so I was casting my mind forward to being a baldy with a big red spotty nose, and I confess it made me cry more than I have done since the diagnosis. I am not blessed with good looks anyway and it is a big deal to me to be able to make myself presentable, so hair loss is a kick in the groin. Sorry that this is basically a whinge about nothing when others are in considerable pain or indignity with cancer, and I have nothing to complain about in comparison.

Vampire - I see my PT 3 times a week. He has been on a Cancer rehab course when I got diagnosed so thankfully he knows what he is doing. I have been walking a fair bit but now run/walking and desperately trying to get my fitness back. It will happen - slowly but I'm determined

Brassica you are allowed to wobble. It is all a lot to take in and hair loss is no small thing amongst all the rest of it. I hope the loss slows down Hearing from others it does seem to come at intervals rather than steadily.

Good luck for today Bridget. Hopefully you'll feel better knowing what the plan is, let us know how you get on

Brassica are you on steroids? My face is always bright red when I'm on them. Complain as much as you need to on here, just because people have it tougher doesn't make it any easier for you and your hair is such a big part of you of course you're going to feel upset at the thought of losing it but even if you do it's honestly not as bad as you think it's going to be.

Thanks so much Brassica and purpleunicorns for the good wishes. Weekend was ok, feeling very twitchy today but not dreadful. Sending lots of good wishes back to you and everyone else here who's going through hard times.

Just popping in, brassica do persevere with the cold cap if you can bear it. I managed to keep at least 60% of mine and avoided wearing a wig, I did follow all the instructions, barely brushed it, washed it only in dire circumstances etc also meant I grew out my hair dye, so looked extremely odd for a while! But for me, it helped me cope with the whole cancer thing.
Hope everyone else is as well as they can be

brassica

In cast you haven’t already come across this, do find out if you have within reach a session with Look Good Feel Better

www.lookgoodfeelbetter.co.uk

Many of us on here have done one - it’s about 3 hours covering skincare and make up, and it’s lovely just as a treat. And then they’re really good for tips about dealing with loss of brows and lashes, misbehaving skin and all the other weirditues that treatment can do to us. They can signpost scarf-tying workshops too.

Because appearance does matter, and whinging about a change you don’t like and didn’t choose is a wholly reasonable reaction.

Oh - and you get a really great goody bag to take away.