Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

helly Hugs back to you. How are you? Sorry you’re struggling with the anastrazole

Vampire welcome, but sorry about your diagnosis. Fingers crossed that it responds well. Are you on inpatient chemo at the moment or is it just a day one? Sorry I don’t know much about leukaemia, and there are so many different types! I’m glad your children took the news better than expected :) good luck telling your mother

It’ll be five years tomorrow since I was first diagnosed (and I joined this thread a few months later, so I really am an old timer ). It has somehow gone both very slowly and very quickly! I’m very grateful to still be here, and for all the friends I’ve made, but sorry for those who are no longer here. Thank you all for support, especially since my recurrence :)

Waving to all

Sorry Twitter meant to say yippee for last chemo :)

5 years.. Wow Leslie that's brilliant. Well done you (and all the medical staff). Raising a glass of ginger ale to you for the next 5

Anyone mind if I just lurk here while worrying about cancer. It’s vojng to be at least a couple of weeks before I have any idea what’s going on... also has been very helpful to read TwitterQueen’s posts this eve. Thanks TwitterQueen.

No-one minds Ahardyfool. Have a rant or a moan or a lurk or ask anything you want. We all have our own stories and each one matters.

Hi Ahardyfool - waiting is a horrid time

And thanks everyone for the welcome.

I’m on oral chemo which I take as an outpatient, going in for frequent blood tests to see if my white blood cell count is moving the right way. It’s a way less hostile regime than the ones described here. If tests on Friday give the right result, I get the targeted drug which can hold it back completely, assuming I respond to it. Leukaemias aren’t staged, because there is no primary tumour, and (if I’ve got the terminology right) the sort I have (Chronic Myeloid) is the earliest phase. So it could be a lot worse.

@graceadlerdesigns I've had coeliac ruled out via a blood test. No polyps reported so not thinking too hard about the biopsies

@FinallyDecidedOnUserName you see really relaxed about it all which is good - logically i know there is no point in worrying until there is something to worry about for sure, but I find it really hard not to .

Thanks vampire and TQ. I’m a long time MNer but have rarely been on talk over the last 8 years or so other than a quick rad of the threads I am sent via email and the odd medical query. Ironically, I found out today that my DD’s father has been diagnosed with Lymphoma following a lump on his thyroid discovered a couple of weeks ago. He knows few details at the moment but this is just exacerbating my anxieties around leaving DD an orphan 😥

@graceadlerdesigns weirdly it's easy but I know if it was DH or one of the DCs I'd be in knots.

Hello all,

Sorry I’ve not been back for a week or so, I had a bit of a wobbly couple of days last Tuesday and Wednesday, I think the enormity of this just hit me. I needed it though, and feel much perkier now I’ve processed everything.

Met with the consultant radiologist on Monday and also really like her. Her SpR called me yesterday with a couple of questions so she can draw up my prescription and confirm that I’ll be having Day 1 next Friday. Day 8 will be tablets and then next cycle will be starting on 24/11, when the radiotherapy will also start. I forgot to ask her so perhaps someone will know - what happens with Christmas? Will I get 25 and possibly 26/12 off, or will I have to go in for radiotherapy?

Flippy thank you for your thoughts and words re talking to my children especially my 8yo. Today is.

Sorry, iPad crapped up and posted before I had actually done anything.

Flippy thank you for your thoughts and words re talking to my children especially my 8yo. Today is the day for telling the children, eeek. I'm ready though, and will be as (age appropriately) honest as I can be about it all. I will 'basic' it down for my youngest, but the others are fully paid up adults and definitely can't be kept from anything.

Have now met all of the MDT people dealing with my care and really like all of them. This makes such a huge difference I think. The only thing that I'm slightly disappointed in is that I have to go to the Sutton Marsden rather than Fulham. Distance wise Fulham is marginally closer to me, but I do understand their reasoning. It's just the fact that I'll have to rely on Southern Rail... as driving to Sutton can be a nightmare and the route is notoriously clogged up at all hours of the day. Ho hum, there are worse things I could bitch about.

Anyway, I'm ready for it to all start and while I know the next 3-4 months will be exhausting and I will potentially feel like utter crap, it's all for a very good reason...

Sorry not to respond/react to all posts, but iPad really has a dickish mind of its own and I keep losing swathes of typing if I dare to scroll!

Hope everyone is as OK as can be, and that you all have a lovely day today.

Good morning everyone

Help yourselves to celebratory cancerversary cake

Biscetti good luck telling your children sorry I’ve not had radiotherapy so no idea about Christmas. Sorry about your wobble, though I’m glad it has helped. It’s a lot to process, especially as it has taken you so long to get a diagnosis.

Twitter thanks :) I’m raising my orange squash to you! We sure know how to party. It’s definitely well done to the medical staff. I just turn up and let them do their thing. And enjoy the free drugs

Ahardyfool just to echo what Twitter says - feel free to lurk or post. We really do mean what it says in the title, this thread isn’t a clique or anything, anyone with cancer or being tested for cancer is very welcome :) (though of course we wish nobody needed to join!) do you want to tell us more about what is going on? There might be someone with a similar experience. Only if you want to though. I’m sorry about your DD’s dad

royal thinking of you lots

Sorry not to reply to everyone. I’m on my phone and I get in such a muddle scrolling back and forth. I hope you all have as good a day as possible.

Hi all. And a warm, gentle welcome to all the newcomers since my last post. I'm currently sat in the clinic waiting room. My radiotherapy appt was at 2:45 but they're running an hour late so I've actually got some alone time (for the first time in AGES) to catch up. Though no pen or paper so I'll forget who's written what! This is session 9 of 33. Slowly getting there!

Vampire how have you fond the oral chemo so far? I'm due to start it in January following the completion of my radiotherapy and 4-6w recovery but haven't actually met anyone who has ever had it so interested to hear others' experiences.

Leslie happy(???) 5 years. You're very important around here

Biscetti good luck with telling your children. I imagine it's really hard. I've been lucky in some ways that my children are too young to understand everything. My eldest is 2.5 and knows I have a poorly head and go for treatment every day. The 11 month old clearly has no clue. Also because I had a quick and dramatic diagnosis following sudden epileptic seizures, my parents and husband were with me when they did the ct & mri so knew as soon as I did, and then broke the news to further family for me. This has saved me a lot of difficult conversations over the last 18 months!

TQ we went to Tromso in N. Norway. 4 nights (I'm on weekly chemo so it needed to be short-ish!) but crammed in a Northern Lights chase, fjord hopping and some low-key mountainous treats! It was cold but sunny, with lovely air and light and very peaceful. It's expensive like Iceland, but I thought it was really worth it and a nice place to go to feel healthy and active, even if you aren't really!! Happy to pm you details of what we did if it helps.

Leslie well done on your 5 years - an inspiration to us all. Here's to good drugs keeping us all about for longer
Biscetti thinking of you today. It's so hard, but hopefully it will be a relief for it to be out in the open. I agree with Littlegreycat that telling a few people who can 'break' the news to your wider circle on your behalf makes things a lot easier. Sending hugs to your kids and fingers crossed you get lots of constructive offers to help you through the next few months. Fingers crossed for Friday vampire and hoping that ahardyfool doesn't have too long to wait. xx

I’ve been fine on the oral chemo so far, LittleGreyCat

The one I’m on is used for CML, some cervical cancers, sickle cell disease and a couple of other things. It does have some serious potential side effects, but I don’t seem to be getting them, though tiredness has increased, skin is getting drier and I get pins and needles.

You need the serious consent as you do for all chemo, and I think I really knew it was a Big Deal when I was issued with the 24/7 telephone number (I think it rings on a haematology/oncology ward) and told to ring if anything concerned me.

I take it twice a day, and have had bloods done 2 or 3 times a week in the fortnight I’ve been taking it. It’s been dispensed at the hospital pharmacy, and takes nearly twice as long as other prescriptions to arrive, because all cytotoxic drugs have to be dispensed by senior staff only via some special additional checking system; don’t know if all hospitals have same procedure though)

Once I change drugs, I can have some of my bloods done at GP and sent over to the hospital but I think I’ll be checked in person there at least once a week until they are happy with response and stability.

Thank you LittleGreyCat I hope your radiotherapy session went well. Are you getting any side effects?

nicky I should point out I haven't had cancer all of the five years. It came back a year and a half ago. Your holiday sounds amazing :) would you maybe be willing to send me the details too? I'd like to see the Northern Lights. I had started planning a trip over New Year, but it isn't going to fit with my mum's work schedule. I might just go by myself

Would anyone like to be friends on Facebook by the way? I'm friends with various people I've met here over the past five years, which is rather nice, especially as most have stopped posting here now. Anyway if you want to I'm happy to PM you a link, but won't be offended if not :)

Cross-posted Vampire I'm glad you've not had any major side effects the procedure is similar at my hospital (I was on oral chemo the first time round)

Hi Nicky I'd be grateful if you could me PM me with the details too pls. After 1st Nov my chemo moves from weekly to 3-weekly so I have more flexibility. Thanks!

I got a phone call from the hospital last night asking me to go in today at 4:30, they didn’t ask me to bring anybody with me like I heard they will if it’s bad news so I’m keeping everything crossed. How did everyone else hear wether or not it was cancer?

purple good luck today do you have someone you could take with you anyway? I can't really remember the details as it was five years ago, but I was called in for an appointment and the specialist nurse told me. She had already told me over the phone that I had a genetic condition and that I shouldn't Google anything, so I knew it wasn't great news and I took my parents and now-ex.

I think we should make nicky our official travel advisor

Hi purple I found at at a regular follow up appt. a week after my biopsy. The consultant and breast nurse were in the room, the two explained things between them.

royal I'm getting rather worried about you. I hope you're just busy and not dealing with difficult news.💐

No I’ve only told my husband about things so far and it’s too short notice for him to miss work, so I’ll be going by myself. I haven’t had chance to read through much of this thread yet, I think that’s what I’ll be doing while waiting as no doubt I won’t get seen by 4:30. I’ve normally got at least half an hour to kill

mrsrhod I'm a bit worried too, but I think it's half term most places this week so hopefully she's just busy :) I hope you will get your results soon royal

I'm thinking of you purple and hoping you get good news. Don't feel you have to catch up with the whole thread, especially as it's nearly full! But of course that'll keep you busy for quite a while I'm thinking of you

Hello all. I am still about and reading everyday.
purple I am hoping you got on ok.