The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Hi , long time lurker as I didn't discover this thread until I'd finished chemo (then a little put of by what happened on thread at start of the year )

Firstly , so sorry to hear about lilymaid my thoughts are with her family and with you guys who 'knew' her

Briefly , endometrial cancer ( stage 4 , had pretty much spread everywhere it could and had to have hysterectomy and part of bowel removed ) 6 lots (3 week intervals ) of paclitaxel and carbon. Had a picc line , cold capped and 5 weeks of radiotherapy. Oh, and I'm STILL on the bloody blood thinning injections and have constant pins and needles that started in toes about 10 days after last chemo and have travelled up my leg , so they are now from about knee down to toes . Not painful just annoying especially in eve or when trying to get to sleep.
Had NED in April and have first 3 month scan next week .
The other reason I didn't join when I found you was nearly all of you seemed to be breast cancer . . . I know , I'm a fool and I've thought maybe that also put others off (for want of a better phrase) and maybe my experience of a different cancer could help someone .

Another long-time lurker, I found this forum two years ago when I was already almost at the end of active treatment. I've signed up to Mumsnet today especially to say how very sad I am to hear the news about LilyMaid. Amidst all the kind voices, Lily's always stood out to me as particularly reassuring. I'll miss her contributions terribly but I won't forget the jist of them, to make the best of every day, even the tricky ones. Lily's family, especially her boys, are in my thoughts.

MySilly, the radiotherapy machine is very quiet and doesn't make much sound at all, and it's not as scary as a CT or MRI scanner where you have to lie inside it, you just lie on a table and an arm moves over your breast but at quite a distance from your body, also the nurses only leave you for about a minute at a time while the machine zaps you and then they come straight in. The whole session takes about 5 minutes at the most! Mine is delivered in 3 little sections which last a minute or so each and the nurse checks my alignment between each section. I'm sure you'll be fine.

I think we should all get to go on scanners like this one!
www.jdch.com/assets/images/page/about-us/photo-gallery/PhotoGallery-69.jpg

Such sad news about Lily. Am thinking of her family xx

Good morning everyone.Leslie, thank you for this new thread and for undertaking the difficult task of telling us about the passing of lilymaid. She was in many ways "family", as each and every one of you here belings to this family, no matter the fact most of us are strangers to each other. May she rest in peace and may her loved ones and family find solace and comfort. Is there a way w ecan send them a card or special message from us here? Just to let them know how much we care and how much she meant to this group.
It is an incredibly sad day thing, but we all know that with cancer it is anything but easy or simple.
Leslie, thank you for asking and sparing a thought for each and every one of us here. You are much valued.
I have my follow up coming up this week and although I do not show it, I am anxious and have been sleeping very badly. We have booked our holiday as I have previosuly said and the DS are so excited but I am dreading what mat happen. I feel totally helpless. On the other hand if the resukts are reassuring, I could really really do with this holiday.
I apologise for not mentioning anybody else. I am feeling quite thoughtful now.
I sincerely wish each and every one you nothing but good news and easy pro efures and hassle free appointments and stress free waits.

Sending you a hand squeeze royal. Everything crossed you will get good news and then you can celebrate on holiday :) I am not sure about a card, because I don't know which members of her family know about her posts here (I had a message from her brother). But hopefully her brother will read all these lovely posts about her.

Hello Patara and Stila, and welcome :) it's lovely to meet you both, but I'm sorry it's due to this sad news.

Stila I'm sorry you didn't feel able to join us previously I hope I've made it clearer that all cancer types are welcome. I suppose due to the site's demographic there's bound to be more people with breast cancer than anything else. But there are a few of us with other sorts. I've got bowel cancer. And we've had people with sarcoma, ovarian cancer, anal cancer, liver cancer, melanoma... Probably others than I can't remember :)

mrsrhod bon voyage! Have a lovely holiday.

chewing have fun at the ball. I'm glad you've got an appointment for your results

pepper I'd find that too much as well. Maybe you can see how the first few appointments go, and if it's not helpful to have him there then you could ask him not to come to the future ones :) good you'll have some help with the children.

I hope everyone has a good day.

Royal, I'm sending you all the best for your appointment, I'm hope everything will be fine. I echo your sentiments about Lily and thanks to Leslie for sharing the news so sensitively.

Welcome to the newbies, I hope you find it as helpful as I do to come on here and share your experiences and ask for help.

I've got the dentist this morning for a root canal. It might sound silly bit this is proving far more nerve wracking than any of my cancer treatments so far

Thanks for the welcome Leslie , you have , and as I said it was me being a fool
Hope your wig shop was successful .

Good luck at the dentist Fresta , and no not silly at all .

Good luck Fresta

Stila wig shopping was a disaster the wigs were really naff and cheap looking, but same price as much better quality ones I've seen online. A friend has recommended another wig consultant so I will try her.

mrsrhod have a fabulous holiday.
royal hope everything goes well. The waiting is so nerve wracking.
stila welcome. It's lovely here - everyone is so supportive
lesley hope you find the perfect wig.
I shall be spending the day relaxing and getting ready for the ball tonight. I've bought a new bra as even though I have surgery in a few days I want to feel as special as possible in my dress. Just got to practice walking in heels
Hope you all have a good day.

Hi all,

I'm so sorry to hear about your friend Lilymaid. Wishing her family some peaceful days ahead to remember her and wishing you all some peaceful time too. xx

Thank you for the welcome Leslie, I have to admit I was a bit dubious about posting as I too thought it was a thread for people living with breast cancer but reading through it became clearer that all comers are welcome so here I am!

I'm rubbish with names so if I don't namecheck you all properly I'm sorry in advance, my head is like a sieve at the moment...

DP is still not being great, he literally doesn't mention it at all, he hasn't asked when results are due back, not interested in what was said at the first appointment, I think he is doing the emotional equivalent of sticking his fingers in his ears and shouting "lalala".
I don't have anyone else to talk to at the moment, my close family are scattered all over the country and are dealing with my grandmother and stepfather who are both poorly at the moment so I don't feel I can speak to them about something that could actually turn out to be nothing if the consultants initial assessment was wrong.
I tend to avoid "drama" at all costs so I think I'm of the mindset that until I get the results and know what is what I am better to keep it to myself. I actually feel a little silly at the moment to be worried, particularly when so many on here and in real life are so much farther down this road than I am.

Ok so I'm going to stop rambling now, it's all a bit self indulgent!

Fresta - hope the dentist goes well, I always find it's worse thinking about it than doing it

Patara and Stila - Hello!

MrsHod - have a wonderful holiday, I am very jealous! We've just bought a house so it will be a weekend camping this year if we're lucky!

Chewing - wishing you all the best for your appointment. Enjoy the ball!

Um, I don't know if I've missed anyone....apologies if I have!!

abitwrong I'm glad you decided to join us :) especially if you haven't got any real life support. I'm sorry you have other relatives who are unwell. I can understand not wanting to share until you know for definite what is going on. I only told my parents until I had the diagnosis.

I hope your DP sorts himself out soon. It's not fair to make you deal with this all by yourself

The tooth is out! The dentist tried but couldn't do the root canal as they were too narrow. It would have meant a referral to a specialist dentist and because it's a back tooth that no-one will see I opted to have it removed. It came out so easily I think it was ready to go really! Just waiting for the numbness to wear off now because I'm starving!

Sorry you feeling alone abitwrong, waiting for results is the worst part, sending a virtual hand to hold. Will your DP be going for the results with you?

Leslie, thank you for letting us know about Lilymaid. She was one of the most experienced posters when I joined this thread almost three years ago. She was one of those people who seemed to be living with cancer, and still living iyswim but I knew things must be bad when her oral chemo stopped working, but I hoped she had longer. RIP Lilymaid.

I am very sorry to hear about the death of Lilymaid. She and I were diagnosed at the same time with secondaries and I always felt that she understood what we were both going through. She always made time to mention me and to try to cheer me up. She was a lovely , caring person and I shall miss her.

I have just had my first picc line (seems wonderful to me so far) which I recommend if you are having weekly chemo. I have just started gemcarbo which I hope works.

I have massive oxygen machines all over my house which means I don't feel like I'm suffocating all the time. Yay!

The Macmillan nurse wants to get the bereavement social worker out to my children which I am resisting. I know I have to go but I don't want them to think I'm going yet. I don't know how much warning you get though, and I'm not asking.

Sleepy - glad about your picc line, I'm sure it will make things easier - I had a portacath for my weekly stuff and was glad I did.
Do the kids need to see the bereavement person? What will they discuss? You're the best judge of what they need. My middle one was three when I was being treated, he doesn't remember much. My oldest was 5. He's still affected by it and still can't watch films or read books where parents die. He's 8 now. I think it's your call how you work it with your children, but it's very hard to think about. Thinking of you.

Lovely to hear from you Sleepy. I'm glad the PICC line is useful. I have a port. Such a relief not playing find-a-vein every chemo session!

I know of some other children whose mum has a similar diagnosis, and they have counselling at the local hospice and find it very helpful. But it really depends on the children. You know yours best and whether it will be beneficial to them. I would hope the bereavement worker would be able to explain things sensitively, without panicking them.

Would you be able to meet the social worker yourself without the children to talk about what (s)he would say/do?

I'm glad the oxygen is helping. The suffocation feeling must be terrifying. That's my biggest fear.

I am so sad to read about lilymaid. Although only bobbing in and out since march her posts were always so positive and thoughtful. Xxx

Sorry to hear about lilymaid.

Leslie I have a wig I'm not going to wear (hair growing back and it's too hot), if you're still struggling to find something and might be interested in a light brown chin length bob then let me know. I got it secondhand from the hospital but it's in good condition and looks very natural.

Sleepy lovely to hear from you I was thinking you hadn't posted for a while and was hoping that you were ok. Glad about the picc line and good luck for the new regime. Agree that you and dh know the children best and will know what they need and when. Such a difficult decision though so sending love to you

Leslie I'm sure you'll find a great wig at the next place

Fresta glad the tooth is out

Welcome to a bit wrong

Love and sunshine to all, it's out here but looks like it might rain too typical !

I'm so saddened to hear the news about lilymaid. I can only echo everyone else and say that she was so supportive despite what she was going through herself. She had such a determination to keep on living her life to the full and I'm sure she enriched so many other people's lives at the same time. My thoughts are with her family and friends right now.

Hello to the new folk, I'm sorry you're having to join us here but we look after each other well.

I'm feeling very fed up this week. It took 7 people 9 attempts to get a cannula in prior to my angio ct scan (had to go into a big vein and they could only use one arm) so that was exhausting and painful. I got the letter from the plastics team follwing my appointment last week and when you see the sentence 'this is a rather difficult situation' it doesnt leave you feeling confident that whatever reconstruction they are able to do is going to be any good.

following the advice of the breast nurse regarding doing things differently this time round, I phoned The Haven in London today to be told they've been inundated with ladies recently and the first appointment they can give me is 3rd August :(. Today also marks 2 years since I first stepped on this train so I'm full of pretty grim memories.

I realise I've not picked up on anyone elses posts. I don't expect a reply to this, just needed to get it down I guess. A few less thoughts cluttering up my mind

Thinking of everyone though and hope you are able to enjoy the weekend

Minty I'm not surprised you are fed up that's a lot to deal with. I hope they come up with a good reconstruction plan soon. I hope you can do something nice this weekend even if it's just sitting in the sun with a book and a glass of wine, do something you enjoy for you x

thanks mum. DD is having a sleepover tomorrow night at a friend's so I think an evening of calm is in order. Have a good weekend yourself