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.

[WhatWouldLeslieKnopeDo]

I have started the new thread a bit early as I wanted everyone to have a chance to read this next post and respond, before the thread filled up.

I am afraid that I have some incredibly sad news. There's no easy way to say this, but Lilymaid has died.

Anyone who has posted in the thread over the past few years will almost certainly have come across Lilymaid. She was diagnosed with breast cancer and bone secondaries a few years back and has been undergoing various treatments since. Even when she was struggling herself, she always had something kind and supportive to say.

So please keep Lilymaid and her family in your thoughts at this awful time.

I know this news will come as a shock. Lots of love to you all

It is a bit strange when someone you only knew online dies. Online friendships are sometimes treated as a bit odd. But for many of us in this shitty boat, online friendships can be a lifeline. It is reassuring to know that we are not alone and that others understand us. Sometimes we share more here, anonymously, than we share with even our nearest and dearest. So it is perfectly natural to mourn. We have lost a very valuable member of our thread.

[mrsrhodgilbert]

Leslie, thank you for passing on that terrible news. I have been thinking about her recently as she hadn't posted for a few weeks, maybe it was more. I nearly met lily at Christmas, she was holidaying near my home town and we had arranged to meet for coffee but the dreadful weather in Yorkshire meant our plans were cancelled. I know she had plans for the coming months and she was so proud of her two boys, both recently out of university and doing well. She was very comforting to talk to on here despite the fact that she was obviously so Ill herself. She will be hugely missed, I'm really so sorry to hear this news.

[WhatWouldLeslieKnopeDo]

I am just reposting the link to this article from the previous thread. Part and parcel of surviving cancer is knowing, and loving, far too many people who won’t be as lucky.

[WhatWouldLeslieKnopeDo]

What a shame that you didn't get a chance to meet mrsrhod.

She seemed to cram in so many holidays and really seemed to be making the most of every moment she had left. Hopefully that's given her family some very precious memories. And yes, she was so proud of her boys :)

[Elmindarina]

How sad, I'm really sorry to read that. Thank you for telling us, Leslie. I only knew her from the previous thread, so I'm sorry for those of you who knew her for longer. X

Thank you also for starting a new thread. I don't post often but feel less alone knowing I can.

[WhatWouldLeslieKnopeDo]

Hello Elmindarina. How are you getting on?

[foofooyeah]

Oh so sad. I remember Lilymaid so well. Prayers and thoughts for her family.

[Elmindarina]

Hi Leslie I'm ok thanks. Got my 2nd Docetaxol tomorrow which I'm dreading but also just want to get another one out of the way.

How are you? Hope your current chemo regime is not too hard going.

[mumto2andnomore]

So sad about Lily she was a lovely person and very supportive and kind on here. Loved hearing about her holidays and her sons. We will miss her very much
Hugs to everyone and thinking of her family and friends x

[WhatWouldLeslieKnopeDo]

Good luck for tomorrow El (sorry, my iPad autocorrect is being a pain about your name!). I remember that feeling of wanting it over, but also not wanting the side effects. I hope it goes as well as it can. Remember to ask for help with any side effects you are having. My chemo is going OK thanks. I'm going wig shopping tomorrow!

Waving to foofoo, but sorry to see you in such sad circumstances x

[chewingawasp]

Very sad to hear this. I am only new here but Lily did seem to be very supportive. Wishing strength for everyone here.

[Fresta]

Oh, how sad. My thoughts are going to Lily's family, especially her boys. I feel quite shocked, and although I realised she had incurable cancer I thought she was doing well as she always seemed so upbeat. It wasn't news I was expecting. She will be missed.

[WhatWouldLeslieKnopeDo]

Yes it's rather sudden isn't it Fresta. I think her cancer had progressed quite a bit. I also wonder if maybe she didn't share how bad things were here, so as not to worry us.

to all

[WhatWouldLeslieKnopeDo]

Just catching up with the previous thread. Sorry I've not been around the past few days. I've been quite worn out and felt the need to hibernate a bit!

abitwrong123 welcome, but sorry you've had to join us. Fingers crossed for your results I'm sorry your partner is not being supportive. Do you have anyone else in real life that you can talk to? Vent here all you need.

minty I hope your scan went well today. And glad you were able to talk to your nurse. I'm not surprised you're exhausted, especially with your worries about your DH too. Fingers crossed for an all clear for him. I don't know, but I imagine that they do most mole biopsies as urgent, a bit like breast referrals. Especially with his history. So hopefully they're just being cautious.

pepper I hope your energy levels are improving

royalmama when is your follow up? It's good you're starting to feel more normal, though I can understand the worry. It's hard to trust your body after it has let you down.

Fresta I hope your skin is not too sore

chewing good you're going to the ball. I hope it is a fun distraction :)

My hair is falling out and I'm getting the acne-like rash that I was promised. Otherwise I'm mostly alright. A bit worn out and my digestive system has gone a bit haywire.

Waving to all I should really try to sleep...

[dinster]

Thank you for telling us Leslie. I'm so sorry to hear this news and am thinking of Lily's family. Her determination to enjoy life really came across in her posts and her positivity and the way she always had something lined up to look forward to, even in the wake of difficult news or side effects, was so encouraging. She will be missed.

[Mysillydog]

Lily was an amazingly supportive poster. I am full of admiration for the way in which she did not allow being so unwell to stop her living her life with her family and how determined she was to maintain her job and normal life. My thoughts are also with all her family.

[WhatWouldLeslieKnopeDo]

Yes I was always amazed at Lily working throughout treatment, even with her four hour commute! She was obviously very good at her job given how reluctant they were to let her leave.

[pepperrabbit]

leslie thank you for letting us know, what sad news and my heart goes out to lilymaid's family. I agree about how amazing she was to keep working, and with such determination , thank you for the article too, leslie. I think we emotionally invest so much in both the online communities and other cancer groups in real life; I totally get the balance she talks about.
I hope you are feeling a little better leslie and chewing have you got any further chasing up your results?
I start rads on Monday and DH is insisting on coming with me to every appointment . I'm not sure he's going to be needed to be honest, but he's arranged 3 weeks of compassionate leave from his work and my parents are coming to stay locally to help with the kids. I suspect I may go a little stir crazy as I do like to have my own space and time completely on my own. Sounds ungrateful I know, especially given today's news, and I won't be verbalising this in real life, just whinging here a little.
to all.

[chewingawasp]

Hi all. Just been to have bloods,ECG etc in preparation for next week's op. Had call to say that the CT scan results are in and consultant wants to see me Monday. I'm not looking forward to it
On the positive side I am all ready for the ball tomorrow and plan on having a little drink or 2

[chewingawasp]

I know what you mean pepper. I have said to dh that he doesn't need to attend all my appointments. He will have a few days for my op though. Hope rads go ok for you.

[mrsrhodgilbert]

Pepper, my DH came to all my rads sessions but he works from home and I got the first appt, pretty much, each day so we were home by 9. He wasn't needed as such but almost everyone in the waiting room had someone with them. Although it's not a painful, invasive procedure lying on that machine does give you time to think about your situation and it's nice to have a friendly face waiting. Depending on your hospital it may also be useful to have someone else to park the car if it's congested.

Chewing, I hope you manage to enjoy the ball and definitely have a drink or two. I'll be thinking of you on Monday and I hope the results don't upset the planned surgery.

Minty, I hope you don't have too long to wait now for news.

Everyone else, I hope you get through treatments and waiting with the minimum of stress and discomfort. I'm off to menorca on Saturday, we go most years. 20 minutes to the airport here, 20 minutes to the villa there, it's very relaxing. I'll raise a glass of menorcan gin to lily, she loved her holidays.

[mumto2andnomore]

Pepper I took someone with me to all of my appointments, dh, parents or a friend. Parking is awful at my hospital so it meant I could jump out while they parked the car and it was nice company. Maybe you could do something nice afterwards each day, go for coffee or a walk or something

Chewing sending love for your results on Monday

Mrs Rhod have a wonderful holiday and definitely raise a glass for Lily

[Fresta]

Pepper, DH came with me to most of my appointments, it was nice to have someone to chat to on the journey as it is a 40 minute trip each way for me, however I have also been fine the times I have been on my own too, I like my space as well and sometimes it's just nice sit and think or read a book while waiting and the procedure itself is over very quickly, it hasn't bothered me. It's actually been the least unsettling part of the treatment for me. Counting down the days has given me an end of the road feeling l! Not long now for you either

[mumto2andnomore]

Agree that the rads are the easiest bit though I saw one of those adverts yesterday, think it's cancer research very fly on the wall type and a young girl was having rads. It did bring it all back to me and made me feel quite upset

[Mysillydog]

Dh came with me to the early appointments when a plan was being determined. He also came to the chemo unit when I had FEC because I was very nervous. However, for the paclitaxel I went alone because it was weekly and a lot of time for him to take out. I am being treated at a central London hospital with no parking so dh used to collect me from the station after my chemo because it's a 20 minute walk up a big hill. He won't come with me to rads either, which is my choice.

I know everyone says rads is easy but I get quite panicky in CT scans because I don't like being in a room on my own with noisy machinery, so I'm a bit nervous.