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Original poster

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

995 replies

WhatWouldLeslieKnopeDo · 06/07/2016 22:21

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.

OP posts:
mrsrhodgilbert · 07/09/2016 08:09

Chewing, I've just caught up on the thread this morning and I'm sorry to hear about your latest news. You haven't been typical since day one and I'm amazed at your resilience, I think I'd have lost the plot by now if I'd had your waiting and uncertainty. I hope everything that they throw at you now does an excellent job and I hope you have a good BC nurse to talk to.

Royal, hopefully you're feeling a bit better today. It's crazy that we're all dealing with cancer but a common cold can still feel so awful.

Outlaws, fingers crossed for your results later. The waiting room outside my surgeons office is the most depressing place ever and grotty, I have had my worst moments there. The oncologists have a lovely new building and the whole atmosphere is much better.

Leslie, how are you doing?

Thinking of everyone else. I'm taking dd2 over to her new university house today with a boot full of things. She doesn't go back for another week, she just has too much stuff now for one car load.

chewingawasp · 07/09/2016 08:10

I don't have a typical breast cancer. It is small cell which is commonly a lung cancer so to be a primary in the breast is very unusual. Information on this is limited but it is known to be a highly aggressive type. My tumour was quite large. I didn't get to have a lymph node biopsy but had 1 enlarged node which has now gone to a normal size after the chemo. I don't know a great deal about lymph node involvement I'm afraid royal.

chewingawasp · 07/09/2016 08:14

ThanksmrsRhod. When the oncologist was talking about the unusual spine results I did point out that nothing has been straightforward with me and he said that he hadn't want to say that Grin
Have a good day with dd.

EtTuTuttiFrutti · 07/09/2016 08:45

Outlaw I'm thinking of you today. I forgot to say, that I spoke to the pre op nurse on Monday and we were chatting about the biopsies. The nurses call them "punch" biopsies and said they go very deep and cause a lot of bruising. You'll know today but hopefully that will give you a bit of reassurance when wondering if it's grown.

Chewing who dares to be different Grin, I hope that you are feeling on more of an even keel today.

Royal Hope your cold and sinus pain eases off. Awful that you can't treat it because of the thyroid. Sad
The lymph nodes are the body's gate-keeper. They stop nasties like cancer and infection, so lymph node involvement shows that they are essentially doing their job and trapping the cancer cells. It isn't necessarily bad news.

Some cancers however are highly differentiated (very different from normal cells) and fast growing. Grade 3 like mine. They can form larger tumours in the lymph nodes and break the walls of the nodes; and essentially go on walkabouts.

MrsHodge hope that DD is happy in her new home.

Leslie How's the foot ?

royalmama · 07/09/2016 08:57

chewing i am sorry i did not remember the details of your cancer. I see now what you mean. I hope your unusual case turns in your favour.
Mrs, thanks. DH is worried he will catch it now and he gets really really bad colds! Hope your DD enjoys her second year and settles. Down well in her new place.
Tutti lets hope yours are not really into walkabouts!
oulaws hope everything goes smoothly and you are reassured.

mintyneb · 07/09/2016 09:50

outlaw thinking of you today. No matter how bad the news is today you will know what you're facing and you can start to get your head around a plan. You may even find you sleep well tonight

royal let's hope DH doesn't come down with the cold, looking after another patient is probably not what you want right now!

chewing so you're keeping your team on their toes then! I'm sure you would like the comfort of being in the majority though

mrs hope the day goes well and DD finds a home for all her stuff. I remember well the start and end of each year at uni when my parents dutifully drove me (and far too much stuff!) to and from my digs. I probably didn't appreciate their help enough at the time...

Fresta · 07/09/2016 10:07

Morning everyone, just catching up, it seems very busy here!

Chew, sorry to hear your latest news, you seem very pragmatic and its good that your chemo is being effective. You must have such a lot to digest and take on board right now- thinking of you.

Thinking of Sleepy, I wish we could her some news, even if it's bad. I really hope she is peaceful and able to be with her family.

Hope today is good for everyone else. I've been for a swim and going to try and turn the house around before work this afternoon. I get so stiff these days that it feels good to keep moving.

missyB1 · 07/09/2016 10:14

Morning all! Hope you all a very sunshine wherever you are, it's a beautiful day here.

Outlaw got my fingers and toes crossed for you today.

mrsrhod the Uni run, I remember that with my eldest, how on earth do they own so much stuff at such a young age?!

Well if Tamoxifen was keeping me awake now there is a crying puppy who doesn't sleep. Tool her out in the garden at 1am, 2am, and 5am. The good news is no wees or poos in the house. Bad news is I am basically like a zombie today!

pepperrabbit · 07/09/2016 13:40

Afternoon all, just popping in to wish you all the best today outlaws and I hope you start to feel better soon royal and that you're ok leslie
Was it on here that someone suggested glucosamine for the joint stiffness?? I haven't tried it but remind myself that I ought to every morning as I creak down the stairs - then my brain erases the information immediately!
If anyone finds a remedy/relief for the hot flushes can I be first in the queue to give it a try? It's just exhausting waking 2 or 3 times a night in such a state Sad though I don't have to trot round the garden with a puppy like you missy
chewing hope your bloods have perked up and chemo can go ahead, sleepy still thinking of you and our family Flowers

mrsrhodgilbert · 07/09/2016 13:45

I have a check up with my BC nurse on Monday. I'm taking a list of questions. Creaky joint remedies and safe options for hot flushes will be top of the list.meill report back.

chewingawasp · 07/09/2016 13:49

Bloods haven't gone up from yesterday. They suggested I get another done early tomorrow but I need to take ds to his new school which is quite a distance from hospital. Does anyone know if it would be worth my while getting it done later today instead? Should I have it in the different arm from the previous tests?

pepperrabbit · 07/09/2016 13:58

I don't think changing arm will help unless the first one is very painful of course, have they given you extra GCSF injections that prod the bone marrow into producing more blood cells?
When mine was too low they gave me boosters and told me I'd have to wait an extra 2 days. Can you go there after dropping off DS tomorrow or is it too far? Very tedious and frustrating for you.

chewingawasp · 07/09/2016 14:10

Hi Pepper. I've not had any extra GCSF injection before. The bloods were low last time but I just had to wait a week. I reckon I can get to hospital by 10am but chemo is half an hour later so there won't be enough time for results by then. Think I will go to the small local hospital for a blood test as late as possible this afternoon which hopefully may be better. It's all a faff really.

InWithTheOutlaws · 07/09/2016 15:17

Well, it's official...somebody had better teach me the secret handshake!

Ductal, 20mm - they want to start with chemo to shrink before going at it.
Is it odd that I feel so relieved now? The last two weeks were horrible but I can now exhale and get on with it. Whew. Thank you all for the virtual handhold through the uncertainty. Flowers

chewingawasp · 07/09/2016 15:34

Sorry to hear that outlaws Flowers I can understand the relief. At least you know now and can get cracking on with the treatment plan. There's great support here and there's always someone able to answer any questions. Best of luck.

chewingawasp · 07/09/2016 15:34

According to Leslie there is no secret handshake but I'm not so sure.....Smile

Mysillydog · 07/09/2016 15:37

Not unusual at all to feel relieved. I'm sorry that it's cancer, but once you start chemo you will feel like you are taking control a bit more. Did they give any information on if it's hormone receptive or her2+ or If nodes are involved? They can't always tell things like number of nodes until after surgery. My biopsies got that wrong, but I still got the treatment I needed.

mintyneb · 07/09/2016 15:51

outlaws sorry to hear you've had it all confirmed but am not surprised you feel relieved. Your team have a plan and you just need to work your way through it week by week. Between us all I think we've got most types of BC covered and have experience of a number of chemo drugs so if you need to ask any questions just fire away.

I've had a call from the hospital today with my dates. Somehow I've got to drag myself up to the Marsden in Chelsea on Friday for a pre op assessment for a port and then I'm seeing the oncologist to sign myself up for the hard stuff and a blood test on the 23rd and then back again on the 26th for the first dose of chemo and herceptin.

Looks like we might be going through chemo at around the same time....

mrsrhodgilbert · 07/09/2016 16:24

Outlaws, I'm very sorry to hear that but agree with everyone else, it's a relief to get out of the dreaded unknown zone and have a plan of action. So it's dcis, is that right? I'm sure someone has had that but not sure if it's someone currently posting. People often pop up though if they are able to help.

Chewing, sounds like a logistical nightmare, so much going on at once.

royalmama · 07/09/2016 16:34

outlaws sorry about that, but yes it is so much better to actually know and not live in limbo. Now to concentrate on the treatment! Soon you wil be ticking the sessions away.
Minty ports are so much easier to deal with during chemo. They won't have to keep poking and looking for a vein every time.
chewing hope you can manage the two trips and that the bloods allow you to get on with your chemo.
pepper Amen to finding a cure for the hot flushes!
Sorry if I missed anybody else. take care all.

missyB1 · 07/09/2016 17:09

Outlaws: now you can leave no man's land and crack on with treatment, I felt so much better once I had a plan.

Chewing: sorry those flipping bloods aren't playing the game, hope you get sorted.
Have a good evening everyone.

Oh and If anyone does find the answer to the hot flushes they will become a millionaire lol! 😄

ExitPursuedBySpartacus · 08/09/2016 06:21

I agree outlaw. I was strangely relieved too.

Has anyone heard anything about Sleepy?

EtTuTuttiFrutti · 08/09/2016 10:25

Outlaw it's a familiar reaction. Sorry that you've been press ganged into this jolly band. Now you can start fighting it because it's got a name.

Waves to all, hoping for good blood and healthy healing for everyone who needs it, off to the CT with contrast this afternoon.

chewingawasp · 08/09/2016 10:57

Morning all.
Good luck tutti and Leslie for CT scans.
My bloods are still too low so no chemo for me Sad Has been rearranged for Monday but I was told it would still probably be too low Hmm

mintyneb · 08/09/2016 11:30

Oh chewing that's rubbish. Is there nothing they can do/give you to try and get your bloods up? You must be so frustrated Sad

Tutti, good luck this afternoon