Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

I have been dreading a new thread for this very reason.

As we all know, SleepyForest posted a while back that she had had a scan showing progression and that she was going to have hospice care at home. We have not heard from her since. Given her health situation, it is unlikely that there would have been any hope of recovery. We do not know for certain that she has died, so I suggest that we simply keep Sleepy and her family in our thoughts

Looking back through the last thread a few people haven't posted for a while. No need to post if you don't feel like it, but I hope you are OK.

Elmindarina have you finished chemo now?

dinster I hope your post treatment blues are lifting

Patara are you still lurking? :)

abitwrong are you still around? How are you getting on?

motherlondon I hope you've fully recovered from surgery now. What treatment are you having?

SandwichYum I hope you've recovered from rads now. Was that the final part of your treatment?

helly18 I hope you are recovering from chemo. Any more treatment?

mishmash any news?

froufroulala have you finished chemo now? I hope your energy is returning

Yazozobear how did it go at the breast clinic? I hope you got some reassurance

WiltingTulip how is chemo going? I hope you haven't had any more problems

missyB how's the puppy?!

FlyChickie how are you?

cleanasawhistle how is your collar bone swelling?

lookingforbaubles have you made a decision about the reconstruction?

I think that's everyone, which is just as well as I'm running out of vaguely imaginative things to say!

Apologies to anyone I missed

Thanks so much for the new thread, Leslie, for the sensitive message about sleepy and for being such a fab elephant matriarch.

I'll post properly soon (not that I have any interesting or helpful news) but waving and wishing everyone the best - I'm following!

Hair status: Ronald McDonald meets badger.

Blimey, that's quite a combination dinster

Good morning Lacies, elephants and co.
Thanks Leslie as always for keeping the thread going and supporting each and every member.
I have not stopped thinking of sleepy, but I have, like you, the inclination to believe she may have passed. I sometimes think of Lily too. These are / were real people like us who posted here and struggled like us with this bloody disease. My thoughts and prayers are with their families.
Tutti my goodness what an ordeal! You poor thing! I went through something similar, but nowhere as extreme as you, so I can imagine what it must have been like for you. Like Leslie i have a port ( though chemo done since jan of last year they have kept in in case!) and it is so so so much more convenient. At some point when it is chemo time you may want to talk with them about getting one.I hope you managed some rest after that. A new day, a new dawn?
Wishing each and every one of you a good day ahead...well as good as can be!

Good Morning Lacies, Elephants and all Ronald Badgers

Well I had a great night's sleep even with the drain in and have overslept about 3 hours !

Leslie thanks for the lovely introduction. I think you are right with regard to sleepy and my thoughts are with her family.

You are incredibly brave re the jabs; and you will rest so much better at home; but it's another complication that you really could have done without.

Royal I'm going to ask for something as soon as I get the clear margins. Through this whole thing, the processes/operations etc. have been civilisedly (new word) painful; but yesterday felt desperate and out of control; and very frightening. If I need any more jabs, I'm getting Leslie to do it.

Chewing; two cancers ??? What does that mean for you, in terms of treatments? See you just have to be different don't you ?

Morning to all the other lovely lacies' I'll catch up during the day and read back. Hope we all have a good day.

Morning all
Leslie thanks for starting the new thread. You clearly have the memory of an elephant . Hope you are feeling ok today. I often think of sleepy too
Tutti glad you've had a decent kip and I hope your arm is not so sore.

I'd rather not be 'different' as it means limited knowledge and experience generally. On the plus side there seems to be a lot of discussions going on between staff at different hospitals about me so it's good to get lots of input I guess. The main issue is the type that I have which is basically a lung cancer in the breast which means different treatment options. It reacts well to chemo so I've started that first with the aim to significantly shrink it before rads. I've got to have another in depth scan soon to see if it's spread any more as it's an aggressive bugger. It's already reacted differently to what they would expect to see so that's why my plan keeps getting changed. Hey ho, nothing like a bit of variety!

Hope everyone has a good day.

dinster is your hair red and stripy and like a McFlurry?
I have a touch of badger infused with worn out bog brush

Thanks leslie for the new thread, I'm in awe over how you manage to keep up with everyone. I think about sleepy and her family as well as lily. Also someone who has stayed strong in my memory was beccajo (sp?) who we lost nearly 2 years ago. She was a young mum with 2 children - only about 1 and 3 if I remember- who had stage 4 melanoma.

Hope your hospital stay continues to go well and you're home soon.

tutti I'm glad you slept well, must be the shock. I keep thinking about your ordeal yesterday and I'm struggling to understand how anyone medical didn't step in and stop the madness! As leslie says, my hospital only allows a professional 2 attempts before someone has to take over. It must have been very obvious to theatre staff that after even half hour of trying there was a problem.

Take it easy on yourself today. Will you have the drain for long?

chewing I'm so sorry you keep throwing up new challenges for your team. You do realise they'll probably end up writing a book about you?! It's good to know that chemo (when you get it of course) can zap it though. Will be thinking of you as you go through the next round of scans

dinster I'm very intrigued by your new look!

Minty I still can't believe it happened either. Haven't got the energy to be angry about it at the moment.
Thinking about it, it didn't start well. Have any of you been asked at the booking, by a 12 year old anaesthetist if you've had any wakefulness during surgery ? DH and I just both looked at each other.

There were 6 in the room by the end of it. The anaesthetist called in her "supervisor" (woman) and then the supervisor called in the consultant and then someone else came in for the ultrasound.

A nurse kept popping her head in from the theatre every 20 minutes or so, and they just said nothing but all shook their heads.

They were panicing, I could tell and it got me really freaked. For the first time this all started I felt like bursting into tears.

The first one near the ankle was an absolute bitch, but the second one in the arch of the foot was something else.

It's really spooked me.
I've got to get 30mm two days consecutively from the drain and then get it removed; but last time I didn't manage that so had it for the 7 days maximum (I'm very juicy apparently). I wouldn't normally have had to have a drain but they've inserted it as I had lymphodoema and surgery disrupts the area further.

On a good note. I have a lovely right boob. It's half the size of the other one and lovely and pert; like I was 30 again !!!! Rather than have fat transfer from my belly, I'm going to ask for the other one to be reduced; or.....

And this comes from my experience yesterday.

If I don't get the margins this time, I'm going to elect for a bilateral mastectomy with nipple saving. I can't keep going through this, and with the HER 2 +, I can't trust the breasts anymore.

Chewing, or Mrs Badger Bog Brush, that chemo is going to zap it to hell and back. I think it's an advantage in this case that you are different in this instance. Lots of heads and opinions will be brought to bear.

😂 at you being such a juicy TuttiFrutti

Hi everyone, I'm new to the thread, and in fact cancer!
I don't have cancer but my mum has been recently diagnosed with CUP, there seems to be a complete dearth of knowledge about CUP as every case is completely different. In my mums case she went for an MRI on her back and it showed a whacking great tumour on her spinal column that has actually caused her back to fracture. The tumour is secondary and the primary cannot be found anywhere. She's had 10 radiotherapy sessions and started on 3 various chemotherapies last Friday.
We are all devastated and in shock, I veer wildly between optimism and weeping on her bed begging her not to die. I'm not sure if this is normal!
So that's a bit about me, I'm hoping to be able to talk on here a bit as I've only told a few people in RL as it seems as soon as I start talking about her I burst into tears and its starting to get embarrassing....

Here's a hand hold What.

I know zero about CUP I'm afraid; but I do know it affects people in different ways (I was an obnoxious angry brat for a wee while there ); cry, sob, rage as much as you need to.

The other lacies here are an interesting bunch (don't mention the hair or the eyebrows); and have a shed full of knowledge, so I'm sure they'll be along to help soon.

xxxx

Thanks tutti,
I too had never even heard of the existence of CUP but in the past few weeks I feel I've learned enough to become a fully qualified oncologist!
I often lament to her 'why couldn't you get a more straightforward cancer'?.....

Welcome What although sorry you are here. for you and your mum.
I am puzzled by how they decide if it's secondary or primary. I need to ask my oncologist how they decided I have 2 primaries as it is very confusing. Maybe it relates to the type you have?
Hope the treatment helps your mum.

It is puzzling isn't it Chewing. Have you had biopsies ?

My best friend had pancreatic cancer, but they said that wasn't the primary; they never found the primary. I was never clear on how they knew, and neither was she.

I have had breast biopsies but nothing on the spine so far. I need to ask if dual primaries mean the same prognosis as secondaries which are treatable but not curable. Also, if I want to use my private health cover, it only covers primary cancer and not secondary. I can see problems in having 2 primaries

Well they removed part of the tumour in my mums spine for testing, apparently they can tell if it's primary or secondary by examining the cells of the tumour, secondary cells are different in size/shape/make up than primary cancer cells.

Doesn't get any easier does it. Fingers crossed whatever it is, it's covered by your insurance.

My DD has a cracking headache and is keeping an eye on me skivving from school. As I'd had the results of the scans, I let her have the scan discs this morning.

Her analysis of the scan indicates that I have a left kidney in the shape of a goat.

I hope that she isn't considering radiography as her specialty

I've heard of a pygmy goat but never a kidney goat

See Chewing you're not the only one that's different My kidney is really speshul.

Thanks for that info What; sorry the information is one way at the moment. Have they given you the cancer booklet at the hospital with all the cancer organisation web sites ?

You could name it Billy the kidney
Thanks What that makes sense.

Billy the Kidney

Thank you for the new thread, yet again, Leslie. You have the most amazing memory or do you have a secret spreadsheet? Whatever it is you are remarkable in your ability to remember everyone. I believe you are right about sleepy, so very sad but it's been a while now since we heard from her. I still think of Lily and beccajo.

Tutti, that sounds horrific. I'm struggling to believe that was allowed to happen, you poor thing. I shivered when I read the words foot arch. I hope you're still feeling ok today.

Thanks for the new thread Leslie I hope you are feeling a bit brighter now.

Welcome what. My cousin was diagnosed with CUP and I know it can be very frustrating and each case is individual as there are so many sources it could have come form. I think when the primary is unknown doctors find it difficult to identify the type of treatment which will be most effective. Sending you .

My nurse has insisted I have a course of antibiotics to clear the mystery infection that the sonographer reckoned she could see on the ultrasound. I still think the fluid is due to radiotherapy. My breast has remained at least a cup size larger than the other one and it's 2 months now since I finished treatment- is this something anyone else has experienced? I don't think it's lymphoedema as it's just exactly where the beams hit, including across my collar bone which is less visible than the other side. It's also still slightly tender to touch. I just can't remember to take the antibiotics though- 4 times a day and an hour before eating-they are not fitting in with my daily routine-so not sure they are going to work well because I keep missing them! It would be easier to remember if I felt ill and like I had an infection.

Waving to everyone else. Hope you all have a nice Friday night.