Cancer Support Thread 98: support for those diagnosed and going through treatment

[FcukBreastCancer]

Hello 👋

@Tiddlywinks63 im so sorry to hear your shit news. I’ve been having chemo since Nov and it’s a bloody rollercoaster but hanging on in there, just. Are they positive it’s not curable? I know
someone who; after chemo they couldn’t fully remove the cancer so they “boxed it in” if you will and she’s been like that for over 20 years now and still happy and thriving.

@cantbelieveIamhere @Ventress and anyone else I’ve missed, how are you all? I’ve been struggling with a few things, had my second dose of EC yesterday and was given a lot more taken home meds this time. Still feel horrendous but at least managing to eat this time around… for now anyway. Cold cap was doing wonders for 4 months but the new treatment has done an absolute wonder on me and all my hair is just falling out in bucket loads so partner took to it with scissors.

if anything I think that’s been one of the most traumatic things for me, my hair was long and thick and past my bum and now I’m a skin head. Hey ho got to think of the end goal.

i hope everyone is as well as can be. Finally got my date to sit down with my surgeon to discuss options in a few weeks, oddly looking forward to it. Hoping for a free boob job on the NHS (have to joke about these things or I will cry!)

@Bangersndmash definitely not curable unfortunately. Definitely sending you a big 🤗 xx
Does the fact that it’s in both lungs make it Stage4?
At the moment I’m feeling quite resigned to whatever happens next, it’s the PETscan in 2-3 weeks then biopsy 2-3 weeks later, then….???

@Bangersndmash sorry to hear about your hair - some of the chemo is worse than others and affects your hair more I think. I was lucky the cold cap helped and I have lost a lot on top but you can only see by sending a drone up - cold capping is supposed to help it grow back quickly - so hopefully it will for you as mine is growing back already.
I dont know how you are doing it with children, most of my chemo left me like a zombie unable to do anything other than get up and sit still all day. I dont think everyone is so ill but I was - they say its bad for a week, not so bad for a week and then you have a week to recover before you start again but mine was bad for over two weeks, barely got better and then hit by the next lot.
Its now week 5 since my last chemo and I am still exhausted, have watery eyes and itchy arms - all apparently the after effects of chemo. Am now waiting for scan results in terror. But I am able to taste some food now! How many more have you got to do??

@Tiddlywinks63 I know someone who has lung cancer, he has had it for four years and had chemotherapy, then carries on with his life and occasionally goes back for maintenance chemo so although he thought thats me done he has continued on and they keep the cancer under control. I am not curable either and have just finished 6 cycles of chemo and having continuing treatment via injections. Good luck with your scans and biopsies and try not to google.

the day i wrote my last message was my dog Oscars last day, he had multiple seizures that night and has gone, I am heart broken - he was only 6 and had seizures on and off for some time but they got worse since my diagnosis, hes been there for me when i am up in the night not sleeping from chemo and now I have to manage without him.

@@cantbelieveIamhere so sorry to hear this, my animals have been absolute stars through my treatments, go gently.

So sorry to hear this @cantbelieveIamhere Poor little darlin. My precious elderly retriever got me through my operations, significant bereavement and chemo, then passed of cancer himself. So very sorry. 💐

@Bangersndmash gah, I remember looking in the mirror with my hair cap on and my last eyelash hanging in there, saying to myself “I look like a proper cancer patient now!” FWIW I also cold capped and went from waist length hair to a short Emma Thompson (& grew out my greys). I went thin on top but now I’m post-chemo, my hair has come back quite thick. I think the cold capped protected the follicles, so hang on in there.

@Tiddlywinks63 so sorry to read your news. Keep buggering on.

waving to any who remember me from my full on chemo days. I’m now on tablet chemo for three years (& AIs) and gently picking up life.

So not sure why im posting tonight, just want a bit of a sounding board…

got my scan today to see how my body has been reacting to chemo and don’t know how to feel. I’ve got x2 chemo sessions left.

had two lumps… breast cancer completely gone, cancer still in lymph nodes but reduced 50%. You would think I feel more happy but because it’s not completely gone I can’t allow myself to feel happy or celebrate the win.

don’t know how to feel about the news.

Hi @Bangersndmash - I came on here for a whinge and saw your post. How are you feeling now? I completely get the feeling that the news is positive but not positive enough. Have they given you a plan for what happens next?

I posted a while back but haven’t been on for ages. I’ve got stage 3 melanoma and have been having immunotherapy which seems to be going fine. But I’ve got a lump in my groin which my surgeon thought was a lymphocele from the surgery I had back in October and very relaxed about: said if it got bigger to get an ultrasound and a fine needle aspiration if necessary. Went for the ultrasound today - was told it looks a bit concerning and to come back next week for the FNA. Bit pissed off that it didn’t all happen in one go given the referral from the surgeon, and scared this means the immunotherapy isn’t working. Gah. Also have scans in early May, and scared as to what they’ll show. But I look so bloody well, I feel like a fraud.

Rant over!

@Onewildandpreciouslife i have looked well for so long, living with cancer secretly growing, living with 5 months of awful chemo, it’s only the last couple of weeks it’s all caught up to me and I look like a bowl of scrambled eggs now. You’re not a fraud.

also, there’s so many different chemo drugs that do different things, and immunotherapy is that, immunotherapy. There are targeted drugs for certain things, so if you do get, some unwanted news, it just means they may switch up your drugs.

if all sounds very shit and I’m sorry and hope you get some positive news soon.

its been very much what do I want in terms of surgery. It’s not in my breast but I unfortunately carry a rare and shit gene which means im 70% likely to get bc again, so im opting for removal and reconstruction. Double M. When I’ve finally finished chemo in a couple of months.

Hello all, checking in. Hope you are as well as can be expected.

I’ve not been great- hence not posting, but I am on the mend now.

I went with DH and DS to a university offer day in Durham (6 hours north) This was lovely, and we had a great time, except that I think it was just too much for me. I ended up in A&E and on oxygen. I had my lungs drained of 1.5 litres of gunk (DH said the gunk looked like gloopy cider 🤢 )

Anyway, I’m still very wobbly and my balance is screwed up. My left side (dominant side) is still very shaky and the lovely Sue Ryder people have been in and transformed the house into basically a hospital room! They are sending me a physio every week too. They are just fab people 😊

Apparently I was a bit of a mess mentally - my sister and DH were really worried about me.

i had finished the weekly paclitaxel just before Christmas and oncology had replaced it with ribocyclib and other steroids, but this wasn’t doing it for me , so I ended up
having 6 weeks with no effective treatment and this scrambled me up. I had more tests and scans and now I’m on a different, tablet based, chemo which seems to be working better. Fingers crossed! It’s been about 4 weeks and I’ve been recovering slowly and feel better.

DH and DS are out tomorrow and so my sister is coming to “babysit “. She finds this very amusing!

How are you all? I haven’t been reading in the last few weeks much but am trying catch up 😊

@Ventress ohhh Ventress, so sorry to hear about needing the paracentesis but am glad the fluid is gone. Hoping you won’t be needing that again. Also very happy to hear the med change helped. I’m crossing everything for you. Prayers too. I’m not familiar with “Sue Ryder” but they sound wonderful. I have a PETscan end of this month. They are always so anxiety producing.
I wish there was something I could do for you from 6000 miles away. Hang tough!!!!

@Nonamelass Haven’t heard from you for awhile and hoping everything is as ok as it can be (relatively speaking when one has cancer).

Hello @Sbmpplovely to hear from you. I do hope the PET scan goes well I wish I could go with you and give you a big hug 🤗and make these less stressful for you.

not sure how to describe Sue Ryder but they provide additional equipment and useful support facilities. A bit like a practical MacMillan 😊 super helpful anyway. I hope you have something similar should you need it.

@Nonamelassand everyone else. I really hope you are , to use @Sbmpp’s phrase - hanging tough (love this!) and are fighting off the hideous big C. Please take care and check in when you are able.

@Ventress Hello from an 'old poster' - I'm really sorry to hear you've been havin' troubles - I hope you're feeling rather better today - remember to ask your sister for a bedtime story when your feeling tired!
Best wishes

Hi Dan, how are you doing? Thank you for checking in! I did your Christmas quiz and really enjoyed it. I’m sorry I should have fed back to you. I’m looking forward to this years 😊

I love the idea of a bedtime story 😂

@Ventress I missed you, I am glad you are back I hope they havent moved your reading/cosy chair too far away.
Sounds like you have had a dreadful time so its good to hear that things are improving.
I no longer have my gorgeous sprocker spaniel Oscar who kept me going through all my chemo sleepless nights so I am finding myself crying most days he went everywhere with us so theres nothing that doesnt remind me of him.
I feel lost without him.
Glad to hear that the tablet chemo is better for you. I hope the physio helps improve your strength too, sending lots of good wishes to you.

Oh @cantbelieveIamhereI’m so sorry about your gorgeous sprocker, Oscar. Enormous hugs to you. I do understand, we lost our beautiful Labrador, Luna, just before I started treatment and the whole of our lives was affected. Bless you 🤗

Thank you for your lovely words, nobody has moved my little reading chair corner (luckily)! It is good to be back and catch up with you and the others. I’m sorry you are here of course and I am sending my best wishes for your recovery and my very sincere condolences for gorgeous Oscar.

@Ventress thank you for your kind words and I am sorry to hear you have lost your lovely dog Luna - its been the last straw for me, I am still recovering from all the side effects of chemo and was hoping to be able to get back to walking the dog, in fact we had one special walk that he loved and havent done for months about two weeks before his traumatic death so I am glad I have that memory. Its over a month now but the crying is constant I seem to be overwhelmed with grief - as I say the last straw.

I am still ongoing with phesgo and they have tried to tempt me with letrozole but I said no thanks, I have had many side effects from chemo that still linger including the latest which is terrible itching every evening for which I am taking fexo something or other antihistamine and special dermexa cream and ice packs.

How did they discover your lungs needed draining?

Glad you have your sister to look after you when everyone goes out and glad you are catching up on reading its so helpful to switch off.
I really am so pleased that you are back on here,

I can imagine @cantbelieveIamhere. It’s so horrible to lose our beautiful dogs. They are family and such a huge part of our lives. I won’t lie; even 9 months later I can still hear Luna tapping on the kitchen floor and expect her to appear. So disappointing when she doesn’t. Your beloved Oscar is watching over you.

Do the walk when you are able, don’t force yourself into something you aren’t ready for. I still can’t do one particular walk! Perhaps I never will…

Your side effects are horrible, I can totally understand why you don’t want to add anything else to the mix. I am not having the phesgo. Forgive my ignorance but could they try a different chemo that wouldn’t give you such horrible side effects? I was taking Letrozole but it has stopped with the new chemo combi. (can’t say I’m upset to stop).

I do hope the side effects subside. Your gorgeous Oscar is watching over you and will help you get well.

Between you and I, I was rather out of it when I went back into hospital. Speaking to my sister yesterday I think my blood oxygen was just too low and so when they checked all of my vitals they were awful and they started looking at why. I’m having a CT scan, and will be back in the respiratory department tomorrow afternoon. They are going to check my lungs/chest to look at the amount of gunk tomorrow but I have a feeling it’s okay (as my blood oxygen is pretty good).

@Ventress I’m ever hopeful that everything will go well. I’ll be thinking about you. I’m having chemo #25 Wednesday. I’m wondering how long a person can tolerate the bloody stuff.

Thank you @Sbmpp. I hope your chemo goes well on Wednesday, but I’m sure/hope I’ll be back before then 🤞

I have hospital appointments today, so nothing else planned. I’ve decided that I will try and do one thing per day, to avoid getting too tired.

How much longer do you have on your current chemo?

@Ventress I hope your appts. go well. Yes to staying rested. I need to do a little more. Like a half mile on the treadmill and snip just one rosebush down. Yesterday I planted a few seeds in small pots and am trying to root my favorite rosebush. It’s called a “Lucille Ball” and it’s full of large peach colored blossoms. I think it’s at least 20-30 yrs old!
My chemo is palliative unfortunately. I’m determined to continue. It does make Pet Scans anxiety provoking.

May your day be full and bright and we both hang tough!

I hope everything goes well for you today @Sbmpp. My chemo is palliative too but I believe that it can be changed to a different type if required. Is this something your team could look at? The PAT scans sound really exhausting and unpleasant.

I spent most of yesterday at the hospital. The CT scan was fine - nice and easy. More surprising perhaps was the chest drain. I didn’t expect as much nasty gloop! The doctor took 1350ml off my chest and the team have suggested a more permanent solution (as this was just 6 weeks worth of gloop!) I have left this up to oncology and pleural to decide which option to go for .

your rose bush sound amazing - love Lucille Ball, a complete legend! I hope it goes well 🤞

Hang tough my lovely 😎❤️

@ventress that sounds like a busy day at hospital, the chest drain sounds ominous - is it more straightforward than it sounds?

I was also at hospital yesterday having phesgo again - its immunotherapy not chemo but I now think the itching is related to the phesgo as last night it was atrocious and woke me up at 2 am so am sitting up with ice packs in the middle of the night and no dog to keep me company which just makes me cry again.

I dont know about you but I find it all a bit of a muddle because the unit will only do certain things and now seem to want me to get stuff from gp (guess its budgets - use theirs not ours) and oncology appointments are rushed - I am usually stressed and dont hear things properly and then information doesnt come back to me very quickly in writing and I cant access anything online yet so I am finding if frustrating.

Anyway I hope you are having a better day today.

@Sbmpp I love a rose, I have just bought a lovely rose for my dogs resting place but I cant plant it yet. Good to garden its a hopeful thing and does help you switch off but frustrating that you cant do the things you used to be able to do so I have to ask my husband for lots of help now. Best wishes to you

@cantbelieveIamhere @Ventress I went to have my chemo and was sent home due to my platelets being too low. I had my labs drawn yesterday and the results came back yesterday right away. I don’t know why I wasn’t called and told yesterday afternoon to stay home today but it was a trip to the hospital for nothing. I now have to wait til next week, have the labs drawn again and hope for the best. I get so anxious about missing a treatment because those adenocarcinomas sure like to grow 😳. Anyway, my dh took me to breakfast so that was nice ♥️. Ventress did you have another drainage? @cantbelieveIamhere i’m sorry to hear about your Oscar 😢. We had to pts our lovely Francis four years ago. None of our family have been able to get over him. (He had a heart attack and went into CHF and no meds worke etc). I just feel as if he was here our lives would be so much happier. I hope you both have a much better week after the one we’ve just be through.