Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Why are we on different chemo regimens yet the same stage/ grade and type of cancer?

Also do you have any of the typical characteristics of a triple negative cancer patient? I don't.

Because of the rate of recurrence I'm trying to work out why I got this cancer.

@isaxx

I also wanted a mastectomy but they wouldn't do it. Said it's best practice to conserve breast tissue?

Aaaaand back to all about me

I don't know why it's taken me so long but it's just dawned on me, I can't work

I'm off sick at the moment but I drive as part of my job.

Seeing HR on Wednesday...

@tothelefttotheleft No, I don't have the typical characteristics of a triple negative patient, but I had radiotherapy to my chest 25 years ago for lymphoma and triple negative is more common as a result of radiotherapy, so that was the likely cause. As to the mastectomy, I could not have radiotherapy to the same area again, so that ruled out other options. And, regarding chemo regimen, again, due to life long limits on chemo, they said giving me the heavier version who risk heart problems. I am quite concerned as a result that I may have been under treated. Not good for my anxiety..

@tothelefttotheleft you will drive yourself mad trying to find a reason for your cancer. It’s just bad luck! I’ve had a triple positive BC on the right and a triple negative BC on the left. I have no family history and no defective genes. I should be under 40 and black, not over 60 and white.
Why me? Why not me!

About different treatments, some areas are quicker to adopt the latest regimes. I had FEC-T with Herceptin and pertuzamab three weekly first time then EC-T two weekly second time with 8 cycles of Capecitabine. Some places use immunotherapy now for TNBC. It all works. Trust the process!

@Tilllly that’s tough. Could you do any work from home?

Lazing around today. I must do something useful.

I don't know what will happen @TopOfTheCliff
Am seeing HR Wednesday, they've been great
But driving is essential for my role

@Tilllly

Why do you want to happen? Do you want to continue working? Just wondering what would be the best outcome for you.

@TopOfTheCliff

How do they treat you with two different cancers? Now that really boggles my mind!

@tothelefttotheleft I wouldn't even contemplate trying to work out how you got the cancer. I tried this when diagnosed with secondaries; in front of a bunch of oncologists and BCN!

I just blurted it out
" How is a fibroid, now an aggressive sarcoma? How did BC get to my ovaries, fall tubes, cervix and abdominal wall? How is it in my lung ? Am I even human???? WTAF!

It's just the way to the shite cookie crumbles.

@tothelefttotheleft there was a two year gap between them so I had treatment for TPBC then started from square one again with TNBC. Groundhog Day. I’m done now, thankfully, apart from some Zolendronic acid infusions and exemestane tablets.

@Tilllly is there any room for early retirement on medical grounds and get your pension now?

I think so @TopOfTheCliff

The organisation and HR have been great

It's just... fuckity fuck fuck

And just cos for...

Meet Daisy dog
Coming to a Tilllly near you in 3 weeks

@Tilllly I would also suggest that you try to go to your HR meeting with an idea of what an okay outcome would look like for you, and what you don't want. Just so you have a few scenarios in your mind! (Love the puppy, by the way)

@tothelefttotheleft The WHY question.... Try not to go there. I'm also on my second primary cancer - first hormone positive BC aged 39, and now an ultra rare chondrosarcoma at 42 (but it's apparently been there for at least 15 years, it's a slow growing piece of shit). They're still doing some genetic testing, but it is extremely unlikely they'll get a conclusive answer. And even if... it does not change the treatment in my case, and makes the outlook even scarier. Big sigh.

I went out for lunch on Friday, and yesterday, and today. I'm now approx. 100kgs heavier and crave vegetables. But I think I've finally turned a corner! I've got a little more energy - and my head feels clearer. Finally!

Ooh @KentishMama how decadent! Did you go anywhere nice?

@Tilllly omg I think I need a Daisy dog 😍 she's beautiful (and it's a good job someone stops me when I suggest random house animals or I'd have a zoo. This week's wants are a tiny cow, baby sloth, and axolotl 🤣 Tiktok has a lot to answer for!).

I'm seeing the cardiac nurse tomorrow. Looking forward to discussing this shitty weather, how cold it is, and having bloods taken for oncology. For the bargain price of £5.40 bus fare & rushing out of work 🙄 . I'm going to tell her that unless there's a need to see me in person, she can make do with phone calls & see how that goes down. Much rather have a pointless chat from my own kitchen, with a brew in my hand, than schlep about in this.

Sadly I didn't go anywhere decadent, but two local cafes and then today a Mexican place for my stepson's birthday. The smallest and cheapest of the cafes was the best - avocado toast, poached eggs, halloumi and bacon. I love a good brunch 😊

That sounds so tasty 😋 I have an avocado in my fridge for Tuesday's fend for yourself tea. Maybe it needs an accompanying poached egg and halloumi 🤔

@lucysmam that sounds like what I would have while DH sneaks out to get a Dirty Kebab!

@Tilllly I received my diagnosis just after I had landed a really interesting job which would have also required a big location move. I was beyond excited and then beyond disappointed that I had to let the opportunity pass.
I'm still gutted by it and my life has been so different. I eventually accepted that I would have to take early retirement(I was a psychiatric nurse and only just had a grip on my mental health) making the decision was the hardest bit once that was done it got easier. I
3 yrs on and I have to say that even with a rubbish prognosis retirement is great. If anyone asks if I want to do anything say yes with confidence that I'm available.If I just want to mooch around not seeing anyone I do so without the worry that I'm wasting a day off.
Obviously that's my experience and I know that what works for me is not going to be the same for everyone.
The pup looks amazing can we have virtual dog snuggles?

Public service announcement - whatever your fitness state and whatever you do, try not to get completely deconditioned. Sweet Jesus above this PT is going to take two days to recover from such taxing exercises as tapping a toe and lifting the leg. I'm also getting over a lung infection, but I was so embarrassed by how weak I am. I used to be an athlete!

Dead glute does seem to be coming back a bit, so that is good.

@Tilllly good luck with HR, get them working for you.
I vE only just got my nhs med retirement through from different health issue and then BC .. dragged on but occupational health physician was so supportive.
And as for Daisy.... What a beaut !! Enjoy her, I'm not sure what I'd have done with my gorgeous mutt and felines all just hanging out and watching out. My doggo gets so excited if I can get a little trot in with him...I'm dreaming of long walks hopefully in the future! And watching v him get muddy

Hi @HerbalRefreshmentt - thank you for this, which has prompted me to spend a few minutes on my pilates abdominal exercises.

I've mostly just been lurking on this thread since checking in. Have now completed my initial six cycles of pre-surgery chemo and had a CT scan showing enough shrinkage that they are willing to put me on the surgery list (it was previously too big and messy in there apparently). Not sure of a date yet but will be mid-Feb some time.

I used to do 10km runs but the past 12 weeks of chemo have hit me hard and I've been finding a 20minute walk quite challenging. Need to spend the weeks between now and surgery trying to regain a bit of fitness.

@HerbalRefreshmentt it is good to hear from you.
@HohiyiKozbevi well done getting through chemotherapy and great news about the shrinkage! How long will you wait for surgery? I had about six weeks each time to recover enough to have wide local excision.
I'm now three months post oral chemotherapy and have worked hard to regain some fitness before my hip replacement. Four days to go…

How are you today @Tilllly ? Still fuming? I know I would be. Thinking of you.

@Florsilvestredelcampo that must've been utterly soul destroying

@TopOfTheCliff I went to see a friend today - via public transport. Had I driven, idve left at 9.15 and got there for 10

Half hour walk to train station, train to city, train out to friends, 25 min walk to hers. I had to leave at 7.30am and train cost me £14
19,000 steps in today. Now in bed

Had email from lung nurse

"are two small 4 mm enhancing foci left superior frontal gyrus. There are also two indeterminate areas in the temperol lobe"

Not sure that I'm any the wiser

@KentishMama

Where in your body is the second cancer?

Glad to hear you fell you've turned a corner. I remember you being in hospital over Xmas.

So I had my hair cut shorter for the cold cap today.

I said to one of my children I look like that royal person as I struggled to remember their name. . They said lord Farquaad? I actually meant Richard III....