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

[LemonDrizzle10]

Old thread nearly full!

@Tilllly I was very sorry to hear your news I hope the treatment works for you x
@TopOfTheCliff congrats on your clear scan onwards and upwards. Are you still going to be editing the guidebook to the West country?If so I would be happy to guide you round my small corner of it.
I'm still in the midst of injection hell with my son I phoned his team and they suggested lots to help but also an icepack to numb the area. If that doesn't work they suggested a device called a buzzy bee which has a gel ice pack and also buzzes to distract the brain from the injection . There is a ladybird shaped one which is called the 'personal lady buzzy' which sounds like something I really don't want to give my 10yr old!

@Florsilvestredelcampo I shall be updating the guidebook but after a small matter of recovering from the hip replacement I’m having next week. I guess by late March I will be driving and mobile again. I’m strangely enjoying being a non cancer patient. It’s very straightforward and there isn’t that element of pity you sense when you go in with no hair for chemotherapy.
I am sorting out my house and food supplies now, as well as taming the allotment. It feels like the clock is running down to get everything done in time.

@Tilllly I'm so sorry to read your update and hoping the treatment is successful and can be started soon. I'm also so sad for you about the driving. Church is important to me too and you mention not being able to get to the gym either. It's all very well that there will be someone at church more than happy to pick you up and take you back home, but you don't want to be dependent and have to be in that position Xxx

@TopOfTheCliff you sound very organised to me, how long do you have to stay? I can understand the novelty of not being a cancer patient even though I haven't experienced it yet.

@Florsilvestredelcampo oh dear, your poor son and poor you with the injections. I had to give myself blood thinning injections twice daily for 8 weeks around my surgery and for the first few, I was so terribly anxious. I'm hoping the icepack will help him. Oh gosh, the 'personal lady buzzy' though!

Tilllly I am so sorry to hear your news and sending a big hug. I hope treatment can help and you will get to your son's wedding. 💕

Exactly that @Fantasea

Time to get ready for PCC mtg - awaiting lift
Ffs

Really sorry to read your update @Tilllly.

Does anyone know if you have to cut your hair shorter to use a cold cap?

Just popping in again as this thread came up in active, really sorry @Tilllly about your news. hope gamma knife surgery can do something amazing!

@tothelefttotheleft your hair doesn't need to be cut for cold capping generally, but if you do have a lot of hair or very thick hair it may be worth checking, there's a very good Facebook Paxman scalp cooling group that you can ask this sort of question in. I was a bit concerned about how tight the helmet was the first time (and I did end up with a bald patch at the front), so after that I brought a scarf with me that I put over the top of the helmet and I sat on and pulled through my legs so that I could make sure that the cap was close enough to my scalp, although the Paxman representatives do you say don't pull it too tight, because then that stops the liquid moving through the cap, I'm sure I looked quite mad!

@Tilllly Most of my reading up on Cyber knife was not in English and quite focused on my specific location in the skull base, I'm afraid, so no great links to share. But, I tend to go to Google Scholar to search and then filter for the most recent articles until I find one that matches my needs. Maybe that helps?

@TopOfTheCliff Huge congrats on the beautifully unremarkable mammogram. Hooray!

Ooh never thought of doing that @KentishMama

Thank you

There's a new person on the stage 4 thread, but I can't tag her or link her to here
She's newly diagnosed
Can someone try to link her here?

I've posted the link @Tilllly

My hero 🦸‍♀️

<adds cape to shopping list>

@laspo this one here 🙂

None of us wants to be here, but everyone's very supportive & you're free to use the virtual rage room if needed. Or just have a good old moan if that helps. Please stay away from Dr Google though - you will scare yourself shitless!

Hi all
I thought I'd pop over again as feeling a bit isolated in the real world with all this shit.

Diagnosed with metastatic Bc in lung, November 23. Started on ribociclib and letrozole beginning of January. It's going okay ( so far!) Just knackered from Hysterectomy 8 weeks ago, no hormones and menopause, anxiety etc. Meant to be back at work end of Feb, but literally can't be arsed. Close colleagues don't get the secondary diagnosis at all

Colleagues: How do you get BC in your lung?

Me: It's metastatic. The bastard cells have travelled and grown.

Colleagues : Just have the other breast off then.

Me: Erm, no you don't get it. Never mind!

Sorry for moaning. It's just that I'm bitter, that after 14 cancer free years, the bastard has decided to return and hide in my abdomen wall and lung.

I will hunt down a Maggies centre or something next week..

I'm glad of this safe space 😊

Also, does any one take sertraline for anxiety? I'm thinking of asking my GP for this next week. Thanks

Hi @Enigma52

Similar here so I sympathise
I only got 2.5 years clear

Thankfully my colleagues have been great

DFSC we say
Damn fuck shit cancer

Definitely DFSC @Tilllly
What a bloody shite thing to cope with.

I'm so sorry to read your update, it really hurts when people don't understand and trivialise things. I'm permanently anxious and take beta blockers daily. They don't stop the thoughts but stop me feeling so panicky. I take 3 every day with the option of a fourth one if I'm having a particularly bad day, they just 'take the edge off' which helps.

@Fantasea is that propanol that you take? I did ask the GP to prescribe these, when she was extending my sick note, but she was reluctant and said they wouldn't work. Well my anxiety is very real and I need something. Hopefully a different GO will be more understanding.

Yes, now the hysterectomy is done , that's it, back to normal!

@Enigma52 yes propranolol 10mg, 3 or 4 times a day. They work brilliantly for me and my GP prescribed them without any issue. I did have a rather awkward exchange with a registrar on one of my many admissions though. He said they should be taken on an 'as and when' basis and not continuously but it was clear he had no idea about anxiety as he then asked, 'you're not really that anxious are you?'. Er, sorry but yes I am. I was so anxious before I started taking them that I was waking up sweating with fear. I've been on them daily for 4 years now and plan on continuing. I would try a different GP at your surgery who I hope will be more understanding.

I think most people think all cancer treatment has an endpoint and you're 'done'. For advanced cases like mine and yours, this isn't the case. I've tried explaining it to people but that just brings on comments such as 'but you look so well, you'd never know'.

@Fantasea yes, I will certainly try a different GP. My anxiety is off the scale right now; heart palpitations, stomach in knots kind of anxiety. I can barely drive at the moment; feels like I'm
going to crash. Menopause and this crap has caused this!

You are right, most folk think there is an end point for sure. It feels like they are avoiding contacting me because they don't know what to say!

@SierraSapphire

Thankyou for your reply. Was a bit shocked to be told that I needed to cut my hair 3 days before chemo starting as I hadn't heard about that before.

I feel guilty posting on this thread as I don't know anything about this stuff and can't help anyone else ( unless they are at the pre chemo stage. ).

@tothelefttotheleft what chemo are you having?