Cancer Support thread #78 - Newbies welcome

[MrsPnut]

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

@TopOfTheCliff so good to get your news, I was just thinking of you in the night! Sounds like you are happy with being discharged by your consultant, not feeling like you've been pushed off that cliff? Sailing sounds wonderful, and I have no doubt you'll be well on the way to Toppish fitness within a few months.

It must be great for your DM to have you there. Hope your DF is doing ok in hospital, do you think he'll be home any time soon?
@Babamamananarama uurgh all those injections plus PICC woes, anyone would moan. Actually I'm quite shocked by how many people have problems with the latter, when they're meant to make the treatment process easier.
It's another beautiful morning here, and our little garden shed is coming along (our builder, who is also a neighbour, is very unreliable time-wise so it's been very slow. I have modest hopes of it being finished this week). And seeds are germinating - sweet peas, morning glories, nasturtiums all waving at us now.

@FizzyOrange wonder if you are still conscious - hope not as I think the earlier things get going on surgery day, the better ((()))

Hi all,

I'm mainly lurking on the thread these days, but I can see lots of new ladies waiting for diagnosis/more details/treatment to start. So I just wanted to wish you all lots of luck and courage for the road ahead. You will get there!

I have (or had?) grade 2 ER/PR+ HER2- IDC with 5/13 cancerous lymph nodes. My active treatment ended in January, so it's endocrine (hormone) therapy and bisphosphonates (bone strengthening infusions) now. I wanted to share a little success: I've talked the practice nurse at my GP surgery into letting me administer my monthly Zoladex injections myself. It's a very big needle, so she thought I'd chicken out, but I've done two of them now under her supervision. From now on, I just have to get the Zoladex on a repeat prescription every month and I can inject it myself! This means that if I go on holiday, I can just take it with me. Freedom restored! (Once we are all allowed to travel again, obvs.) Highly recommend this approach to anyone else who hates the idea of monthly GP appointments...

Sending love to all!

Great to see your news @TopOfTheCliff and @KentishMama. Is good to see these updates.
I have same cancer as you had KentishMama, unsure on lymph nodes until they've done the surgery. How long did your active treatment last?

I also have the same type of cancer @Vinorosso74 and am awaiting surgery to find out what's going on with the lymph nodes. It's very worrying isn't it? I'm offering you a handhold anyway.

@KentishMama thank you for delurking and sharing your experiences as you had the same type and grade of cancer as me.

Fizz and Acinonyx2 Hope you are both back on the wards zonked out on morphine or similar Might be the best sleep you will have while you are in ! Just think about getting back to your own homes and beds
I have been home a month now and the week plus I spent in hospital has completely gone out of my mind,

@thereisonlyoneofme Thursday for me - so I'm washing and cleaning. Wow - a month though - seems like yesterday!

@KentishMama not just the freedom - not having the injections in a medical setting also changes the mindset.

@HauntedDishcloth I got very into stoicism: Aurelius, Seneca, Epictetus. But in the end I'm a bit pick and mix about it (as with all philosophies generally). My problem with stoicism is it's not just a matter of enduring suffering - you have to actively embrace it - and I have several problems with that But the modern day writer on this I Ryan Holiday - haven't read his books but watched his talks.

Also watched a few Darren Brown shoes - I'd forgotten about those. I like the ones where he recruits people and gets them to do bizarre stuff (like murder!).

not shoes

@Vinorosso74 Diagnosed on 07 August, surgery 17 August, dose dense chemo 21 September to 29 December, radiotherapy 04 to 22 January. That's about as fast as you can go, with minimal recovery time between treatment stages and having treatment privately. I believe there are usually quite a few weeks of recovery in-between ...
Also, my chemo was 4x bi-weekly EC followed by 4x bi-weekly Paclitaxel, i.e. the dose dense, accelerated regime.

I've also got ER/PR + HER2 - IDC but my lymph nodes were obviously involved when I was diagnosed. My lump was long and smooth so it had never felt like a "lump" it just felt like my breast. It was found on a CT scan after my vaginal cancer diagnosis and I only had the scan because vaginal cancer is a rare primary cancer.
Mine did shrink a bit on zoladex and anastrozole but because of the lymph node involvement I will be having chemo next.

@KentishMama that does sound good going. I'm at the mercy of the NHS so no doubt gaps will be longer. I hope I have no issues post op as that could delay the next step.
@ChickandLamb I agree it is worrying. My anxiety levels have certainly increased since my first visit to the hospital with a lump! Only two days until the lump (and existing breast) are gone. I hope things start moving for you soon.

Looking back, rushing through treatment wasn't necessarily a great idea. I was extremely exhausted by the end! But at the time, I just wanted to hit it as hard as I can as quickly as I can! Patience isn't my strong suit. Like, waiting for my hair to grow long again now is agony...

@MrsPnut what chemo are you going to do?

@KentishMama Don't know yet, not spoken to the oncologist and not sure whether I am going to go NHS or private for this bit. I need to get the pathology from the surgery and make some decisions.

I can be inpatient at times too. I've just spent two and a half years growing my hair to the length I want it (albeit with lots of split ends right now) and then it may fall out! I realise this is less serious than getting rid of any cancer.

I had long thick hair. Now the heavy chemo is done I examine my scalp every morning for signs of growth - NADA yet though.

@KentishMama it’s really great to hear you are doing well. And good to hear from you.

One of my neighbours has just seen me without any kind of head covering for the first time. I told her I cut all my hair off myself as the hairdressers were closed. I just couldn’t bear to start the C conversation, I don’t want them to know. They are good neighbours and all that but I just can’t. I am not ashamed of my cancer but I don’t want to shout it from the rooftops. At the same time I hate what I am doing because it is nothing to be ashamed of. Felt very emotional afterwards, when I got in. Argh!

Oh @balkanscot the same happened to me this morning! I stopped at the corner shop to pick up milk, and the very nice owner saw me for the first time in over six months. And she said, "oh wow, you have a totally different hair style! What made you cut it all off?" I didn't know what to say, so I explained I had cancer and lost it all. She was mortified and kept saying I'm too young. So I educated her. Next time, DH can get the milk!

I had long, thick, straight hair. Now I have very short frizzy curls. No idea what to do with them.

@KentishMama why do people even say you are too young as if it's some kind of comfort? I'm 28 and everyone I've told so far as had the same reaction. It's good to hear from people getting to the other side of all of this stuff. My children are very young (7 & 4) and I'm so worried about the treatment impacting on my ability to care for them and ability to enjoy them. I can't believe you sprinted through treatment so quickly!

@Vinorosso74 patience also not my strong point! They say the nodes long good on the scan but then also say they won't know until surgery. So do they look good or not? Waiting. Waiting. Waiting. My hair is very long too but full of split ends as it has been ignored all lock down.

I don't know why people comment on age. Yes, it is more common in older women but younger women still get it.
My lymph nodes looked clear on the ultrasound and MRI but we'll see after the surgery. I'm finding there is a lot of waiting!

Thank you all for your support and good luck messages today. I felt you all standing besides me! Going to the room to see the oncologist was a bit of a blur and I was sure I was going to start hyperventilating. He wouldn’t give me a stage but the very good news is that the Ct scan I had on Friday shows no sign of metastatic disease. I know given the extent of what I have already I am incredibly fortunate. So although I’m not out of the woods I am now cautiously optimistic. I now just want them to nuke me ASAP. It was only two weeks today I went for a check up wondering whether I was wasting their time...

Given my blood counts I will be having chemo weekly not 3 weekly. I am having Paclitaxel and carboplatin plus Phesgo. Home injections which I assume is for my cell counts? Still all a new language. Surgery after chemo and then either radio or more chemo depending on how I am.

Only things left to do are a kidney function test on Friday and then port fitting on Monday. I have fairly long hair and the onc suggested I cut it short before I start but I’m going to let the DD’s have a go.

I had to leave early this morning for my echo and mri. I glossed over the details with the girls. DD1 knew something was happening and was sick at school today - she has my anxiety streak!

@FizzyOrange - hope surgery went well and you’re in a drug induced state of bliss

@TopOfTheCliff - fantastic news re discharge and sailing sounds wonderful. I have missed going to the sea.

@ChickandLamb - although my DC’s are a little older than yours I can understand your worry.

@Acinonyx2 - hope the countdown to surgery is ok. It’s a big step but a good one.

Thank you and best wishes to you all again x

@JeanLannes Good news about the CT scan! Your chemo is quite different to mine but I think the injections are the filgrastim we were just chatting about above - they are to stimulate your white cell production, neutrophils especially. Cautiously optimistic sounds about right.

I also have a port - and very glad of it as the IVs etc mount up.

Hope the next steps go smoothly.

@JeanLannes great news re no mets and now you have a plan of attack it will lift you out of that horrible holding pattern
All the very best for beginning your treatment

@JeanLannes that is good news. I'm happy for you. And you must be feeling slightly calmer now there is a plan