Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

Hi @livingwith and sorry to hear you are stage 4. A couple of years ago we set up two new threads, one called the Great Recovery which helps those finishing active treatment to adjust to Life After and a Stage 4 thread for those who wanted to have a safe space to rant about their feelings and future without frightening the folks going through primary cancer treatment on here. Both are active and welcoming, and you can post on as many threads as you want.

https://www.mumsnet.com/talk/life_limiting_illness/5361108-thread-6-living-with-incurable-cancer-taking-all-the-drugs-and-remembering-our-fallen-comrades?page=17&reply=149841159

I went to town on my comfy space during chemotherapy. I took over a small bedroom with a bed and a smart TV my DS bought me and used it when I was wide awake on steroids and doing mad internet shopping sprees at 2am, as well as lurking there watching Hallmark movies and groaning. Afterwards the room made me feel sick just going in there, so I completely redecorated it and bought a sofa and now it is my private space for watching Traitors and everything DH isn't interested in. Interestingly after all the ginger tea and stem ginger I took during chemo I can't stand the taste now, so watch out that you don't accidentally put yourself off things you associate with this time of treatment.

Happy New Year to all. I am coming up for my 5 year follow up for BC1 and 3 years for BC2. If this is clear I am going to celebrate!

Thank you @ventressfor your reply, gosh only since September I'm not surprised you could still be in shock, and I don't think forward planning is morbid, it can be a way to gain some peace of mind. Yes I have 3 adult children and my youngest was 16 at time of stage 4 diagnosis. I wish you well, and will continue on the suggested stage 4 thread.

@cantbelieveIamheremy immunotherapy is every 4 weeks, via an infusion like chemo. Yes it seems to be very effective for many of us, I'm very grateful.

@TopOfTheCliff thanks for pointer to stage 4 thread, I'll go over there. Your cosy room space sounds lovely. Wish you all the best.

Oh goodness @TopOfTheCliff i didn’t realise there were other threads. Apologies. I have bookmarked them now.

I totally understand what you mean about association! I am going to try and keep the new comfy space completely separate.

Great news on the impending 5 year for bc1 and 3 years for bc2. Certainly milestones worth celebrating 😊

I don’t think it’s the Letrolzole @cantbelieveIamhere, I think I just overdid it yesterday and the ache is almost gone now. Yes, they are trying to tie in the Zoledronic acid infusion with the ribocyclib cycle. It means that the Zoledronic acid will be a week or so later but nobody seems to think that’s a problem.

I think you should ask questions if this will help calm your mind. I suspect that the answers won’t actually be as bad as you fear. Have you tried using the MacMillan counselling service? I haven’t plucked up the courage yet but I will, one day.

Hey all!
Been a bloody busy week in house Risotto, trying to keep up with this baby is a full time job on top of everything else 😬. Luckily feeling ok this week, next EC is on Weds next week so the cycle will start all over again, the dread is real!
My hair is clinging on. It’s thinned a lot but it will do for now, if it’s starts a second shed then I’ll have to do the necessary and 🪒.

My 9 year old seems to be having some anxieties, like she’s worried about people breaking into the house and seems to worry about unusual things. I’m going to have a catch up with her teacher and consider if she might need some professional help for some gentle guidance through this period.

I’ll try and start a new thread tomorrow on my laptop and link it to this one so we don’t lose each other 🤗. I don’t know how to do links on phone!

waving to all, and to the newcomers, welcome. I’m so sorry you’re here but glad you found us xx

Happy Wednesday to all 🥰. @Ventress My chemo treatment is palliative because it’s considered incurable so my chemo and targeted therapy are being given to hold off the cancer I guess as long as the drugs don’t kill me first 😵‍💫? From what I’ve noticed most people have a predetermined number of rounds (or cycles?) of therapy then they ring the bell? Although I’m stage 2/3 esophageal cancer is incurable. I just heard from the doctor and my every other week taxol and TT will continue on. Unless the dreaded PetScan shows Mets. I’m still waiting on that. @livingwith I’m thrilled to hear how well you’re doing so well on immunotherapy. I unfortunately had a horrible reaction to keytruda and ended up in the hospital for 2 weeks. Life threatening low potassium. When it finally came up to barely normal they kicked me out 😝. My oncologist said I would no longer be able to have any of them. I was having continuous vomiting/diarrhea and was taking lomitil & zofran etc to stop it. O fun. Good thing I don’t have a transplanted organ, yeah? @cantbelieveIamhere I don’t ask questions either. My dad died of this cancer and it was just a month after his diagnosis 😪. My faith is strong and I know where he is so that helps but boy do I miss him. He loved old westerns (good ol John Wayne♥️) and my husband and I watch them all. @TopOfTheCliff Last week I watched the stage 4 thread and another on life limiting thread and decided I was not ready for that. @cannaecookrisotto Good luck with the next EC. I hope your hair hangs on. Hope your daughter will find some peace. Mine (3) are in their 30’s and were very angry in the beginning. They have showered me with warming blankets, crossword puzzles to do while in the hospital, lotion, chapstick etc. Actually the thought just came to me that I should shower my family with a few gifts to thank them. As a child I was very OCD and I would get up after everyone was asleep to check the doors were locked and the stove burners were off! Boy I could have used a therapist but it wasn’t a thing then. I think it’s wonderful you have support from school. I am fascinated by the UK (always wanted to go there) and love some of the things I have found out from MN. I used to read the Guardian but gave it up 🤷🏻‍♀️.
Happy days to you all. I’m off to watch QVC (love the food stuff!) and a good John Wayne movie.

@Ventress I think you have done wonderfully since only September to get through all of that . It’s a big adjustment to make and what an awful awful shock. I know we’ve got no choice but blimey that’s so strong of you.. I’m in admiration

@Sbmpp just stay here with us if don’t fancy the other one 😉 xx good luck with the oh so dreaded petscan.

@livingwith immunotherapy seems to be a wonder drug. I’m so happy it’s working for you .

.The biggest cancer/ research centre here in France (IGR) has publicly announced its goal as 80 percent of cancers cured by 2040 . There is so much hope out there. All these wonderful researchers working together worldwide to save people 💕.

@cannaecookrisotto I really really wish I’d taken my kids to therapy. No one mentioned it back rhen and I can’t believe we didn’t think of it. We protected them as much as we could as you do and they’ve turned out lovely but i really really wish we had. Especially as mine are boys …thankfully chatty men but still they don’t confide until you catch them at the right time . Good luck with your next ec.

best wishes to everyone xx

Ps @Sbmpp I used to read the Guardian alot too I don’t so much now but do listen to alot of UK radio .
@Ventress I’ve got a list of questions in my head for the surgeon,will write them down. This mastectomy business is new stuff for me Îve been used to lumpectomies 😉 Wavering a bit on the no reconstruction wondering if I really will be ok long term (🤞) with completely flat. But don’t want a huge operation and lots if tooing and froing with potential complications and adjustments I’ll see what the lady surgeon says. She did my op in 2017 and did a great job.

@Nonamelass my mil was encouraged to have a mastectomy. She refused and asked the surgeon “how would you like it if your d* was chopped off” (there might be a bit of a paraphrasing here”). She opted for chemo but died several years later. She did love her grandchildren.

Your mil sounds feisty @Sbmpp😊 my grandmother was like that. I still miss her a lot, particularly now as she had COPD and awful asthma which didn’t respond to modern therapy. I think we could really have bonded again with our shite lungs 😂

Im glad glad you have a good list. Who do you have to talk about the reconstruction? Is there MacMillan equivalent? My sister had a full mastectomy with all of the lymph nodes stripped and no reconstructive surgery. I won’t pretend that it was easy but she is happy with her decision. She has just spent a small fortune on bras and swimming suits for her new shape! You can have the reconstruction later if you would like. Don’t let them persuade you if you don’t want it done at the same time.

I do hope your meeting goes well 🤞

i understand what they mean by palliative now, thanks. I guess mine is palliative too. It does feel as though it’s doing me good though. I hope yours does too.

thank you @Nonamelass. I also am not sure I’m ready for the next thread. I like you guys 😊 so I hope it’s okay to stay. Plus I want to see you all get past your treatment and get back to your new normal. 80% by 2040 is incredible! Your family sound lovely 😊

I agree that therapy for you daughter would be a good idea @cannaecookrisotto her concerns seem to be around safety and security, which seems perfectly normal to me. DS has has a few wobbles but more in the “teenage boy” vein of lashing out, throwing a table in the common room (not at anyone). I have said he is welcome to use the counselling service that AXA have and have given him the number. He’s 10 years older than your DD though so can manage this stuff independently. I would definitely speak to the school about how she has been these past months. They are great at understanding how our kids tick.

Talking about westerns - I used to watch old black and white John Wayne, James Stewart, type movies with my grandparents. Their dogs were always really confused by the horses. They would go off one side of the screen and the dogs would follow them and then look confused that the horses didn’t appear in the corner of the room 😂 It was what always convinced me that dogs can see in 3 dimensions.

I’m off to the sales with my mother today - wish me luck!

@Ventress yes please don’t leave us !!
I am not sure that Dr’s actually really talk in stages nowdays ? They’ve never mentioned them to me. Then again Îve never asked. I can work it out myself from dr google but that’s not really up to date. I think it’s more the type of cancer you have and treatment options these days. and living with an illness even if they can’t completely cure it.BTW I spoke to my friend this weekend and she is still doing brilliantly.
Good luck in the sales you warrior 😅
Back to work see you all later xxxx

@cannaecookrisotto good to see you back, we have missed you.
Glad to hear your hair is clinging on, I have a nice bald patch on top but the rest is clinging on too and now a little cap to cover it for cold capping so I continue on next week too. We will both be missing in action together next week as mine is Monday.
Bless your daughter hope her anxiety can be helped, who knows what goes on in their heads. My sons are hiding most of the worry but my eldest has really sore hands from using hand gel all the time at work as he is worried about bringing home germs to me and I know my youngest son has concerns about that too they are just focusing on the bit that they can do to help.
Good luck with next weeks session.

Haha your grandmother 😅 @Sbmpp
Sadly I think I haven’t really got a choice as both terrible tits have already had radiotherapy and in the reoffending one I had brachytherapy too and with BC you can’t usually have radio twice so it’s defo a mastectomy !! It’s just whether I bother with reconstruction
@Ventress I don’t think there’s a Macmillan equivalent here though there are charities.I ‘Ve got an appointment with the nurse before so will ask then. Did your sis have a double mastectomy ? You’re right I can always have a reconstruction .

@Sbmppyes, I heard that about 50% of people have a positive response to immuno and there are many who have such bad side effects that they can't have it. I did have strong reactions at the beginning but luckily it settled down. With melanoma (my type) there is literally nothing else, no chemo. This is why melanoma has been so deadly in the past but now, some of us are able to survive for a while. My side effects are fatigue, a non working thyroid (replaceable by tablets), itchy skin. Very manageable especially as I am not working any more except occasional self employed or voluntary work. I am very grateful.

@Ventress no Macmillan here unfortunately it sounds like such a positive org. Also I have esophageal cancer and my type of cancer is treated with taxol which is how I think I came to follow this thread. Thanks for your kind comments. I love the story about the dogs 😝
@Nonamelass i was told only once with radiation therapy also. . It was truly horrendous managing the SE of that. I finally called the dr. and was given something that I don’t remember. I was not forewarned which I think made it worse. I couldn’t even swallow saliva. Even so the pain med was not liquid. Seriously doc 🤬?
I have an appt. with PetScan but unfortunately I have to wait 2-3 business days for them to call me and it’s out of network from my HMO. What I just realized is that I won’t be getting my results on my iPad like I usually do. So talk about scanxiety. It will be a long time coming this time around 😳😢.

Hi all, sorry I've been absent for so long. Busy sorting out being able to step away from the business for a while and getting my finances sorted, with which the CAB have been really, really helpful and it looks like I’ll be ok for at least 6 months, which is great.

Second of my 2 day chemo sessions today and I have true chemo brain so this might be short but I’ll pop back in the next few days for a proper catchup.

Just to say that the chemo was a lot easier than I thought it would be in terms of the actual procedure. Both nights when I’ve got home my temp has spiked slightly and I’ve felt that ‘pre-bug’ sort of ache and exhaustion. But when I woke up this morning I felt ah-mazing! Better than I have in months. It may just be the steroids, which i’m only getting during infusion, but my god it was great to feel good, even if just for a couple of hours!

@Nonamelass great that you have all your appointment dates. I know the idea of surgery must be anxiety inducing, but I’m glad you have a path forward.

@Sbmpp Not sure how it works in the US but the nurses that support the consultant here in the UK have been really great at answering any between appointment questions, and anything they dont know they’ve gona away and found out about for me and come back…is that an option for you?

@Awhiya So sorry you’ve had to join the thread, but glad for you that its here…its a real help. I have NH-Lymphoma too, I’m fairly early on in the process as only had first chemo/immunotherapy this week, but if you have any questions of fancy a chat please do PM me if you like.

@Ventress I’m with you on controlling the things that I can. Getting finances etc in order at least makes me feel like I’m steering something. Which does help

I’m with all the other readers..having not read for ages I’m getting through 2/3 books a week like I used to in my uni days (a long time ago now) a good mix of fiction and non. For whoever said they were reading books that might be cinsidered morbid, have you read ‘It’s not like that, actually’ by Kate Carr? Its about her experience of breast cancer and I found her frankness and approach really comforting to read.

I’m sorry I’ve missed you out @cannaecookrisotto @ForestFlowerFairy and any others. I’ve just hit knackered. But I do think of all of you often and am rooting for you all. X

It’s good to hear from you @Inthebasementand particularly good to hear that you’ve managed to sort out your finances and that you are feeling amazing today! Long may that last 😊

I often felt fantastic the day/morning after chemo. I think it’s the mix of steroids and anti-histamines. But use the feeling and be well and positive. I would get my washing done 😂

We should have a book club! I now have “wintering” and “it’s not like that, actually” on my list. I am trying to read something other than my usual mystery/police procedural type 99p kindle novels. Once I have my alcove (tomorrow) I plan to sort through my book pile and put it in some reading order.

Hopefully the results will come through, if not on your iPad, then electronically @SbmppGood luck with the scan. I’m glad you don’t have to wait too long.

I watched a fab documentary once about how we Brits have horror movies and Americans have westerns as our sort of cultural touchstone. Both have lots of dross in amongst the good stuff. You have turn a lot of ham actors over to find a Gregory Peck.

I am glad you have had the positive response to the immunotherapy @livingwith.

my sister had the single mastectomy @Nonamelass. I know yours is different and will impact you differently. The flat chest has really helped her though. She know that the bc won’t be back in that breast. She does find it rather lopsided too, which is hard as she’s a tall, powerfully built person. She did say that a cross body bag is easier to manage now 😊

They definitely don’t talk in stages do they? Back in the autumn I was both desperate and terrified to have a number put on my prognosis. I was certainly in denial.

I hope you have managed to speak to your eldests school @cannaecookrisotto. Bless her, it must so be confusing for her.

Best of luck to you and @cannaecookrisotto@cantbelieveIamherefor Monday . I do hope it goes well for you both. Please go easy on yourselves. You need to rest. If anything has made this clear to me, it’s this time off work I’m taking now. It is so noticeable how much more “myself” I am than I was when I was doing chemo and powering through. You are, and are not, superwoman 🌟

I am off to the hospital this morning. I have about 10 appointments over the next week and I’m very confused about what they are all for. DH is going to sort out my diary for me. Thank goodness someone is!

@Ventress thanks for good wishes, hope you get through all your appointments - sounds like a lot!
BCN has taken my issues re the dodgy van scan and will be reporting back to the radiology team. Shes going to make a note that I am not going to appointments there again.
I am trying to catch up on chores as I know next week I wont be up to much.

You are right we need to rest more and read more! I am in the middle of Michael Palins diaries There and Back and have just finished Venezula.
But I love the Mick Herron books and have read them all bar the latest one which I have but am saving ....have worked out next chemo on Monday means I am 66% done.

Have a lovely weekend everyone the sun is shining here so washing to go outside.

Hi everyone, just wanted to post a quick update, and also say thank you for all the welcomes and well-wishes from everyone. You're such a great bunch. I have been trying to keep up with the posts but I've been a bit all over the place since the diagnosis on Monday. My moods change hour to hour, it's ridiculous. We've also been trying to wean the baby onto bottles and it's not been going well, so my husband has had to take the kids to his parents'. Fairly heartbreaking, and I woke up today with a few dark thoughts about the whole situation. Still v much at the anger/denial stage. When I wake up I forget for a split second, and then it all comes back. I want my happy, cosy home with my family back.

PET scan was pretty uneventful, Im guessing it'll be in time for their MDT meeting today. Hope so. Then onwards with the chemotherapy. One glimmer of hope was that my CT scans were clear over the rest of my body, it's just the lymph node in my neck that I felt initially, then one smaller one below it. So it looks hopeful.

I'm sorry I'm not much chat or help at the moment, as I said my brain's a bit off. But I do like reading about your days and the treatment discussions. Reminds me there's a way forward, and that life trundles on through it all. So thanks, again.

Waving goodbye to thread 97 soon then.

Hope everyone is ok.
@cannaecookrisotto sorry to hear about your daughter's worries. My 9yo keeps asking about my radiotherapy start date over and over. Bless her.

I'm still on a restful period until radiotherapy next week. Heading into cinema now to see marty supreme which has great reviews. Saw hamnet on weds. I find i dont pay attention at home, so cinema helps with that.

See you on thread 98. I'll link now if I find it

https://www.mumsnet.com/talk/cancer/5476592-cancer-support-thread-98-support-for-those-diagnosed-and-going-through-treatment

I've created the thread as this one very nearly full.
See you there

Thanks @FcukBreastCanceri hadn’t even realised this one was almost full,

see everyone on the new thread 😊