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

Thanks you for your support I had the all clear following CAPOX. I am still dealing with CML but the scary stuff has gone with CAPOX

Thank you @Nonamelass your advice is so good, and so calm! I love that you have people who have been on this horrible journey for decades and are still battling away and treating their cancer as a chronic condition. I hope I can get to this position too. I can't believe you have fought this disease on and off for 25 years. You are an absolute rockstar.

My sister had recently had her first regular mammogram and US and all was good and clear which was great news

@OhNoItsAdeno - sorry you are here, but come on in the water's warm Like the others I hope it's post operative complications for you and nobody is shoving anything anywhere anytime soon - fingers crossed.

@cantbelieveIamhere please stay away from ChatGPT for these questions. You are going through such a lot and you don't need the extra stress. When is your next chemo session? The scan results will be helpful for you and your doctors. I know they are few weeks away but please try and relax in the interim. We are with you

I think perhaps I'm being morbid, but I am working on the basis that I can't control my body but I can control this other, external stuff that I have been meaning to sort out for ages. I have even booked two weekends away in the UK for DH & I as something to look forward to in the Spring. And we're not staying in Travelodge's but nice little country B&Bs.

Oh no @KimonoQueen that's awful. Can you self refer elsewhere for a second opinion? Having the surgery delayed again must be heart-breaking.

I'm very glad to hear from you @cannaecookrisotto I'm sorry the EC floored you again. These recurrent colds and infections will, hopefully, wind down now. This winter has been a total bastard for colds and flu. Good for your mum though - she is wonderful. You are so far through this rubbish process now though so please take heart. Glad your hair is hanging in there

I'm glad you took some time off over Christmas @FcukBreastCancer . Well deserved. Are the 15 radio sessions daily? As I recall they map the whole area first and then the daily radio doesn't take too long (apart from the inconvenience). Make sure you have good cream and sun cream. From what I've heard, and as @Nonamelass says, the tamoxifen isn't too bad.

I had my appointment yesterday too @FcukBreastCancer and it was mental too. At my hospital it seemed to be the change of medical staff. Everyone was training or doubling up and things just took forever. I only had Zoledronc acid in chemo which is supposed to take about 30 minutes all in but took over 2 hours! That made me late for my oncologist appointment (luckily DH went down and explained). I then had to go to cardiology and get an ECG and missed pharmacy. I tried to take it easy and go with the flow but DH was tearing his hair out as he was supposed to be in a meeting. It had the good effect of me having the final doctor appointment of the day and so we had ages and could talk about the steroids and how to manage them longer term which was both helpful and interesting. Upshot is that I can take the steroids when I wish, I can go up through the dosage to 4mg per day and down to 1mg (half a tablet) if I am feeling good. I think steroids are just going to be a fact of my life now and I may as well just get used to them. I just wish I could sleep more than 3 hours per night though.

Pleased to hear that you are clear @littlebilliie - well done!

@Ventress glad you had some good news about the steroids and that you can decide whether to go up or down in dosage, it makes you feel like you are more in control. Good for you staying calm with all those appointments and running late.

Yes I should stay away from chat as hes not very encouraging at times I just ask him how things might be on cycle 4 etc and he always moves the goal posts. Notice I call him he, as if he was a she the anwers might suit me more.
Next chemo is number 4 and will be on 19th but I have a ct scan on 12th and then have to wait till the end of the month for the results of that.

We too have booked a break in the uk later in the year so we have something to look forward to, a family holiday with the dog, rest and relaxation.

Just need to get through some more grotty bits yet.
Am so amazed at all that we women are going through on here as well as juggling life and family and other stuff and am grateful for some positive stories too as mine is going to be like you, carry on with some treatment long term

Evening all! Feeling even more human today which is a plus!

Remember my friend who I told you all about before Christmas who got told she’s stage 4? Well. She informed the hospital that she’s seeking a second opinion, then randomly out of the blue she receives a phone call from the hospital saying they’ve re-looked at the CT scan and now found a pulmonary embolism and could she attend urgently so she can treat it. They then did a full body CT to check for further spread. They had her booked in to start Trodolvy (stage 4) yesterday. Then they cancelled her treatment yesterday and told her she had appt with the Oncologist instead…

They’d made a mistake!! She’s not actually stage 4, the “lung metastasis” had vanished off the second CT scan. It’s a fuck up of epic proportions. They’d taken her off active treatment!! So now they’re sending her straight to surgery because her lump feels like it’s growing again. It defies belief honestly. But she’s basically spent the last couple of weeks living in the belief that she’s bloody palliative!!! She’s mentally fucked with it all. I’ve said she needs to raise a PALS complaint when she’s up to it.

It’s a relief for sure, but holy shit!

@KimonoQueen
How frustrating that they’ve cancelled again!! I’m not surprised you are fed up :(

@NonamelassHow are you? What’s next on your treatment plan?

@cantbelieveIamhere
Ventress is right, try and steer clear of ChatGTP if you can, it pulls from all corners of the internet. When I use mine for work I tell it what sources to use so I know it’s verified information. And I swear mine only tells me what I want to hear!! So definitely sounds like a man 😂.

@FcukBreastCancer
Have they given you a date for CT yet? I’ve heard Aquaphor and MooGoo cream are good to help the skin during radio!

@littlebilliie
That’s really wonderful news, I’m so pleased for you! ❤️. Time to start rebuilding x

@Ventress
Lovely to hear your sister had her first regular Mammo come back clear, must be a huge relief. I hear of lots of women in some of the groups I’m in who are managing S4 as a long term condition too, some reach NED even! The treatments that are coming out thick and fast are truly amazing.
Some weekends away in the calendar sound fab, and you can’t beat a nice country B&B!
I’m hoping these bastard infections fuck off, I’m sick of sniffling everywhere and coughing. I’m fully addicted to steroid nasal spray now 😂.

@ForestFlowerFairy
How're you doing?

Hi all just a quickie
So they had that meeting thingy eith sll specialists yesterday and I hardly slept last night. I phoned this morning and secretary said they’ll be in touch with an appointment, apparently there are loads of people waiting for appointments after the committee thing so need to be patient. I get it I do there will be urgent and less urgent cases ( she didn’t say that, it’s me thinking that ) and there maybe young women who need appointments assp but I really want to see the surgeon(?) asap just so I/ we can move on a bit ( and that it doesn’t suddenly start getting nastier🤞🤞) . On the other hsnd I know they’ve looked at my stuff and this afternoon we got the petscan report report sent from them so it’s definitely been looked at. I nearly fainted at the sight of it but DH opened and read, says it’s very detailed and everything is fine except obviously the offending TIT. The radiologist had told me it all looked ok at first glance but well strangely I kept thinking something might jump out.

@cannaecookrisotto I am at the same time relieved and ecstatic for your friend but also gobsmacked. WTAF ??? They stopped her treatment??? I can’t believe they weren’t going to scan her again before they did that ???
.
@Ventress I’m not so calm all’the time 😉 but thankyou . If you’d have seen me first time round I was an absolute quivering wreck !! Too frightened to ask anything cos of what the answer might he . I’m glad your sister is having yearly mammo / ultrasounds. They have always been strict about me having them every year and although I could do without the yearly stress it’s saved my skin so far.

Sending best wishes ro everyone I’m off to yry and sleep 😴 xxxx

@Ventress You warm my soul ♥️. You are just so kind and encouraging:).

@Nonamelass Handholding and hugs that Petscan results will be coming quickly and they’re good. I’ve been putting off calling and making an appt. for the same because in my mind no news is good news 🙄. In any case I called, had to leave a voicemail and I’m waiting for a callback. Dr. says she’ll call with results. I think that I get results at the same time so it’s never a surprise. Cancer sucks. May this be the year its butt gets kicked.

@cannaecookrisotto - thats appalling for your friend. I cannot imagine the emotions she's gone through

I drafted a letter to PALS (with chatgpt assistance) and sent it on Weds which obviously concentrated some minds. I had a call yesterday from admissions saying they could offer me surgery today (with my original surgeon). So sat in admissions and waiting now!

Oh, my goodness @cannaecookrisotto what a complete cluster fuck for your friend. I am amazed that they could get this so wrong. I am so pleased that she is back on her treatment path. Has she been treated for the embolism? I'm obviously pleased that the stage 4 is off the table but the whole situation is absolutely appalling.

Your family holiday sounds great @cantbelieveIamhere It will be good for you to get away and breathe different air

Getting the petscan result and report is wonderful @Nonamelass I'm glad your husband reviewed it for you before you saw it. This is what husband's are for after all. Get that sleep - you deserve it! I'm so pleased for you that the BC is constrained to the offending tit

@KimonoQueen - good that your letter got such good and immediate results. Good luck for the surgery today!

Very good news for my sister. We are all so pleased that the result is normal and her recovery continues really well. She is a lovely person and really supporting me despite her own crappy cancer journey.

We will be here together @FcukBreastCancer, supporting each other through this. We are all awesome and quivering is not only allowed but embraced. We're not super people but we are bloody amazing ones

How are you doing @Sbmpp ? Hope you have had a good. calm and peaceful new year x

In non-cancer news DS got an offer from Durham today. I’m so pleased for him. It might be his first choice of university.

Hope you. All slept well. Have a good weekend everyone x

Yay !! Well done DS xx

@Ventress I’d have loved to have a sister. I wouldn’t exchange my DB but it would have been nice to have an extra sister sibling . It’s lovely that you have each other
@KimonoQueen Glad that things are moving quickly now, well done you for fighting your corner and good luck for the op
@ everyone have a nice weekend xxx

I chatted alot with Mr GPT but he’s very wishy washy isn’t he? Quite sweet at time but changes his mind alot probably according to how we ask the question😉 I think he’s pretty good at writing the basic letters we need though like @KimonoQueen did.

Mr ChatGPT is an oily one in my opinion. I’m not convinced he has our best interests at heart @cantbelieveIamhere

There are 5 years between my sister and I @Nonamelassso we weren’t the closest growing up but we got closer on our late twenties due to shared interests and have been close since. I’m very lucky to have her. We are your honorary siblings now 😊

our family is definitely getting smaller. My son just has two cousins and they just have him! My brother in law (sister’s husband ) has two siblings, neither with children, and DH has his sister who also has no children. Late BIL has a half sister with a toddler who I hope my SIL keeps in touch with. I remember having loads of cousins when I was little. Both my parents were the youngest of several siblings though. All rather different these days.

How are you feeling post surgery @KimonoQueen?

I am in “spring clean” mode today. DH looks slightly terrified 😂

Hi all. Sorry not been keeping up this week. Felt very tired and a bit coldy. Taken opportunity to rest and sleep.

Had scan yesterday for radiotherapy planning. Put the dots on me and gave rough schedule. Sooner than expected so 21st January 15 sessions. I am slapping on the moo goo and doing post Christmas detox.

@Ventress Worryingly perky tbh. Which probably means I'll forget I've had an op and overdo it!

I have massive norks and couldn't find a suitable front fastening sports bra. I took in 3 back fastening ones that I bought and still woke up in a hospital special. When the nurse fiddled with it to check my armpit and nipple she put it back stretched across the bottom of said norks rather than underneath. Was much more comfy once I got brave enough to carefully manoeuvre myself to where it should be.

Slept pretty well. And went out to town for a gentle potter with hospital bra, my sports bra over the top and a vest over the lot. I felt like a corseted Victorian - but very secure 😁

Now the wait for margins and node results I guess. 🤞

Hope you are still feeling perky @KimonoQueen. What’s next on your treatment plan?

I wonder if the bra issue is because they want the boobs constricted to prevent swelling? I didn’t have breast surgery so ignore me if I’m way off track. Did you have any lymph nodes removed? I have seen nice wrap bras. They fasten at the side of the waist and are a bit like tight wrap tops with plenty of thickness across the bust. Would something like that be useful?

I am day two of “operation spring clean”. DH is looking even more scared and we really need to take a trip to the tip 😂

I hope you are getting lots of rest and sleep plus lots of clear liquids to address the cold @FcukBreastCancer

Good that the radiotherapy will happen sooner rather than later. I’m pleased for you that it’s not hanging around.

Hi all,

@Nonamelass v kindly told me about this thread, and I wasn’t going to comment until I get more info from haematology tomorrow but it turns out the waiting game is so, so terrifying and I’m struggling to see any sort of positive slant here. I keep thinking I’ll go into the office and they’ll deliver some truly horrific news. I already know I have lymphoma, thanks to a slightly ham-fisted call from the GP last Wednesday. Just waiting to find out the flavour, I guess.

Whilst im v grateful these threads exist, I’m also quite sad and want to just send positive energy and good wishes to anyone going through the experience of cancer. Be it directly or if it’s happening to someone you love. It’s awful. The support and camaraderie is everything❤

edit 😊

Hi @Awhiya glad you found your way to rhis thread 😉 Aw this is absolutely a horrible horrible time when you are waiting for results and if your appointment is tomorrow I can imagine your anxiety levels this evening.Tomorrow you’ll be able to calmly talk it all through with the specialist. It will feel a little easier then especially once you have an idea of treatment plans. Deep breaths you’re nearly there, tomorrow will come quickly and that will be another step done. Sending you huge hugs and thinking of you for tomorrow xxx

Operation spring clean sounds good !! Have you made lots of trips to the tip?

Absolutely what @Nonamelasshas said @Awhiya. I’m sorry you are here with us but welcome. We are a friendly and supportive bunch.

All will go well today 🤞

I hope you managed to get some rest x

No trips to the tip yet, @Nonamelassbut the garage is looking quite full 😊

I’m ambitiously aiming for an “alcove” in my bedroom with a light, side table and easy chair for reading. So I need to get rid of the big chest of drawers which currently lurks in that space. I am getting there 😊

How are you? I hope everyone has had a reasonable weekend. I can’t believe how much more energy I have now that I’ve taken some time off work and am resting properly.