Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

Hi, I'm 46 years old with a 13 and an 11 year old. Recently separated from their Dad and strangely (or maybe not), we've communicated better in the past 3 months than we have in the past 5 years.
I have stage 3c1/2 (some debate about this) cervical cancer. I have just finished week one of daily radio and x1 chemo, 4 more weeks to go then a week off before the brachy.
@EachandEveryone I can really relate to you saying that you feel like it is happening to someone else. I'm also an HCP and it is strange being the patient rather than treating the patient. Familiar but completely foreign.
I am not great at asking for help or expressing my feelings but have accepted that has to change and feel a bit like i'm completely blown open!
@TopOfTheCliff I've just read your last post on the old thread and had a laugh. What's the point of having a new hip if you're not going to see what you can do with it?!
I like to keep pretty active and went to parkrun yesterday- I deliberately went a bit slower than normal (as don't want to bury myself in week one) but couldn't help myself and had to overtake a few people in the last 1/2 mile!

@Catunderling I was stage 4 at diagnosis in 2020 .My oncologist didn't give me an actual time span,he was very clear about my prognosis and that it will be life limiting. He said that with treatment I had a good chance of seeing my son grow up, I haven't had the courage to ask him at what age he considers a child grown up. He told me that it was my right to refuse treatment but if I did he would consider me a fool'. Which made me laugh and like him immediately.
At my last consultation we had a discussion about future treatment and I told him that 'I knew where this disease would take me' to which he just nodded his head. He always ends each treatment cycle with 'go live your life' and last time we talked his advice was not to worry to much about leaving a inheritance for my son but to concentrate on spending time with him(making memories hate the term but I can't think of another way to put it).
Although my blood work is showing that we aren't where we like to be I'm well and he has said the way forward at present is 'to treat the patient not the cancer' I have got a scan booked to determine next steps.
I try to concentrate on living with the cancer and have adopted the mantra keep going to you absolutely can't. That doesn't mean that I don't have days when I'm absolutely raging at the unfairness of this bastard disease,riddled with doubt,guilt and misery. That's when this thread proves invaluable because you can rant or cry with people who get it.
@Topofthecliff @Yorkshiregold I love Park Run its been a big part of my life since diagnosis. I reached a milestone recently (25) I really want to beat my PB this year. My friend and I want to do some park run tourism this year.
Happy Sunday everyone,at the moment there is a strange glowing orb in the sky hopefully it will keep the rain at bay x

Thanks for the new thread. I mostly just lurk on these threads but I suspect I will be a bit more active in the coming week.

Age 48. Bowel cancer. Had three months of chemotherapy from late 2023 up till a few weeks ago. Haven't lost all my hair but it's quite thin and I lose another handful every hair wash.

Surgery to remove tiumor in a few days time and I am mostly trying not to think about it because when I do I get terrified. Am supposed to be in hosp for 4 days so not much to do except browse mumsnet.

14yo DC with autism not coping at all with ne being ill. Lots of anxiety, insomnia and school refusal due to the stress.

@HohiyiKozbevi what date are you going in? We can keep you company and bring you virtual cups of tea. NHS tea is a bit dodgy.

Lovely new thread.. Thankyou @LemonDrizzle10 😊

I'm 52, live in Cheshire ( originally from Buckinghamshire) 2 DC, nearly 16 and 19 ( at university).

First diagnosed with stage 2 BC in 2009. Mastectomy/ lymph node removal/ chemo and tamoxifen for 5 years. Reconstruction 3 times ( first two failed miserably! ).

Fast forward and I enjoy 14 blissful years of good heath.. then bang.. severe pelvic pain and bleeding last summer. Diagnosed with a " fibroid"

Said "fibroid " causing me intense bother and time off work. Following an MRI in September 23, F looks "suspicious" and there is fluid on my left lung. Fast forward to October 23, the fluid is aspirated. November 23, it tests positive for metastatic breast cancer. 4 days later, total abdominal hysterectomy.

December 23, histology reveals aggressive sarcoma was growing in the uterus wall and not a fibroid. All reproductive organs, covered in MBC.

Final diagnosis; MBC in lung and omentum ( lining of abdominal wall)

Now on ribociclib and letrozole.

Wish this wasn't happening, but hey ho, what can you do?

Re: the eyebrows. I'm pretty sure I went to one of these " Look good, feel better" sessions and they were giving out free make up. My brows didn't disappear altogether, so I used to add a bit of brow colour from the pallet.

It's great to have this space to chat and rant. As starting to turn into a bit of a lemon ( all bitter and twisted!)

@HohiyiKozbevi yes do let us know when you are going into hospital. We will be rooting for you and be on stand by with snacks and drinks 😊

@Enigma52 I am so sorry to hear your fuller story. No wonder you are raging at the unfairness of it all. It is unfair how many of us have had two cancers when most don’t even get to enjoy it once.
At the end of the last thread I was waiting grumpily for an overdue DH to come home from his fun day out. He got back covered in mud with an extraordinary story of near death! He was cycling up a country lane with at that point a wide muddy verge. A car came up fast and instead of passing him went deliberately up on the verge inside him, skidded throwing mud and stones over him and his friend, lost control veering across in front of them onto the opposite verge, then straightened to avoid an oncoming car and sped away. He was quite shaken and they all had to retreat to the pub for a couple of hours to recover. It reminds me that nothing in life is certain and the odds on either of us reaching 80 are pretty slim!

Crap weather here. Coffee and cake seem like the highlight of the morning.

Im Herbal, 46 yo and living with de novo Stage IV MBC since late 2019. Currently in the depths of 9 months of total hell of failed treatments, an increasing inability to walk due to a mess of a hip, and a lot of pain which is sometimes managed, but mostly not. I keep hoping to start improving and seeing the light at the end of the tunnel, but it seems like every time I turn around lately there is another drug I have to take due to an unexpected reaction to a different drug, or pain management, or something else yet nothing improves. Feeling pretty tired of it all at this point, honestly, and I just want to hermit at home and not have to interact with more medical people or appointments.

@TopOfTheCliff whoa, that was an exciting conclusion to the story I hadn't expected! Why do some drivers have to be such jerks, especially on those narrow lanes? Unfortunately that seems to be a universal thing, in the US I experienced similar only with jerks with large trucks trying to run the cycling club off the road for a joke, but on mountain roads with steep drops.

Hi everyone and thank you for this great thread (and previous ones). Ive been lurking for a while. I'm 56, 3 cats, live with boyfriend. Husband died by suicide four years ago.

Diagnosed with stage 1 BC in early February. Discovered in routine mammogram. Booked for surgery on Thursday 😱Im having WLE + mammoplasty + symmetry surgery to other breast. Then all being well, radio then hormone blocking meds.

Like some PPs have said, I don't feel like this is actually happening to me. But I'm really annoyed because a work contract is ending in March and I planned to have a nice holiday. Now Im going to be having treatment instead. Fucksake!

However I do feel exceptionally fortunate that its been found early and that my treatment path has been so quick. I really havent anything to complain about!

I'm being treated at Barts, has been very good care so far.

Welcome @HellonHeels and don’t feel you can’t complain just because it’s going smoothly so far. Getting cancer is a major shock and derails your life without warning. That alone is reason to have a good rant! Good luck this week.

Thanks @TopOfTheCliff!

How is your DH after his nasty experience? I used to cycle a lot and the behaviour of other road users could be appalling, but this is the worst I've heard.

@TopOfTheCliff yes I'm often raging. Im hoping acceptance will follow soon. But right now because I'm
coughing lots and getting breathless, I'm just bloody fed to. Tomorrow, I will ring the hospital hotline to see about draining this fluid at least.

Gosh that sounded a particularly scary story with your DH! Bet that shook him up a bit??

It sounds like something which could happen round here to be honest. There have been many incidents involving tractors, cyclists and horses on the narrow windy roads!

It's not bad here weather wise, the sun is kind of out at least.

Just trying to figure out what to do about work. I'm signed off for one week only now. I can't see myself managing 5 days a week, or even getting up on time to get ti work. If they can drain the fluid, I'm hoping to feel more comfortable at least.

Back on the ribociclib tomorrow... yuk 🙈

Just realised I've typed " at least" three times! Apologies!

@Enigma52 I am amazed you are trying to carry on working during treatment. I got signed off the day of diagnosis and haven’t worked since. Have you looked into the economics of stopping work? Or do you love it and want to keep going? I’m always amazed at people who do that but for some it seems the right option.

DH is pretty bomb proof. He has been cycling for 50 years round here and often comes home enraged at another murder attempt. I always say a loving goodbye to him when he heads out in case I don’t see him again. It mildly amuses me that I have spent so much time and effort trying not to let the cancer kill me but one of us could be wiped out in an instant on a bike. His old boss didn’t expect him to make 30 let alone 60! (He is an electrical engineer who is a bit accident prone too😂)

@Enigma52 You and I are on the same Ribociclib schedule - I'm off to hospital to collect meds and have Denosumab injection tomorrow, though will start the meds on Tuesday. Fingers crossed this cycle is easier on you. I'm hoping I don't have a bad reaction to my second cycle like you did.

I'm also amazed you're still working. Can you not get signed off for longer? I've got a conversation with my boss this week about a phased return to work, but I'll be suggesting short hours for only a few days to see how I get on, and I can't imagine ever getting back to full time work. The meds just make me too tired, I have so many medical appointments to fit in, and I feel I need to give myself time and space to focus on doing the right thing for me, usually yoga and cake.

@TopOfTheCliff sounds like your DH is indeed bomb proof! Seriously though, some pretty scary things happen round here too. We have lots of horse riders and many a time, I've witnessed various legs ( animal and human) flying up and down near my car!

Glad he was able to retreat to the pub following that ordeal!

@SewingBees yes we are indeed on the same regime. What is the Denosumab injection for?
I am sure the cycle will go well for you.

Honestly I don't know why number 2 was so horrible, but I'm praying cycle 3 is kinder! I also feel tired on the meds and I think it is the letrozole which is causing joint aches ( maybe?)

Good luck with work discussions also. I hope you can negotiate something reasonable which works for you. As you say, medical appointments can soon stack up!

Re: work. I've been off since November, following my hysterectomy. The plan was to return at the beginning of February ( this was prior to the SBC diagnosis)

I spoke to the business manager before half term ( I work in a school) and she's arranging an OH meeting.
But I feel so grim right now, that i may just ask my GP to sign me off for another month. Then I will be down to one month left of full pay. The BCN mentioned claiming PIP, so I've requested a form. A benefits advisor from Maggies, has agreed to support me with my claim, so will see what happens with that.

@Enigma52 The Denosumab strengthens the bones to prevent further bone mets, but comes with its own list of side effects.

I'm also getting help from Maggie's with my PIP claim, I'm also going to ask my new oncologist when I see him in March if he considers me eligible for an SR1 form, which means you immediately qualify for max PIP and no need to fill in forms. Might be worth you asking too?

@SewingBees just seen on the other thread, that you were planning on completing your PIP form also? If you can seek out a CAB or MacMillan advisor who could do it for you, that would take the stress of it away? I've just looked at the descriptors and not feeling that confident myself!

@SewingBees ah I see . Gosh these side effects are the gift which keep on giving, aren't they? Really hope you get a decent forthcoming ribo cycle.

Glad you are getting help from Maggies; not sure about the SR1 form, but worth as ask I guess.

In my oncologists follow up letter of my first appointment he said that he'd told me what my risk of dying was. It was stated as a percentage. We did not have that conversation.

Hi. I am 65 and retired and I was diagnosed with breast cancer in October last year after finding a suspicious lump on left breast.
Had chemotherapy every 3 weeks for 4 sessions and am now on weekly chemo for 12 sessions.
Seeing the surgeon in April for lumpectomy chat, then mri and radiotherapy to follow.
Have lost all my hair( look like Uncle Fester) but at least I have a decent wig!
Couple of questions, how do you put on fake eyelashes when you can't see without glasses?
Also is it better to have a mastectomy or a lumpectomy?
I spend a lot of time worrying at night as I don't want to burden my adult children with my fears for the future.
Determined to be around for as long as possible especially as 1st grandchild is due in April.
Thank God for this thread.

Goodness me, I hope it was a good prognosis but what an error to make.

Thanks for all other comments xxx

Did you do ec and then paclitaxel and carboplatin weekly?

Yes. It usually takes 4 hours.