Cancer Support Thread 84 - gently crunching our way into autumn

[mowly77]

New thread as old one about to be full. As those who have been around far longer than me have said: Welcome. Pull up a chair, help yourself to a biscuit, a large gin, or a detox tea. Or all three. This is a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc., vent, scream, or discuss life in general.

Please feel free to join for support if you are going through tests as well, hopefully they will come back all clear, but if not we are here to hold your hand through the journey.

Hi all

I've just been diagnosed with inflammatory breast cancer. I'm just wondering if anyone else has had this diagnosis and are doing well?

Looking for some positivity.

Thanks

Hi Alayna
I was recalled from a mammogram in September and diagnosed witha different breast cancer. It was such a shock - this happened to other people! I've since had a lumpectomy, put on letrozole and have five days of radiotherapy starting on Monday.
I know I'm one of the lucky ones, but there is so much that the medics can do now - hopefully someone will be along shortly with knowledge of your type of BC.
There are some great, inspirational and kind people on this thread, who are happy to share their knowledge and experiences - I hope it helps you.

Hi @Alayna12345 and welcome to the friendly thread nobody wants to join.
Do you know any more about your diagnosis? Have you had a biopsy? There will be lots more details about your cancer such as the Grade, and whether it is Estrogen positive or negative, and HER positive or negative. You may have more scans to look at whether it has spread, and all this information will be put together to make a treatment plan. I have had two breast cancers, one triple positive and one triple negative. Mine were both Invasive Ductal Carcinoma but not Inflammatory. Once you have a bit more information and a plan you should feel a bit better. Tell us a bit more if you feel you can.

I am home now after my visit to DM88 and enjoying the relatively good few days before my next chemotherapy. I am so yearning to get back to normality with some exercise and a social life!! Patience is not my strong suit.

Love to all
Top x

So I’m joining the thread that nobody wants to join.
post menopausal bleeding in July
hysterectomy in October
cancer diagnosis in November
CT scan yesterday
i have a gut feeling that all is not right
Ive been following this thread for several months, but hoping it wasn’t necessary x

Hello to the newbies, welcome.

Katie, what sort of gynae cancer do you have? There’s a fair few of us with ovarian, one with endometrial and some with vaginal/vulval. How are you doing? When do you get your CT results?

Hi, endometrial. Stage 1a, but I’ve been having bowel problems for some time so am nervous at what the ct scan will show

Hope the CT is all clear Katie Its always scary waiting for scan results. Hopefully the 1a means its caught early and has not spread. I think there are lots of causes of bowel issues and hopefully something benign. I remember my CT showed about 8 problems and some needed further tests but one by one they got dismissed.

Welcome Alayna Sorry to hear your BC diagnosis, I had 2 lobular breast cancers rather than inflammatory, there are lots of treatments available.

Thank you. It's inflammatory and Her2 positive. I'm pregnant so can't have ct scan but ultrasound showed liver clear and chest xray showed lungs clear. So far they just said it is treat to cure.

Thanks again.

Silkierabbit Thanks.

Sorry to hear that @Alayna12345 it must be extra hard being pregnant too. I didn't find Herceptin/Perjeta too bad it was the EC and T that go with them that are tough to take. They are miraculous drugs though.

I just had a meltdown and stormed out of a sports club committee meeting. One of the old guys had taken me off a mailing list and when I asked why he just sneered at me and said it was because I hadn't attended recently. The old git has no idea what it is like to have your life suddenly put on hold and be unable to take part in all the things you love. I was so furious with him and his insensitivity!

He knows perfectly well I am having cancer treatment and his wife has been very kind to me. Grrr! I feel better after a rant anyway.

Welcome to @KatieBenz sorry to find you here.

Best wishes to all
Top x

Hello new people, and sorry that you find yourself on here. Horrible. But it is a kind place to dip in and out of. And a lot changes. Treat to cure @Alayna12345 is really positive, and your scans, but I’m so sorry you’re going through this whilst pregnant was well, what a headfuck.

Thanks for everyone’s kind words about the Marsden I’m so fucking devastated as it was a ray of hope I didn’t even realise I had been holding on to.

I didn’t take in exactly why they are no longer accepting patients already in treatment elsewhere because I was shocked, the appointment I thought I was going to have had nowhere to go … but it is recent, & seems political and waiting-list related. So yes I can see that bunging in a load of people from all over the country is going to put them under even more pressure. But all hospitals are under pressure & I’m off my own trust’s statistics, I don’t really understand. And what does it all mean when the line of treatment I’m on fails & the next & my shitty hospital trust don’t have any alternates or trials? I am not straightforward and I am not curable & I already feel written off by own trust so it feels like no one is helping me.

But I have asked for written clarification from the prof’s secretary who is very good and efficient. I don’t ever give up easily but I don’t have any resilience left to fight anymore. Someone mentioned this phenomena on this thread ages ago and it’s so true. I’m in pieces and things are bleak and dark.

But well done for storming out of your committee meeting Top. Committees are troublesome aren’t they; I’m having issues with my allotment committee. Yes, it’s all the old boys who don’t understand why I’m not up there fucking growing sprouts grinning like a loon. Retired men on committees everywhere heed these words: We can’t grow our metaphorical sprouts when we’re having fucking cancer treatment.

Oh @mowly77 don't remind me about my allotment it's another source of pain. Last time I played the cancer card and lots of nice people rallied round and mowed and sawed and dug for me. I can't face telling them all over again so I am putting my head in the sand and hoping I can get it sorted between chemo and surgery. I am lucky it's not the growing season anyway. Except for metaphorical and real sprouts!
I am so sorry you are having trouble finding an oncologist who will advocate for you. Would Macmillan be able to advise you on possible treatments? Or Breast Cancer Now? If not maybe you could go to your MP for help? It is so hard to know where to find an ally. Sending love xx
Top

Ha Top I’m imagining all your allotment friends screeching “Not again!” as they lay down tools and march off your plot.

I too am hoping to magically sort my plot out soonish so it’s tidy and covered, at least until I can see how feeble I am next growing season. I have never managed to grow actual or metaphorical sprouts either! So now the weather is shit it’s a relief on the allotment front, frankly. A friend took on mine informally this last season ooh that was controversial, she’s been a bit slack on the strimming apparently. And hasn’t moved the old bits of shed. Tut tut. Yeah, I’ll get right on that.

And in cancer news @TopOfTheCliff thank you, all excellent suggestions. I have to call Nurse Useless now to sort out my admin & treatment for next month so will break the bad news to her that they ain’t getting rid of me just yet and see what she suggests. MP has been great and advocated for me before so I’m back in touch with her. x

Okay this may sound daft but does anyone feel a bit of a fraud? I look the same as usual if a little (a lot) larger due to prednisalone. I’m functioning at more or less the same level as always. The hospital keep telling me it’s small and no secondaries but it needs to go. I have no symptoms. I hate telling people because they must think it’s nonsense. Anyone else experiencing this?

I had absolutely no symptoms @Gilead felt a total fraud and in the middle of chemo, when I did NOT feel good kept thinking’ but I was fine, I have chosen to now feel like this’ . I was angry. I’ve (mostly) got over that now. Work is hard because apart from my very short hair , I present just the same. But I’m not. As said above, I have no reserves and the slightest thing makes me cry. I try to stay professional, but underneath am very shaky. On Wed I had a hospital appointment ( I’ve been left with some neuropathy in my feet) was sitting waiting, secretary came in said ‘ as you all know Prof blah blah not here today so there are delays’ I did not know, somehow missed off the phone list and started that stupid silent weeping and just couldn’t stop! It was nothing, stand in guy saw me about half an hour late, but it was a final feather, not even a full sized straw!
I feel I am annoying people as I am well, so should be over it by now.No one knows about the ongoing treatment for feet, the Letrozole, the bone infusions, because why should they? But it grinds me down.
Am so glad to off load on here (but sorry to always be here moaning, tho it does mean I can appear cheery in real life)
So thanks to everyone and@mowly77 hope efficient secretary comes up with the goods and well done @TopOfTheCliff for storming out. Hopefully made a few people stop and think a bit.Maybe. Probably not🙂
Love and light to us all as the weather works against us!

gilead I felt a total fraud. I had no symptoms either except some bloating, which as a woman doesn’t really seem like a symptom. I have been absolutely fine and normal through my journey except the 4 weeks post surgery and a week or so after each chemo. I went back to work full time midway through chemo and have coped no problems, I’m generally cheery and people think I’m very brave. Except they don’t see the regular absolute bleakness that overtakes me. The panics in the middle of the night. If I wear my wig people are always completely shocked when I mention cancer, you’d never know even now. I worry the fact I’m naturally cheerful and positive makes them think I’m lying.

I had my final chemo yesterday, so many people congratulated me but I can tell a lot of them think that means it’s done, cancer is gone and I’ve won. I don’t have the heard to tell them I still need a scan and then an ongoing unpleasant drug for many years to stave off an almost inevitable recurrence.

AgreatUserNameIts the same with me, people saying "you look really well" and assume its all done and dusted. Im a total mental wreck and looking at a recurrence. Ive been fairly lucky so far in that apart from a couple of hospital stays Im able to look after myself which is good as I have no one to help me. I dread the next phase wondering how I might cope and especially worried about my dog.

@thereisonlyoneofme I have heard good things about Borrow My Dog for dog walking etc. Otherwise would you qualify for any council/social help if you were to become unwell and less able while you’re in treatment? Hopefully it’s not a recurrence but a good idea to think of options that would help you maybe.

@mowly77 I'm really hoping the nurse can suggest something and hope your MP can help too. I hear you on the lack of resilience. The slightest setback, even a telephone appointment being very late, sends me into a weeping mess. I think we get so 'worn down' by being our own cancer secretaries, organising everything against such resistance when we are physically and mentally at our weakest. I too am incurable and will never be free of doctors and hospitals which is a very gloomy though.

@AGreatUsername my factory settings are cheerful and I put on a brave face in public so also wonder if people think I'm lying, or at best, milking it. I'm at two years since my formal diagnosis, nearly three since my troubles started, and most people are just over me having cancer.

@thereisonlyoneofme I often get 'oh but you look so well'. Most of the time I just thank them and move on but recently, I had been waiting for about 45 minutes to have my CT cannula removed and had been asked by the lady opposite me what was wrong with me. I'd just replied briefly that I had OC so needed a scan and she launched into a long speech, on and on, about all her medical problems and how she 'was 84 and had always feared the Big C but had got away with it so far' and I was just so irritated and upset. She then studied me closely and said 'you'd never know you have cancer, you look so well' and I snapped back 'it's not my face that's ill'. That stopped her in her tracks and luckily I was then called for my cannula. Regarding your dog, have you a local town FB page? There's a lady near me who will come over for walking and supervising dogs, I think she is £8 an hour, and another who accepts an additional dog for the day. I'm really hoping you can get something in place, such a worry for you on top of everything else Xxx.

I am just back from hygienist and they gave some positive news, apparently my gums are much better than an average chemo patients and have survived well. They said my teeth were surprisingly clean considering not been to hygienists for 10 years. Though I did wonder if she was just being nice rather than honest.

I did find it useful to go to dentist pre treatment (chemo especially) and get them checked and any work done and they all gave me extra strong fluoride toothpaste which helped a lot. Did have to go private as no NHS dentists here. During chemo I had ice lollies and these not only tasted nice but they may have protected teeth as the ice / cold means less chemo gets to mouth.

Fitness levels are getting back and swimming a mile most times I go now.

Mental health argh and eyesight and hair are still trashed as is brain. One bugbear of mine is Tamoxifen being prescribed every month so different brand each time and the 3.5 year wait for reconstruction, am ranting about those now. I have found a lovely chemist who is saving me my preferred brand.

Glad the dentist went well. Regarding your tamoxifen prescription, the wonderful pharmacist at our surgery called to discuss my Letrozole prescription, and actually wrote on it that it was to be the brand I preferred - having read what a number of existing Letrozole patients had said. So the pharmacy need to provide that - I make sure I have a good supply incase of problems. Although it sounds like your lovely chemist is on it!

Aaargh, just had a missed call from the hospital, I know its them as they are always withheld numbers. Freaking out a bit now as obviously cant call back as dont know which part of oncology it is. Going to worry all weekend now !

I know that feeling! They may call back. Do you have any contacts at all you can try? I've just called around various numbers before, or try the general booking number maybe.