Cancer Support Thread #80 Newbies Welcome

[HumphreysCorner]

Welcome everyone old and new. Feel free to post a quick update to help new and old follow.

HC x

@Littlestelephant. Your tumour sounds very similar to mine - 1.5cm, hormone +ve and HER -ve. My lovely consultant told me that it is one of the most "straightforward" to treat. I was Stage 2 but they decided after surgery that it was Grade 3 (note the difference between stage and grade here). There was no node involvement. They automatically sent it off for oncotype testing which gives them a % chance of recurrence with and without chemotherapy. I believe this is done routinely in our hospital trust for this type of cancer. Another anxious wait for results and then I was told that I did not need chemotherapy so I just had two weeks of daily radiotherapy which was relatively manageable. I am older (post-menopause), so this was probably also a factor.

Just popping in to say hello, am away from home with no WiFi so can't respond to individuals properly. But I note that @backformore got great scan results, hurrah! And @HumphreysCorner lovely to see your smiling face, with your friend - how fantastic that she's written to you every week.
@Lizdeflores you're amazing to have achieved C25k, I'm so impressed!
Good wishes to all who are waiting for appointments, results or treatment plans (blimey @Acinonyx2 I'm shocked that they sprang the chemo date on you with no warning or consultation ). And to everyone coping with symptoms, side effects and dressings, new diagnoses, all the old crap that gets thrown at us.

DP and I came to Cheltenham on Thursday, a borrowed house in a village suburb, expecting to stay till Monday, but the house is so grim, we're going home today! I don't expect or need anything fancy, but musty smells and greasy surfaces everywhere are just horrible and depressing. And the abundance of aged fake flower arrangements. Also although I'm tolerating the new drug very well, I've developed insane itchiness on my feet, which is driving me nuts, and I suspect there's nothing that will relieve it - it's not athlete's foot.

But it's another beautiful day and our front garden makeover, long delayed, starts tomorrow!

@Babamamananarama I just wanted to wish you good luck for your stem cell harvest tomorrow/Tuesday and for your next 4 day stint of chemo. Kept us updated as and when/if you feel up to it.

I’m still no further forward - at least there is light at the end of the tunnel as I had my CT scan (finally) so I have my next appt on Wed 16th to find out what next steps are. 🤞 I will be put on active monitoring (watch and wait).

Have a good Sunday 👋

Thank you everyone (my phone is being stupid and won't let me tag people). I think it may well be this Oncotype test thing they were talking about. Only a few more days to find out anyway. And I will certainly check out the Facebook group Thank you.

It's so lovely and sunny here. I'm reading a book in a shady spot in the garden while keeping half an eye on the kids playing. I hope everyone is having an enjoyable weekend. My thoughts are with everyone going through treatment or waiting for results.

Sorry I am normally Littlestelephant

Greetings all. I am on my boat feeling pensive after DFs funeral on Friday. It was a lovely occasion and DSis is holding the fort with DM for a while. I am fixing things, cleaning and fettling which soothes the soul even when it’s the boat toilet. I can’t wait to sail away once I’ve fixed the dodgy electrics.
I’ve started the ridiculous diet for colonoscopy. I think I shall live on white bread egg sandwiches and chicken and rice. DH keeps forgetting and offering me healthy fruity things. Ah well maybe I will lose weight.

@Babamamananarama I am in Plymouth so if there is anything you need during your Derriford stay let me know.

@Bloodybridget I understand about the borrowed house. I would be setting to cleaning it up which wouldn’t be very restful.

Regards to all.
Top

Top thank you that is really kind.

Lunificent and anyone else interested in the Seachange residencies (which look fantastic) - I am 20 mins away from Newquay by car and have a spare room on our top floor with a little kitchenette and bathroom. I'd be happy to put people up if they wanted to do the retreat on a budget.

Thanks for well-wishes for tomorrow. I'm feeling a bit all over the place about it.

Hello everyone.

I haven't been on for a while - sorry to see some newcomers, but you have found the best place to be - this really is an amazing group of people.

I finished radiotherapy on Wednesday, which means I am mostly done! I have Tamoxifen for the next five years and I'll see my oncologist in early July, but no more invasive treatment. Yay! I actually feel a bit strange about it all - I thought I'd feel more relieved, but I don't think the enormity of the past nine months has sunk in properly yet.

I'm checking in less often but will still come and wave at everyone occasionally, if that's ok. Sending lots of love to everyone who is still on this grim journey.

To celebrate the end of my treatment, DH took me to a safari park on Saturday (sounds weird, but I've always wanted to go to one), and we drove past a Cheetah enclosure which had their official name of Acinonyx. It immediately made me think of you, @Acinonyx2! So I took this picture for you. 😀

@AlbertCampion ah you have found me! How is your skin after rads?

@Babamamananarama hope it goes smoothly for you tomorrow.

@Bloodybridget nothing like a good garden makeover!

@TopOfTheCliff be good to get that over with. Dh had a total colectomy (and stoma reversal/reconstruction) nearly 20 years ago and I know how tedious that diet is - and very awkward when the other partner doesn't want to join in.

Glad the funeral went well (although that does sounds slightly odd).

I feel like such a bad ass veteran when I go into the hospital these days, with my skin-head cut and shades.

@Acinonyx2 Sounds like you are rocking your current look! I think if I lived in a city rather than a genteel village on the edge of the Cotswolds I would definitely go out with my skinhead. I like to think of my current hair stage as Furiosa from Mad Max, as it's my fave film. I do have some goggles so could totally recreate a fatter version of this look, which would be handy if I was into cosplay. The character is one-armed but I'd subvert it to be one-boobed

Hope your hospital dealings go as smoothly as possible this week @Babamamananarama.

@AlbertCampion Yay for no more invasive treatment!

@Babamamananarama joining others to wish you well this week. Your offer to have people to stay is so kind.
@Topofthecliff I hope the funeral was everything you and your family needed. We couldn't face trying to clean the house but kitchen surfaces got a lot of attention! Every sheet and towel we took is going in the washing machine!
@AlbertCampion congratulations on finishing active treatment. Hope everything is absolutely fine for you henceforth, and do keep in touch (but don't feel you have to. I think maybe some people need to have as little to do with Cancerland as possible, when in the post treatment phase).

Wishing everyone a good day.

@Babamamananarama hoping everything goes well for you - will be thinking about you.
@AlbertCampion thats great that you've finished treatment - now to enjoy some time. I totally get the need to step away from thinking and talking about cancer.

@Bloodybridget garden reno sounds just the thing!

Sending love and strength to everyone else as the cat is nagging me to tend to her instead of the phone

Morning lovelies

@TopOfTheCliff love hearing about your boat. Glad the funeral went ok, a sad time.

@AlbertCampion so good to have finished invasive treatment.

@Acinonyx2 😂 I get lots of strange looks when I'm driving with my shades on and bald head.

@Babamamananarama thinking of you, hope all goes well.

I have my pre-op assessment at 10am. I also have a funeral to attend on Wednesday but nothing fits me apart from my black leggings. I have cut down food intake and doing my 3k a day but my stomach is still huge.

Better get ready. Love to all.

HC x

Anyone on chemo or PARP travelled abroad on holiday on their own ?
Ive always wanted to do the Norther n Lights but bit concerned if I would be wise to travel so far from home. will probably be on a PARP by the winter, and maybe wont feel so brilliant, but am fed up putting everything on hold for the last two years

@thereisonlyoneofme I think if you can get several weeks into a PARP inhibitor by the time you go, you will be ok. You might feel pretty good by then too. I'm over two weeks in now and have been mostly ok. I shouldn't think you'd get insurance, though, so you might need to make sure the holiday provider would take you, and work out what would happen if you did need medical attention.

Yes the insurance would be a problem, either I wont be able to get any or it will be twice the cost of the holiday!

@thereisonlyoneofme For interest, there's a company called Omega that offer night flights from Birmingham (possibly other UK airports) to see the Northern Lights. They have astronomers on board to point out other stuff in the skies. It's a different way of doing it & cheaper.

@HauntedDishcloth my hair is about that length - I can only aspire to such cool though

@HumphreysCorner shades do really transform the look I feel.

@OrdinaryLife I also have a very demanding cat. (And another one but she's a really mad, scaredy-cat.)

Back to the chemo suite tomorrow. I'm working on 'reframing' this as helpful and lifesaving rather than yet more torture. Hopefully this drug will be milder as it's targetted. Just wish it was a pill - not to detract from the burden of taking pills (I'm not keen on those either...) but I would rather not do another 10 months' cycles back on an IV in the chemo suite. I'm planning some pre-chemo retail therapy. I may wear shades...

I've not posted for a while. And had to change my username.
Diagnosed in December with breast cancer fortunately after 2 operations I only needed radiotherapy and hormone tablets for 10 years.
I finished my radiotherapy at the end of April. What happens next. No one has contacted me no follow up appointments.
Last week I left a message for my BC nurse and she has still not got back to me.
Because of my age I'm to have Bisphosphonate treatment don't know when that will be.
My hips, lower back and the top of my thighs really ache.
I've spoken to my GP and he suggested contacting my BC nurse it's like a vicious circle.

Hello, I hope its OK for me to post in here. My Dmum has a tumour in her bowel which was biopsied and we are getting the results today. We are expecting to be told it is cancer- the doctor she saw after her colonscopy said that in his opinion it most likely was. I am going with her today at 11.30 to meet the team and she has asked to me write down a few questions to ask as she doesn't think she can really face it. I was just wondering, for those of you who have already been through this, if there were any questions you wished you had asked at the beginning?

@ForgedInFire I don't have experience of bowel cancer, but just wanted to wish your mum successful treatment, if it is cancer.

[quote Bloodybridget]@ForgedInFire I don't have experience of bowel cancer, but just wanted to wish your mum successful treatment, if it is cancer.[/quote]
Thank you! The meeting went better then we were expecting. Right now they are saying stage 3 but it could go down to stage 2 potentially if her lymph nodes come back clear and they are hoping to be able to cure it with surgery and chemo

@Acinonyx2 Hope your return to the chemo suite was ok, and that the retail therapy did its work!

Meant to ask you if you’re doing Kadcyla (I think you’d mentioned it before)? My onc says I’m a borderline contender for it as I was a hair’s breadth from a pathologically complete response but could still opt to play it super safe and switch to Kadcyla from the Herceptin. Wondering if you or anyone who’s tried it has had any adverse reactions?

@backformore I did expect that your onc would say this. I have a friend in the US on Kadcyla who only had traces of cells at pathology - my understanding is that it's recommended if they find anything left at all.

Had my first one today and don't feeling anything much yet - let's see over the next couple of days, but I'm hoping for the best since this is a targetted therapy. People do get side effects on it - but usually milder and as always varies a lot person to person.