Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

No, no leg exercises or stockings...

Wondering if I should have done as I developed a DVT during treatment!

Must be due to where the radiotherapy was targeted - mine was cervix and pelvic nodes -I had to do an enema before each treatment, and then drink 750 ml of water and hold my bladder for 45 minutes before. That aspect was bloody horrendous and I pee'd on more than one radiologist.

I have no cervix. Mine is on my lymph nodes. Still no sign of the primary.

Allotment The specialist teacher is for DS though she might have more luck helping with the kitchen. 😂

@Silkiebunny that made me laugh. Maybe DS could help with the kitchen too? Practical skills will help him more than French or History lessons.

I decided to be sensible and ring the BCNs and tell them I saw a raised Ca15.3 result and I’m scared. I wish they weren’t monitoring it and I keep telling them that. What will be will be. Sigh…

Round 7 oral chemo starts tonight and my onc says she has nothing else in mind for me apart from going back on exemestane for cancer no 1 for a couple of years. As long as the bone scan is okay. Wibble.

Sending courage and strength to you all
Top x

@isaxx I forgot to thank you for the info about bone pain. It seems like a shoulder Impingement in that I have a painful arc of movement when elevating my arm to the side but it’s fine otherwise. Every now and then the whole shoulder gets sore round the head of humerus and tender to touch. It might just be radiotherapy nerve damage though. Fretting about stuff is going to be the New Normal isn’t it?

Thanks @AllotmentTime I took your advice.

Top When the kitchen project started the people were bringing an 18 year old asd boy as their apprentice and I optimistically thought maybe that could inspire DS though DS is the least practical person ever, he's very academic like the mad mini professor. He needs his clothes putting out for him at 16. But nope we actually got a second boy who struggled and the one man was often half a day late due to the boy. Hence the 4th week of kitchen work when it was supposed to be 2. That's fine, I just wish life wasn't so difficult for them.

Floof has been delighted with the visitors and doing regular inspections. I just was walking to a room and Floof was in the way due to kitchen boxes and I said Floof can I get through please and he moved his tail to make a way through. 42cms of tail. Just having a Portuguese tart and he's after the foil for a game of ball. I can recommend chemo cats, getting him in chemo was the best thing I did.

I've started freaking out a bit, with my appointment on Friday morning looming. One thing I'd forgotten to mention is that while dh is coming with me on Friday, he is going to his mum's for the weekend (Saturday morning to Sunday evening) which is in Northern Ireland- we live in Scotland. His brother from Canada is coming over for a week for the first time in 6 years so dh feels he has to go and see him. I've arranged for one of my best friends to come over on Saturday so I'll have company, as well as dd2 who still lives at home.

I asked dh (he's a GP) to have a proper poke about the other night and he said in his experience my lumpy, hard, immobile lump is more than likely to be cancer. I know I asked to know but it's freaked me out and I know I won't relax until Friday is over and I know for sure what I'm dealing with. I'm quite practical, and once I can start to plan then I'll cope better.

Sorry for wittering on. There's not a lot of people I can talk to at the moment, though I've got a marvellous stepmum who had bc 10 years ago and she's been amazing!

I'll catch up when I know better!

@weegiemum I felt the same way when waiting for the first tests and results. I’m very lucky to be getting private treatment but the first ‘one stop’ ended up being two because the mammogram machine wasn’t working. And both the surgeon and the radiologist told me it looked like cancer before the tests came back. I definitely felt I was being drip fed bit by bit by bit as the initial picture became clearer. It helped in a way, as it gave me more time to absorb the news. I will keep my fingers crossed for you though, that it’s all ok.

Bad timing for your DH too, I have found myself compartmentalising a lot to try and keep some normality during the initial stages. I’m glad you’re not going to be on your own.

I can’t help at all with all the real queries but I hope everyone is ok today.

I start chemo on Friday and was surprised when the nurse told me the actual chemo will take about an hour…. I had thought it took much longer which shows what I know! I’m going to try the cold cap so I’ll be there longer but still not as long as I had in my head.

Glad you will have company weegieMum. Even if you are expecting cancer it's still a big shock when they tell you. Yes mine was hard and similar to a walnut in size and to feel, just appeared overnight, it was lobular and that grows as a spidersweb then forms lump. Its worth taking notes as they give you lots of info re type and they give you grade which is different to stage.

Breakfast Yes actual chemo takes an hour, well my weekly one did but on the NHS whole thing took about 4 hours, so an hour of delays especially in afternoon ones, then an hour of faffing around and pre meds, then an hour of chemo then another up to hour of faffing around then you leave. In theory it could be just over an hour with cold cap added on so maybe 2 hours privately. The first ones they watch you more carefully on so can be a bit longer. But once you've done one they are all the same and symptoms follow a similar pattern so worth keeping a symptom diary so you know likely good or bad days and pattern. Think you might get own room if private which must be much nicer, ours was like 16 in one room with masks sharing one toilet. The only thing was at 48 I felt very young for a change and healthier as about half had walking sticks.

Had my operation for 2nd October cancelled today due to strikes. No new date given. I asked how they can just cancel it without a new date and make me wait longer when they won't know till it's removed whether it's cancerous or not.

Hate this.

@weegiemum good to have company. At least another b kind to pick up the stuff that does it off yours. Hoping DH won't but at least expecting the worst.
@BreakfastClub80 I did first chemo ba week ago tomorrow.
Was better than I thought but seemed to have picked up a virus and been in and out of hospital, last couple of days.
Watching third season of Southern charm on hayu..omg it's awful.. Just as well I'm missing half of it!!! Cannot keep eyes open

@BreakfastClub80 if you are having EC (Red Devil) they tend to shoot it into the cannula rather quicker than paclitaxel or docetaxel which is infused slowly to avoid allergic reactions. The premeds take time though so I was never out in under an hour.

Just had a typical fuck up at the hospital pharmacy as despite speaking to the consultant and chemo nurse yesterday (who were happy with my treatment) nobody had pressed the button to authorise the prescription. I phoned the chemo unit and after an hour it came through. I was very chilled and saw two friends collecting stuff and had some nice chats. I am a very patient patient!

I've had some stressful days since I last checked in. Gave up again with the NHS and went private again (I'm not insured but it's a vital backup these days I find) to get a diagnosis then ranted politely till my NHS hospital woke up. It worked, got an appt in a few days. Not anything life threatening, but certainly quality of life limiting if not treated.

As a cancer patient having gone through months of 4 chemos, surgery, 3 weeks radio, and a whole load of monoclonal antibody injections, I am not able to remain calm and carry on; I need the required treatment this side of the 5th millennium.

@BreakfastClub80

Chemos can take differing lengths of time, plus different nurses vary - some chuck it into their patients asap, while others are slower and like a chat.

With EC chemo I was there about 4-5 hours, with Abraxane far less, for example.

Cold cap was awful, the nurse had no idea which size cap, faffed around for ages. It gave me a headache then someone realised later on the machine wasn't even switched on. I was relieved though once I'd decided to give it a miss because it meant far less time in that unit and a quicker escape. I went completely bald, but it's growing back. Some people have even told me this short pixie cut suits me better than my long hair did.

Our hospital is inundated with patients, so sometimes I waited a couple of hours after my appointment time before being let into the chemo room.

Good luck I hope it goes as smoothly as possible for you.

@Crimsonbow

That's so frustrating.. I really hope a new date comes through asap for your surgery and that the result is what you are hoping for.

@Silkiebunny

I love hearing about Floof. Have we seen a photo of the magnificant cat?

Bad news for me today from my PET. While the pelvic nodules appear benign there is mild/moderate uptake of contrast in lymph nodes in my pelvis, chest and neck. So, not good at all.

For a low grade slow grower it seems to be in a hurry. Inoperable for whatever reasons and unlikely to respond to chemo. There are options however, but I’m being referred to see if clinical trials may help, for a second opinion from an expert and also for genetic mutation testing.

I am in a state. I’m 38, my youngest is 6. How can this be happening.

Hugs to you @AGreatUsername There’s not much helpful to say except I am sorry to hear your news xxx

I am so sorry Great, sending love and hugs to you all and the cats. I really hope there is a trial that will help or that the second team can think of a better solution.

So sorry you've had to rant and go private to get the treatment you should have Summer Here's Floof, front and back versions.

Sorry op has been postponed Crimson Maybe phone and ask for cancellations if that's an option for you and if nothing is working put a polite complaint in can help.

Sorry you have been in and out of hospital nappy

Thank you @Silkiebunny As long as got to get home! Today I have watched so much nonsense ( no idea what any of it was about!)

Thanks for the welcomes.

Had my staging CT today and will find out hopefully on Monday what's next. I am supposed to be taking part in a fun run on Sunday that's sponsored in aid of the charity that helped my aunty through bowel cancer last year and there's this big family get together afterwards to generally celebrate that said aunty is now scanning as all clear.

I won't have the results of the CT at that point so feel I am just going to kerp my mouth shut about what's going on in my own bowels.

That's good you are home. I also have hayu, acquired in chemo for all the Below Deck, tried some of the others but they were too bad to persist with. Below Deck Australia is great.

Thinking of you @AGreatUsername. That's really shit, I'm so sorry.

Dipping in - these threads go so quickly - welcome to all those who are new - the thread title really is true.

AGreatUsername I'm so so sorry to read that - thinking of you and hoping better news is next .

I have finished my radio - at moment they have stopped my Letrozole due to side effects and are going to change it for something else similar next month.

Whilst I know what has happened since I was diagnosed I'm not sure I've dealt with all of it especially whilst working, sorting out (or trying to) teenager , DH , elderly DF and DB.

Sending hugs to all as who doesn't need a hug every now and then ?

@AGreatUsername I'm so very sorry to read your update, that's so unfair. Sending you my love Xxx.

@Great, I am so sorry to hear your news. I am hoping that the trials will work for you. Hugs.

@AGreatUsername so sorry the shittiest of shit, no other words