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.

@thereisonlyoneofme - we have our dog groomer who luckily happens to appreciate our DD (she’s a barky, very nervous Sprocker who has a permanent look of existential crisis see attached pic). She doesn’t take dogs normally, but I asked her if she “knew anyone” as DD hates kennels and she offered to take her. We are in the NW near Blackpool, I’d happily take yours though if you were in a tight spot.

So we cocked up and forgot to put my filgrastim injections in the fridge when we got home. DH really upset and blaming himself when it’s not his fault ☹️ Leaflet and hospital pharmacist both say that the liquid is stable for 15 days out of the fridge as long as they stay at room temp now…but as I’ve had no side effects so far I’m worried that they aren’t working because they haven’t been stored properly. Why the hell am I worrying that I DON’T feel worse than I do rather than being grateful? Everything just makes me so anxious. I’m fed up of it 😢

incognitodorito thanks, but Im in Kent, bit too far away !

incogdor Lovely pic, my cocker is similar very barkey and sensitive with a permanent look of panic !

@WorryMcGee , we seem to be having the same journey! I did that with my first set of filigrastim! I was told not to put them in the fridge as they had been out, but to use them as normal and it would be fine, just to remember fridge next time. As far as I know all was fine!
I get what you say about worrying about everything, it’s hard to trust the process when everything is might or maybe.
Hope you had a decent nights sleep.

Too many ! s in last message…

Thanks @Podgedodge ❤️ DH back to work today. I can hear him downstairs getting ready to leave telling the dogs to be good 😂 I’m even feeling nervous about him going to work. Daft when three months ago that would have been totally normal.

Just had Oncology consult and there appears to be an enlargement of my adrenal gland.
I was convinced that something was stirring due to small increase in CA125 and looks like I was correct. Quite depressed now I had been enjoying the last 18 months treatment free except for PARP.

Sorry to hear that @thereisonlyoneofme - what happens next? Is there any chance it's something benign? Even when you've suspected something it must be a shock to get it confirmed (or partly confirmed?)

@thereisonlyoneofme I’m sorry to hear this. Have the drs said it is a recurrence or is it something completely incidental like Addison disease. I just had a quick google and metastasis to the adrenal glands is very rare. Sincerely hoping that this isn’t what we’re all afraid of eventually.

Sorry to hear that thereisonlyoneofme I had an adrenal mass and the surgeon of doom told me it would be probable stage 4 but the nurse said most are not cancerous. When I checked I think it was 5% of adrenal masses found on CTs are cancerous. I am still being tested for adrenal conditions but not believed cancerous. Adrenals is a rare place for breast cancer to spread, as mine was lobular they said increased risk but sometimes an adrenal can be enlarged I think just through stress.

Its only showed up after 6 month scan, always had 3 months before never
mentioned. I keep reading about it being rare but I think thats if it is the initial site not metastasis, and Ovarian cancer is considered rare, but judging by the posts on various forums it is quite common ! Trust me to be one of the unique ones

@thereisonlyoneofme I'm so sorry to read your update and really hope it's inflammation from the gland causing the rise in your CA125 and they can sort it out easily. Did they say what the plan is to go from here?

Oh god I’ve just found out the name of the consultant I’m seeing it says he specialises in consultant oncologist, specialising in gastro-oesophageal, colorectal, pancreatic, liver and bile duct cancers and neuro-endocrine tumours. there’s no good going to come of this is there? Just when I’m optimistic I’m dragged back down again.

@thereisonlyoneofme I am sorry to hear you’ve got more worry now. When do you find out the plan now? There’s still a chance it’s not a recurrence so hold tight.

@EachandEveryone Oh bless you, so stressful. Have you got a date for your CT results now? I wish there was something I could say to make it better but it’s just bloody terrifying.

Well, my update is that the decision about my sixth chemo was partly taken out of my hands anyway, as my blood cells are not good enough to have another one this week, and my oncologist agreed that I have probably done enough, so I am done! Which feels quite weird, if only because I have two extra days now this week that I haven't planned anything, and I'm not quite sure what to do! I will get a follow-up appointment in three months. They are still recommending radiotherapy, and I am still saying no, so that feels slightly scary, but I seem to have a better grip of the research on my specific situation than the oncologist does so I feel fairly confident that it is the right decision.
Not quite sure how long it's going to take to sink in that I have finished!

@thereisonlyoneofme and @EachandEveryone it is the not knowing that is such a torture. Once you have firm information and a plan it all gets easier. Sending love and best wishes to you both.

I went for my penultimate chemotherapy today. All well and I had a free NHS lunch with a white bread sandwich, crisps, and biscuits! Not what I would have chosen perhaps but free and welcomed. Onward now to another scan and a surgical appointment next week to hear the MDT plan.

@SierraSapphire I can understand you feel a bit odd being cast adrift. It’s like suddenly falling off the conveyor belt into no man’s land. It will take a while for you to feel safe I guess.

Love to all
Top x

Two radiotherapy down, three to go. Evening appointments and the first two have both run an hour and a half late! Still, everyone is very kind, and nearly at the end of treatment except for five years of tablets. I am so grateful for mammograms, and for the fact that compared to many of you, I'm having an easy ride.

Wishing everyone well - particularly those on this thread who are struggling, whether with symptoms or admin!

Today we had our annual trip to the Christmas tree farm and drank "luxury hot chocolate" in the cafe. It was a real treat (fuelled by steroids) and the cafe lady turned out to be my BCN's best friend for 25 years.
Two years ago when we went there I was having chemo and had a broken leg. Last year I was flying fit and happy. This year I am doing chemo and bald and fat again. I'm looking forward to next year when I am fit again I hope. You just never know what is round the corner! It felt good to seize a little bit of happiness on a dank day.

@ajandjjmum well done seeing the positives when you are kept waiting so long. That would infuriate me! I like going first thing if I can because the queues are shorter. I've got a check up mammogram next week to see if the tumour has gone. Fingers crossed!

Regards to all. I'm enjoying getting ahead on Christmas preparations as I don't have much else to do at the moment. I'm too weedy to do any gardening or boat maintenance or decorating or gym sessions. It's quite restful actually!
Top x

Just getting ready to go for my 7 pm RT. It's too cold and wintery to be stripping off at the moment!

Fingers crossed for your mammogram next week Top! x

Top, good luck for your mammogram!

Nearly there now @ajandjjmum

No updates here. One week post final chemo, finally feeling less sick today. Managed to walk 4.5 miles somehow today running round like a crazed fly doing school runs and prepping stuff for my youngests birthday party on Friday. I’m still waiting for a date for my post treatment CT scan and to be honest it’s all I can think about. I’m so worried and trapped in this limbo and now also worrying that results will tie in with Christmas and ruin it for me. Ugh.

Good luck Top, also hot chocolate is lovely and you’ve made me crave one. I’m going to stick DD in the pram and seek one out tomorrow.

DH was off work today and I woke up not feeling sick! So we went out for breakfast, and then I went out on my new bike for 15 miles. Feeling tired now but proud of myself - I’m a runner not a cyclist and haven’t been on a bike for about 7 years…but running seems impossibly hard right now and a shiny sparkly green bike that someone else barely used has found its way to me. Also I got told my picc line is being put in on Monday ready for my next cycle on Wednesday so that’s another piece of uncertainty out the way.

Thinking of everyone who is waiting on scans and results. It’s torture.

Hello everyone - thinking of you all, especially people waiting for results and next steps. Well done on the bikeride, Worry.

I'm 9 days post chemo 2, and have been feeling physically OK, but emotionally pretty wobbly. I just gave my NHS wig it's first online outing in a zoom and got kind feedback from my lovely colleagues, so that feels like a hurdle crossed (have a interview with a prospective new client tomorrow and wanted to have tried it out before then).

I've always seen Christmas as a bit of a milestone, when you look back and look forward. So I'm with you, Top, thinking 'this is where I was last year, who knows where I'll be next year'. And I hear you about the results timing, Great - it all seems harder around now, somehow. When my mum had cancer the two crises in her illness where at Christmas - when she was first ill and diagnosed and then the following year when it became clear she was dying. But perhaps I just need to try and focus on the now, and enjoy the hot chocolate while it's in front of me (I want one now too!). Planning a trip to see the Matilda film with teen DDs this weekend - happy memories of seeing the stage show when they were little.

Hello everyone.
I’m just going to quickly introduce myself, having been diagnosed with bc in March.
I’ve read some of the cancer threads but at times found it quite hard to do so have held off joining till now.
I’m 51, was diagnosed via routine breast screening (had no idea there was a lump and felt very stupid for not noticing), had 4 rounds of FEC, complete response on MRI led to lumpectomy in August but pathology found some live cancer cells so I have just finished my 4th round of Docetaxel - hurrah! Am having immunotherapy alongside and that will continue for a while. Radiotherapy too but no idea yet when that will be.
Anyway, I was just (sorry it’s dull) wondering about hair loss. I lost most of mine but not all after 2 rounds of FEC and it started to grow back about 6 weeks after the last round. Since going on Docetaxel, I was convinced it was going to go again, but so far leg hair has gone, pubic hair gone, eyebrows thinned but hair on my head is still there, nothing gone at all. I did cold cap so I am not sure if that has made the difference or if I’m just about to lose it all.
Has anyone else managed to keep hair on Docetaxel? Or is it just a delayed response? Everything I read tells me my hair will definitely go. The thought of it all going now is depressing.

Hi all,

I am a bit depressed and would like to just talk about it if it is okay.

I was diagnosed in June, had bilateral surgery in July and still waiting for chemo to start, supposed to have started last week but came down with a cold and sinus infection (currently on antibiotics) and which seems to have triggered my migranes. I am also having visual auras. I am so down about it all as I keep thinking the cancer may have spread to my brain (i cant help it) even though consultants say they managed to remove it all during surgery. I still worry. Its a long story about why the chemo was delayed but we got to the end and as i was due to start i caught a cold which annoyingly while I was waiting for chemo, I was feeing quite well in myself.

Now, I am scared of asking for a brain scan in case they find something sinister. I keep on worrying and that increases the headache and its a never ending cycle.

Sorry for the rant, I am.just really scared.