Cancer support thread # 75 - come on in!

[Bloodybridget]

This is the new thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, there are other threads on this topic - this one is for cancer patients ourselves.

@BitOfFun Sending all positive thoughts and wishes, will be thinking of you xx

@BitOfFun we’re here for you. Try the old mantra trick to stop your thoughts running wild? Thinking of you today

@BitOfFun good luck for today.

I've not been here for a while. I've got my MRI date of 8 September. So hopefully I will get good news then.

Started HRT and that's working out really well for me. Stopped all my symptoms within a few days. I feel back to my normal self now

Sending the best of good wishes to @BitOfFun. I guess you'll have to wait a while for the scan results too. If I were the praying type, I would be . .
And of course good wishes to everyone else, whatever stage you're at, however you're feeling.
I had a rather grumpy and very lazy day yesterday, but friends came for supper, I cooked a nice meal, and we talked and laughed. Today, right now, the sun is shining, air feels good, and we're about to walk to our rowing club to have coffee with a couple of people who are going out in singles (something neither of us feels competent to do, and what with one thing and another, I reckon it'll be a long time before I get back on the water). Also have picked yet more tomatoes from our two astonishingly productive plants!
So hoping everyone has a little joy today, wherever it comes from

Hi to all. @Bloodybridget. Hope you get clarification this wed about your surgery. Sorry to hear it needed.
@LucyWarlowsRightHand Good to hear your surgery went well and your home. Hopefully feeling ok. Be great if no chemo needed. When will you hear?
@Thymeout. Nice would have been perfect distraction this weekend but cancelled due to quarantine rules. DD didn't want to miss start of school. Will have to settle for costa de greenhouse over my annual leave. Don't mind actually

Sending best wishes to everyone else.

My update is DD did excellent in GCSEs. So that was good news. On my first day of annual leave (Friday) got tel call from hospital to schedule me for 9th September and to isolate from 2nd so additional leave required for this. 🥴I'm hoping that once surgeon scopes me he will plan surgery soon after.

My mood has been up and down. Tried twice to get tel apt with GP but both times no slots left so gave up. Bought Nytol which helped a bit. Need to give myself a good kick up my dysfunctional ass to motivate myself and try to enjoy this time off.

@BitOfFun thinking of you today.

@ElaineMarieBenes my oncologist told me that NHS doesn’t do ports/PICC lines as a matter of course, only if your veins are shot. Bah!

@InOtterNews I had below zero energy for the first week after my first cycle, then was able to go on gentle bike rides (6 km in total for each trip). I even felt like I could do a short run at the weekend but didn’t want to risk it. Irrational, I know.

Just had my 2nd cycle today. Almost got sent home AGAIN due to renegade white blood cells which were 0.94 and I needed 1 or above. Luckily the doctor on duty agreed to do another blood test this morning which came back OK. But I did have a cry when they told me (before the test) the cycle may have to get postponed for a week (protocol).

Now feeling in limbo. Not feeling great but not too rough either, although I can feel the nausea creeping up. I got a huge bag of meds: anti sickness, steroids, mouth wash, anti virals (to prevent ulcers), CSF injections. Just looking at them all makes me feel very decrepit.

@KentishMama how did changing of dressings go today?

@Bloodybridget I love tomatoes, especially home grown! 🍅 My husband hates them - weird, right?

OK, 5 cycles to go. Feeling like a prisoner, ticking off the days.

@gillmoregirl congratulations to your daughter on her exam results! 🎉

@balkanscot when I first got my meds I created a spreadsheet to remind me what to take and when and stuck it to the fridge. Now I just have multiple alarms on my phone. Though tbh I only need reminding now in the evenings as the urge to get into bed early is greater sometimes than the need for meds. You do get used to it.

@Bloodybridget I have tons of tomatoes but the sun seems to have had enough and they're still green, attached to the plant and not ripening. Sod's law they'll be ready when I'm in hospital.

@BitOfFun I hope your scan is uneventful. I can't offer any sage words other than I'm thinking of you

I had quite a day.

Dressing change was fine. The nurse also aspirated over 200ml of seroma from the lymph node surgery site, and that made me feel much much better. I was so uncomfortable!

When I got home, the phone rang. The consultant called to give me my surgery results. Didn't expect them till later in the week, so I was caught off guard a bit.

Good news: Margins clear, no second surgery needed! Yay!

Bad news: 5 out of the 13 lymph nodes they removed were cancerous. FIVE! One of the metastases in the lymph nodes was bigger than my actual tumor. WTF? Tumor 12mm, metastasis 15mm. Turns out my tumor was located just perfectly alongside the lymph vessels to spread early. Bastard tumor.

So next steps:

1. CT scan, presumably to look for metastases elsewhere - already done, I went this afternoon
2. Handover to oncologist - meeting tomorrow evening
3. Who the fuck knows. Probably chemo, then radiotherapy.

I keep thinking I'm going to catch a break and just one test will have good results. And then cancer just keeps throwing more at me. I've now gone from harmless papilloma to very small isolated tumor to lots of lymph node metastases in the course of three weeks. What next?

Sorry about the essay. I had to write it all down.

Thinking of you all. What a club I've joined.

@KentishMama I know right?!

What a fucking bastard tumour you’ve got there. How fucking dare it.

I’ve decided I’m officially Feeling Sorry For Myself today. ExH and I will go for a 5-min walk in a bit so I’ve at least got some exercise in. I’ve been told to start slowly, but I’ve still got to start.

I’ve been listening to audio of old episodes of The Good Life today (audiobook with occasional narration by Penelope Keith). Really love it, although these days self-sufficiency in Surbiton sounds more like the sole preserve of Euromillions winners than the premise for a sitcom!

Still not quite sure what Barbara saw in Tom, though.

Hello everyone. I'm going to join the party.

I've got stage 3 hormone negative breast cancer.

I also have BRCA1, which I knew about for years, and was on early surveillance for. But they don't scan you when pregnant or breastfeeding, and I fell pregnant with DD3 remarkably quickly, so I ended up with 5 years without being scanned. Thank god I was still checking myself, and I found a lump when the baby was 18 months, in April this year.

It turned out to be my breast cancer + involvement of 4 lymph nodes. So aggressive. I can totally relate to Kentish Mama and the seemingly worsening news with every appointment. And the horrendous wait for news of metastases. It is grim.

I have now finished an aggressive course of EC on 2 weekly cycles. I also had a horrible first round reaction. The vomiting got better but the other side effects have more impact now. I am now on a short break whilst they re-scan for progress and do liver function tests before 12 weeks of paclitaxel/carboplatin. It is working. I can't feel the lump at all anymore. It is very gratifying to feel the bugger shrinking as it is nukes.

Then double mastectomy with diep reconstruction. I had already planned this for next year, after I had stopped breastfeeding and had scans etc, in line with preventative action for BRCA1, so this was not too shocking. Then rads after. Then once I hit the big 40, get those ovaries out so I don't get the other bastard I'm genetically primed for.

It has been hard with little ones. My Dad died at 71 of gall bladder cancer (nothing to do with the gene), just last November. So very fresh in my kids minds. And makes them associate cancer with death.

My mum, the BRCA1 carrier, has survived breast cancer twice. Once with involvement of all lymph nodes; 20 years later and no Mets. She was part of the trials that discovered the genes. Knowledge has moved on so much. My grandmother (also a gene carrier) just had a lumpectomy and was sent home to die. She lived another 30 years. It definitely takes huge advances with each generation. I am hopeful for my 3 girls.

I am hopeful for myself, given that breast cancer hasn't killed anyone in the generation above me. This is counterbalanced by a fear of mets. My kids are too young. I want to live 50 years more. I want to beat this, and find the passivity of treatment very frustrating. The kids keep me active ish, balanced by tv and crochet time. Even the baby can work YouTube kids now... Thank god DH is wfh due to Covid.

@Starface Welcome and sorry you're having to join us! I'm TN too, stage 1. I've had a lumpectomy first (thanks to covid) and no nodes involved. I've had 4x AC and this week will be no. 8 paclitaxel. BRCA negative. I breasfed my DD to 8 months and found a lump when she was 10 months.

It must be so, so hard with little ones. Welcome, Starface !

@Starface, welcome, I'm so sorry you are having to go through this. But you certainly have some survivors in your family! Sending warm wishes to you and yours.
@KentishMama sympathy for your bad news, it is horrible when the news seems to get worse and worse. Very much hope you get a lucky break soon.

I got a call from Barts this afternoon, am booked for the PET scan tomorrow morning. Pleased to be getting on with it, hope this means everything will happen quickly.

Good luck with the PET scan tomorrow @Bloodybridget!

Welcome @Starface, although of course I'm sorry you're here.

I'm now on day 2 (day 3?) of being at home after my bowel resection and I'm doing ok. Not great, but definitely ok. I'm getting a numb arse from being in bed but I'm still too tired to spend much time out of it! Going to do another slow wander around the block today and not expect too much of myself. My GP rang me this morning to check in and she was very encouraging, which was nice. It's hard to know whether you're doing this convalescing thing 'right' when you're stuck here at home!

DS who's 10 came up to join me on my bed when he came home from school, armed with a massive pile of Donald Duck comics. It's nice having him here, just reading together.

Thanks for the good wishes- my GP is going to phone me tomorrow at half ten. Would I really get terribly bad news on a phone consultation?

Donald Duck, brilliant! Does anyone remember in the film Brief Encounter, they see a DD short at the cinema? Glad you are doing ok, @LucyWarlowsRightHand.

Hello ladies,

Can I please ask about the "one stop tit shop"

I've been referred on the 2 week wait, was told it will be the above .

How long roughly will it all take?

I'd put the whole day aside. I think I went in around ten, and wasn't done until half-five.

So sorry to hear your news @KentishMama. Is the oncologist ringing you today, did you say? I hope the CT scan brings some good news.

And hello to @Starface!

I can't believe you're home so soon @LucyWarlowsRightHand. Hope news is good for you too. And thinking of @BitOfFun and @Bloodybridget with scans.

And finally a date @gillmoregirl! I hope the time goes quickly until then. No kicking of arses needed, I think if I were you I would be having a good wallow (whilst celebrating your DD's results!).

I have a sore mouth, and tingly fingers and toes, but ok otherwise. Although I have toothache and the dentist is saying one thing (filling needed) whilst the oncologist says I should wait at least SEVEN months, so torn as to what to do...... doesn't seem to be any clear reason against a filling (bloods all fine so far), and the dentist thinks 7 months means I'm much more likely to get an infection / abscess. I haven't had toothache before, and it is making me grumpy!

Hey @Starmer, I'm seeing the oncologist at 6:45 tonight. She seems to be moonlighting at the private clinic I'm at? I'm wondering just how overworked these consultants all are. They all seem to have full-time NHS jobs plus private jobs outside?

I'm really, really freaking out today. I twigged last night that this all means I now have stage 3 cancer rather than stage 2, and that's been a very very very hard pill to swallow. And I'm scared the CT scan will now say stage 4. I know there's nothing I can do other than put one foot in front of the other, but I'm a mess.

PS: tooth ache is terrible, I feel for you! Who has the final call on what to do?

Thank you @BitOfFun, I was hoping to squeeze it into an afternoon maybe , oh well, only back at my work next week and asking for a day off already, that'll make them happy...

@KentishMama there's nothing I can say that will help, I know, so all I'll say is what a friend said to me: it's all right to be scared. It's ok to be a mess.

I don't know if I've posted this on here before or how well-known it is, but long before my diagnosis I loved a quote from Jon Kabat-Zinn which is more or less, "As long as you're still breathing, there's actually more right with you than wrong with you."

Everyone finds different things helpful, so ignore me if it's not your thing. Whichever way you want to look at it, cancer is just really shit.

The CT scan was clear. Pheeeew.

Now lots to digest about chemo and throwing me into menopause and radiotherapy. But I'll delay that till tomorrow.