Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

Solidarity to everyone struggling through.

I'm on my second to last RT today and have found this the worst part of treatment so far and the only thing that's had me in tears. The relentlessness, nausea, trying to juggle work and treatment that's never at the same time, no schedule in advance for treatments, getting told off for missing a clinic appointment that I didn't know about and would have missed anyway due to treatment overrunning severely, being manhandled without warning/consent on the treatment table. Just holding on until it finishes now.

KOKO!

@catmomof3 that's a real blow that you should have been in Japan :-(

It really is, british airways have held my booking so I plan to rebook for next June as soon as I've finished brachytherapy and get a fit to fly letter. Just hoping I have no other issues in the meantime,

How's everyone doing?
Flagging a bit in the heat here 🌞

Back to work next week, after 8 long months off; I feel like a newbie!!

@catmomof3 hopefully you can fly to Japan next year and fingers crossed no further issues. Are you having surgery too?

@HellonHeels it certainly is a challenge, trying to juggle everything. So one more RT session to go now?
Will that be it then, end of active treatment?

My bilateral nephrostomy didn’t happen as too painful so still waiting on getting it done under GA - not convinced what will come first though- the procedure or my kidney actually packing in?!? Tumours are getting bigger and leg lymphoedema getting worse. Have to take a wee dihydrocoedine every night to ease the discomfort. Apart from that , everything’s great 👍🏻

@Whatevershallidowithmylife sorry to hear your update, fingers crossed you get a date through very soon.

@Enigma52 good luck for your return to work, are you doing a phased return?

There's not much to report here, I think I've got 6 more rounds of phesgo to go, so getting there, slowly.

I hope everyone is doing okay and has as good a weekend as possible x

@demivolte yes phased return.
I can't believe after all these last 8 months has chucked at me, I'm unbelievably nervous about stepping back work again. Got to meet the Head at 1.30pm today and am bricking it. WFT!!!!! 🙈

@Enigma52
Good luck with your meeting. Why are you scared?
Remember that they have to accommodate YOU and YOUR changed life and capabilities. Concentrate on what you know that you can manage and not what they want/think that you can do. If you're not sure about somewhat then say so and why.
Too many employers expect us cancer people to just slot straight back in. We can't. We are not the people we were pre-cancer and our capabilities change.

@lucysmam
How was Taylor and your trip?

@MothralovesGojira Taylor was fabulous, well worth the money we paid! (Which was around what I've paid to see The Killers too - so not stupid money). We need to go back to Liverpool to explore properly though - we missed so much!

I went to Manchester with dd1 straight after too - to look round the Met Uni (she wasn't keen) & we saw The Killers again while there.

Manchester is a great city. Where else is she looking?

i was supposed to go toBrixton tomorrow to see Janelle Monae and I cant face it as its indoors. She is amazing live but I will have to settle with watching her at Glasto on the telly. If by a slim chance any of u are in London and can goIm happy to give you them.

this is the first time in 24 years Ive missed Glasto. The nausea with the chemo is like nothing Ive had before and Ive only had three treatments so I need a solution. I feel much better today. Leg has gone down alot.

@EachandEveryone she's keen on Liverpool and York, and wants to look at Bangor.

I've never heard of Janelle Monae but we're having a 3 person kitchen disco so have her on Spotify now & I quite like her! Shame I'm in South Yorks & dd1 is at work tomorrow, she's right up our street.

Sorry to see you're struggling with the chemo 💐

@lucysmam
I'm so glad that you had a fab time! We have friends with a DS at York and he loves it. I love York as a city and have never seen everything that I wanted to there so must go again.
@EachandEveryone - so sorry that you're missing Glasto. It's horrible and depressing when you have to miss the stuff that you love because of cancer treatment.

We went to Download a few weeks ago and my god, it was awful. The music (what we saw of it) was fabulous but the mud.... I still have nightmares about the mud. I am not exaggerating to say that the mud was like liquid and was 6" deep in most places. It got to the point where it took 90 minutes just to wade through the mud to go to the toilet and back again so we didn't bother getting hot coffee and sat under rain ponchos in our chairs near the main stage for two days. By Sunday morning we couldn't face any more and were worried about the car sinking in the carpark so we quit and went on a steam train instead. DP didn't complain (loves a nice steam train) and we got home in time to catch the footie. I'm gutted that I missed Limp Bizkits and probably won't get to see them ever now but it was just so bad - I have sent an email outlining my thoughts on the whole poor wet weather organisation but have had nothing back.

We saw the Foo's last weekend and they were fantastic. They played a solid three hours of hits and better still, it was dry and the sun shined! Saw Placebo this week and they were so great.

Green day looked great at IOW.

I love York too but I think if I was into my music and bands Id look at Sheffield and Leeds. Liverpool as well but my good times where spent at Manchester early 90’s so I have a soft spot for it. The music scene was second to none.

this chemo is something else I think it’s called flox i have to bring it home. I can feel the lumps going down so I hope it’s working.

thank god my soaps are back on tonight I’ve had enough of the football now.

@Enigma52 No surgery, just 11 chemos, 25 radiation and 3 brachytherapy.

I did not realise how wiped out after radiation I would be, I've only done a week and I'm mentally and physically exhausted. Every time I close my eyes I hear the radiation machine and I start to panic. Also trying to get my bladder within range is so stressful and the weather hasn't helped, it's been sucking anything I drink dry.

Hope everyone else is doing well considering 💜

Im still eating crackers and watching Paul Heaton at Glastonbury. Ive optimistically bought some cider for tonight. I havent drank for months but i want to have a little bit of the Glasto experience.

I've had a lovely day today - wandered around town, ran some errands, had lunch in the sun. And now I'm taking a long bath to soothe my achy bones because they're just acting up right now. But I'm happy 😊

I met my new fancy breast cancer oncologist in Thursday, and I'm so impressed. He really took time to ask a million questions, checked what my understanding of risk etc is, and was generally just super nice. He is suggesting a step down from Zoladex and Exemestane to Zoladex and Tamoxifen for a few months to give me a bit of relief from pain. There's also a study I could join on a new medication that has a similar effect to Exemestane, but less than 50% of the joint/bone side effects, but as it's a blind study I'd have to be okay with perhaps staying on Exemestane if I happen to land on that treatment arm. I don't think I have that in me right now.
Also he's referring me to an endocrinologist who he's working with re: mega menopause weight gain. Something about microbiome and insulin resistance... I didn't 100% follow his reasoning, but will ask Professor Endocrinology when I meet him.

So that's me. I'm so glad I bit the bullet and changed oncologists. I really felt heard and seen in that appointment. Good bedside manner makes such a huge difference.

Hi, I'm new here. I was diagnosed at the beginning of June with triple positive IDC breast cancer, stage 1, grade 3. I've had a meeting with the breast surgeon, a bone scan, a heart check, and two biopsies. I'm so impatient for some treatment to start. I was told I would need chemotherapy, surgery and radiation but they aren't sure whether to do chemo or surgery first. I think I get to meet the oncology team next week if my second biopsy results are back in time.

How do you cope with anxiety? Sometimes I am totally fine and feel almost completely normal. Other times, I wake up in the middle of the night feeling like I've woken into a bad dream.

I'm a single parent with no second parent around to pick up the slack, although my mum is going to try to temporarily move closer to support. My girls are 6 and 11. When I am with them, they keep me very firmly rooted in the present moment!

@londondragonite

Firstly I'm so sorry you are having to go through this 💜 secondly, I have really bad anxiety as well and my cancer has made it 100 times worse. I find myself waking up at 4am on google and overall thinking the worst. My oncologist gave me sleeping tablets which does help but then I'm waking up too early.

I would 100% mention it to your oncologist they are there to help. They may suggest some meds to help if you are not already on them.

@londondragonite
Hello and welcome to the thread that no one wants to be on.
We always suggest that you should not google however tempting. The best sources of info are MacMillan, Cancer Research, Brest Cancer Now and Maggie's Centres. Try MacMillan first and visit your local Maggie's if you're lucky enough to have one.
Try not to fixate yourself on the 'possibles' and try to stay in the 'now'. Deal with things as they come because regardless of a treatment plan, things are rarely fixed and you have to be flexible to changes all the time.
On here you will find us all at different stages on our cancer journeys and it's likely that someone will have a similar type to you. We are always here to help, support and listen to your fears, bad days, good days, triumphs and we all have days where we come on here for a good vent.

The anxiety is completely understandable. What are your main anxieties?

@londondragonite sorry you find yourself here but you'll get great support. Most, although not all, of the women here have it have had a form of breast cancer.

That's the first thing you'll learn; breast cancer is not just one thing, but many types and sub types and then there's your stage, grade, age etc to take into account. That will be why your team seems to be going a bit slow, as they get more results they get more information which will help to ensure your treatment path is best for you. But I understand how scary the waiting is, when my team told me they wanted me to have 6 months' hormone therapy before surgery, I was horrified, but they did know what they were doing.

You've had a massive shock and you will continue with that weird dual reality if everything being totally normal and nothing being normal but take your time and you will adjust.

Does anyone know if when they do a CT scan, if they can view the area around a breast reconstruction?

Mine is starting to hurt when I lie on my front or side in bed.

Last CT was this month. Last MRI was September last year.

I've visions of the cancer growing in the recon!

@Enigma52
I'm not sure about what can be seen on a CT scan if you have a recon but I can see why you're worried. Any pain isn't normal so it may well be an infection? Perhaps a call to your BCN is in order and a quick ultrasound would indicate what's wrong? It could be a cyst or if it's an infection it will need attention and treating.
How did your work meeting go?

@MothralovesGojira yes you are right, I need to do something. The skin isn't red or swollen and the implant has been in situ for 13 years now. I'm just aware that it feels a bit different when in certain positions. Need to decide who to contact; the secondary breast team or the BCN for the primary ( probably the former).

My work meeting went okay thanks. Back next week on a phased return of 8 hours, with increases over the follow two weeks, then we break for summer. It will be daunting sitting in morning briefing at 8.30am! Just have to see how it goes. My priority is my health now, not my job.

How are you all? Getting caked in mud by all accounts! How are the DC? How are you, health wise?

@Enigma52
I'm glad that you (hopefully) got the return that you needed. I hope that you're also considering continuing the phased return after the school holidays at least for a bit? I'm only doing about half my duties at work, work no overtime etc. Good luck for this week.

I had another thought about your pain. It could be menopause related. I had the most awful breast pain while I went through meno - it used to make me cry when I took my bra off. Even so, I would definitely call your BCN/SBT because they will want to know and they can see your CT scan results for you. When do you get your CT results?

I'm doing ok. I had a CT scan on Friday and am waiting for appointments for a mammogram, ultrasound and possibly another bone scan. I spoke to the BC consultant this week who applied heavy pressure to book in for surgery right now which I said no to. I want to have my scans, see what the MDT say and then decide if I want treatment or not. I said that I will not be pushed into things this time as I can't cope with more forced trauma from medical professionals who see me a number and a problem to be dealt with. My last BC treatment left me so broken. I'm currently waiting for another BC consultant appointment but it looks like it will be August before I'm seen again.
Since the GP took me off Naproxen my joint pain has worsened but I have an appointment from gastrology to have a camera down into my stomach to see what's going on. My stomach pain has reduced since Naproxen left my system so that's a plus on one hand but on the other the joint pain is sometimes unbearable.

Youngest DC still doesn't know about BC2. They're going on holiday during July with their girlfriend and I don't want to ruin their happiness so I will tell them after they return. The other two DC know and are coping well as is DP so far but then again he's not a great 'thinker'.
Download was a bit of a disappointment and so, so muddy. My lovely Rocket Dog boots are ruined and I was absolutely gutted not to see Limp Bizkits so I felt really flat when I got home. I did have a fab time seeing Placebo this week as the weather was lovely and we went with my brother and his DP. After today my summer of music will be over and I have no gigs until October but I'll find something local to go to so I can keep bopping!