Cancer Support Thread 95 - No googling allowed 😊

[LemonDrizzle10]

New thread - we need to stick together!

I was quoted that for an annual policy - I’m tempted but need to see what it includes. If it’s super duper I’ll go for it (DH says it’s ok - because we are hoping to travel lots next year for hols and I’ll need to travel to the Uk for radiotherapy so will need cover there).

things I’ve learned about having cancer:

• so much admin!
• thibgs are more expensive once you mention the word!

I’ve got ds home with me today. He cried about going to school which is totally unlike him. He’s 7. I don’t know if he’s poorly, or it’s an anxiety thing or what. But I haven’t pushed it. A one off day home isn’t going to hurt him.

vague memories of him not wanting to go to school this time last year I think the tememberence stuff upset him last year. So might be that.

Hi all sorry if this has been discussed previously but does anyone have any experience of Zoladex for protecting ovaries during chemo?

2 weeks post surgery and the fog is lifting a bit. I'm feeling less spaced out although still tired and mostly the pain isn't too bad with the exception of where the lymph nodes were removed. It feels so weird, and is quite sore although I guess that will reduce eventually. The scar is very discreet really, it just follows the line of my breast and I imagine once it's settled down will be hard to see. Visually you'd be hard pushed to notice that one is slightly different in shape/size and I'm comfortable with the appearance, which has always been the least of my concerns anyway.

What comes next is now beginning to occupy my mind, but I have another 10 days before that appointment so I'll try not to dwell too much on it.

I hope those of you having chemo are coping ok, and those recovering from surgery are repairing.

Glad to hear of improvement @frostyfingers and I hope you can get some decent respite before the next steps. I found the sentinel node scar gave me the most gyp, partly because of summer heat and perspiration. It’s settled down and is fine now. Once my scars had healed (eg no scabs) I started to use bio oil.

I’ve been for bloods this morning and haven’t had a call to put a hold on next week so I’m assuming tomorrows chemo is going ahead - it could well be that I’ll get a call to delay in the morning but I really hope my liver alt has reduced as that’s better for me all round. My cold socks and mitts have arrived and the ice packs and freezer packs are in the freezer, with a cool bag ready to go. What with the cool cap, hands, feet, the layers of blankets on my body as cool capping makes me cold, and trying to manage specs and earphones, it’s quite a performance! If tomorrow goes ahead I’ll be 1/4 of the way through my whole treatment and 1/3 through the paclitaxel.

Hope everyone else is doing ok.

I have my surgeon appointment tomorrow and have written a list of questions - but it’s like a needle in a haystack! I’ve no idea what they will recommend. What do you all wish you’d asked?

Glad you are recovering @frostyfingers .

@dancingwhilstfacingthemusic I'm wondering if I should get the cold socks and mittens - I've only had one pax, but would rather head any issues off at the pass. Have you got a link? Honestly I arrive at chemo (by train) like a pack mule, with my food (my unit provides a menu of food to choose from but I hate it all and have a tiny appetite so I bring my own!), kindle, crossword book, phone, power bank, boiled sweets, big fluffy scarf, bottle of water ... Good luck with the blood results. My bloods are tomorrow, and second pax on Friday. That will be chemo cycle 6 of 16 ...

Paclitaxil 2/12 yesterday. Smashed it. Woo.

hope everyone is doing ok today. Xxx

I'm so tired!
My panic about the future has abated I think - though next week I probably get results from the mastectomy and I don't know how I'll react emotionally if it's bad news. But right now, I'm not worried about that.
But I am having a bit of a life-rethink. I work 0.75FTE - currently on medical leave. I don't know when it would be sensible to go back. I still have the drain in, and the BCN said at least 2 more weeks off. I'm sure work would be fine with me wfh. But I'm just so tired! I can't imagine being effective. How will I ever go back to work properly again? I'm already wondering whether when I do finally go back after all treatment is over I should go back 0.5FTE. It would be a weird time to drop my hours - when my children are almost grown up! - but I just can't imagine doing what I was doing before...
I guess I'm just tired from the operation(s) and the emotions of it all? But from what I've read here chemotherapy sounds exhausting, and I have also heard that radiotherapy makes you very tired. So I don't see that I'll have my energy back any time soon? Will it ever come back?

@breastcancerpanic energy levels are a bit like tides. They ebb and they flow back again. You can’t fight it, you have to live within the limits they impose, but you can help yourself by getting plenty of sleep and rest as needed. Exercise helps boost energy strangely, as does eating healthily (unprocessed food with plenty of plants). I take some glucosamine for my joints but no other supplements.
I have endured two cancer triathlons in four years and had three courses of chemotherapy. I spent most of last summer (2023) on oral Capecitabine which gave me a profound fatigue and I did an awful lot of Sudoku on the sofa.
I am now getting back to fitness again, cycling up to 60 miles a day, and can walk 20000 steps a day measured by my Fitbit. I think patience is key, not pushing too hard and accepting the limits.
When to go back to work is dictated by what you can afford. I decided to take my pension and stop work, in part because my memory was so poor I didn’t think I could do my job safely. I was lucky to have that option. If I had needed to carry on I think I would have asked for an Occupational Health assessment to plan a phased return.

@BatshitCrazyWoman imm pleased to have started with them. They are the suzzipad set, cheapest on amazon. I needed to change blocks after about 45 mins to keep it cool for the session. Popped them on 15 mins before. I totally get what you mean about a pack mule!

go you @ememem84 Pac 4 today, so 1/4 way through treatment. Liver has read the manual today but still 3x normal levels (rather than 8.5 times😬).

@breastcancerpanic it is very early days for big decisions and you have some wise words there from @TopOfTheCliff

@breastcancerpanic agree with the very wise words from @TopOfTheCliff

i haven’t experienced the surgery fatigue. But totally get the work thing. I’m itching to go back but know I’ll need to stagger my return when I do eventually go.

the chemo fatigue for me has been up and down. Typically the day of treatment and a couple of days after I’m the tiredest. But I put that down to the steroids they give me making me wired and then that affecting my sleep pattern.

now im on the lower dose stuff I’m not taking any meds when I get home. Which makes things more “normal” for me. It makes me feel less like a sick person if that makes sense.

today has been tough. I had chemo yesterday and was hoping for a nice chill day. But no. Dd was sent home from school - she has a bit of a barky cough and apparently did a huge cough then sounded like all raspy with her breathing and she got upset so had to call me. She’s fine. But was bouncing off the walls today. So annoying. Meant I couldn’t rest at all.

I'm glad your liver is playing ball @dancingwhilstfacingthemusic I'll look into the cold packs (not sure about keeping things cold on my journey).

@ememem84 👋🏻 to my chemo 'twin". PAC number 2 for me on Friday. Loads of muscle aches and pains today, I had to take some paracetamol. Appetite slightly improved today but will probably disappear again on Friday 😔 I have done loads of housework and swept up leaves on the garden though, so have achieved 'something'.

My sleep is appalling, and I need a lot of rest/a daytime sleep, work is out of the question. I had thought I'd retire in a couple of years, but I may not go back and retire a year earlier when I've finished treatment. I've got a meeting with my financial planner in a couple of weeks to talk it through.

@BatshitCrazyWoman I took a picnic cool bag with a couple of freezer blocks. I used a pair of socks under the frozen socks.

Im keen to be back at work as it’s my own business. I’ll probably cut down as my cancer does not have the five year all clear but an onward risk of recurrence. I won’t get my pension for a few years and need to work for mental health and the funds to travel (especially if the insurance will be weighted upwards). That’s not a today problem though a a phrase I’ve been using, although I appreciate it is pressing for others.

@ememem84 I've got annual travel insurance with Staysure, someone on here recommended it a while back. It was not an eye watering amount compared to other insurers.

Thanks for that @LemonDrizzle10 Im armchair planning at the moment and looking forward to getting overseas again.

@Littlecaf hope the meeting went well for you yesterday.

Hi Mintymood

I’ve been on Zoladax for just over 4 years ( as an alternative to chemo!). I don’t know if I can help you at all?

I had my final Paclitaxel this Monday and I am so thankful it all went smoothly. Chemo was definitely not as bad as I feared. Not sure what to do to celebrate but maybe my sense of taste will go back to normal soon and I can go out for a nice meal!

Moving on to the next stage (Zoladex and Letrozole) soon. And continuing with the trastuzumab for another nine months of course.

My scar is still pretty red. Had my single mastectomy in July. Does anyone have any idea how long it will take to fade to skin colour?

I'm having Zoladex to suppress my ovaries so I can take the aromatase inhibitors, not to protect them.

@dancingwhilstfacingthemusic hey, thanks for asking. Surgeon appointment went well - the MRI show that the chemo and the Phesgo have worked - no visual sign of tumour or cancer in the three lymph nodes. So pleased. While I was being examined behind the curtain my OH took a photo of the MRI report the screen so I can read exactly what the diagnosis was - it very clearly says “complete radiological response” - he did this because when I am doubting/worrying if this is all working I have evidence it has worked so far!

However because of original extent of the tumour (71mm) they are recommending mastectomy and 4-5 lymph node removal - probably before Xmas. I had pretty much guessed this what he would recommend from comments on here and the MacMillan forum. I’m fine with this. They can do a delayed reconstruction 12 months later - apparently the plastic surgeons do a “beautiful” job.

Radiotherapy in the spring.

Had my last chemo today - so one more week of hellish side effects - but it’s good to have some good news.

That’s super, @Littlecaf , in a way that only those of us on the thread can describe it as super! Glad you’ve had a good response and have an onward plan.

@dancingwhilstfacingthemusic thanks - as I said I’ve found this page and the Macmillan forums useful for gauging what the surgery would be and the chemo impact - so helpful so thanks to everyone who has posted.

That's encouraging @Littlecaf and glad you've done your last chemo. Good call from your DH to take a photo, I'll try and remember to get mine to do that!

@frostyfingers i don’t think he was supposed to take a photo 😂but I’m such a worrier - when I’m having a dark day I always ask “he did say curable and treatable” “he did say he was appropriately optimistic” etc. So to see it written down will help! There wasn’t anything else on the screen about other patients etc.

@Littlecaf No, probably not, but it's still a good idea. I sit there and nod but don't really take half of it in and as you say seeing it written rather than said is helpful!!😂

@frostyfingers i have thought about recording the conversations - you can also get dictation apps too. Our doctors do allow them both so maybe ask for that too! (Or sneak a photo!) Oddly the report was written in comic sans typeface 😂😂😂 Maybe the surgeon also needs some light relief in his day!