Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

New page

Thanks for the comments on microblading. I’m feeling a bit down this weekend - I think Tuesday’s chemo is catching up with me - but will ask the nurse next time I see her. No sign of hair loss yet - when should I expect it to kick in?

@Florabritannica post chemo doom is definitely a thing - was a few days after for me. Felt like the world was going to end. It will pass. Hair loss for me started a week after the second treatment..so 3 weeks from the first one; I think this is pretty common. My eyelashes waited until 3 weeks after my last treatment before they fell out…they’ve grown back very quickly.

@lucysmam I'm also getting hot flushes - not the menopause as that was over a long time ago. I bought a new thermometer and my temperature is low rather than high. Strange as I haven't had any therapy yet - just surgery 7 days ago.

@1Strawberrycat my temperature's been a very firm 36.7 for the past few days - I even borrowed a different thermometer just to check it wasn't somehow stuck on that number 🤣

It's either the chemo or hormonal - not a clue which one. My last period was about 2 weeks before chemo started 🤷‍♀️ but the flashes have been only over the last week or two. I don't know what's going on.

@Florabritannica my hair started coming out after the second week - leaving spidery trails behind me. It wasn't until almost week 6 that it actually came out in clumps & I gave up trying to style it to cover bald bits. It has continued to grow back since we shaved it though (am on paclitaxel).

My eyelashes and brows are taking their turn at falling out now though - dd1 keeps telling me to maybe curl my lashes/add more mascara so you can see them more but that doesn't help when some are stubby short, some are still firmly attached, and odd patches have totally gone 🤷‍♀️ I've been practising falsies and winged liner. Not sure I'll ever venture out wearing either but think it's helping deal with it mentally to know I could do something about it if I wanted to...with dd's assistance mind you to make sure I'm properly stuck to the lashes 🤣

@LemonDrizzle10 I forgot to ask; how's your dog today?

@lucysmam she's much better today thank you - such a relief!

No Candy floss but I did transport the lemon drizzle courgette cake 45 miles and we ate it for pudding. I am tired now too.

That's good to see @LemonDrizzle10 .

@TopOfTheCliff courgette is not something I'd think to use in cake - does it affect the texture?

@Florabritannica day 17 was when my hair started to go. It’s a tough process. But it will work.

Busy week here, lots of medical appointments and I did two days work. With the result I had a real crash yesterday, just exhausted and low.

Some issues with healing on my left side and had to be restitched by the plastic surgeon on Tuesday and they are talking about another needle to remove fluid. That may be this week. I’m still on antibiotics.

Some good news from the oncologist about a immunotherapy drug that will further reduce risk of reoccurrence and would usually cost a lot of money.

But I just feel so low. To the extent that yesterday I was just beside myself, literally sobbing like a small child. And I just can’t be bothered to do anything.

I think I’ve overdone it and need to try and take it a bit easier.

@FairyWren7 Hope you're feeling a bit better. It's okay to cry.

@FairyWren7 I hope you have an easy day planned for today. Great news about the immunotherapy drug. Having treatment is exhausting and on top of every day life chores and responsibilities can sometimes be overwhelming. I too spent most of yesterday crying.

Today DD is back from her dads - I’ve not seen her for 15 days - longest time without her since her birth! Can’t wait to see her.
Am going to be cheering for England this morning. Girl Power.

@FairyWren7 let it out! Crying helps I find. My lovely BCN told me every day of crying now is one less the other side of treatment. I liked that.

Adding courgette is like adding carrot to cake. You grate it in and it makes the cake moist and just a bit healthier. This recipe had fresh thyme in it too.
It was good!

Today I shall be watching football and resting. We are staying at a goat farm which is quite pungent!

@TopOfTheCliff that’s sounds like a good trade off.
@LemonDrizzle10 yes I’m not doing anything. Just watching stuff on iplayer.

I have this every couple of weeks, I seem to go ok for a few days and then I end up just crashing. I hope this is normal.

This double masectomy and what it looks like is really upsetting me. How it feels is worse, it feels tight and uncomfortable. I can’t imagine feeling physically normal again. Anyone a bit further along the path, had a reconstruction and feel ok?

@FairyWren7 I've not had a mastectomy but I’ve got the scars, blue bits, numb hands in the middle of the night and neuropathy which I’ve come to terms with because it’s saved my life. Another reason why I cry is I’m so grateful to have received such great treatment from our lovely NHS - I’m an emotional wreck at times!

Yes @LemonDrizzle10 thats it. All the numbness and also some of it is relief but also the knowledge that I’ve got a way to go. Hope you have a good Sunday x

You’ll get there @FairyWren7 - get the champagne chilling. You have a good Sunday too. It’s sunny here - I’ll take the dogs out early before DD gets home.

@CoachBeardsJane how are you doing? Hope you made it home easily (and not too much endless waiting around for just one more person to sign your release papers, as often seems to happen when getting out of jail hospital)

@LemonDrizzle10 congrats on finishing radiotherapy!

@Florabritannica I am two and a half weeks post my first EC chemo and although it's not noticeable yet, hair loss has definitely started.

@FairyWren7 I hope you're feeling better today. Ups and downs must surely be normal after major surgery ☹️ but if you are still at the stitches and draining stage then I'd guess it's really too early to assess how happy you'll be with the result, you must still have swelling and lots of healing to go yet. I hope that doesn't sound too dispiriting - I mean it in the sense of it's early days and it will get better! Got a mastectomy in my future - single in my case- so I've just had the chat with the surgeon this week about what to expect. Maybe reconsider if you can take more time off work? 💐💐

@TopOfTheCliff Unfortunately I didn't spot you after 3 weeks mainly in the sun coming back into a gloomy British port was disheartening.
The fact you were there has made me think how many thread members we pass by daily. Shout out to any other North Somerset dwellers on here.I
I have a glut of courgettes I might make a cake to enter in the flower show this weekend .
Love to all and have a good Sunday x

@AllotmentTime I’m a month post surgery. It just seems to be taking a long time to heal. They took all of the lymph nodes out from my right and a couple from my left. It’s just very sore and swollen and then this issue on the left with the wound and fluid collecting inside. I think it’s going to take some months if not longer to get it to a state I’m happy with.

I seem to be ok for a few days and then get very low at the weekend.

I also put a lot of pressure on myself.

I’m missing my family too.

@Florabritannica I had a big shed from day 20 and have been losing hair ever since, despite cold capping. I am now 5 weeks post first chemo and 2 weeks past the second. I can still get by with a hat and my remaining hair without it being noticeable, but I would say I must have lost a good 50% of my hair by now. Some bald patches at the top and back. For some reason, the hair at the front is holding up well, so it seems ok when I look in the mirror, until I try to use two mirrors to see the back and top...
@FairyWren7 It takes time to recover from surgery and therefore much patience. I had a single mastectomy with immediate reconstruction, and have had quite a bit of grief since. I am just over 2 months post surgery and still have a very big seroma on my chest, very tight cords running down my arm and mysterious nodules in my arm. One has been biopsied and they only got liquid out, so are not particularly worried, but none the wiser. Another has popped up along a cord. I also have swelling around my elbow area and am being checked for lymphedema on Thursday. So, feel quite low most days (managed to get some distraction from a nice dinner with friends yesterday). One thing that helps a bit is trying to count the things that have not go wrong, not just those that have. My abdominal scar from the DIEP reconstruction has posed me very little problems beyond tight skin for two weeks, despite being my biggest scar (hip to hip). The reconstruction is ok. The post surgical issues seem to vary from person to person quite widely, so it is probably also useful not to be unduly concerned if you have issues that others didn't have. They may have had others issues that you don't have. It is quite a difficult process, but useful to remember that after major surgery, it is probably not reasonable to expect to bounce back in just a few weeks..

@FairyWren7 I've recently had the second phase of delayed reconstruction after a single mastectomy. I knew I would have reconstruction so it was just a matter of waiting it out until I did.

If you continue to feel uncomfortable, you could consider scar therapy. An organisation called Restore offer free sessions around the country.

I do feel very disfigured post-reconstruction but it has achieved looking "normal" when clothed without a prosthesis, which I really appreciate. I think I will have some massive tattoos to hide scarring & imbalances in shape but have to wait for the scars to settle. I also feel "done" with the major medical interventions now, so can attempt to get back on a more even keel without knowing there are more things looming on the horizon. You will get there too!

Have you heard of the Keeping Abreast organisation which is support/info for reconstruction options? They had local meetings near me which I found very supportive before having surgery & after, & they also are online. Otherwise you might have a local breast cancer group with others in a similar situation. I'm very private but found it a help.

@isaxx I think you are right and I’m expecting a bit too much. This is defo the worst surgery I’ve ever had, much worse than gynae stuff.
I’ve got seroma or just fluid collecting in my left side and it seems to be making it uncomfortable. It just doesn’t feel right.

I’m not sure about my plastic surgeon either. Or the out of pocket cost (I’m in Australia) for the next part of the surgery. He wants me to have a diep. I want a shorter surgery and implants - I did want it all in one surgery but both surgeons said it wouldn’t have a good outcome. I don’t feel like he listens to me, he called me ‘young lady’, I’m probably about the same age as him (but currently feel 100) and he just started sewing me up on Tuesday because the wound had pulled without really warning me or telling me what he was going to do. Plus I never seem to get to have a proper conversation with him because he is so busy. I think I just need to go into the public system because I’m just getting paranoid about the cost of everything, despite having private insurance.

Too right about things varying. The reason they wouldn’t do one step surgery was that a different patient who was much more ‘trim’ than me had serious issues with her skin dying after a masectomy and reconstruction. I’m probably being overly sensitive but it’s like the 1950s are alive and well over here.

@HauntedDishcloth thanks for your response and the info. I think that’s it. I feel like I’ve been mutilated. Which of course I have been. If it was an arm or a leg or something it would be obvious. But it’s another sort of hidden shame. I’ve spoken to the volunteer service counsellors a few times. That was helpful and of course this thread is a godsend.

I’ve been watching reruns of sex and the city and I just miss my younger self and my body.
Nothing positive has come out of being female really for me, endometriosis and BRAC1. I think it’s going to take some serious work to get back to an even keel in life.

It must be nice to know that’s it. No more surgeries. I don’t have that part of the timeline yet. But I do start my radiotherapy on Tuesday. I really hope it goes well and that my skin doesn’t get too irritated.

Thanks to everyone who has responded, I really appreciate it. There must be thousands and thousands of women out there who go through these things. Xx

Fairy Sorry to hear you are struggling with the mastectomy impact. I had one side done Dec 21 no reconstruction then full node clearance Jan 22. Initially I was happy, cancer was out and recovered from both ops quite easily and happy cancer out. Then got hit with you will need chemo and lose all your hair plus I was never given a prothesis and got something free from a charity which made it very obvious. Once my hair got trashed with chemo I got quite distressed at both my breast and my hair. I had always been brought up as a child to look beautiful at all times and had always been quite attractive and suddenly it was looking awful, steroids also made my face swell a bit to add to the look. I was very angry with myself for looking so awful. I destroyed any photo taken of me. Now I am a year on from chemo end and 1.5 years from surgery and my hair is OKish now but a year from where I want it to be. I still desperately want to look like I used to, feel sad when I see people with hair like I used to have but have got to stage where I don't hate my hair. Scar has now gone and I got a better prothesis and that helped. I have a years wait for diep still and they said it will be uneven after, not very inspiring.

Things that have helped, a good prothesis, I use the swimming one from Ameona all the time, that makes it not visible clothed. Hair a good hairdresser helped but its mainly time for it to grow back and stop being so curly. Having other things that distract me and especially things where I feel I can achieve like we are getting kitchen redone next week and been organising that. So you don't feel that everything is failing. And also being kind to yourself and remembering you have been through a lot though I am really bad at that one.

Also found swimming helps mentally and physically. Avoiding mirrors if they trigger.

Just sending lots of love and good vibes for the amazing women on this thread. We are all dealing with such immense buckets of shit and yet in our various ways handling it with such dignity, warmth, and compassion. My heart goes out to everyone.