October 2019 chemo starters

[KathCurtis]

Hi Leaw, Lou and everyone 

so good to hear your news. Sounds like there have been some difficult ups and downs Lou, I hope you are now on a safe, smooth (and perky) path!

 I am well and just having two year follow ups. Have breast ca all clear and waiting to hear about the lung ca. I feel well and am adjusting to life after the trauma of diagnosis and treatment. And it definitely is a trauma. I find i am still processing and trying to adjust to how to live in the moment and enjoy what I have without worrying about the future. It’s a strange balancing act. There seem to be so many stories in the media about people dying with cancer atm, or maybe i am just noticing them more than i did in the past, anyhow I do get flooded with feelings for the person and their family and it stirs up my own anxiety. But generally I find daily life takes my attention and I am less and less focused on ca. I definitely decided against returning to work as a clinical psychologist, I don’t have the emotional resources for it, but I would like a part time shop job once i am not worried about covid. Maybe next year?

Leaw do fill is in on your news. And is anyone else still seeing these threads?

kath

x

[Purpletrunks]

Hi Leaw,

Good to hear from you. I'm good, mostly very happy and managing to get on with all the good bits in life. It's been a tough year, I was changed from tamoxifen to zoladex and kept collapsing and having some very weird heart stuff... they questioned heart damage from treatment which was scary. But, I've gone back to tamoxifen and seem OK now. 

I'm trying to get on the safefit trial but need sign off, and as I still have to see a cardiologist, everything is dragging.

I have another op in Oct to balance the other boob. I had a therapeutic mammoplasty, so have one lovely looking perky book, and the other swings much lower!! I think this will bring some closure, hopefully.

How are you?

Lou

[leaw]

Hello everyone, just checking in to see how everyone is doing/coping ? X

[KathCurtis]

It’s lovely to hear your news Emzlew. Wishing you and your family a happy healthy summer.

xx

[Emzlew]

Hi Kath

I'm so so pleased to hear you are well and it turned out to be ok.  It's so tiring being afraid of my own shadow! 

Congratulations on your daughters wedding!  What an awful time for us all in one way or another but missing your daughters wedding must have been very hard.  

I too have a teen, he is 19 but he is a home boy and loves his gaming so he's been in his element! He has ASD so doesn't really socialise outside of the house so it's been quite easy for us with him.  It's when he's out in the big wide world that I will start to worry.  

Homeschooling my middle man has been kind of ok too.  He's quite sensible and likes to get things done and out of the way so he can get on with his day.  He is a very sensible 6 year old! Then we have the 4 year old twins who have just been bouncing off the walls!!  I didn't send then to pre school as I was shielding but since having my vaccine last month I've sent them back and they are much happier! We really have been given extra on top of going through what we have and I'm super grateful that my treatment has continued throughout apart from when I had covid! 🙄 

My wife has been furloughed quite a bit throughout but thankfully we have managed to get through stronger than ever! It's actually been fun in our crazy, chaotic, loving bubble! 

I'm just looking forward to squeezing my lovely Mum out of shape!! 

Well done to your son for finding work within the NHS.  I think I may look into somewhere within the NHS once my twins are at school in Sept.  

Big changes for everyone this year so I just hope that things can return to some kind of normality as they say it will?! 

Lovely to hear back from you.  I often think of everyone and how you are all doing on this crazy roller coaster! 

It really is nice to hear from you xx

Much love xx

[Emzlew]

Hi purpletrunks. 

I finished my treatment last month too.  Herceptin and pertuzamab.  It has been a long slog but we are here and that is the main thing! 

When I cut my chemo curls off it has grown back less curly.  It still has a wave but definitely not as curly as it was.  Its really thick at the moment too.  I'm hoping the tamoxifen doesn't alter that for me. 

The tamoxifen is definitely making it harder to lose the extra weight I've gained.  And I certainly notice a difference between the brands.  They are all so different! 

Other than that, it's been a really crap year with covid but I've had my first vaccination and feeling a little less worried about it.  I just can't wait until I can give my mum a cuddle.  I've really missed Mum hugs going through all of this..

Well done on your raising awareness and your blog.  I also try and raise awareness as much as I can.  It's so important! 

I'm now just keeping everything crossed that life can slowly return to some sort of normality and we can be with those who we love and actually attempt to get out and enjoy the life we have! 

Although, it's starting to feel a little daunting being back out there in the world.  I've quite enjoyed being in a bubble with my family! 

Much love xx

[KathCurtis]

Hello all

Lovely to hear news again, thank you for getting i touch Emma and Louisa (fab blog btw Pupletrunks - you capture the intense mixed emotions perfectly). 
Thankfully I am well and apparently clear of cancer since the lung and breast ops Dec 2019. The enlarged lymph nodes turned out to be a false alarm- phew. It has been so strange to have had this covid year dovetail cancer treatment. What a weird, unpredicted, shocking experience we have all had. I spent most of last year not going out/in my garden. My children found shielding me very stressful. Youngest turned 18 last weekend and has had very low times, but the recent news about A level plans and return to school has lifted her spirits. She spent yesterday organising a trip to a music festival with friends in the summer - i do hope it can go ahead after so many cancelled plans and disappointments. It is hard to imagine such large events ever happening again isn’t it?

My 22 year old son came home to finish his degree last summer and hasn’t yet found a “proper” job, but he is now in a temporary role for the NHS and that has lifted his spirits considerably. At least he gets to meet new people and have in person conversations. He also got vaccinated, as did both me and my husband, and it is bringing us a lot of reassurance after feeling we were dodging death if we went out of the front door.
My oldest daughter got married at New Year, sadly we couldn’t be there because of lockdown. She moved to Canada with her husband in January and has a job out there. So she has been able to move her life forward despite all the obstacles in her path. We miss her terribly but do enjoy the window she is giving us into something new.
My husband has been a star and emotionally we have gone through more together in the past 18 months than we had in the previous few decades. It has been very bonding, though as I recover I find my old irritation with the things he doesn’t do is coming back (taps that need fixing/doors easing/tools tidying- it’s a long list!).
And perhaps we are now moving out of the nightmare times into something newly joyful? I begin to think that might be true and to feel happy much more of the time than I feel sad or anxious. I hope that is true for all of you too. It’s impossible to put into words the seismic scale of the emotional upheaval that came with the cancer diagnosis and then bloody covid on top of it. I expect we might all be a bit more ragged and torn as we emerge, but one thing is for sure, you appreciate your life and your friends with new intensity. Likewise the importance and value of this little group. It has been a hugely important part of my survival. Thank you all.

Much love

kath

xx

[Purpletrunks]

Here is my blog in case anyone fancy a peek... I've been rather humbled to have over 3000 visitors!! 

https://newshinyoldfaithful.wordpress.com/

[Purpletrunks]

Hi Em,

All good here. I finally finished treatment this month! I had herceptin and pertizumab 3 weekly in the chemo unit. Found it tough... I've had a mouth full of ulcers pretty much continuously the whole way through, and ulcers the other end too. But, the side effects have eased a little since I've finished and the fatigue has eased a lot. Feeling like the old me a bit more snd loving being back at work full time. 

Still on tamoxifen, which is OK except crampy feet and the odd flush. And my consultant is looking into starting me on Neratanib for a year to increase my odds a fraction more. It causes pretty bad diarrhea though so who knows how far I will go with it. 

I have a full head of chemo curls. The grey colour has mostly gone, back to my pre chemo colour. EM, when you cut all your hair off did it grow back straight?

It's my 1 year anniversary of NED tomorrow. Might have a little cry... what a year!! But generally I'm managing to stay positive. I have launched a fundraising and awareness campaign for BC and was on the radio last week. Along with my blog, it helps me to frame the ordeal as 'past'. 

Hope you guys are all OK xxxx 

[Emzlew]

Hello everyone, how are you all doing? 

Kathcurtis - I do hope all was OK with the enlarged lymph node on your chest? 

Leaw - How are you coping with Tamoxifen?  Have things eased for you?

Fingers crossed lockdown ends as is planned! 

Emma xx

[KathCurtis]

Hello Lydia

Sorry to hear you are joining the ranks and hope treatment goes smooth and swift for you. We were all October starters last year 2019 so can tell you that it is do-able. I hope some more new people join the thread for you, or perhaps an October 2020 thread is needed?
It is lovely to hear how everyone else is doing. What a crazy year we have had.

 I am now five months post treatment, am getting more energy and have my hair a reasonable, if short length. I had quite a dip in mood with the exhaustion of chemo but my spirits have definitely lifted as I recover. I had an enlarged Chest lymph gland On my one year CT and am waiting for PET result. It’s a bit of a blow, I would have liked the all clear, but I am not feeling as daunted as i did with initial diagnosis and hopefully it can be treated 🤞.

Thinking of you all and wishing us the energy to live our lives with joy.

Kath

xx

[UmLydia]

I discovered my lump in the summer too, on holiday in the shower. I am 42 eat healthy, breast fed for endless years etc and am the mother of three kids under 10.  I wasn't worried at all about the lump until the biopsy guy looked worried end of August. At least it didn't ruin my summer.  I also have Her2 / hormone sensitive cancer, lump in left boob and lymph nodes and will need 5 months chemotherapy, mastectomy, radiotherapy then years of hormone treatment. I started chemo last week so far it hasn't been too bad, just the first couple of days I slept all the time. I think I can put up with anything as long as they manage to stop the cancer from coming back. Luckily i won't have to work this year through treatment. I am allowed sick leave although I am not on a permanent contract so next year not sure what will happen. Seems very far away and I probably won't be the same person I am now. I am a teacher and love my job.  The doctors say the most important thing is to stay physically active, make sure I walk every day. I already had a healthy diet, will try to eat more fruit and drink lots more water. 

[Cherryp]

Spoiler

😂I know what you mean about the curls. I must be at least 2 inches taller than normal due to the curls and I am already 5’10”! 



I saw the surgeon last week and had CT scan to check lung nodules and mammogram and ultrasound to check breasts  the nodules have not changed again so now convinced they are just scar tissue and nothing to report on other scans so I’m clear so far. A bit of fibrosis in my lung from the radiation but nothing to be too worried about so for a TNBC girl I think I’m doing OK. One advantage of triple negative means I have  no follow up drugs which at first I was worried about but as that means I have no extra side effects I’m starting to see the advantage!

[leaw]

Hi Em, I’m on tamoxifen too and struggling with fatigue, hot flushes and aches & pains. I went back to work full line in July but I have had to speak to my employer and temporarily dropped my working hours in half due to the fatigue, I work 2x12 hour days & 2 x 12 hour nights, these have been changed to 6 hour shifts, so will see how they go x

[Emzlew]

Hi everyone. 

How are you all? 

I've just had my first haircut.  I couldn't bare the chemo curls any longer.  I've never had curly hair before and it was growing curlier around the back and sides than it was in the top.   It looked like a mullet!  They were a constant reminder too so I've gone really short again to get rid of them! 

Feeling much more like myself again 😊

I'm doing OK most days.   I have the fear take over my emotions occasionally but I won't let it consume me.   

I think the worst thing at the moment for me is the Tamoxifen.  I'm really struggling with the side effects and I'm going to message the breast care team tomorrow for some help.  I'm pretty good at accepting that this is what needs to be done but I'm just hoping there is something that can be done to help.   Is anyone else taking tamoxifen?  How are you finding it? 

I hope this message finds you all well in this very strange world we are living in?! X😘

[CureDars]

Hi Leaw- and other ladies in Oct group,

I have to admit being terrified of the TNBC diagnosis at the beginning of all this. At the time my BCN said that I wouldn’t feel the same in 12 months- and I Certainly didn’t believe her. At the moment I’m still in recovery mode from the 5 day rads and don’t feel that it’s ‘after cancer‘ yet. However, when energy returns and I feel more me I hope that ‘the fear’ won’t dominate life.

Re hair- Never had a curl in my life! 4 months after chemo finishing my hair is streaked silver grey, flat on top and curly back and sides 😄

[Shi]

Cherry p 👍 get some cloud 9 straighteners 😁 over 2 years and chemo curls still wild 😂😂 cloud 9 straighteners instantly straighten them out 👍👍 😁😁💕💕✨✨Shi xx

[Cherryp]

I had been dying my hair to cover the greys for so long I had forgotten what colour it was naturally but I think it is definitely darker where it isn’t grey which is probably about 50/50 ish. It is also curly and I have never had curls. It has a life of its own so just always looks a mess. But I’m glad it’s back and eventually I will be able to justify a hairdresser to help me learn how to look after these curls while they are here. I heard they grow out after about a year so I’ll be back to my usual straight eventually. 

[Shi]

😍❤️luna has grown lots kath, what a beautiful dog she is 😍❤️ and looking proper pampered 😁 anyone started getting the chemo curls yet 🤪🤪 It really is like having a kinder surprise head 😂😂 you have no idea how hair is going to return 😲 hope brows and lashes are getting there for you now, don’t forget to get that mascara on no matter how short, it helps train them lashes to curl as the grow 👍😘💕💕✨✨Shi xx

[KathCurtis]

That’s lots of hair Cherryp 😯. Is it different from before? Mine is now black - previously a mousy brown, so it’s a bit of a shock!

That energy really does take its time to come back. Waiting ⌚️ 
x

[Cherryp]

Gosh Luna seems to Be be about twice the size now! Time has really flown. 

I find I’m living a bit in limbo until next set of scans in October and that then I need to get out and live life to the full. Silly but can’t seem to move on until they can confirm that so far it has gone. 

my hair is about 1.5 inches now but I still have some neuropathy in my toes and my energy levels are still pretty low. 

[KathCurtis]

Hello Shi

Luna is getting bigger and gooder every day 😝. We gave her a “shower” in the sunny garden yesterday using a watering can so we could get warm water as she isn’t too keen on the cold hosepipe (except to drink). 
She is a shiny sweet smelling doggo now 😊

 why do my photos always import upside down on this site? 🙃

xx

[Shi]

❤️Kath hows Luna? Bet she covers your lap now ❤️❤️💕💕✨✨Shi xx

[KathCurtis]

Hi Leaw

i desperately wish I could go back to the time when life seemed indefinite, I feel the uncertainty of my future is a backdrop to everything now. That isn’t to say I don’t feel pretty good most of the time and enjoy each day, it’s just the shift to an expectation that life is limited colours things. At least every few days I have a moment of enormous sadness for what’s been lost, but I am not filled with terror as i was in the early days of diagnosis. And maybe living life with this new perspective will mean i make the most of life - especially once I feel safe to go out again. My doctors say September.

How are you dealing with it? And everyone else?

love

kath

xx

[leaw]

Hi, hope we’re all doing good ladies, how’s everyone coping with “the fear” (as in fear of the cancer returning) x

[KathCurtis]

Thank you. Reassuring to hear you are coming through it CureDars!

love to all

xxx

[CureDars]

Kath,

We spend so many months with all this that we forget how we use to be. In fact I use to imagine that I would never recover enough energy mentally and physically to get on with life. As your body recovers from the treatment onslaught you will gradually feel better. It’s all been made worse because of Covid and usual help not available at the moment. But you’re through. Well done!

[KathCurtis]

Oh i posted a reply but now it isn’t showing? Weird. I just said it was nice to hear we are all finally getting to the end of this traumatic journey. I had last chemo 2 weeks ago and no further treatment now, just follow up. It still feels emotionally challenging at times but as I feel better each day I spend more time feeling positive. Wishing us all calmer waters ahead.

love

kath

xx

[Cherryp]

I think I read in one of the many leaflets I've had that I should keep going for 2 years! Thanks for the reminder actually!

[CureDars]

KathCurtis,

You must be through chemo now- I hope. How are you? x

[CureDars]

Hi October group,

Good to hear Cherryp that you are nearly through. I finished 5 last week. Luckily no skin problems but some severe tiredness. I had TN too but no boosts in my case. How long have you been told to do the arm exercises for? Take care. x

[Cherryp]

I have my last radiation tomorrow. I have had 5 all over sessions (it would have been 15 but a recently completed trial proved 5 was just as good) and then 5 boost sessions which are more targeted because I had triple negative. The radiation has been tiring but so nearly there now. 

hope you are good?

[leaw]

Hi ladies, just a little check in, how is everyone getting on? All treatment now complete? X

[CureDars]

CherryP,

That’s great news. You got the results quickly. Build up your strength and keep well for the rads.

[Cherryp]

My dreams came true. Surgeon rang today and my tumour shrank from 30mm to 14mm and of that only 20% was active cancer so chemo did work well even if I am still struggling with my toes. The margins were clear and so was my lymph node that they removed so just radiation to go now. Starting to think of myself as cancer free now. Is that wrong? 

[KathCurtis]

🥰 good night all xx

[Shi]

Hi kath ❤️ Beautiful photo of Luna ❤️ She’s growing up 😁 but still got the puppy sass 😂🤣😂🤣 💕💕✨✨Shi

[CureDars]

Kath,

You cheered us all up with your photos a few months ago. Thank you.x

[KathCurtis]

Sort of got it - just had to make image small, but it’s upside down! 

[KathCurtis]

Hi Shi

Good to hear from you. How are you doing?

Luna is beginning to get the hang of how to be a good doggo and is a sweet silky seal of a puppy most of the time, except when she is pulling up my plants in the garden 😖. I am trying to attach a photo but not having much success, will try in separate message

love

Kath

xx

[Shi]

Kath, hows that gorgeous puppy of yours doing? 💕💕✨✨shi xx

[KathCurtis]

Very good to hear you are putting surgery and chemo behind you, Thank you for encouragement Curedars 😘👍

And it all sounds very normal and familiar to me ajatron! Some days our sense of humour just can’t be found.

love to all

kath

xx

[ajatron23]

Hi all

i had to finish my Paclitaxel treatment early due to peripheral neuropathy which was a bit of a shock to say the least. 

i have just started 4 weeks of radiotherapy which is fine but in the current climate a bit of an additional worry. Having herceptin injections too and also on tamoxifen. Quite the roller coaster. 

mood is all over the place. Hair is growing back at a rate of knots!!

is it normal to feel strange and in limbo? I’ve just upset the family as they were all gently teasing me about general stuff and I didn’t take it well. Normally I’d join in on the joke but not today. I feel like I’m operating it two parallel worlds. It’s very odd. 

much love to all. We are all getting there in our own way xxx

[CureDars]

Hi Kath,

Good to hear from you-still in chemo land! No wonder you burst into tears with all this extra anxiety around Covid. You seem in fair spirits overall and the weeks will pass. I cannot believe it is only 53 days since my last chemo and 28 days since surgery but the pre- cancer person is returning! Mentioning this to encourage you. x

[KathCurtis]

Hi all

Good to hear how everyone is doing. It seems like treatment can be unexpectedly never ending, but as I am also tn it’s good to be forewarned. I have two more EC rounds over next 4 weeks and should then be done - apart from bone strengthening meds once every 6 months for 5 years. I find myself mostly cheerful but then at times tears unpredictably overcome me. I am definitely still processing the shock of diagnosis and treatment impact, and CV isn’t helping!
Working from home with a little one and bc sounds hugely challenging Claire, that husband needs to get on board and share the strain! 
Wishing us all calmer waters and many sunny days ahead.
Love

Kath

x

[ClaireL]

Hi all,

Glad to hear that everyone is progressing well in their own ways. I hope we can all stay on a good path. 

I'm triple negative too and have just been put on tamoxifen for 5 to 10 years. I had a slight response for estrogen so they are trying it out. Apparently there's nothing to lose by being in it and so as long as my side effects are minimal that's my plan. 

I'm struggling a bit with being home, looking after my three year old and trying to work too. It's all just chaos at the moment. My husband doesn't particularly want to help either. 

At least we have had good weather and we are lucky to have the garden to play in. 

Here's hoping life can return to normal soon! 

Sending love x

[Cherryp]

I’m triple negative too. It really hadn’t occurred to me that the histology might suggest further treatment after radiation so thanks for that. Always better to be forewarned! 

Glad your radiation is going ok PurpleTrunks. Just rest assured that the drugs after are giving you more insurance. 

[CureDars]

Purpletrunks,

Good that your rads have started. Another hurdle will soon be achieved. 
I don’t know anything about the drugs you are taking but presume your oncologist/surgeon believes this is the best treatment to prevent recurrence. 
After being under the impression for 7 months that there was no further treatment for me after radiotherapy- being triple negative- the surgeon said that the histology results showed that their might be some MARGINAL benefit for me to go on a drug beginning with L for 10 years. I was rather surprised! Realising we all react differently I do hope your side effects improve very soon. 

[CureDars]

Cherryp,

Delighted that you are so cheery. Impressed that you are doing the exercises already! Just concentrate on getting as strong as possible for the rads.

[Purpletrunks]

Gorgeous post CherryP. So pleased that your lumpectomy went well 😊😊

I started radiotherapy on tuesday. I am having reduced sessions due to CV19, but I'm ok with that. So my last is next thursday. I wish I felt like I was on the home straight... herceptin and pertizumab until January for me. They are knocking me a bit, so I'm feeling  little fed up about how crap this year could be. After surgery I was out walking up my hill every morning, and the h&p have stopped that. My white bloods are a bit low too, hopefully as a hangover from chemo. I'm hoping they wint be low all year!

But, in keeping with all your gorgeous positivity, today I am grateful for:

My family and especially my children.

The sunshine!

That I can still go out walking each day

My treatment hasnt been stopped.

My new boob is great, surgeon did  fab job.

😊😊😊😊