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October 2020 Chemo Starters

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Dear NAJ, I’m so pleased you are looking on the bright side and taking an interest in your hobbies, you have been through so much. I don’t know what I would have done without my Labrador Bella, I’ve cursed her when I have had to walk her, but I’m sure it did me good, I chat to her all the time and she understands what I’ve been through 😀. I don’t think my toe nails have much longer to go, they a rocking in the nail bed 😬, but been through worse.

Happy Easter to you all and stay strong 💪💪💕💕💕💕💕

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi NAJ

Great to hear about your hair and lashes coming back, mine is just starting, but not at the nape of my neck or the very front, more at at the sides, and mostly white. Like you I hope it will all join up at some stage. The eyebrow sounds a bit challenging. Sometimes I draw eyebrows on with a brow pencil but never very successfully, however they are supposed to be sisters, not twins,  I read somewhere. The best thing that happened to me  was that someone thought my new wig was my real hair, and was surprised it had grown back so quickly, which is great because I was feel self-conscious wearing it. Am clearly far too vain, ‘nobody is looking’ I have to remind myself.  My nails are still yellow/purple and gnarly, but slowly normal pink nails are growing.

 

Great to hear about the trips you have planned and your flourishing allotment. I had an allotment when my boys were younger, however it had a lot of mares tail, a prehistoric plant with deep, spreading roots. I did enjoy therapeutic digging but was not particularly successful at cultivating any useful crops, apart from courgettes, runner beans, plums from a tree that was there already, and potatoes. And then would have far too many  of them for a short period!  But it was lovely place to go and the other allotment holders were very friendly and very free with their conflicting advice🤷🏼‍♀️!

I am sure you are missing your dog so much, it must be really tough.

Happy Easter

Carmen🐣

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Mandy

When the radiotherapy doctor rang me to explain it all and get my consent, she said the effects of the radiotherapy can last up to 4 weeks after the active treatment stops so hopefully you should start to feel better soon. 

My radiotherapy is being done at a different hospital to where I had the surgery and chemotherapy. However I have had a few post chemo issues and the breast care nurse at the original hospital is very good and she is the one I go to for help, so I hope it will be the same for you. You should definitely ring them if you are still in pain.

Thanks for the encouragement about the radiotherapy 😊. I worked out that when mine finishes it will be just under a year since I first found my lump. The 6 months of being poisoned was definitely the worst part so thank heavens that is now over. I just want to get the radiotherapy over with now,  pert or not! Althougth here is still 10 years of letrozole ahead.....

Happy Easter and good luck, 

 

Carmen 🐣

 

 

 

 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Michelle

I am so sorry to read that you have been through chemotherapy and radiotherapy before, that’s really tough. Thanks for the info about the possible effects of radiotherapy. At my planning session I had to practice holding my breath, which in fact I am able to do, however it’s quite difficult to take a relaxing deep breath with both breasts on display, and being marked up with various coloured pens, in a room full of people!

 

Wishing you all the best going forward.

Carmen 🐣

Guest user
Not applicable

Re: October 2020 Chemo Starters

Hi Mandy,

I finished rads two weeks ago.  Compared to chemo it was a doddle.  My skin has been fine apart from an area right at the centre of my chest where I caught the sun gardening and that has been itchy.  I had a mastectomy so no 'pertness' to report but I also used to sleep on my front and it's still too painful for that - my ribs feel a bit tender and where I had my surgery some breast tissue was left behind so I'm not flat and that hurts if I lie on it.

I've been taking Letrozole for around six weeks now.  First batch was Accor and now I'm on a generic brand.  At times I feel slightly nauseous but other than that nothing to report.

My eyelashes are growing back nicely - hurray!!!!  However, only one eyebrow is growing back so I'm soon going to look like I got drunk and someone shaved one off for a joke.  My hair is growing back steadily, straight and grey like it was before.  It's fullest at the sides so I'm hoping it will eventually join up at the top of my head.  There is a strange bald patch about the size of a 50p on the side of my head but I'm hoping that will go too.  All of my finger nails have peeled off and look terribly ragged but over time the new nails will grow long enough to be smoothed and shaped.  I suppose it's all progress at last.

Looking forward I've booked three short breaks, two camping with my foster child and one staying in a swish hotel with the bikers.  My allotment now looks like it belongs to someone as I am going there every day and weeding and we've started talking about getting another dog.  It's still a bit soon for me but it's important to James that we have a dog (or at least the promise of one).

Hope that everyone has a good Easter and is feeling well enough to indulge in some chocolate.

NAJ xxx

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Hi Carmen, yes I’m 61 and I was large breasted which I always hated. Now since radiotherapy the breast I had a lumpectomy etc is a great size and yes pert. I wish the good one was the way but that won’t happen. I must say though, I often used to sleep on my front, and I did the other night, and it was still painful and all that day I got shooting pains. I wonder if that’s normal and I’m still healing?  I finished radiotherapy 3 weeks ago, and not heard a thing from the hospital, I do feel as though I’ve been dumped.  I want to ask questions about the pain and about the Letrozole.  Anyway if I don’t hear soon I’ll ring the breast care nurses.

Carmen, radiotherapy is a walk in the park compared to chemo, I hope it all goes well.

I hope everyone has a lovely Easter.

Mandy 💕💕💪💪💪

Michelle21
Member

Re: October 2020 Chemo Starters

Hi Carmen

thanks for replying to my questions. Ultimately I guess everyone is different and therefore reacts differently. I’ve had chemo before but a different regime and was lucky then and fared well with good results, I will hope for the same this time. 
Re radiotherapy I have had that before too on my right side. My skin did break down, although I had 20 sessions and I think by that time I got fed up with showing everyone my breasts every day. For a few months after radiotherapy my breast felt very firm and I also joked it was ‘pert’. It is 2 1/2 years since I had rads and it is still more pert than the other side but not as hard as it was. 
My left side obviously didn’t want to be left out because now I have to go through it all again. 
Most people I know who had rads in 2018 found it more than ok.
I hope it goes well for you and that your neuropathy goes away soon xx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Me again, radiotherapy query this time!

I’m starting 15 days radiotherapy on Thursday, and I remember being told the radiotherapy might change the shape and size of my breast. The doctor used the word ‘pert’ which made me smile as at 64 and after breastfeeding 3 children, it’s been a long time since my breasts could have been described as pert, if they ever were. 

Has as anyone noticed any breast changes after radiotherapy? 

Thanks

Carmen 🌞

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Michelle 

 

I had 4 x EC followed by 12 weekly doses of paclitaxol. I tolerated them pretty well, but stopped after 11 doses of the taxol as I had peripheral neuropathy which I still have, but it’s only been 5 weeks since my last dose. My bloods were pretty much within normal limits throughout luckily.

 

In another forum, someone commented that we only post about our issues so we don’t hear from those that aren’t badly effected by different treatments,  so we’ve get a distorted idea of how people fare overall. When you read about every possible chemo side effect, which I guess legally we have to be informed of, its enough to make you run for the hills I know. I was very reluctant to have chemo and it’s been a long haul, but it helped me to think that if it was doing this much damage to my hair, nails and nerves , it was destroying the cancer cells too, although my hair, nails and nerves will recover.

 

Wishing you the best of luck with your treatment going forward.

Carmen 🌻

 

 

Michelle21
Member

Re: October 2020 Chemo Starters

Thanks Jo, I will let you know how I get on,  I hope everything else runs smoothly for you xxx

Jojo1447
Member

Re: October 2020 Chemo Starters

Morning

it would be around 8 I think.  I ended up missing 3 altogether but they allow for problems apparently.

week after chemo ended I started with the tingles and numbness in fingers and toes but that is getting better now chemos stopped but just keep an eye out for it.

let us know how you get on.  Good luck

 

Jo x

Michelle21
Member

Re: October 2020 Chemo Starters

Thanks for the reply Jo it’s really helpful. Did you end up having 8 or 11 taxol before your bloods played up? I have been warned a blood transfusion is likely on the carboplatin. 
Good luck for your op, I’ve had a lumpectomy on my other side and it was fine and fairly quick recovery. 
Michelle x

Jojo1447
Member

Re: October 2020 Chemo Starters

Hi Michelle

I started on EC for 3 cycles then moved onto Carbo every 3 weeks and taxol weekly.

To be fair i think I've come off lightly o the chemo front when i hear of some of the groups horror stories.

I've finished chemo 3 weeks ago and only side effects i suffered were 2 days of fatigue where i couldn't get out of bed t the beginning of EC.

Towards the end my bloods started acting up delaying a treatment and the last one was cancelled as i was anaemic and they did a blood transfusion.

I now have op date set for 16/4 which i am a little apprehensive about but looking at it as next stage to recovery.

 

Hope it goes well for you

 

Jo x

UmLydia
Member

Re: October 2020 Chemo Starters

Hello Mrs Mcquincey, congratulations on finishing chemo at last!! You are so young... I hope your immediate reconstruction goes well. It's good you have that option, my oncologist said I couldn't have immediate reconstruction due to radiotherapy and survival chances. At 43 I think it is still relatively young to go flat but I am dealing with it ok, not much choice really. You have a beautiful family. 

 

NAJ I am so sorry about your dog. The end of the treatment is an anticlimax I agree, you need lots more time to recover. That is really terrible for your mother in law. I am so sorry. 

York 75 that's great you have hair. Mine isn't growing back properly yet, have bald patches at the front and to my utter horror it seems to be growing back mostly white. Oh my God. The kids say I look like grandad. Getting a tiny bit fed up of my headscarves but there are worst things. 

Start radiotherapy on Friday. 

Hugs to everyone

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Good luck for your scan results Mrs Q. It’s so hard waiting for the results, someone in another forum call is ‘scanxiety’ which sums it up. I am sorry you are going through all this when you are so young.  It’s a big surgery but it sounds very well planned.

Take care, Carmen x 🌞

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Dear NAJ

So sorry to hear about your mother in law’s prognosis, and that you have lost your dog as well. That’s just too much for you to cope with on top of everything else.

As to finishing treatment, I’ve still got my 3 weeks of radiotherapy, but great that your’s is behind you now.  I really liked my surgeon and she always makes a point of talking to me if she sees me in the clinic, but I feel that sadly there is a relentless conveyor belt of newly diagnosed women behind me, and I am just one of so many the team has to care for. But at the same time I want to feel special, and treasured! I’m waiting for the breast care nurse to get back to me about my swollen arms, feet and now, weirdly, eyes. She said she would ask the oncologist again,  so I am in no-mans land between shall I wait to hear from her or shall I ask the GP? Telephone consults just aren’t the same as face to face.

Take it easy as you recuperate and convalesce, sending you healing thoughts. It’s supposed

to be lovely weather for a few days, 

Carmen x

 

0CD69929-B7E1-4DBB-BFBE-0DF3FF7C97C3.jpeg1D994FDE-0EF6-44CE-8BF7-04C958A4B871.jpeg

 

Michelle21
Member

Re: October 2020 Chemo Starters

Hi I was wondering if anyone in this group is Triple Negative and has had carboplatin as part of their treatment? I have just been diagnosed and hope to start chemo soon and would like to know how you got on with it. 
thanks 

Michelle x

Guest user
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Re: October 2020 Chemo Starters

Firstly well done Mrs Quincey on getting this far.  I hope your MRI is good and your surgery trouble free.

Approaching the end of treatment I didn't really know how I felt about it soon being over.  It was a bit of an anti-climax really.  I suppose it wasn't helped by having to have my lovely dog put down on Friday and then getting a call from my mother-in-law on Saturday to tell me she was terminally ill. 

My last radiotherapy session was on Tuesday this week and the next thing is a telephone consult with the oncology nurse in June and an appointment with the breast unit in August.  While I feel relieved that treatment is over I'm scared about the future.  Hopefully I will grow more confident as time passes.

Love to everyone 

NAJ xxx

 

mrsquincey
Member

Re: October 2020 Chemo Starters

Thank you both.

I will be having a mri on the 12th to see my response to chemo (fingers crossed the best result).

I will be having hopefully a uplift and reduction in my good breast as my boobs are huge. And on my bad boob a masectomy due to dcis also and a immediate implant.

 

But we shall see. Im obviously young and mentally i feel like i couldnt deal with being flat. 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Well done Mrs Quincy, that’s an important milestone! Good luck for you surgery and make sure your lovely family indulge you while you recover from the chemo 😊.

York-75
Member

Re: October 2020 Chemo Starters

Fabulous news that you have finished chemo, mrs Quincey!

That is such a milestone, I hope you are feeling relieved, happy and not too exhausted and broken. I kind of swung between the two for a bit.

I hope surgery goes well, what are you having? I had a lumpectomy and it was much easier than chemo.

My last chemo was 16th December and I have been able to go without a hat or wig for about 3 weeks now. Very short, but it is hair! 
lots of love to you, and the rest of our October crew. 

mrsquincey
Member

Re: October 2020 Chemo Starters

I feel like im the last to say this out of our group. But yesterday i completed all my 8 rounds of chemo. I still habe surgery to come but i am so relieved. I will also be having herceptin and prejeta till dec but will be having it via the ohesgo injection that will only take 10 mins, meaning i also got my picc line out yday wooohoo. My children and husband were able to see me ring the bell and brought me lovrly balloons and flowers. It was also my 34th birthday and the

IMG_20210323_184421_461.jpg

sun was shining what felt just for me. Im so proud of myself and my family. 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Thanks for the article Umlydia, it is really helpful to think about how to look after ourselves and allow ourselves time to regain our strength and how to deal with the future. 

I do feel time slipping away as it has been such a strange year. But it was my 64th birthday yesterday and by this time next year I plan to have moved from north London to the south coast, and to have found myself a new man, (although the prospect of internet dating fills me with terror as I met my ex when I was 19)! I left my partner of 42 years, two years ago as we weren’t happy, and it has been very traumatic getting him to agree to sell our house, which took the threat of court action to finally achieve, and frankly he put me through hell, then there was covid, and then breast cancer! But as you say NAJ I don’t find it helpful to be told how brave I am,  I didn’t have any choice except to keep putting one foot in front of the other. I guess people just don’t know what to say. I don’t feel brave, I remember vividly that when I lay down on the operating table dressed in a back opening hospital gown, oversized paper knickers and attractive white stockings, with marker pen all over my left breast, I just thought to myself I can’t do this and wanted to leg it out of the operating theatre as fast as possible, but it was too late, as I already had a blood pressure monitor clamped to my leg.

NAJ I hope you can rearrange your trip to Russia. I went to St Petersburg in 2001, with my mum, as it was where my grandmother was born in 1903, and it was amazing. It was June so it hardly got dark, and we had wonderful weather. My only holiday plans so far this year are to spend a week in a caravan in West Wittering in July with two old friends, I can’t wait. I’ve also been lucky to have some really supportive friends who have helped me so much over the last few years.

Hope everyone is doing okay and taking good care of themselves.

 

Carmen 🌞👍🏼🌷

 

 

Guest user
Not applicable

Re: October 2020 Chemo Starters

Hi UmLydia

That's a really useful article.  I felt like I'd read a passage of it somewhere before but it was certainly worth reading the whole thing.  I've printed it out so I can read it again from time to time to remind myself that what I'm feeling is 'normal'.  

The worst thing anyone asked me was 'what's your prognosis?'  I also found it a bit difficult when people so blithely said things like 'oh that's very curable these days' like it was an ingrown toenail I was suffering from rather than something that would kill me if it wasn't treated and was scaring me ****less.  I'm upset that a friend I saw every weekend has not been in touch at all since I told her of my diagnosis.  I've also found it irritating when people said 'you're so brave'.  I'm not brave I just didn't feel there was any choice but to go through the treatment.

On the plus side the friends who have been supporting me with phone calls and emails have been amazing, especially my best friend who came with me for the diagnosis and then took me to every chemo, staying overnight for a couple of nights to make sure I was ok, and then moved in to look after James when I was in hospital.  When I count my blessings I count her twice.

Hoping everyone still going through treatment and those who've reached the finishing line are doing as well as they can.  Three more radio sessions to go for me. 🙂 

NAJ xxx

UmLydia
Member

Re: October 2020 Chemo Starters

Here is the article. 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...

 

Link doesn't work but google:

after the treatment finishes then what Peter Harvey

 

UmLydia
Member

Re: October 2020 Chemo Starters

Hello everyone

So sorry about your psoriasis Mandy. So unfair to have to put up with it  after all of this. I really hope it calms down soon. My mum gets it badly on her back and legs. People who say great you've finished all your treatment have no idea. They might be well intentioned. But they have no idea. My cancer doctor said at my first appointment to discuss treatment: often the most difficult part is the "afterwards". I was confused by what he meant. He meant when the treatment has finished. He said people can struggle after treatment to get back to normal. I read a really good article by a psychologist about it, will post it if I can find it again. 

Carmen thanks for your advice about tattoos. They are not really my thing but some of them are quite pretty. I am finding the masectomy the most challenging part of my treatment, much more than chemo. The roller coaster cliché is so true. I feel fragile and stronger at the same time. Do you feel ready to go back to work? My doctors say we need a couple of months after treatment finishes to recover before going back to work, and then they prefere if it is part time at the beginning. I teach and won't be going back until September. From the beginning of treatment they said i would need a year off . I definetely feel I am getting my energy back now but sometimes have slumps. 

Linda thanks for the photo... it looks very sore. Goodness so much to put up with. Hope it has calmed down. I have appointment tomorrow for the tattoos. They are going to zap lymph nodes in the throat as well as frankenchest. 

It's so funny now we have all discovered we need to live in the present and have amazing adventures everything is banned 😅😅😅😅. Tough luck!!! 

I certainly agree no time like the present. I think I already knew that but will appreciate it even more. And maybe put myself first sometimes. When I was diagnosed the only thing in thought was I need to live for my children. But now I think I need to live for me as well. 

Big hugs to everyone!!! 

Guest user
Not applicable

Re: October 2020 Chemo Starters

Hi Linda,

I completely agree with you that life is for living.  It's all too easy to keep putting things off assuming there will be time in the future.  Martin and I had so many plans for when we retired from fostering but he died at just 58 years old. I'm lucky that I have a foster child who is always up for an adventure, a best friend who likes to visit new places (especially if there are gardens) and a daughter who is a fabulous travel companion.  I was 60 last year and my daughter was 30.  We had a bespoke trip to Moscow and St Petersburg planned for last April but that was cancelled due to covid.  Maybe next year....  

On the adventure front my foster child persuaded me to take him on a flight in a bi-plane a couple of years ago.  It was as old as my dad and made from wood and painted linen.  I've never been so frightened in my whole life.  At one point the man in the seat next to me took a photo using flash and I thought there had been an explosion and that we were about to drop from the sky like a stone.  I don't know how I didn't scream and I'm still traumatised by the memory 😂.  James' birthday is next month and this year he's decided he wants to take a trip in a helicopter.  Think I'll feel a bit safer in that.  Let's hope he never wants to do a sky dive or a bungee jump.  

Good luck with convincing your husband.  There's no need to feel guilty at being a bit selfish every now and again - I think we've earned it.

NAJ xxx

linflo58
Member

Re: October 2020 Chemo Starters

Mandy

Sorry to hear about your psoriasis., it’s so unfair when you have already gone through so much. I think people are trying to cheer us up when they want to celebrate the end of our treatment. I don’t feel like it’s the end as I felt worse 2 weeks after my treatment ended, and still have Herceptin drugs every 3 weeks for a year. I know we are extremely grateful for the treatments as without them we wouldn’t be here. It doesn’t stop us from having the odd day of self pity. I’ve decided that once I am ‘well’ the grass will not grow under my feet, life is for living- just need to convince my husband! I had cancer 4 years ago & must admit my life reverted back to its normal routine because I was happy with my life as it was. Now I think “what if it comes back again in another 4 years?”. Also covid has made me realise how we always assumed we could do what we wanted: family get togethers, weekends away, holidays abroad, nice meal out with friends, but now there are no guarantees anymore. But, we have to differentiate between doing something because we genuinely want to do it, or that we feel we should do it. That will be my biggest issue. 

Sorry for such a deep post on a Sunday evening.

Hope all mums have been spoilt and had a lovely day xxxx

Linda

Guest user
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Re: October 2020 Chemo Starters

That looks REALLY sore. 

I've had eight sessions now and while my skin hasn't reddened yet it's a bit tender at the side of my ribcage.

Oh well ....

I've only got one telephone appointment during radiotherapy to check how it's going and that's on the day of session 11 - I'm not even sure who's calling me.

NAJ xxx

 

 

 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Linda, that looks quite sore and not what I was expecting, but good to be prepared, thanks for uploading the photo.

Mandy sorry to hear about you’re psoriasis, my son has it and I know what a problem it can be. I know what you mean about everything thinking we should be ‘back to normal’ when it feels far from it. Today Ive got a big stye in my eye and my forearms and ankles are as swollen as ever 😕

But I’m distracting myself with the idea of a tattoo.  Umlydia I should have said they are for women who don’t have have reconstruction too. 🙂

AA77A1D7-43EE-4B69-BA03-CB7594B805BE.jpeg511B5648-1FF7-4D8A-92D1-DE285DF47359.jpeg

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Linflo58 you poor thing, I know exactly how you feel. My psoriasis has been ok for for a number of years now, it’s been up and down since I was 16 ( I’m now 61 😬). I finished radiotherapy on Monday, but 3 weeks after I finished chemotherapy, my psoriasis started to come back aggressively. Now 3 weeks later it’s so bad and it’s everywhere, even on my face ( which hasn’t happened before). The thing is people around me say ‘great you’ve finished all your treatment, now you can get back to normal’ but I’m in so much pain and feel so low. I know this will go away with time, but it’s such a blow to my self esteem. It makes you wonder what’s next. I’m not usually so pessimistic, but ..... 

Mandy xxx

 

linflo58
Member

Re: October 2020 Chemo Starters

Carmen

That must be a blow for you as you had it all planned. The actual 15 sessions were fine but it was about a week after treatment ended that it became uncomfortable for me. You may be lucky, you never know. I certainly could not wear restrictive clothing, have lived in cotton pyjama tops for the last 2 weeks. This was me one week after the last treatment. Apparently this was normal, so I shouldn’t worry, which I felt better about. Just have to be patient. It looks swollen but isn’t. I have always had a ‘pigeon chest’ which looks a lot more prominent without my boob underneath it 😀

linflo58_0-1615558180403.jpeg

Linda xx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Moira is an inspiration 😊! But I don’t quite have her chutzpah.

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi everyone

I was feeling quite smug that I only needed 5 doses of radiotherapy but yesterday  I found out I will need 15 as, like you Linda,  I need to be zapped in 3 areas. I’m a bit disappointed as I was going to stay with a friend who lives within walking distance of the hospital for the week, and I can’t expect her to bubble with me for 3 weeks, although I’m a bit confused about coming out of lockdown and what we will and won’t be able to do. I should have my planning session within the next 2 weeks and then hopefully start the treatment by mid April, but the doctor said the radiotherapy continues to work for several weeks after the treatment, so I might experience skin problems and fatigue for a month after. But maybe not. I was hoping to go back to work in May but I guess it may have to be June now. I work part time as a registrar of weddings and civil partnerships which I really enjoy and for which I have to try and look uncharacteristically smart, i.e. suit, heels and a bit of slap😊, which is not my usual look. So I’ve ordered a short, white blonde wig like my normal, or should I say dyed, hair and am hoping for some eyelash and brow regrowth. A friend bought me some serums and what with trying to remember to apply those twice a day and rosemary and jojoba oil to my scalp, it’s almost as busy as taking all those drugs with the chemo.

NAJ you make me laugh with your make up exploits 😆.

Love to everyone 

Carmen 👩🏻‍🦲

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Umlydia

It’s great that the cancer is gone from your lymph nodes but I’m really sorry to hear you need more chemo and that you are feeling traumatised about your mastectomy scar. So tough. I guess the appearance of the scar will change over time but it’s very hard coming to terms with it. I’ve been looking into post breast surgery tattoos, from realistic 3D effect nipples to much larger tattoos.  I think some that I have seen are really beautiful. There are lots on Instagram, and this website and the American website Breast Cancer.org have lots of info about it.

I think I might go for it, but you have to wait at least a year after all treatment is over I think, by which time I will be 65 but hey, why not?

 

This was in The Guardian.

Big hug

Carmen x0CA41D66-E9F2-404F-9AA3-445403BF7719.jpeg

linflo58
Member

Re: October 2020 Chemo Starters

NAJ

I thought I had sailed through radiotherapy, after about 8 sessions I noticed a couple of spots. At my review meeting ( I had 2 of those during the treatment), the nurse gave me some hydrocortisone cream to put on. I was fine, but at the end of treatment they stressed quite a few times that it may get worse up to 2 weeks after. They were right! After about a week I had a very red & angry triangle area on my chest. It didn’t hurt, just itchy & very uncomfortable. I have not worn a bra & wore loose cotton clothing ( not a good look 🙄). I have used a full tub of E45 cream, which feels so good when you put it on. It is now 2 weeks since my last treatment & I can see an improvement. I had 15 sessions & was targeted in 3 areas as my lymph nodes were affected. They do say it can make you feel tired. I haven’t noticed an6 difference, but I think our bodies get used to feeling this way, it is now the norm.

Hope it goes well for you.

Linda xxx

Guest user
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Re: October 2020 Chemo Starters

Hi Carmen,

I'm worried that my hair won't grow back properly.  I'd hate it to be thin on top and I think if that were the case I'd probably shave it all off and wear wigs like Moira on Schitt's Creek.  At the moment I just wear a hat if I go out but soon it will be too warm to wear my lovely furry Russian hat and I don't fancy turbans or scarves.  The wig I've got is very flattering but it doesn't look like me - to start with it's blonde!  Perhaps I'll get another that is more like how I hope to look in six months time.

I don't wear make-up (too lazy) so I look pretty shocking.  I really wish my eyelashes and eyebrows would grow back quickly.  I'd be reluctant to use stick on lashes or brows because I've had surgery on my eyes.  I did get some eyebrow stencils and powder but it meant taking my glasses off and then I couldn't see what I was doing. 😂

Hope the swelling has gone down - that must be pretty horrid.

NAJ xxx

Guest user
Not applicable

Re: October 2020 Chemo Starters

Hi Linflo,

I've just had session 6 of radiotherapy.  Roughly when did your side effects start?  Is it sore or just itchy?  The information leaflet I got said the radiographers would discuss skin care etc with me but they haven't said anything at all.

I can't get over all the different treatments everyone is having.  It's such a long haul.

NAJ xx

Guest user
Not applicable

Re: October 2020 Chemo Starters

Hi UmLydia,

I'm having 15 sessions of radiotherapy.  The radiographer told me it was 15 because they were also zapping my lymph nodes.  I get the same amount of grays (40) just in smaller doses.  She said there wasn't enough data about the effect on lymph nodes when high doses were given so it was low dose if they were using it to treat lymph nodes.

That does sound like a tough regime and I'm sorry that you are having to face this additional treatment.

After surgery I expected my chest to be flat but it looks like someone has lodged a cornish pasty under my skin. The breast nurse said it was residual breast tissue - I was a 40c.  When I had my CT scan the radiographer said my scar was very neat.  

My thumb nail came off today and it wasn't as gruesome as I'd feared.  It was a bit like shedding a skin - there was a lovely new nail underneath it so I won't be so worried if it looks like any of the others are going to make a break for it.

Keep your chin up.

NAJ xx

York-75
Member

Re: October 2020 Chemo Starters

UmLydia, I just wanted to send you a big hug, sounds like you have had a real setback and it takes time to adjust to it. Be kind to yourself, hopefully the new treatment will be easier that what has gone before.

Im thinking of you and sending good vibes your way. Hopefully get a good nights sleep and feel more ready to face the next challenge. You can do it! Xxx

linflo58
Member

Re: October 2020 Chemo Starters

UmLydia

i do think it’s hard adjusting to a new body image. I still find it strange 7 months later. My scar is very neat though, they used glue rather than stitches. I can’t get over how flat my chest is. I found the effects of radiotherapy worse in the 2 weeks after completion, I had 15 sessions. It became very red & itchy. Physio helped with cording. I am on Her2 treatment 3 weekly for 15 sessions. I have just been advised that this will be administered by injection rathn infusion, so will be less time on the ward.

Hope you’re feeling better soon.

Linda xx

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Starters

I’m Lydia ❤️ Don’t forget the someone like me option and ask the nurses option too for additional support and guidance if you need ❤️💕💕Shi xx

UmLydia
Member

Re: October 2020 Chemo Starters

Hi everyone

Feeling a bit down. Had my pathology reports yesterday. Good news the cancer had gone from lymph nodes. But 20% residual left in tumour, so will have a new treatment for HER 2 with additional chemotherapy. It's called TDM or Kadcycla. The oncologist said it shouldn't give any big side effects, will need it every 3 weeks until November. Also my heart scan was slower than normal so need to see cardiologist to check (herceptin's only big side effects is it can mess up your heart). 

What is getting me down is the masectomy scar, I saw the surgeon yesterday he took the stiches out. It is so ugly I am shocked. It's one thing to have no breast another to look like frankenstein. Urghhh. It's tough. 

My arm hurts with the cording. I suppose it needs time. I just feel like crying today and hiding under the covers. 

Also saw radiotherapist, will have 5 weeks every day starting April. Radiotherapy marathon compared to UK you get one week I think? They have a different protocol here. 

Anyway sorry to moan. Maybe just tired and overwhelmed by everything, it catches up. 

Hugs to everyone !!

UmLydia
Member

Re: October 2020 Chemo Starters

NAJ you made me laugh so much!! I had to look up Max Wall though. Love your attitude!! It's great you feel comfortable to just go out natural and not care what people think. And your motor bike cooking travels sound great.  I never wear my wig its too fake, but always wear headscarves. My kids would be mortified if I turned at the school looking like Gollum, which I do, my hair is growing back like yours, side and back but not on top yet!! Ha ha. Hope your nails are OK. I would get upset by that. 

Feeling OK about new body image... although have gone ultra feminine- even wearing heels!! I haven't worn heels for 12 years since I had my kids. Definitely some kind of unconscious thing going on about not losing my femininity. I went to a kind of second hand warehouse and bought loads of new (second hand!) clothes. Going through a kind of second teenage 😂😂. I wonder how long it will last...

I read that stress doesn't cause cancer, they did studies on refugees  and people who had been through very difficult experiences and they didn't get more cancer than others. The doctors told me they just don't know why some people get it and not others. If you didn't drink at all that's a good example of it not making sense. 

Carmen that's the last thing we need, hormone treatment making our hair even thinner!! Oh dear. I haven't started mine yet, i'm on herceptin at the moment. I'm not treating my daughter differently because she is a girl, it's more because she is younger than her brothers and she sticks around me all the time so she will see me getting dressed etc.  And she is so young she will get used to my body. The boys find me gross enough as it is. It sounds so hard for your boys with both parents undergoing cancer treatment at the same time. 

Linda I will get psyched up about maybe not being able to wear my prothesis then during radiotherapy just in case. That will be hard... will welcome lockdown !! The fake soft boob is a life saver for me. 

Hugs to everyone!! 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi NAJ

Good to hear you haven’t had any side effects from the letrozole, hope it will be the same with me. I’ve got a telephone appointment on Thursday about starting 5 days radiotherapy which I’m keen to get done. Unfortunately I now have  swollen forearms, hands, ankles and feet, although I stopped chemo 11 days ago, and they aren’t getting better. Ah well........

I only wear my wig when I go out, and then usually with a hat. I’ve decided to treat myself to a more expensive wig more like my own natural hair.  After a lot of research I found out a monofilament, lace front style is the best. I also found out you can get stick on eyebrows! Who knew? £8.50 for 10 and they are supposed to last 3 days. I just hope they are easier to apply than false eyelashes 😱. From Simplywigs. 

My ex used to say we would all be happier if we didn’t have mirrors, (one of the few things he was right about 😆). I’ve got a few hats, but when I get a hot flush I have to whip them off, and then I get cold. I wear one at night too. 

 

Carmen 😷

 

linflo58
Member

Re: October 2020 Chemo Starters

NAJ

Best laugh of the day ........cross between Max Wall & Gollum.....

this really tickled me, thanks xxxx

Linda 

Guest user
Not applicable

Re: October 2020 Chemo Starters

Hi Carmen,

Yes, I'm on Letrozole for 10 years too.  I've been taking it for a fortnight now and no side effects to speak of.  I get a bit hot at night but I've always had that.

My hair is growing well at the sides and back of my head but is looking very thin and fluff like on top.  I can't be arsed to wear my wig - mostly because it doesn't look like me when I've got it on. The people I care about accept me as I am and why should I care what anyone else thinks?  Let's face it - even if people thought I looked like a cross between Max Wall and Gollum they wouldn't be so rude as to come out and say it.

To my horror it looks as if some of my finger nails are going to lift off.  There is a deep ridge on each nail and it definitely looks like everything above it is going to drop off.  I tried to peel a clementine last night and that was when I noticed.  It makes me feel nauseous just thinking about it.  When I thought about the side effects of cancer treatment this wasn't what I expected.....

Take care everyone

NAJ xxx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi NAJ

Wow, it’s really interesting to hear about your adventures.

Are you taking  Letrozole? I’m supposed to start taking it for 10 years and I wandered how you are finding it? I was on HRT for about 3 years, mainly  because I wasn’t sleeping well and had hot flushes. I had to come off it in August and now have the same issues so am wandering if letrozole will make them worse. It can also cause hair thinning, and Im trying to grow my already quite fine hair back!

 

Carmen 👩🏻‍🦲 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Linflo58

 

I have tried to keep a brave face to protect my 3 adult sons, as I don’t want them to worry about me too much, as their dad, from whom I am separated, is currently undergoing treatment for prostate cancer, so both their parents are being treated for cancer at the same time! I don’t know whether I would be more open if they were daughters? I’m not ridiculously positive and  I tell them that I’m tired but I try to be fairly upbeat.

Hope your skin heals soon.

Carmen 🌷

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Umlydia

Lovely photo! I had 3 lymph nodes removed in August at the same time as my lumpectomy and then I developed a seroma, when they took out the drain, which was very uncomfortable and was aspirated twice. Initially my armpit felt completely numb but recently the nerves are starting to regenerate. Apparently vitamin  B12 is good for nerves. I have full movement in my arm and shoulder luckily and I do yoga and pilates.

It’s great to hear that you have been out shopping. I admire you for stopping drinking alcohol. I started drinking a bit more when the first lockdown started, but with chemo I cut right back. However I can’t imagine giving it up altogether. 

I love your attitude about your mastectomy and being a brave strong role model for your daughter 😊.

 

Carmen