October 2020 Chemo Starters

[Karen19]

Thank you both so much for coming back to me. It’s so helpful to have the views of people who have been through the same thing as me.

Ordinarily I just do as I’m told from a medical perspective. I’ve had my Covid jabs and had my booster this week, but understand why people have different views on this. Every fibre in my body is screaming “no” to taking Neratinib. I have until the start of January to decide as that’s the latest point at which I can start taking it.

I also seem to be carrying more weight around my tum as a result of Tamoxifen and no matter how much exercise I do or how carefully I watch my diet, it won’t go! 

York-75 I feel your pain with wearing a bra. They seem to sit just where I get the pain and tried so many different ones. Costing me a fortune! I do think that ongoing aches and the sharp pain that you get Emma are normal, but it’s not easy to put the bc journey behind you when you have niggling reminders is it? 

Thanks again for your guidance.

Karen x

[UmLydia]

Hi Karen

I don't have breast pain because i had a masectomy but my arm and under arm ligament still feels tight from time to time, i think it is from the lymph node clearance, or maybe the surgeon apparently slightly touched a tendon... the physiotherapy lady said it could be either. Sometimes the flat bit where my breast is suddenly hurts, not often, but quite sharp, its very strange.  

I have accepted my new body shape, i go to a regular exercice class. After the summer i realised i couldnt get into my jeans!! After a year and a half of tamoxifen the fat does seem to settle more on my tummy. 

I remember the oncologist saying the treatment i might have been put on would give diarrea. I understand your reticence to start taking pills that are going to make you feel sick, with unknown benefits. 

I have to admit after the covid vaccines i have lost some faith in pharmeutical companies and doctors. On the one hand they save our lives from breast cancer and we are very lucky. But on the other, the covid vaccines were clearly useless in preventing transmission, and have caused loads of nasty side effects and deaths. I see it all around me. I never had the covid vaccine, i didn't listen to the oncogists pushing it. Cancer was a threat to my life. Covid clearly wasn't.  

I don't think you can trust them blindly because the late capitalist system doesn't always have our best interests at heart, although most individual doctors do. 

For what its worth these are my thoughts... its a very hard decision. 

Hugs. Emma 

[York-75]

Hi Karen,

I definitely have some after-effect of radiology. I don’t have bone pain, but the breast that had Radiotheraphy hurts if pressed on. If my daughter sits on my lap I have to move her so she doesn’t press on the ‘hurty one’.

I also often have to take my bra off come evening, which I never used to. It is not long since I managed to get back to underwired Bras, and only certain ones.

I had the same treatment as you. 
Hard to know what to do for the best if your oncologist is pushing it. I would personally loathe to switch my medication now, although I understand that it is important to try out new medications in case they are better. I’d still feel very conflicted.

Hugs to you!

[Karen19]

Hi Emma,

Thank you for your response. You are right about Tamoxifen not being as bad as anticipated. I seem to tolerate it quite well too.

I wonder if the trial your oncologist mentioned was Neratinib as it sounds very similar. My oncologist has really pushed me to take it and I did wonder whether it was part of a trial as it is still in its infancy. I have collected 1 month’s supply, but it is still in the drawer as I can’t bring myself to start taking it!!

I had a lumpectomy, chemo, radio and then Herceptin. I still have breast and bone pain on that side and the breast cancer nurses says this coo poop yes continue indefinitely and is an after effect of the radio. Does anyone else have this?

Karen x

[UmLydia]

Hi Karen

I had a look at neratibin and the side effects and it looks horrible to be honest. Yet if you look at tamoxifen side effects it looks bad, and i am fine on it.

Last year my oncologist talked about maybe going on a clinical trial when i finished herceptin/kadcyla, she said I wouldn't be able to work because of side effects. Then it turned out in France they don't follow the right protocol to take part in that specific trial, the oncologist said "Oh well the benefit/risk ratio wasn't great anyway". I wonder if she would have said that if i had been allowed to take part. 

Hope your oncologist can help you make the right decision for you. 

Xxx Emma

[Karen19]

I don’t know where the last 2 years have gone. They seem to have flown by. 


It’s great to hear that everyone is moving on and doesn’t it feel good to have a clear mammogram?

Thanks for your responses about Neratinib. I have a further appointment about it tomorrow, but in my initial appointment my oncologist was talking about unpleasant side effects and having an emergency number to call “just in case” I had a flash back to the chemo days. I feel like I’ve come so far and for a very small potential benefit of preventing a recurrence, I’m not sure I want a year of feeling rubbish again. 

Take care everyone. Soon be time for those cheesy Christmas movies which kept me going 2 years ago 🥂 x

[Carmen Verandah]

Hi Chemo Starters October 2020

Wow, 2 years down down the line already. I had my second all clear from my mammograms in the summer luckily. I get to see the oncology team face to face every 6  months as I’m on an aspirin drug trial, but disappointingly my 6 monthly telephone consultation with the breast surgery team was a 2 minute call from someone I’d never met 😕 but I guess they are busy.

I still struggle a bit with letrozole side effects but they have lessened. I can’t contribute to a discussion of HER2 drugs as I had the other type of breast cancer, but I wish everyone well going forward. And I always recommend the Breast Cancer Now Helpline, as I found them very supportive and informative. 

Carmen 🙂

[UmLydia]

Hi Karen

My cancer was HER 2 positive, i am on tamoxifen. I had one year inyections of antibody herceptin/then they changed to kadcyla. 

Hope you are all doing well.xxxx

[York-75]

Hi there!

I am HER2 positive too, not heard of this drug. I’m just taking the tamoxifen.

just had my 2nd annual cleAr scan, so relieved about that! X

love to all

[Karen19]

Hi everyone,

Hope you are all doing great! 

I’ve been offered Neratinib and wondered whether any of the HER2 positive ladies amongst us have been offered it or have any knowledge of it please?

thanks

Karen 

[Carmen Verandah]

Hi everyone , lovely to hear from you and find out you are doing. I was just reading my diary from last year, and I finished my radiotherapy a year ago today.  I’m very happy in my new house by the sea and I try not to think too much  about recurrence but instead am trying to do as much as I can to enjoy life. I do tai chi, volunteer in a charity shop, do my garden and I started going to a life drawing class. Our first model was a large lady who had had a mastectomy and other surgeries and she was so body confident and comfortable in her own skin I found it really helpful. I’m getting to know some people here now and I’m looking forward to another summer on the beach.

I’ve taken letrezole for 11 months now but have just stopped for a month, with my oncologist’s agreement. It’s not been great, I have joint and muscle pain, hot flushes, fatigue and I’ve lost about a third of my hair so my scalp is quite visible in places, and feel like an old woman. Well to be fair, I am 65, and did get covid on my birthday, which might have added to feeling fatigued.  I think the oncologist will want to try me on another drug, but I’m not sure I can commit to another 9 years of feeling this way. More decisions.

This group was so helpful to me, it was so good to be able to talk openly about dark days and difficult feelings to people who understood. The world seems in a dark place right now as well. However I wish you all strength and contentment.

Carman 🌸🌼🌞

[UmLydia]

Hi Linda and everyone

I agree so much. I am back to "normal" too. I have got used to my flat chest and the cording in my arm seems to have gone. I need an eye operation next week, got a blocked tear duct after chemo. But more than anything i am just grateful to be here. Generally i have been doing fine, am back to my usual self. To be honest the idea of the cancer coming back scares me so much. I am cheerful and energetic and get on with life and work and the kids. But sometimes my knees just go to jelly when I remember this time last year when i needed a brain scan. I have joined a gym group and go twice a week and still do yoga. I think it is necessary to deal with tamoxifen side effects, also to stay strong mentally. 

Is lovely to hear your news, glad to hear everyone is doing well. 

Hugs

Emma

[linflo58]

Hello

Nice to hear from you both. This forum was such a good help to me. I didn’t post a lot but read everything. A friend has just been diagnosed & I recommended this site to her. Luckily I don’t need to take anything. Mine was Her2 positive, so after chemo, radiotherapy & monthly Herceptin infusions, I was good to go. Just Zometa ( for bones) every 6 months. I have a constant reminder when I look in the mirror, it still seems strange to be completely flat on my right side, my underarm is still numb, and I have an indent where the portacath once was. All this is a small price to pay for life. I have had cancer twice, but it feels like it happened to someone else as my life just seems ‘normal’ again. I’m still working, although I reduced to 3 days a week. Funnily enough, my biggest fear is not me getting cancer again, but a loved one getting it. I think it is harder for relatives to deal with it. I hope you both continue to be healthy, I’m currently sat in the garden with the sun on my face- lovely.

Take care

Linda xx

[York-75]

Nice to hear from you Chesterbrownbear!

I do think of this group sometimes too, it was such a help to me too.

all well here still, long may it continue! I find the side effects of tamoxifen have reduced over time. A bit tired, but mostly back to normal. I’m sorry the side effects have been so much harder for you. 😢

I hope everyone else is also ok, would love to hear any updates. Xxx

[chesterbrownbear]

Hi all, I hope everyone is doing well. I was just walking my old black lab on the beach, and this amazing group came to mind. A good friend of our is waiting to see if he’s got prostate cancer. This group helped me so much through the dark days. I’m fine, just struggling with the tablets, letrozole didn’t go well with me, so I was changed to anastrozle, that’s no better, aches and pains, tiredness and hot flushes, but it’s better than the alternative. I’ve still got my chemo curled, I thought they would only last 6 months🤷‍♀️. Thank you again for your support and love to you all 💕💕💕

[Carmen Verandah]

Hope you had a lovely day York-75, and good luck going forward.

Carmen 🌼

[Carmen Verandah]

Hi Emma

Hope you had a lovely Xmas in Spain, and that you get your eye sorted out soon, that sounds like a pain..

Carmem 🌺

[York-75]

Merry Christmas everybody!

it is 6.20 am, and somehow I’m the only one awake. Miss 7 who still believes will wake up soon, and the excitement will begin. When I got cancer, all I could think about was how I wanted to be there for her growing up, and how much she needed me.

very grateful right now to be here, be well and feeling positive. I also feel life is mostly back to normal now. Still get uncomfy in underwired bras, and have some slight side effects from tamoxifen, but not much, and life is good. 

Well done Carmen on becoming a vaccinator- I hope everyone is keeping well and safe. Lots of love to you and your kids UmLydia, I hope they are as excited as mine. 

Best festive wishes to all, hope you are all feeling positive and excited for Christmas. Xx

[UmLydia]

Hi Carmen

Thanks for your news. I feel the same, when I look back to last year with my bum thrush for Xmas and my bald head... feel normal again now. Enjoying Xmas in Spain with my family.  I definitely feel globally the cancer experience has made me stronger and i appreciate life more. I had my last her 2 positive treatment a week ago, glad to have that behind me! 

I have a blocked tear duct as a side effect of docetaxel, so will need to have a scan and an operation in the new year, because my eye constantly gets all gungy and teary. But at least hopefully it will get sorted out. 

Wishing everyone a merry Xmas!!! Hugs. Hope everyone is doing well. 

Emma

[Carmen Verandah]

Hi everyone 

Hope you are all okay, I haven’t looked at this forum for a while. I’m doing well apart from a few symptoms from letrozole. I go back to my chemo unit every 6 months for a zoladex infusion but only have a few more of those now. I’m happy living by the sea, and I’m going to start vaccinating in January, now everyone needs boosters. It feels odd looking back to my bald self last Xmas, definitely in a better place now. 

Hope you all have a good Xmas, and Happy New Year. This forum helped me a lot so I am grateful to you all and wish you well.

Carmen x 

🎄🌞🎄

[UmLydia]

Hi kazza

I am on my last herceptins too. I am really glad to finish them. They make me feel sluggish and I am started to have minor heart damage (apparently it makes a mistake and attacks heart cells instead of cancer cells sometimes) so i am taking a little pill everyday to protect my heart. Feel like a right old granny. Sometimes i feel really fed up and all the covid psychosis doesn't help. My hospital offered regular exercise classes all through treatment and i am sure that is what kept me sane and also helped with weight. I am on tamoxifen too and was worried about weight gain but have been lucky so far. I need my exercise fixes they are addictive. I never used to exercise before the cancer just go on long walks. Do you know what kind of pills you will be on after herceptin? My oncologist is supposed to tell me next week what i will take after herceptin. She mentioned some new drugs that have digestive side effects. I used to never even take a paracetamol and had three kids without medical drugs....as long as the cancer doesn't come back fingers crossed. 

My breast doesn't hurt since i had a masectomy, no reconstruction. I still have cording in my arm and armpitt but it doesn't bother me too much. 

I hope you feel better when you get off the herceptin. It must be demoralising not to fit into your clothes... its tough having short unstlyable hair and low energy levels. Be kind to yourself, we've been through a lot and i find this (almost) end of treatment harder than the actual chemo. 

Hugs and try to get out as much as you can, see friends.... 

Emma

[FiFi2020]

Hi All

Hope everyone is doing ok? Wow, a year since we started treatment... what a year.  I haven't read too many posts of late, apologies but hope this finds everyone doing well.

I finished treatment in April, had my double mastectomy (and reconstruction) in May and was told no evidence of cancer had been found so life since then has slowly been returning to "normal" whatever that is these days!  As I'm triple negative and BRCA 1 I do still need to have ovaries/Fallopian tubes removed but my surgeon said to wait another 1-2 years for that as I not turned 40 this Summer.  I have an appointment this month with my surgeon to deflate my temporary implants slightly and am hoping to hear when it's likely I can switch to gel implants. Since finishing treatment I've fortunately not been on any medication/injections as I'm triple negative so I would say since July I've been feeling 95% myself again.  Only complaints are heavier legs and numbness in toes which hasn't really changed since April.  Otherwise all ok!  I cold capped so my hair is perhaps a little longer than others who started treatment a year ago.  Not my best hair style I have to say, but it's getting there!

I returned to work in September starting my own new company and work is going well.  We've been having building work done at our house since October which should hopefully be ready in time for Christmas and my husband and kiddies are happy and well so I am incredibly grateful indeed.

Am very thankful to the lovely doctors and nurses that treated and cared for us, thankful for forums like this and thankful to be sat here typing a message with a much calmer, happier mind than one year ago.

Hope this finds everyone doing well - I haven't really read all the recent month's posts so for those that are still facing difficulties and attending hospital appointments, am sending you lots of love.

Well done everyone!

x

[kazza81]

Hi Everyone.

just thought I would stop by to see how everyone is getting on.

can’t believe it’s been over a year ago since we started our journey.

I finish my herceptin next month with 1 injection left to go then start tablets in January. I seemed to of piled on loads of weight since treatment which is getting me down a bit as bone of my clothes fit me properly. Will I ever lose the weight? I feel horrible.

hair is growing back nicely. Although at the moment it’s at that awkward in between stage where I can’t style it. But hopefully it will grow soon.

I still get pain in my breast too. Have been back to the Breast Nurse a couple of times who say it’s normal. Seem to still find comfort in wearing a bra to bed more often than not these days. Does anyone still have pain or weight issues? 
kaz xx

[UmLydia]

Hello everyone! So glad your mammogram was ok York 75!!!!! Was thinking about you. And Chesterbrownbear yes we all moving on from our chemo experience...

I am still having three weekly kadcyla (herceptin + targeted chemo). My last heart scan showed borderline heart damage so am on heart medication now to finish treatment.  Yay. But they say heart thing is reversible and will go back to normal. Have three more cycles to go. It makes me feel tired and a my fingers are starting to tingle. Will be glad when it is over. Don't feel abandoned though!!! 

Work is ok am enjoying it. Will be able to stay working part time for as long as I want this academic year so that is good. No need to push myself.  

I was upset by the anniversary of starting chemo... made me feel a bit traumatised- more than the diagnosis anniversary.  Last year i lost my hair exactly on haloween and i thought it was funny. This year we celebrated haloween with the kids and some inlaws and the memory made me feel queasy.  I think we had to act all tough to get through it all, then when its over you feel drained.... I'm ok most of the time. But then it hits me how serious it was. I still find it hard to believe i had cancer. I am so healthy, energetic and positive most of the time. 

Got used to chopped off breast. Hair needs a cut!!! Has zero style at the moment. 

Hugs to everyone.  Hope you all well!!!

[York-75]

Nice to hear from you Chesterbrownbear!

im glad to hear that you are you are mostly back to normal now.

I would say I am too, with short hair that I don’t mind, and a bit more of a fluffy face than I used to have.

I get a little more tired, but largely I can do everything I used to. Because I had to go for Herceptin injections every 3 weeks, I have kept going back to the chemo unit abs don’t feel ‘abandoned’ like many others do. I’m glad to have had the last one now. Just a final heart scan, and a couple if ‘wash-up’ appointments to go.

I had my one year after surgery mammogram in September- about a month late, and I’m pleased to report it showed no abnormalities. It was a huge relief, and definitely a cause for celebration!

I hope everyone is ok- we have made it through this crazy year together.

Love and best wishes to all! Xxx

[bookish]

oops, wrong board!

[chesterbrownbear]

To all my lovely October 2020 chemo starters. What a year it has been, full of many lows, yes, but how things have changed. Now I am complaining about my curly hair and pesky chin hairs that have to go. At lest now I do have hair to complain about. When I first found my lump, my 3rd grandson was bor, and because of my op, my sons family came up from Devon for the day just to see me which was great and so memorable. To be fair I am more or less back to normal now, getting used to the tablets, but as I haven’t has any follow up appointments, I do feel as though I feel dumped by the hospital, I understand I will have a mammogram next May. I don’t know about any of you, but nowadays I do get a bit more emotional about everything, especially about people with cancer. I try to push that to one side.

Hopefully this is the new beginning for us all, yesterday I heard that my daughters friend who had been diagnosed with non Hodgkins Lymphoma at the same time as my diagnosis, she’s only 30, has just received the all clear. What a wonderful piece of news.

Thank you to each and everyone of you, this forum has been a life line, thank you all so much and chin up 😀😀💪💪💪

[Carmen Verandah]

Hi Umlydia

She with the sassy short hair and earrings 😊! Send us a pic. Good to hear you are back at work.

 I do get quite tired and like you have that painful tight feeling when I stretch my arm 😕.

Ho hum. But we are having some lovely  late summer sunshine in England so I’m spending as much time outside as I can, while it lasts. 

Carmen 🌞x

[Carmen Verandah]

Hi York-75

I had bilateral mammograms a month ago and I think it’s every year now for 5 years post surgery. I had a lumpectomy too. Luckily they were okay, but waiting for the results is always nerve wracking. My operated on breast feels quite different to the other one and I was warned that if they called me back, I shouldn’t worry,  as  it would most likely be because the news films would look very different to previous films,  and they might just need to take more, but they didn’t need to luckily.

Good luck with yours, let us know how you get on ❤️.

Sorry to hear that you are experienced pain. My boob hurts if I stretch my lymph node stripped arm. Maybe I should have been better at doing those arm exercises, although I do yoga and Pilates.

Great that you got away to see your family and friends. I hope you are enjoying a bit of late summer sun. 

Carmen 🌞x

[UmLydia]

Hello York

Sorry to hear you have had pain and discomfort in breast before your first check up. Sending hugs and hope the days pass quickly and you get it seen to as soon as possible. You seemed to be doing great. So glad you managed to travel and see your family. After all we went through last year it is so important to see loved ones. 

I am back to work part time. Its going ok, I'm happy to see my students and don't feel tired at all. But everyone says take it easy, don't push yourself etc so I feel really ok about going back. 

Still trying to keep all my keep fit stuff going, can't go to the hospital group as often but manage from time to time. It boosts my mood no end! 

Had my hair cut even though it was short, so now i can style it and with make up and ear rings i get lots of compliments.  That is nice to feel feminine again, after my cancer make over

My tendon in my operated arm still hurts if i stretch my arm out. Its quite unpleasant.  I thought it would get better but no amount of stretching or swimming makes any difference.  Something i will just have to put up with I suppose.  

Hugs to everyone, especially York. Let us know how it goes. xxxx

[York-75]

Hello there everyone, 

how are you all doing?

Sounds like life by the sea suits you, Carmen!

Have any of you had a ‘one year on mammogram’?

I had a lumpectomy, and I’m not sure if everyone gets offered yearly mammogram for 5 years.

mine is in 2 weeks, which I’d a mo th later than the anniversary of my operation. I’m nervous!

I have had more pain in the breast in recent weeks- uncomfortable wearing my regular bras-  which might not mean anything other than shifting scar tissue, but it is a constant reminder and I am feeling a bit unsettled.

Hopefully the next 2 weeks will pass quickly and it will turn out to have been nothing to worry about.

I managed to get abroad to see my mum, brother snd close friend last month. So nice to see them, and have a small early celebration of my my mums 80th birthday. 😍

It was nerve wracking travelling under current conditions, I was worried I would have misunderstood some of the rules, but it all worked out, thankfully.

lots of love to all, 

York-75 xx

[Carmen Verandah]

Good to hear that you are enjoying the summer and treating yourselves, even if you are still having to combine it with treatment Umlydia. I’ve been enjoying living by the sea, I think the sea air agrees with me, even though the seagulls are very noisy! 

My hair is almost long enough for me to feel okay with it, fingernails are back to normal and I only have two dodgy toenails now. Being on letrozole isn’t entirely great, as I have a very stiff neck, frequent headaches and I’m not sleeping too well but my first annual mammograms were okay and my blood calcium level is back to normal.

I received a copy of the most recent letter the oncologist wrote to my GP. In it was the sentence “On examination performance status was 0”.  This made me think I had received ‘null points’ like a failed Eurovision act, but for what,  I didn’t know.  So I googled it and apparently  it means that I can do everything I used to be able to do before all the treatment. So achieving 0 is good news rather than bad! 

Although someone told me that the effects of chemo can last a year, and I certainly seem to still have a bit of brain fog and have lost the ability to do mental arithmetic quickly and admin type stuff seems to take me a long time, but I will just accept it and try and be patient. Which doesn’t come easily to me alas. The pace of life in Bexhill-On-Sea is much slower than in London, people are friendly and I have to keep reminding myself to relax, stop rushing about and unhunch my shoulders, so I think living here will be good for me.

Good wishes to everyone, I hope you are all doing okay, and looking after yourselves.

Carmen 🌻🌞🌸

[Guest user]

Carmen, that sounds like a really horrid experience.  I had a mastectomy and went home the same day - no drains or anything just a huge plaster.  In fact I didn't even realise when it was the anniversary of my op because young James and I were in Wales doing the Snowdonia 360 (by car) and tramping round castles so I wasn't aware of the date.  I am glad to hear that you are settling into your new home and starting to work again.  The hair at the back of my head is looking a bit curly and sadly those pesky hairs on my chin have returned.

Lydia, it does sound like you are having a lovely summer.  I've got a bit more selfish since my diagnosis too.  I've spent an absolute fortune on holiday - we stayed at really lovely bnbs and I treated myself to things I wanted regardless of the cost.  We got home today from Wales and on Sunday we are off camping again then I've got two trips planned with my biker friends in September.

It's been quite a year - one that none of us would have wanted to embark on but here we still are.  This forum has been incredibly helpful and supportive for me.  I didn't know anyone else who had been through breast cancer and it's difficult for anyone who hasn't to really understand what it's like - how scary it all is and how horrid some of the treatment makes you feel.  

I guess our next objective is to learn to look forward with confidence.

Hugs to everyone

NAJ xx

[UmLydia]

Hello Carmen, so glad you are settling i  your new house by the sea, lucky you! I suppose its normal to get emotional when you realise a whole year has gone past and you remember traumatic moments. I was diagnosed late August.

The aspirin trial sounds good, i hope it works, would make a change for cheap drugs to help us instead of the extortionate medicines that we luckily get thanks to our social security systems. 

I am having an amazing summer to be honest.... went up to Perpignan for HER2 treatment and made the most of it by staying a couple of days each time. Chemo tourism! I even managed to go and protest against the segregation according to vaccine status that is shockingly being put into place in France. So chemo activism too. 

Had a brilliant time in Naples, I really felt i deserved to indulge and enjoy myself!! The kids stayed with granny... i would never have done that before the cancer but now i have changed into a selfish mum ha ha ha. Put myself first a bit more 🙂 And its great. 

I had an awful haircut in Naples though, its short on the sides and spiky on top. If i can be bothered to put make up and wear nice ear rings its not too bad. Avoiding looking in the mirror... 

Hugs to everyone.  Hope you are all well and having a lovely summer. 

[Carmen Verandah]

Hi everyone

I hope you are all doing okay. Friday was quite an emotional day for me as it was exactly a year since I had my lumpectomy. I can’t believe a year has gone by because I remember that day so well, having a painful guide wire put in my breast, followed by a mammogram, wanting to jump off the operating table and run away, waking up in recovery, and the drain pulling every time I turned over in bed. And the next morning being high on all the painkillers, and it being incredibly hot.  And then finding out I needed chemo. But now I don’t really remember what it was like being bald and tired, taking all those tablets and having a horrible taste in my mouth.

Anyway, I’m settling in to my new house and enjoying the fresh air and living near the sea, I’m back at work part time and conducted eight weddings yesterday. I even had a hair cut although it didn’t take very long, I just had the back and sides shaped a bit. 

I’ve seen the oncologist and I’ve started on a 5 year trial to see if aspirin can help stop recurrence, although I might only get the placebo. My mammograms were fine which is a big relief, and I’m seeing the surgeon next week.

I miss posts from this forum but I recognise that is natural that we are all moving on with our lives. I wanted to say thanks for all your support, I’d never been on a forum before but it really helped me to hear about everyone’s experiences.

So, here’s to the future! 

Carmen 🌼🌸🌺🌻🌞 xxx

[Guest user]

Hi York,

It's good to hear that you are doing so well and getting out and living your best life.

I have pretty much always had a dog and had to have my beloved dog Iris put down two days before the end of my radio treatment.  I'd been selfishly hoping she would see me through all my treatment but it wasn't to be.  We want to get a Bedlington/Whippet cross.

It must be so hard not being able to see your mum - and she must be desperate to see you too!

I had my first annual mammogram about ten days ago and got a letter from my consultant telling me there was nothing to be concerned about and this was 'most reassuring'.  I find long earrings look great with very short hair so it's the perfect excuse to buy more 😊.

Hope everyone is enjoying the sunshine.

NAJ xx

[UmLydia]

Hello Linda, that's great news, i hope we have no more scares for a while now. The emotional roller coaster is exhausting. At least the nurses were nice and sympathetic to you. It's obvious we can't go around with unchecked lumps in our bodies. Now you can enjoy the rest of the summer, definitely earnt it. 

Chesterbrownbear hope this new medicine will be kinder to you, hopefully no side effects at all... do you try to walk or exercise to help with the tiredness? 

I have cystitis, haven't had it for years, not even under chemo. So having to rest and let the antibiotics kick in, which is the last thing i want to be doing ha ha. Luckily the kids are with my mum so i can rest properly and so can my partner, who never really gets a mention, he is really great he looked after the kids and did everything in the house so he deserves a break too.

I suppose it is like a marathon this whole treatment/experience. I usually spend summer here in Spain and i am so glad to be able to do kadcyla treatment near the border i don't mind the 300 km drive. I just hope my cystitis clears up fast because i am supposed to go up soon. I like the heat i wait for this weather all year. 

York75 so sorry you couldn't visit your mum. That just isn't fair. Plus you all had your covid injections ages ago. I don't understand it. It's really tough having close family you are not allowed to see. I saw my sister for the first time in two years, her 1 year old baby, was so happy!!! I feel upset for you. Its great you have a little place by the sea though!!! Sounds lovely.  

I still don't feel comfortable letting people see my short hair, unless i wear lots of make up to compensate for the masculine effect. 

Hugs everyone

[Carmen Verandah]

Hi everyone 

NAJ that is such good news, but it must have been awful waiting and worrying. So relieved for you. And exciting to be getting a puppy.  

Umlydia, a 6 hour round trip sounds a long way but great you were able to arrange it and can relax on the beach with your family. We’ve finally got some sunshine here.

CBB I hope you will get on better with the new tablets, fingers crossed. 

York75 I’ve ditched my wig too as it is is too hot. I feel a bit manly but it is easy to style! My furniture arrived last week and then I went away for a week the next morning to a caravan with some friends. There is lots to do in my new house but it feels a bit as if I’m still on holiday.

Big hugs to everyone,

🌞🌸🏖

Carmen

[chesterbrownbear]

Dear Not a Jockey, I am so pleased for you, when will this marathon ever end. Dear Umlydia I did feel emotional reading your last post, I don’t want people to feel sorry for me but I just want understanding. 
My appointment on Monday with the breast nurse has been postponed as she has to self isolate due to COVID 🤷‍♀️. On a new drug now, Anastrozole due to my previous side effects, hope this is better but it does say expect drowsiness and contains latulose 🤷‍♀️.

look after yourselves 💪💪💕💕💕

[York-75]

Hello there, how is everyone?

NAJ, I am so relieved to hear the lump was nothing to worry about. It must have been another emotional roller/coaster. Hope you have a wonderful birthday. And how exciting to be looking for a puppy. Hope you find one that doesn’t cost a fortune! Have you had dogs before?

Umlydia, I’m so pleased you have been able to see family in Spain and go on the beach, sounds heavenly.

I optimistically booked to see my mum who is abroad, but rules have changed there so I can’t go. Guess I’ll have to be patient a bit longer.

carmen how are you settling in your new house? I hope it is starting to feel like home.

im doing well, we are enjoying goi g to our little house at the seaside at weekends, and I have a lot of leave to take in august, so this will be a great place to come. Very lucky to have this opportunity in a year when lots of people are wanting to go away, but can’t.

I still feel a bit tired in the evenings, but I can work (part time, I went back in February just after radio- but I worked from gone and had a phased return) run and exercise and do things with my girl, so not being able to have late nights is a small price to pay. I think it is the tamoxifen. Sleeping when it is hot can be tricky.

I am looking forward to getting my first annual mammogram, I’m expecting august or September. Hopefully hearing that is clear will make me feel so much better.

im heading into my last quarter of Herceptin soon, hope I will be done in October.

I’m loving my short hair now snd I’m not even sure I will grow it. It is easy for exercise and quick to do, and many people tells me I look younger. I still feel sometimes in pictures it looks a bit ‘manly’ but I’m keeping it short for summer at least.

hugs to all! Xxxx

[Guest user]

Hi Emma,

Somebody said that cancer treatment was a marathon and not a sprint and you're certainly making that true.  A six hour round trip in this heat - definitely a marathon.

The lump turned out to be a solidified seroma and nothing to worry about.  Honestly I could have skipped out of the hospital.  They were all lovely about it and said I'd done the right thing getting a referral.  So relieved - and you know how that feels.

I'm having a birthday tea tonight with all my family and I've been looking at adverts for puppies but I won't get one until the autumn when we've finished camping for the year. 🙂

Hope everyone has a lovely weekend.

NAJ xx

[UmLydia]

Hi Linda!

That does sound like a palaver to get an appointment.  You would think it would be more straightforward once you are in the system and have been through all the treatment.  Its tough having to wait when you are worried and you need to get it seen to. Will you have a mammogram on Wednesday?

I had a six hour return journey for treatment today. I am staying in Spain and my oncologist arranged for me to have Heceptin in the south of France, near the border. Was amazingly nice of my oncologist. I had to drive up just to see the new oncologist before treatment, but where I live in France is so far it would have taken me all day to drive there!! In the new centre in the south of France they told me they almost never accept "chemo turism" !. 

I'm just so happy to see my family and chill and go to the beach.  With my lovely masectomy bikini. 

Lydia is my little girl and Um or Im means "mother of" in arabic. I'm not arab but i lived in the middle east years ago. I like arabic culture.  

I can understand my friends being tired of hearing about cancer. I am tired of talking about cancer. Its true we have the chance it will come back hanging over our heads. Luckily the oncologists do everything they can to prevent that. Which is why i am driving hundreds of km today so i can get my targeted therapy injections.... 

Hugs for Wednesday. 

[Shi]

❤️Just gentle reminder, please be careful when you put where you are on open forum, the whole world can read it ❤️ please keep safe 💕💕✨✨Shi xx

[Guest user]

Hi Emma - where does UmLydia come from?

I'm a Linda but there was already a Linda on here so I went for Not a Jockey as I live in Newmarket but have never wanted to ride a horse!

I have an appointment on Wednesday this week.  That was a palaver.  When I found the new lump I rang the breast unit who said they couldn't see me unless I got a referral from my GP.  Got that but having waited a week to hear about an appointment I chased it.  My GP emailed me copy of a letter from the unit giving me log in details so I could book online (I've still never received that letter).  Tried that but got the message 'there are no appointments available for you'.  Rang the surgery again and they got me an appointment for this week - one day before the 14 day deadline.

It's interesting that you feel your friends have 'sympathy fatigue'.  Until you've been through this you have no idea how terrifying it is and how it changes your whole viewpoint of your health and future.  It really is like having the sword of Damocles hanging over you.  We were camping this weekend and I woke up on Saturday with a huge lump on my neck.  My first thought was 'OMG it's in my lymph nodes' but James took a photo of it and I'd clearly been bitten by something overnight.  😂

I'm seeing a different surgeon this time and keeping my fingers crossed.

Carmen - how is life in your new house?

Hope everyone is keeping well,

NAJ

[UmLydia]

Hello Naj

Did you manage to get an appointment for a mammogram? I hope they will get it looked at as soon as possible.  The waiting is very hard. Since we already had a period of waiting and it turned out to be bad news at the beginning nobody can say anything that will take away the worry until you get it seen to. 

I found friends had run out of sympathy and support when i was  finishing treatment but kept having false alarms. Plus its not novel anymore. You just want to turn the page and get on with your life. 

I hope you will get that dog. Do whatever makes you feel good. You deserve it and the dog will have a lovely home. 

Carmen your neighbours sound so lovely!! Its great you are back to work. What do you do at the wedding? Sounds glamorous. 

I'm really happy i am seeing my sister for the first time in two years.

Hugs to everyone. 

Emma

[Carmen Verandah]

Hi everyone,

NAJ I’m so sorry to hear about the lump you found, and I hope you will be seen swiftly. And that you lost your mother in law. No wonder you are feeling fragile.

CBB will you be on Tamoxifan instead? I seem to be okay on letrozole but I do feel a bit stiff sometimes. I did read that different manufacturers’ versions suit people differently, which surprised me as I thought a drug was a drug! 

Umlydia I hope you have lots of fun on the beach this summer, and on your trip to Naples, I’ve always wanted to go there. 

So I got the keys to my house on Monday and camped there for a couple of nights without hot water or a bed, as my furniture doesn’t arrive until next week and it needs a new boiler. I’ve met the neighbours who are all very friendly which is great. I did lots of cleaning,  and the estate agents gave me a bottle of Prosecco. It felt a bit weird sleeping there but I think Im going to be happy living there. I was doing a clear out at my mum’s and I found several chemo hats and I thought should I give these to the charity shop or keep them in case my cancer comes back. Then I thought give them away for heavens sake, but I guess it shows that that fear is always in the background however much we try not to think about it. I’m back at work doing weddings but only part time, three Saturdays a month and the odd Sunday and weekday and it’s been fine. I’ve been wearing my wig still so it’s going to be disappointing when it’s just my own short and fine hair.

Big hug to everyone, take care of yourselves

Carmen 🌺🌻🌞

[Guest user]

It's such a relief to hear that I'm not the only one feeling fragile.  Sometimes I wonder if all the trips and camping are just displacement activities - by being busy and out and about I can pretend nothing's happened.  Had to see my GP yesterday as I found a lump - she thinks it could be scar tissue but now I'm waiting for a referral back to the breast unit.  I'm trying not to worry because she might be right but I have very mixed feelings about this - you know what that's like Lydia.  If it turns out to be nothing to worry about I think I'll get a puppy.  I'm looking after my friend's French Bulldog this weekend and it's reminded me how much I miss my dog.

I can sympathise over the school situation Lydia.  I used to be a teacher and things can get very political.  I worked in a school where the Head employed her sister and best friend and it was pretty awful at times. CBB - I had no idea there were only a few manufacturers making Letrozole.  I hope the new prescription works better for you.  I can't imagine what it must be like facing a return to work.  As a foster carer things just carried on the same for me because at 14 James is pretty independent and I had a lot of support available.

Have a good weekend everyone.

NAJ xxx

[UmLydia]

Naj i don't think we can be like before.  We still have physical side effects from treatment and psychological effects from all we have been through. I think it changes us and you are amazing you are booking all the camping holidays and living life to the full despite the fear the cancer will come back and the tiredness. Maybe it can help us live an even fuller life. We have been living in the present so much taking each day as it came during treatment.

I feel emotionally fragile, up and down, somtimes full of energy even a bit manic after the relief of not having secondary cancer, sometimes really drained and empty. I get aches in my legs and a dull tiredness that is very unpleasant, must be tamoxifen side effects kicking in...I'm worried about going back to work, especially in one music school where i teach the director is not supportive and he is trying to give my job to someone else (his wife!!!) . Its hard coping with extra stuff. I'm fine as long as i can do my own thing and exercise. But being in the real world and running around, being in charge of other people seems too much. I feel i will just start crying! Which is so not like me... at first i will go back part time, in France there is this gradual back to work scheme after a long illness. I don't think i could cope going back full time anyway. 

Luckily have the whole summer to look forward to before all that.  

I bought myself a special swimming prothesis, then i can go to the beach in my bikini with fake booby, and put other prothesis in a special top so i can change on the beach without swapping prosthesis! The beach logistics of breast cancer survivors. Spending so much money on special bras and swimwear but I think its worth it to feel confident. Also will have to give up my headscarfs and accept my hair is very very short! Not easy accepting new image in public. At least i can wear make up now, my eye doesn't systematically get all gungy every time. And all the keep fit classes are paying off, in some ways i feel fitter than before having cancer which is ironic. 

Chesterbrownbear hope the meeting with oncologist went well. Hope he can help you with side effects. Its such a pain having to put up with them. 

Good luck for your mammogram Naj. 

Enjoy the summer everyone

[chesterbrownbear]

Dear Not a jockey, you are having a tough time, please take care of yourself and enjoy life today as much as you can. Up until last year I worked in a pharmacy so I have a good relationship with them. There isn’t a shortage of Letrozole but there isn’t a choice of manufacturers. Unfortunately doctors and nurses don’t normally know of shortages, but the pharmacy are the ones who can tell you .  I spoke to my oncologist Friday about my aches and pains and fatigue, he said it was classic side effects. He suggested changing brands, which I have since found out that’s not an option, so his will be sending me a prescription for an alternative drug. I must say since all this started I get more emotional, especially when I hear people like Bowel Baby who has grade 4 bowel cancer and she is so young.

Thank goodness it’s a nice sunny day today, went out for a delicious seafood lunch with my husband and black Labrador, and a beautiful walk down the canal after, a great way to lift the spirits.

Stay strong everyone, we’ve all gone so far 💕💕💪💪. Mandy xx

[Guest user]

Hi Everyone,

Spoke to the oncology breast nurse yesterday ahead of my bisphosphonate injection on 21st July.  Mammogram is on 9th July.  I asked her if there was a supply problem with Letrozole because I'm now on a third different brand.  She wasn't aware of one.  Apart from the fatigue (which she says could last 18 months!) I don't feel like I have any side effects from the drug, which is a relief, but when I am stressed I get terrible pain across the top of my back and shoulders.  If I stop for a couple of minutes and do breathing exercises it does tend to go so it's clearly anxiety related.  My late partner's mum just died from cancer and the funeral is next week.  I'm sure I'll be in pieces at the service - it's a terrible reminder that we are all mortal. 

I never used to worry about my health but that's all changed - I'm so scared the cancer will come back. 
I hate living in fear - maybe as time passes I will get more confident about the future.  Right now I really miss having someone special to give me some reassurance.  My friends say I look well now treatment has finished but I'm finding this time very hard. I hate the fact that I can't do things as easily as I used to.  I want to live my life to the full and at the moment it feels like the after effects of the treatment are limiting me.  Last night I thought I'd found another lump and then I thought I was probably imagining it because nothing is the same as it used to be, but as a result I barely slept.  Clearly need someone to knock some common-sense into me. 

In an effort to have a 'normal' life I've booked lots of camping trips plus we're doing the Snowdonia 360 route in August and yesterday I booked tickets to see Joseph and his Amazing Technicolour Dreamcoat in the school hols. 

Carmen the view from your new house looks so tranquil.  I hope your move goes smoothly.  

UmLydia - have a lovely time over the summer.  Can't decide if weighing myself naked is cheating because if I had the prosthesis 'on' I'd probably be at least 1lb heavier!

Take care everyone

NAJ xx