75.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

MAY 2021 CHEMOTHERAPY STARTERS

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  I hope your run went well today and most of all that you enjoyed it. X

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I woke up this morning to all of your amazing words or strength and support. Thank you so much it means so much.
I had a good night with my friends, it was a great distraction and no tears were shed. The rain has eased a little but it is still drizzling. I have decided to take positive action and contact my hospital about my stomach. It is likely it is nothing so the sooner I know the better I will feel. 
In the notes section of my phone I have copied your posts about healing, forests, flames and rain so now I have this folder to read and know you are all there supporting me and hopefully I am there to support you all too. 
Thank you xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @delly 

Thank you for your encouragements.

I am putting my little lego piece in the construction and it feels good.

have a nice day

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 

Well done for standing up and telling this older man to not cut the line. 

Congratulations for also getting the courage to tell a stranger about going through chemo.

Since I have my silly cap (not wearing it at school 😂) with F... cancer written on it, I get a lot of curtesy and more respect from strangers. No word is said but I can see how people holds distance in the store, smiles timidly with a comprehension look in their eyes, might offer their help... Of course, there is also the outlier, the one that won't care. But guess I don't care either about them, I am content with the other nice side of nature.

I even got from the guy working at my local poke bowl restaurant : love your cap, wink wink... Like silent bond.

Btw, I also got offered my booster shot. Even the alternative Sweden has decided to boost the cancer patients and vaccinate the teens from 12 years of age. My 13 year old has already signed up (herself on her own) to get her shot. She is so proud to do it, for her, for me and for public health. I am so proud of her!

Have a great sunday

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@amy46 

I love the rain poem. Thank you. 

I see us in this forum as trees. A forest experiencing the storm together.

We will be standing after the storm,

shaking off the rain from our branches,

drying up in the wind,

stretching our branches towards the sun. 

We might have lost some leaves, 

Some branches might be broken.

But our leaves will be brighter and greener and,

our trunk will grow taller and stronger.

Storm after storm, rain after rain, years after years.

 

Love you all

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @Michelle21 

I am so sorry I missed your post when replying quickly to Amy yesterday. I wish I could have seen it earlier and be there for you. 

There is only so much one can take. You have had your fair share of misery while being super positive and supportive to all of us on this forum. There is no wonder you are feeling down and yourself in a dark spot. You have a lot of grieving to do, your mum, your friend and part of the old you. There is no time to do so when yourself are fighting for your health. 

Your friend would have understood you not going to the funeral. Going through cancer herself, she would understand. It does not mean the pain is less, the sadness is absent and this friend forgotten. Writing a card to her family, expressing your feelings will be as strong as being there. The most important is to tell her relatives how much and what she meant to you. From this forum, I realised that words have as much power as hugs and physical presence. Word can be read over and over again, for as many times as one need. On Wednesday, instead of the funeral, take a moment to think about all the beautiful moments you spent together. Make her alive in your memory and in your heart and cry your feelings. 

It is OK for your daughters to see their mum cry and be vulnerable. Because what your daughters see too (and we here in this forum, we see it), is that their mum although scared, keeps picking herself up and fights, keeps going forward and is incredibly strong. You are all that : sad, terrified, vulnerable, ... AND positive, determined, supportive, strong... and this makes you so special and whole and human. 

It is important to show our daughters that being scared does not stop us. I cry with my girls, I tell them that I am scared and ask them to help me not be. They tell me in return what I tell them when they are scared: 'it is OK to be scared. I am here beside and I will hold your hand. You can do it, you can try'. They feel that they can help, they are useful and that they are part of the healing process, that they are not only a collateral damage of cancer. It made us all stronger. 

We, you will feel happy and hopeful again, may be not today nor tomorrow but it will come. In the meantime, let's embrace the small moments, like having friends over for dinner and having a good cry with them and having them hug you. 

We might never stop to be terrified but we will not let it stop us. Never ever. Not for us, not for our children. 

Today I will run our race, I will do it for the both of us and for all the strong ladies in this forum and all the ladies in the world fighting for their health, their happiness, their education, their independence, their safety and for their vulnerability.

Love and healing thoughts sent your way.💕💕

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michelle 21  so sorry you feel so low at this time 😞….. you have been through so much and done so well , I don’t think anyone who has not been through this has any idea of how we feel and what we have to deal with and sometimes the mental side is worse than anything …. I am sending you lots of love and hugs and I hope you had a nice evening with your friends …. You are so strong, you will get through this xxx

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze - That's such a lovely post, sweetheart, in spite of what you're having to deal with yourself. Am wishing both you and your husband ((STRENGTH)) to keep battling on and fighting x💓x

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thank you everyone for all your messages of support about my husband - it has really helped me, reading your words, to stay strong and take things one day at a time. It feels like I have this gentle cushion behind me, keeping me steady. You are such an amazing group 🌟

 

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 those dark holes appear in our path without warning or care... But what the dark holes don't realise is that within each of us is a bright flame that keeps on shining. For now your flame is flickering a bit, and this means the shadows are longer and denser. But your flame is strong like you and in time it will brighten and those shadows will shrink. As you say, the shadows may never disappear altogether, but they will diminish and allow you to have more peace of mind.

And, of course, you can always call on us to shine our flames your way! 🔥🔥🔥

I'm so sorry about your friend. That is very sad, and coming so soon after losing your mother I imagine must make it harder. 

The Rain text that @amy46 posted also really resonated with me, and I think that it's ok to not be ok, to be worried and scared, to feel like crying.

We may not be with you in person but we are with you all the same, and we will keep you company until the days brighten for you. 

A big hug x

 

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21  and @amy46   Sorry girls - please forgive me.  Hadn't properly updated/seen your earlier posts.

I'm so sorry you're feeling so upset. Bad enough coping with what you are having to and then losing a friend on top (I'm so sorry for your loss Michelle 💓)  and unsympathetic queue jumpers, Amy (Grrrr!!)

Yes, That is a lovely piece about the rain. I agree with Amy, I'm sure your friend would have understood. For different reasons to you, I had to stop going to funerals, after losing my Mum and brother within two years of each other. Find them too upsetting now, with my mental health struggles, and people understand why. Hope seeing your friends helped bolster you up.

Lots of love again,  Delly xXx   

 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thank you @amy46 for replying so quickly. The Rain passage is perfect. I’ve never read it before it is so accurate. When you are in this low place it is so difficult to see there ever being a way out or ever feeling better but You are right these feelings will pass I just have to ride them out which is the hard but necessary part.
I really appreciate your response it is very helpful, thank you xx

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all you lovely Amazonian Warrior Ladies

@Michelle21 -  How are you going on with your healing and recovery? Hope you're doing well.  I removed my little gyp about car keys in my previous post lower down. Didn't want to dilute my sincere message to purpledaze. Don't know if you picked it up the unedited version before I deleted it.  It was: "Yes thanks, I do take better care what I do with my car keys, but my bum's missing out on the action though 😞 May have to come up with some other excuses!!" 😆 

@Love running - Am loving all your inspiring thoughts and feelings in your posts and GUSTO for helping out, charity wise.

Hope you're all having a restful weekend. Am sending loving thoughts and healing wishes to you ALL,  Dellypoos xX💓Xx 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  Thank you. I managed to speak to my consultant today and I now have a bit more of a plan so I feel

a bit better. Bloods Tuesday, if still low slight reduction Carboplatin Thursday. It’s the lack of control I hate. It’s strange not being able to do anything to help my white count. I had my covid booster yesterday and feeling ever so slightly off colour today - hoping it’s just that 🤞

Strange experience when I went for my jab. I was towards the end of the queue in a long corridor but keeping a good distance between me and the person in front when the older man behind me walked past and took my place in the queue. I walked up to him And said three times to him ‘excuse me’ before he would acknowledge me ‘excuse me I was in the queue’ he said ‘but you weren’t paying attention’ so I explained to him I was paying attention but that I’m having chemo so trying to keep my distance. Will little good grace he went back behind me but then a few minutes later he managed to get himself into a room for his jab ahead of everyone else!! I was proud of myself for standing up and it’s the first time I’ve said to a stranger I’m having chemo but it also made me feel very vulnerable and a bit tearful. When eventually it was only me and the man in front he was so lovely and insisted I go first. Two sides of human nature ….

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

5D10A2B1-14AA-473C-8BC3-2D9CC2251269.jpeg

@Michelle21 

 Just had to respond to this because when I read it I thought ‘this could be me writing this’ I so totally understand how you feel. I have found myself down that deep hole numerous times since by diagnosis three months ago. In fact I was down there the last few days with anxiety over my white count, missing chemo, what will it mean for my prognosis etc. The only thing I can say that might help you is that it will pass. The first few times this happened to me I tried so hard to pull myself out of it, I berated myself, tried all manner of things to lift my spirits - walks, cuddles, looking out at the sea and up at the sky. Nothing worked. I just felt deeply unhappy and scared for my future, like I would never feel ok again. But after a while it passed. So I wrote all over my diary ‘when you feel like this it comes to an end, you WILL feel better again’  and each time it’s happened I have felt better.  
I completely understand why you don’t want to cry in front of your friends. I’d be the same, but I bet they will lift your spirits and you will feel better for seeing them. 
As for the funeral, my feeling is that you must do only what you can cope with. If you can’t go you can’t go. It doesn’t mean you loved her any less. And I’m pretty sure she would have said exactly this to you if she was still here. 
I promise you, you will feel better, just hang tight, don’t beat yourself up about it, accept that this is it for now but it will change xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @amy46 

A quick answer to white blood cells question (I will write more later, I had a busy day😅)

I was in the same situation than you with low white blood cell counts. My neutrophils were always between 1.4 and 1.6 when I took pelgrastim day 2 and 3. They went as down as 1.0 without pelgrastim injections and then I had to postpone my weekly treatment by one week once. 

Strangely enough, I never felt anything, not more tired or anything. So it was hard to prevent it somehow. It was my Monday morning anxiety to get my blood results and know if I would get my chemo.

During my whole chemo, I have been meeting few people and mostly outdoors (only doing indoors since last week-end and only with vaccinated friends) and been wearing a face mask as soon as I was going into a store (remember that in Swede, face masks are not mandatory and nobody is wearing them. My husband, my kids and I are basically the only ones. I have been lucky so far and did not catch any bugs. I was and still am mostly worried about catching something from my kids who are going to school (no face masks there either). I can't prevent them to hug me and kiss me and I cannot not kiss them or hug them. We have though a very strong hand hygiene policy and coughing in the elbow policy home.

Have a nice evening

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I haven’t written anything here for a few days although I have been reading. I’ve found I’ve gone down that dark hole of thinking the worst, what if I get a recurrence, what if I get secondary, what if I already have secondary. I have convinced myself I have liver cancer now. It is such a horrible place to be and I’m trying so hard to drag myself out but seem stuck here with this **bleep** cloud hanging over me. I know it is upsetting for my husband to see me like this and earlier I cried on my daughters shoulder telling her I was scared. A daughter shouldn’t see her mum like this. 
I don’t know why I can’t get back on track maybe because I lost a friend last week to pancreatic cancer. Her funeral is on Wednesday I’m not sure if I have the strength to go. Maybe I’ll feel better once I get the histology results from my surgery but if they are not as good as I hope then I may feel worse. Last time I had a complete response I know I won’t have that this time but I still have high hopes. I haven’t been out walking as much as I have been recovering from surgery maybe the lack of exercise and outdoors has brought me down. Maybe it’s because I still haven’t grieved for my mum, I don’t have the energy.  Maybe it is a combination of all of this. 
We have friends coming over tonight we haven’t seen them for over 6 months. I feel like I could cry at any second, they are good friends and wouldn’t mind but I mind. I want to feel happy again not frightened. I know I will never be carefree again but I want to be hopeful about the future. 
I love that this is a supportive group and there is alway so much positivity and optimism here. Please send some my way, any help to stop me from feeling like this would be truly appreciated xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze I am so sorry to hear your awful news. You must both be in shock, just when you thought you were heading out of this horrible cancer world that we find ourselves in. I really wish that the test results are back quickly and give a positive treatment route for your husband. Sending you lots of love x

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running …. Amazing writing as usual  ….we are thankful to you for all your inspiring words xx

bloods ok for 7th chemo Monday 👍bring it on 

love to all you lovely ladies xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Purpledaze …. So sorry my heart goes out to you and your husband , life is so unfair at times I can only imagine how you must feel and yes you have been dealt a raw hand …..we are all here for you if you need to rant and will support you as best we can xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze 
there aren’t really any words for the shitty luck you are having. Just sending you a hug x

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@worriednow 

I’m a bit of an imposter here on the may group as I really belong in the august group but I follow @Love running  to keep me inspired to keep running. I read your post and I just wanted to say I am thinking of you and sending lots of positive thoughts in your direction xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running I found it very emotional reading your post this morning. I love how brave you are and how are you put your self out there to talk about this to help others. I wonder whether you like this in the early days? I would love to help others who find themselves in a similar situation to me. I’m a doctor and I work big hospital trust so I potentially have access to thousands and thousands of people. I’ve written a kind of blog post about my story explaining how, even though I checked my self regularly in the shower as we are advised to do, I somehow still missed 3 1/2 cm lump in a boob that would never be compare to Pamela Anderson’s. I’ve subsequently seen there a much better way to do a self examination and I would really like to raise awareness about this. I haven’t told loads of people about my diagnosis I’m quite a private person I find it quite excruciating when people I don’t know well want  to talk to me about these very personal things without my invitation. I’m thinking about sending this blog/email out but so far I haven’t been brave enough. I also thought about doing the hundred miles October for breast cancer awareness. I could easily do it - I’m doing it already but again I can’t quite bring myself to put my story out there because of all the attention it would invite. My chemo nurse said not to worry about it for now, to concentrate on myself and these are things I can do later when I feel stronger. Maybe it will be easier for me once I’ve come through the treatment. Anyway I think you’re amazing and I love reading your posts whatever they’re about. I really do think you are a writer.

The other thing I wanted to just ask on this

thread is if anyone’s had any experience of treatment being cancelled or dose being reduced due to low white count. My neutrophils have dropped and dropped until last week they were 1.5 then 1.3 this week. Has anyone had this? What happened? I’m really anxious about catching a cold or something but how at risk am I with neutrophils of 1.3? Maybe I am worrying unnecessarily? Any words of wisdom or experience gratefully recieved 😊

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning fellow amazons,

Today 1 October rings the start of the Breast Cancer Awareness Month 💕. This is our month and it is the first time I will participate as a patient and not as just a financial contributor. I always bought the pink ribbon and made a small financial donation, but it needs more than that. So today is also the start of my journey to bring awareness and engagement around me. 

Today I dedicate this day and this month to you all, out there still struggling with chemo, or the aftermath of the disease, to all of you supporting, cheering, carrying me through chemo.

 

Every day I will be thankful to have met you through this forum.

Every day, I will dedicate something special to us, to all the women going through this battle, whether it is a hug, a thought, a message, a phone call, a run, a charity, a donation...

Every day I will be proud of my scars, of my bald head, of my heavier body, of my tired eyes,

Every day, I will let my tears swell in my eyes and run down my cheeks because even strong warriors need a good cry

Every day, I will let out the scream I bottled in for so long because it will feel good

Every day, I will tell someone that it was the hardest battle I have fought 

Every day I will accept that I don't have to be strong

But above all,

Every day I will be proud of you, of us and myself for going through this battle

Every day I will make it the first day of the rest of our life, a new beginning full of opportunities and hope

Love you,

Barbara

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Dear @worriednow 

Well done for having gone 17 chemo. Me too, I hope that I can deal with the aftermath of this experience.

I wish that despite your alias worriednow, you can see the future with hope and I send you too lots of strengths and positive vibes.

take care 💕

worriednow
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Iam diagnosed with lobular too  with bone mets and heard about it only after my daignosis. Had 17 weeks chemo taxol, scan showed good response now on tamoxifen. Hoping I will face this horrible mess iam dealing with. May you have lots of strength to overpower this and so all of our beautiful warriors here 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

To Barbara @Purpledaze 

I am so so sorry to hear that you have to go through this trauma over again with your husband. I can't imagine what you are going through.

When you should be looking at the bright wild world, this one has shrunk again. It is so so so unfair to be kicked on the ground when you were just about to get back up again. I wish I could take you in my arms and tell you it is going to be OK, he will be OK and you are going to be OK.

Your husband is in his misfortune is fortunate to have you by his side. You know it all, you have been thought this and you got this. He won't be alone in this maze of medical terms and treatments. He has you to guide him, support him and comfort him.

And you have us here in this forum. We will be there for you. 

I send you hugs, love, strength, positive vibes and healing thoughts. 

Barbara

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Oh @Purpledaze . I am so so sorry to hear that news. Life is so unfair sometimes. You are quite entitled to rant on here snd we will all listen. I hope the further details that your husband receives today are as good as can be expected. As you say, your knowledge will be extremely helpful. You will be able to be so practical on the little tips to get through treatment as well as one can. And you will have learnt so much, on the jargon, and even on how to deal with the consultants, which can be a learning curve in itself!  - ie to ask more questions and be more demanding of them. Hopefully your husband will take comfort from the fact you’ve gone through this horrible experience and coped. But you are right, it’s shit, shit, shit. ( And you’ve finished your own treatment but, as we know, that is not the end of the journey mentally so don’t forget to look after yourself in this too) . Very hard. Big hug. Xxxx 

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Dear Purpledaze (Barbara)

Ohhh WHAT??!! Jeez darlin', please forgive my expletives, but s**t b***ery s**t. 

I am sooo very sorry to hear about your husband, can't tell yer just how MUCH. Your post had my tears welling up in sympathy/empathy for you both. Not surprised you're feeling "downbeat". Completely understandable. 

Despite it being through the ether, I know these great women on here will help to keep you bouyed up with love and support as much as possible. Yes, isn't it a godsend, this Forum. A brilliant idea of whoever set it up.

Well done to you for reaching where you are in your treatments. Ref your "itching" - lavender or tea-tree gels are very, very SOOTHING, natural antiseptics that also promote or help healing, plus pretty innocuous/non irritant if you can get hold of some, rather than just bland emollients/moisturisers that E45 is (I have a medical background, but also trained in Aromatherapy many years ago). Boots or good chemists often sell them. You might want to check it out with your nurses first, though.

I'm sending loadsa Love and Strength to you BOTH, and an enormously BIG but gently TIGHT Delly HUG 🤗 ❤️ ❤️ ❤️

Lots of love to ALL of you too, with all your battling. Not so sure about wearing caps with the "F" word on, though a hearty ha ha to it 😆 but keep KICKING that BUTT girls xX💓❤️💓Xx      

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running so happy for you that you have completed the marathon of your chemotherapy, and congratulations on your interview - if you spoke like you write then you will have been totally inspiring! And I have always thought that everything sounds better in a French accent 😉 And, hey, guess what I am also Barbara!

@Michelle21 the poem you shared was such a spot-on depiction for me of my chemo days - the narrowing down of the days to the minutiae of moving from sofa to armchair etc.  But the last line really rings true - I think BC has shown me there are many "gifts" that surround me, even on the hardest days of treatment and side effects: this forum is one of those gifts.

I have now completed my radiotherapy - I only had 5 sessions and compared to chemo it felt like a "drive in".  I have some tenderness in the breast that was treated and it gets itchy. The radiotherapist explained that side effects will continue for 2 weeks after treatment, possibly a bit more. She also explained that the RT tends to "undo" a bit the healing that has taken place after surgery, which is why my surgery scar feels tender again.  I was advised to use unscented moisturising cream on the treated area twice a day - e.g. E45, Aveeno, Cetraben - and I found it has definitely helped, especially with the itchiness that I have experienced.

All that's left now for me is biophosphonate once every 6 months for 3 years - again a breeze compared to chemo. Although, I will have it administered on the chemo ward, which will undoubtedly put dread in my stomach, but I will listen to some upbeat music to drown out the dread! 

On my last day of radiotherapy, the nurse asked me how i was going to celebrate.  I found this question so hard to answer, and in the end just smiled and said something non-descript becuase in the cruel world that is cancer, as I am barely finishing my treatment, my husband has just been diagnosed... (he is in hospital having multiple tests to confirm type and stage of his cancer. On the plus side, at least I know my way round the hospital like the back of my hand and can guide him about different tests and some of the medical language etc). I still find it hard to believe this is happening, and feel as though I have been kicked to the ground. It has made me realise how much easier i find it to manage my own pain and anxiety, compared to supporting a loved one through this. Where I felt strong during my cancer, I now feel weak. Where my emotions were relatively stable during my cancer, the floods of tears now well up at any moment. It's weird because when my mother was diagnosed with cancer, I didn't find it so hard to support her, and I wonder if it is harder now because I have experienced the S%#t of cancer myself, and can therefore 'see' ahead to what my husband will face... Whatever the case, it just feels like we have been dealt a very raw hand.  All the post-treatment plans we spoke of and which kept me going when chemo was dragging me down, have had to be shoved back on hold.  We are back to the 'smallness of life' and the fear.

Sorry for such a downbeat post - I will get back to my pragmatic self soon, no doubt.  But for now I just want to 😱 😤 😢

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning ladies,

Today I did this morning the hardest run ever, it was my 50th run since the first surgery on 16 March. I felt the weight of all 16 chemo on my body and brain. I never felt so tired... it is like I had been holding my breath since 18 February and now I need to learn how to breath again and I am gasping for air. 

I saw this quote this morning, which fit my mood: 

'Healing doesn't mean the damage never existed. It means the damage no longer controls your life' 

I am looking forward to feeling that C no longer controls my life. Healing will take a while but I will be searching for it.

I wish you all a day without pain and struggles. Lots of hugs and love your way

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running @Just a short message before I go to sleep to say Well done crossing the finishing line!! And well done on reaching out on social media re the running / exercise and cancer. I feel there is still so much lack of knowledge/ support re this and what you are doing helps move the message on. I don’t think the exercise and cancer message is out there enough in the uk yet. 
Also the story of your hat made me laugh a lot. 
night x  

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running I will watch this space ! I can see you in a new career, that sounds just up your street and that book will come ! You are a natural writer and I can’t wait to say I told you so 😁
i totally agree about non alcoholic bubbles etc  definitely need improvement 🤔

good night to all you ladies xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good evening @TicTok 

Weird isn't it how time can suddenly feel that it stretches and days seems like weeks and weeks like months. Only 2 left, and yet it feels like still 2 left. The waiting and the uncertainties are the worst. Your turn will come and I will be there to cheer you on the finish line.

My week-end with my friend was just what I needed. Relaxed, chilled and it made this last 2 days before the final treatment feel like hours. It really helped time fly.

I am glad that I had the opportunity to do it. The weather was gorgeous which was a bonus and the temperature raised enough to sit outside and feel the heat of the sun. 

We had our non alcoholic champagne/bubbly tasting - well there is some improvement needed. It will definitively not stay on my top 10 favourite beverages. 

As the poem from @Michelle21  said, the small things are real gifts. I felt so lucky and hopeful.

Good night, 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

Thank you for the poem. I recognised myself in it.

'I’m not unhappy. I have learnt to drift and sip. The smallest things are gifts'

I like this, it is so true. 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running …congratulations and very well done, I can’t imagine at this moment how it must feel , I see a chink of light with only 2 to go but still seems a long way off . Your writing amazes me , it would take me all day to write that , I hope you had a fantastic weekend with your friends and wish you all the very best with your recovery and thanks for all your inspiration and positive vibes to help us through this crap time …. Take care and stay strong xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good afternoon to all of you amazing ladies,

I did it. I am done with this step. Now I have one month of rest before starting 23 sessions of radiotherapy and 5 to 10 year anti-hormonal treatment. Not looking forward to latter one.

Until the end, I was anxious that it would not happen. It took a long time on Monday morning to get my blood results, again my neutrophils were very low even with Filgrastim. I was really scared that it would be postponed. But it happened. I guess they got worried that I would strike and refuse to leave the ward if not given my last paclitaxel... The exuberant Frenchness in me can be scary 😂

Yesterday my friend Lin who finished her chemo 6 weeks ago, waited for me at the end and she gave me a cap to increase my collection. The cap has F.... cancer written on it, which I though was cool until I went to pick up my youngest daughter at her international school and saw her horrified eyes. She screamed: mum you have the F word on your cap. I was laughing in my head and a bit embarrassed too. I am pretty sure though that I am now not only the weird mum with a funny haircut but also the cool mum that has swearing words on her cap. I will keep wearing the cap but not to school. 

My PICC line is gone. I feel so much lighter with the PICC line off, weird isn't it? The PICC has not bothered me really (except the rash from the tape at the end) but still it feels so nice to be off with it. The nurse said that in 2-3 days I can bath. So like you @Coastal I will have a 'fall' bathing on Friday - I will take a dip in the lake behind where I live: air temperature 12 degrees, water temperature 18 degrees. It is part of a promise I made to myself that I would bath after the end of my chemo. The same way, I winter bathed the day before my surgery in a frozen lake in March: air temperature 5 degrees and water temperature 3 degrees. I am sure I will be like @Coastal feel revigorated (and may be a little more alive). My apartment building has a sauna which I will book too😅. I am so looking forward to it. The freedom of bathing and taking saunas. A little piece of my previous life back...

Encouraged by your comments, I did today a 30 min interview sharing my experience of being diagnosed with BC, undergoing chemo and what running/training meant to me during chemo and how it had helped me mentally and physically. I answered positively to a request from from Look good Feel better for help to share my story with tpot (who promote educating and inspiring spa, beauty, health and wellness professionals, to help better support their clients living with cancer and other chronic diseases). There will be an online conference on 6 October called: Cancer Care - An Integrative Approach where they will use parts of my testimony to encourage health and wellness professionals to support cancer patient undergoing chemo.

Holy molly, I was so nervous (my thick French accent came through so much - the stereotype of the french with the baguette under her arm and the camembert in her hands). Some of it might also be used for social media activities. This is scary but may be my testimony can help other women to not be afraid to put their trainers on and exercise during chemo and may be feel a little better with themselves and cope better with side effects. It hopefully will also encourage health and wellness professionals to open classes for women undergoing chemo and not to be afraid to 'push/encourage' them to exercise. I think I said that we were not made out of sugar (well I can't remember it all).

This is the most crazy thing I have ever done - I never been publicly active on social media, only privately with my friends. We shall see where this will take me. 

I wish that all your niggles will resolve soon and I send you all lot of positive thoughts, healing vibes, love, encouragements.

Keep strong, keep on fighting, the end is close. We will see and live better days. 

Love you all

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

It sounds like a few of us have a few niggles. Fingers crossed everything calms down snd is happily resolved. My oncologist said she has never known in her career cancer to spread during chemo, so I’m holding on to that. She is in her 50s so that’s a fairly long time. 
@Michelle21 Once this radio/ my niggles are hopefully behind me I will turn my attention to the issue of my remaining boob! I think I will ask for a second opinion. I’m sure ( if I ever chose to do so) reconstruction would be easier starting from scratch! 

This is probably a daft question but you mention the chemo treatment line. What is that? I take it not your BC nurse. Is it the chemo nurses at your local hospital or is it a National helpline? 

 

Well done @@loverunning getting to the finish line. Are u having radiotherapy or is that you completely finished? Sorry if I’ve said before, I lose track. 

love to all 

Fleur xx 

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running Really good luck today!! I'm so happy for you that you've reached the last one finally and I hope minimal side effects.  You've done so well!  Looking forward to hearing how you are soon.  Take care 😍

@Michelle21 I do love that poem - especially the bit about life getting so small - that certainly happened to me and I think I'm still there, although railing against it and forcing myself out now.  The more I do the better I feel.  I live by the sea and went for a dip on Saturday for the first time which felt so liberating.  Then went outdoor swimming on Sunday!  So a really good weekend! Re my stomach issue, this was exacerbated by the chemo but was there before - they told me it was due to my anxiety and wasn't a red flag issue.  It feels like I have something inside under both my ribs clenching my muscles, my ribs also hurt both sides.  I had a diagnostic scan when I was first diagnosed which showed no spread, so the Oncologists don't want to do any more scans because they don't think I could have cancer elsewhere.  They are discussed it again this week and they might offer me a bone scan.   I've also been to my GP about it and because of the cancer diagnosis they are reluctant to put me forward for any other investigations because I'm still having cancer treatment.  I guess I just need to rule out the cancer.  I totally agree about not wanting to add another problem into the mix and if left to myself would probably put my head in the sand until radiotherapy is over, but my family are keen for me to investigate it just in case it's something really serious.  They are very supportive.   I'm really glad that your stomach issue is getting a bit better and resolves itself soon - our bodies have been under such stress, and for you the operation too - it's definitely going to take time for everything to settle down. Hope all is well for you this week 😍.

Love to all of you beautiful people

Nicki xxx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

A good friend of mine send me a gorgeous book of poetry and I came across this this morning. 
This is for you @Love running on your last day of chemo 🤞 and to all of us who are going through and have been through chemo and all the other hideous treatments that come with cancer.

Chemotherapy  by Julia Darling

I did not imagine being bald

at 44. I didn’t have a plan.

perhaps a scar or two from growing old,

hot flushes. I’d sit under a fan. 

But I am bald, and hardly ever walk

by day, I’m the invalid of these rooms, stirring soups, awake in the half dark,

not answering the phone when it rings.

 

I never thought that life could get this small,

that I would care so much about a cup, 

the taste of tea, the texture of a shawl, 

and whether or not I should get up.

 

I’m not unhappy. I have learnt to drift

and sip. The smallest things are gifts. 

Sorry about the line spacing but I hope everyone can relate to some lines in this poem xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks to everyone who has wished me well in my recuperation, all is going as it should but just feels too slow for me! I really want to get on with life again, what with the pandemic in 2020 and this in 2021 it’s been a while! 
Hi @Coastal what is the stomach problem you have? I finished chemo on 26th Aug but still have a stomach issue. I rang the chemo treatment line but they hadn’t heard of it before which I was surprised about. After I eat my stomach bloats up and goes quite firm. A flat chest and a pot belly isn't quite the model-esq look I was going for! I plan to see what it’s like when I finish treatment and if it’s still a problem seek advice. I just can’t face throwing another problem into the mix. It does seem better than it was so 🤞it goes in time. 
@kitkat nice to hear from you again, you were so kind to me in the early days of my 2nd diagnosis, I just want you to know how much I appreciated your support. 
delly I hope you take better care of your keys now! 😂

I hope everyone had a good weekend xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @gardengirl200 I’m sorry you were refused a double mastectomy. I understand your fear about not detecting it if you were to get it on the other side. I only went to the GP about my first one because it was painful, never for one second did I think it was cancer and am embarrassed to say I didn’t check myself. The second one was picked up by my annual mamo and I couldn’t feel that either, that had also gone to my lymph nodes already. It is terrifying and I think if you feel strongly about it you should ask again and get a second opinion from another specialist. 
I asked for double because of having 2 primary’s which is very unusual but happened. The genetic tests came back negative. The surgeons and oncologist were all very understanding of my reasons and didn’t even refer me to a psychologist which I understand is the norm. I have said to various people that it was an easy decision to make but might be hard to live with, but I will cross that bridge or those feelings/emotions when they happen. For now I feel ok about my decision I just want to be rid of cancer and hope like everyone here that it doesn’t turn up elsewhere. 
Even when you are told it is normal to worry about every ache and pain it doesn’t make it any less worrying! The chances are chemo has upset something in your throat and it will be fine but we all know here that waiting for tests and results is difficult. Hopefully the time will go quickly and the results will be good xx

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

Thinking of you today and cheering you on to the finish line! Your posts have been so inspirational and I am just delighted for you that you have finished. I am not drinking at the moment so this morning I put on my runners and went out into the wind and the rain and had a run for you instead! 

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Kitkat - Hey, WELL DONE YOU girl.🤗

Love Running - I'll be joining the other mentioned wine appreciation girls - I Don't wish to mention any names 😆, but @Coastal and @gardengirl200, plus any others of you who haven't admitted to it? (I'm teasing you 😆!!), in raising a glass to you tomorrow. YEY! and "Cheers" to your LAST treatment 🍷🥂 

And I also raise it to ALL the rest of you kicking that BUTT.

Sending lots of love and BIG Delly hugs to "EVERYONE" xX❤️Xx

Kitkat23
Community Champion

Re: MAY 2021 CHEMOTHERAPY STARTERS

Well done love running!!

youve done a marathon!

i finished chemo in November last year.....like you I did 12 paclitaxol and 4EC....like you, my chemo end date was one week later than first anticipated....it seems like light years ago now....onwards and upwards .....I wish you the very best....a happy and healthy future 😁

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good night to all of you,

This will be a short message (I will write more tomorrow). 

Tomorrow is (hopefully, I don't dare to fully believe it) my last chemo 16 out 16 (4xEC and 12 paclitaxel). I can't believe this moment is finally happening.

When I started on 3rd of May, 20th of September changed to 27th of September felt so far. Unreachable.

The journey has been long and hard, but without you beautiful ladies, it would have been a harder road. You have been there when I doubted, when I was sad, when I was disappointed, when I fell, you were there comforting me, praising me, inspiring me, encouraging me, listening to me and above all making me smile and laugh at time when I needed it. For that I will be for ever grateful. So from the bottom of my heart, thank you.

Tonight I will sleep dreaming of meeting you in real one day. Good night.

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 Ha ha!  I hope I find my next glass of wine delicious - I'm going to try again tonight and hope it tastes better.  My taste buds have been gradually getting back to normal - coffee and tea actually taste nice now yay! so I've gone back to my caffeine habit this week.  Amazing how happy it makes me!  

Re work I don't think you're being a light weight at all!!! I can only go back to work because my job is in no way as pressurised or needing of brain power as yours.  I give social care advice to people but haven't had any client work since my diagnosis so I'm just helping out with administration.  I am concerned about going back to client work though as the chemo really made me muddle headed and yes my short term memory has been shocking!  This does seem to be getting better though - its been nearly 4 weeks since chemo and I feel much more on the ball.  I seem to be able to concentrate more now but my short term memory is definitely not as good as it was.  I can't hold information in my head so readily so I'm tending to write down anything that's important in case I forget it.  The Oncologist said that it just takes time to get better and that the chemotherapy drugs are still working in your body a month after your last one.  So I'm crossing my fingers I'll gradually go back to normal.   

I've agreed with work that I'll try to get back to normal hours/work after radiotherapy.  I'm so glad that your partners haven't put you under pressure to go back and great that you are still getting paid.  I got 6 weeks full pay and then 6 weeks half - not great!  I think it's really important that we focus on ourselves, physically and mentally as much as we can.  Luckily my colleagues have been really helpful and concerned about me so I don't feel the pressure to perform at the moment.    

How your radiotherapy going? I hope ok!  I understand about your concerns about your throat, all aches and pains are a real worry.  As your breast care nurse says it's bound to be fine.  I have worries about my stomach and ribs and have asked my Oncologist for a scan.  They've told me the stomach issue isn't a concern as bc doesn't go into the stomach area, but apparently it can go into the bone, so I may be offered a bone scan.  I'm going to try and not worry too much about it.  

@Michelle21 I'm so glad that all is okay for you post operation.  You will be rocking that model look!  I'm hoping that you are recuperating well and sending you lots of love and positive vibes.  I does make me feel more confident going out for a run (well walk and gentle jog really) and I'm definitely feeling more confident about my new look.  I think we should be really proud of ourselves for going through all of this and still managing to cope and get out there.  I'm amazed that I'm still standing and not in a heap somewhere to be honest.  

@Love running thank you! It always makes me feel stronger and more able to cope reading yours and the groups posts.   I think a really good idea that you use your experience to help others go through chemo/the strains of cancer through training/running - I'd definitely join your groups and wish there was one in my area!  I hope you enjoy your weekend away with your friend and the non alcoholic drinks taste like the finest champagne!  

Hi @delly @TicTok @amy46 @Purpledaze @@and anyone else I might have missed (sorry) - I hope your week has gone well, treatments are not too bad and you have relaxing weekends as much as is possible.   

Lots of love to you all

Nicki xxx

 

  

 

 

 

 

 

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

Im so glad your op went well. I found getting one boob removed easier and less sore than expected but of course two is double everything, including exercises, and there is the mental side too. So I didnt want to assume how you would find it. I now have almost full mobility on my op side, and I am so glad I did my exercises religiously. I actually find stretching/yoga even more satisfying now.  Hopefully your recovery will go well. 

I asked ( but was refused) a double mastectomy ( and I understand the reasoning) but I do wish I could have had that. Apart from the medical reasons, as you say, clothes hang so much better on the flatter side.  I didn't bother mentioning that to my monosylabic surgeon  though 😉. Can I ask you, did you discover you had the breast cancer gene, or was it because it was a second primary on the other side that you had a double mastectomy?  There is alot in the media just now about checking ones boobs ( which is great) but lobular ( which I had) does not form a lump in the same way as ductal and is very difficult to feel. I wish there was more awareness of lobular breast cancer in the media and amongst women, especially as lobular does not show up well in a mamogram - my NHS screening mamogram came back clear. I worry I might not detect any lobular on my remaining boob until I get to 5cm again. 

 

I'm having on going issues/worries with my throat. The thrush tablets made no difference, nor have reflux pills and a test for bowel infection come back clear. I was referred for endoscopy and amazingly got an almost immediate NHS appointment but then discovered I needed to self isolate so the long and short of it is I need to wait til after my radio is finished ( another fortnight) as I cant self isolate when that is going on. Im just hoping the throat issue is something innocent - perhaps even stress. I am reassured that my breast care nurse says BC just doesnt spread to the oesophagus. But, as we all know, in this game we worry.

Once I've finished my rads, and hopefully resolved the throat issue, I will definitely get my trainers out. I would love to join you guys anywhere in the UK and even Sweden  for a run. Keep strong everyone. @Love running Hope your last chemo goes well. That will be a big day!! I had 6 sessions ( bad enough) and so I have SOooooo much respect for those of you who have had as many as 16. 💪

💪💪

 

Love to all, Fleur 

 

delly
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hellooo again, all you lovely and brave women,

@Purpledaze I agree with @Michelle21 , about your BRILLIANT motto 

"Boobs Do Not Maketh the Woman". Blummin fantastic. Think it'd be a great idea to have T-shirts printed up with it, to sell on the BCN on-line shop and the Flat Women site.

Michelle - Your's being: "You will soon be looking in the mirror at parts of you RETURNING, not at what is MISSING", has to be equally applauded!! I so hope you're doing well after such a massive and major op.

@Love running - Hope you enjoy you're girlie weekend. Forgive me distracting you all  away from boobs, if I may, and back to our skiing knee injuries. Mine was because my ski binding didn't release when I took a stumble, so my knee took a severe sideways hit. I was in a lesson group, who were all down at the bottom of a slope, impatiently shouting "Come on Adele, stop messing about", whilst I was lying groaning in pain!! 😒 Finally, the instructor, a very handsome, Magnum like moustached Austrian hunk, came bounding up sideways on his skis. I couldn't stand up, knee kept giving way, and in AGONEEEEY! So, finally taking me seriously, unclipped my skis, hooked my arms round his neck, hoisted me up across his chest, and skied me down to the ski-lift. Despite being in so much pain, I couldn't stop smiling!! 😆 as I'm "nuzzling" this hunk's neck and going at an alarming speed! All very "thrilling"!!! At the ski lift, he phoned ahead to the emergency services, to meet me down at the bottom of the next ski lift. I then had him, and another hunk, so now one under each buttock! (again I'm giggling at all this 😆), lift me up and load me onto the lift. I'm then rushed off to the hospital, where I was seen by yet another handsome Orthopedic - is there something about Austrian men?? Badly torn cruciate, hanging by a thread. Put in a full leg plaster and obviously out of action for the last few days of the weeks holiday. But, my boyfriend and I WERE flown back FIRST class, and given the works - champagne, lovely meal, etc. He jokingly said: "Did you do it on purpose for all this attention"!! YEH, if only, ha ha.

Ironically, a couple of years ago, after shopping at a local small supermarket, I loaded my bags into the boot of the car, shut the boot, and then couldn't find my car keys. After retracing my steps through the shop, thought  "Uh Ohhh"!! I'd not only dropped them and locked them in the boot, I hadn't UNlocked the car doors either!! PLUS, My house keys were sitting on the front seat, so I couldn't go home for my spare car key! ARRRGH. Another negative plus - the shop was just closing up for the night too! Had to ask to use their phone to call out the AA. One of the shop attendent guys, soo kindly stayed behind until the AA man arrived, who fed a stiff wire through the door crack, to press the electronic window opening button. Managed to only "half" open a rear window. I'm skinny, so guess who was to climb through? And guess what helped - Yeh - I had a man under each "buttock" again!! Only this time trying to force feed me through the window opening. Set me off in giggles. I couldn't stop laughing, which then just made me "limp", became infectious, and even more the funnier, as they were trying to "shove" or "feed" the hopelessly limp me through the window!

We did it in the end, for me to fall onto the back seat (still giggling), pull it down, and retrieve my keys. YAHOO!!! I hugged and kissed 'em both. Could NOT thank them enough.

What lengths I have to go to, just to have my buttocks "fondled", hey!!! Just wanted to share a few limp giggles with you - in the hope it makes you chuckle.

Lots of love to you ALL, and a big hug, from a definitely DoolallyDelly xX❤️Xx

 

           

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks @Purpledaze 

BOOBS DO NOT MAKETH THE WOMAN

has become my new mantra, it makes me smile each time I think of it! 

@amy46 I have no experience of neutrophils being low but I did have carboplatin and it is harsh stuff. I have been left with numb feet and finger tips, I hope they will be back to normal in a couple of months. It’s not the best but doesn’t stop me doing anything. I assume you are also TN so the main thing is we rid ourselves of that and the rest will sort itself out. 

@Love running  I have seen the ‘chase the sun’ events before but never signed up for them. Let me know which ones you sign up for and I may be there with you. I already have half marathons in March & April and hopefully walking (part of) the Great Wall of China in May. It was postponed due to COVID and is a fundraiser for my cancer hospital. Little did I know when I signed up that I would just be getting over cancer AGAIN!! Life is strange. Your run on 3rd October will be monumental, a real celebration of how far you have come. You will soon be looking in the mirror at parts of you returning not at what is missing. 
Have a great weekend with your friend and get ready for Monday your final chemo 🥳

I love that Fleur, Nicki and Barbara have introduced themselves too, although hard for my little Chemo wrecked brain to remember all of these new names!! 

Have a relaxing, fun, enjoyable, SE free weekend everyone xx