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July 2020 chemo monthly starters

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Re: July 2020 chemo monthly starters

The doxatacel isn’t as vicious as the FEC in my experience although today day 6 my guts exploded so I have been lying low all day. I’m feeling a bit down and weary as it is all dragging on rather but at least I’m not in so much pain now. I made a birthday cake for the lovely husband and some parsnip soup but otherwise just slept.
Sending warm wishes to all of you going through this ordeal. It’s tough! 
NB

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Re: July 2020 chemo monthly starters

Hi everyone, 

I'm day 13 on docetaxel and judging by some of the experiences I think I've faired okay. I have had mild joint pains but all of which have been completely manageable. I had one bad day last week whereby I had sharp hip pain and couldn't walk very far but thankfully I was better the next day. My mouth has been rubbish I can barely taste anything and feels slimy. I am coming out the other side of this thankfully but has now been replaced with heartburn despite being on medication for this. 

I had my consultant appointment last week she was pleased with how things are progressing and told me what my secondary recurrence stats were. She believed them to be moderate but when I rang the helplines I use they said it low recurrence stats and one said they had never heard of recurrence stats being split out between primary and secondary so who knows 🤷‍♀️🤷‍♂️

I am waiting to be assigned to a volunteer from the someone like me team who can give advice on how they cope following the end of treatment and the worries of recurrence. Forewarned is fore armed, I am looking to be positive about things, I am starting to using calming techniques--relaxing and deep breathing. 

 

Hope every one is okay xxc

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Re: July 2020 chemo monthly starters

hi yes hv actually done some house work today. Thou was shattered after wards. As that was my last chemo every think seemed to seem worse and take longer to go away.  The upset stomach after 3 days and me taking just the 1 imodium stopped.  Thou now I gone the other way.🙈   iv got hospital scan tomorrow to have a magseed marker put in ready for my OP on 19th.   Oct.   So got 3 weeks to get my strength back up. Hope every one Is haveing a good weekend.x

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Re: July 2020 chemo monthly starters

Hi everyone,

yes, I completely agree with you Tara, always ring the Acute line with any side effects promptly and talk it through for your individual circumstances. All of our cases are unique.

I left it far too long last cycle in hindsight (it’s a wonderful thing!) as I’d been told by my oncologist to expect diarrhoea and pain I just suffered it for 10 days. Too stoic. Then was told at the consultation this week I’d left it far too long before calling the line and could have been very dangerous 🤦‍♀️. Felt so upset, the day after having to have my PICC line removed and re-threaded as it had moved too! the oncologist reduced my chemo dose by approx 20% as that reaction was apparently too extreme, along with increasing the meds to combat side effects, including diarrhoea if needed. Was v scared this reduction In chemo would affect my treatment and prognosis, but was assured the chemo would still be effective. So far so good since Thursday, we’ll see how it goes. 

Congrats on last chemo Tara, amazing milestone! Hope you’re ok with the injections. I have 7 this time rather than the 5 I’ve had before.

Butler, how are you feeling now? Xxx

Everyone else, big hugs and keep going xxx

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Re: July 2020 chemo monthly starters

Hi ladies,

Hope everyone is feeling as well as they can today.

Butler- with regards to the diarrhoea, I had this quite terrible last time. It was literally running from me like you have described. I contemplated taking Imodium  and almost did, but rang the hotline first to make sure. Glad I did as I was advised that I would need to do a stool sample first before taking anything incase of a tummy infection.

 I am not trying to scare monger you all, but please call your unit first if you haven’t before taking anything as this could affect your body. As it was my results were clear, although they did take a couple of days to come back, so always best to call as soon as new symptoms begin.

 Nancy - I do write some silly things with my fat fingers. Glad I can make you giggle though. I like to make people happy and smile, especially with what we are all going through.

 

 I had my final chemo yesterday. So far so good. About to start 8 days of injections now so will have to see how they go 🤦‍♀️

 Have a nice day all, and please know that although I have finished chemo I have got you all and are always here if you need me!

 Love 💕 Tara xx

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Re: July 2020 chemo monthly starters

Hi heather 

I'm glad I came back on here and read your post.  I had my last chemo on 16th  and dont no why but was thinking by magic as it was my last I wouldn't suffer so much  as they had reduced my taxil drug.🙈 but the pain in legs and feet just as bad,  and on Tuesday for the first time out of the 6 session of chemo I got the awful diarrhoea  I just thought I put up with it havnt eaten as it was going straight through me. Thought it was easing up yesterday  so my husband said I had to try somethink so he got me chicken soup.  Ate it  then with in a hour I ran to loo again.  So reading your post I took a imodium. So fingers crossed I will stop now. And start to feel better. So thank you all lovley ladies on here for all the advise and how your feeling  on here.

Hopefully we will all have a lovley weekend.  💕💕

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Re: July 2020 chemo monthly starters

I’ve been watching with trepidation but had my first Doxatacel and HP yesterday. I cycled in and took a nice strong coffee and cake into the ward. It was different!  Very sociable sitting in a bay with jolly fat bald ladies chatting for six hours.  Time passed quickly and all was fine. I haven’t felt sick but the steroids made me a bit wired last night. My feet are buzzing but all else is fine.  I think it is the calm before the storm! I am armed with drugs, ready! 
BUT there Only two sessions left and it seemed it would take forever to get there. I can see the light at the end of the tunnel now. 
I’ve got to get through the surgery olive before I reach Tara’s radiotherapy olive 😂 Then more Herceptin and hormone blockers. It’s a whole jar of olives! 
Keep on keeping on folks we will get there.

NB

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Re: July 2020 chemo monthly starters

Hello all you lovely ladies and thank you so much for all of your advice. Shi your description of ‘slime mouth’ made me laugh - a very apt name for my mouth at the moment. I have an appointment with my oncologist on Wed so will definitely tell him everything. I am not feeling so achey thank goodness and have a bit more energy.

Tara so pleased you have almost finished this bit of your treatment, good luck with the radiotherapy - please let us know how it goes.

Have a good week everyone xxxx

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Re: July 2020 chemo monthly starters

Hi Helen,

sorry to hear you’ve suffered with Docetaxel too, but also glad we can talk about it and don’t feel alone with it. It took me about 10 days to feel better, but didn’t see improvements in my stomach until I started taking Imodium and diarolyte on around day 10/11 On the advice of my community nurse. I will do that a lot earlier next time, but am also going to get more anti-nausea meds. Baths helped with the pain a bit, was comforting. The mouth is awful, I did find chewing peppermint chewing gum helped a bit, even if just taking the taste away for a while.

I’m now on day 15 and feel good, I managed a big clear out with my mother in law yesterday, sorting out the house and toys which was long overdue. Was cathartic! Hopefully you will pick up soon too, and it’s such a huge relief when you do!  but please ring the Acute line for advice too, as I’d do that a lot sooner next time if it was as bad. 
Thanks Shi for all of your advice.

Enjoy the sunshine everyone and keep going!

Heather xxx

 

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Re: July 2020 chemo monthly starters

I meant lounge not olive 😝 not sure where that came from!

xxx

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Re: July 2020 chemo monthly starters

Hi Shi,

I will definitely take your advice and move to the radiotherapy olive. I have found sharing experiences of treatment really useful. Thank you all.

 I also intend to get some good cream before starting radiation and will drink plenty of water too. Was wandering is sparking water okay? I have acquired a taste for this now since the Docetaxel has played havoc with my taste buds.

 Thanks for your advice and tips. You are a great support.

 Have a good day all

 love 💕 Tara xx

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Re: July 2020 chemo monthly starters

Tara you are 💃🏻💃🏻💃🏻Towards 😎😎rads lounge 💃🏻💃🏻Speak to your team about creams, lots of tips on here on rads threads, aveno, moo goo, e45, dr organics aloe Vera with t tree gel from Holland & Barrett are ones that some of us have used. If anyone suffering really dry skin from the t chemo, udderlery smooth with extra urea from amazon was one that lots of us used on hands and feet to ease the dry skin t caused. On rads drink plenty of water and just rest when your body tells you too, you can fall asleep watching tv and then think where’s 2 hours gone. 💪💪💪 you are all getting there 💪💪💪💕💕Shi xx

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Re: July 2020 chemo monthly starters

Hi ladies,

I am so sorry that some of you have had a hard time on Docetaxel.

 Heather, yes hopefully next Thursday should be my last chemotherapy. I have not had the side effects that you and Helen have described in terms of leg/body pain, however I have had the horrible slime mouth that Shi describes. It is like my youngest feels swollen for the first week and someone has thrown talc in my mouth. Luckily this week has been a lot better. Shi I will try the pear drops! I have also had tummy pain/ upset this time up until 2 days ago. It is joy too bad just feels like I have diarrhoea but it is not actually that bad.

 I do hope to get through my final treatment with out too many side effects and have to wait to be called for radiotherapy then.

 You ladies are so close now. I know at times it  no is not nice but we are all strong enough to get through this.

 Have a nice evening all.

 Lots of love 💕 Tara xxx 

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Re: July 2020 chemo monthly starters

❤️Helen, please let your team know about fingers and toes so you don’t end up with permanent damage to them ❤️ slime mouth as it’s been known on here before that the t can cause has a few tips and tricks that have worked for some, fever tree water (mai7 community champion is a good one to pm) pear drops too. Epsom salt baths help too when it makes your bones feel like they are in a vice. 💕💕Shi xx

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Re: July 2020 chemo monthly starters

Heather I am sorry to hear what a tough time you are having with Docetaxel, I had my first cycle of it last week and have felt so poorly. Like you I didn’t want to post that as some people cope fine on it. I have had awful bone pain and the foul taste in my mouth has meant I don’t want to eat (which is most unlike me!). I have the neuropathy in my fingers and toes which feels strange. Did you start to feel better later in the cycle? With the EC I would start to feel more myself around Day 10 so am hoping this will be similar.

My oncologist said they would try me on a full dose of Docetaxel and reduce if necessary for the next 2, I feel I ought to take everything offered but never imagined I would feel this rough. 

I have sent my children back to school as my youngest son’s additional needs make rest for me very difficult when he is at home - within a week he had a nasty cold but luckily I seem to have avoided catching it. Both children strip off at the door and shower before coming near me. My eldest son has moved back to London for university and I don’t think we will be able to see him until my treatment is over, so probably Christmas time, I miss him so much.

Sending all of you brave ladies love and strength,

Helen xxx

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Re: July 2020 chemo monthly starters

Hi everyone

It has been quiet on here for a while hasn’t it? The effect of chemo accumulates I suppose, so we’re all just getting through. Really nice to hear from everyone though and hear how you’re all doing. KitKat, your day out in the Lakes sounds lovely. Hope the Peripheral neuropathy doesn’t cause you too much discomfort, has anyone else had that yet? My nail beds felt very sore this time but that’s it so far.

Amy, I’m so happy for you about the shrinkage of the secondary 🤗. Let’s hope you can get clarification about surgery soon, push hard for what you want. Keep us updated xxx

I experienced a lot of pain in my legs, hips and back after my first cycle of Doxetaxol, terrible diarrhoea and upset stomach and more nausea than previous cycles. I thought I had quite a high pain threshold but found that bone pain hard to cope with, even taking paracetamol and ibuprofen. And I had diarrhoea for 10 days ... 😱 I think because I’d been told I would have pain and likely diarrhoea I just suffered it, but my district nurse this week also said that I should not suffer like that again, to ask my oncologist for more painkillers and more anti-sickness and when to take Imodium/dioralyte to help the diarrhoea, otherwise I am not getting the nutrients I need from my food which my body really needs during chemo. She also said ‘you don’t get any medals for being brave through chemo, it’s horrible, get the drugs you need to get rid of as many side effects as possible!’  So I will take that advice I think and hopefully it won’t be as hard going for as long next time. I didn’t write on here Because I didn’t want to put a downer on anyone else who is due to have Doxetaxol, but I also now realise how individual the side effects are - everyone’s reactions are different. I feel like an injured animal sometimes with chemo, I kind of withdraw into a cave and lick my wounds, emerging when I start to feel a bit better!

We have kept our children home from school for now and are home schooling. By the end of the first week, someone in my son’s very small class had tested positive for Covid-19 🤦‍♀️ It’s a minefield with chemo isn’t it? 
We had lovely birthday celebrations with my 2 children, piñata and pin the tail on the donkey and lots of cake. 
Hopefully last chemo for you next week Tara 🙌🙌🙌🙌🙌🙌 That must be a good feeling. Still a journey ahead, but a big milestone xxx

Big hugs to everyone, 

Heather xxxx

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Re: July 2020 chemo monthly starters

Hi Amy,

just wanted to say it is great news about the chemo shrinking the cancer on your lungs. See I told you that you would do it and this cancer can be beat, just got to have faith and hope and anything is possible.

 Hope you get the news you want about having an op, I’ll keep my fingers crossed 🤞 for you.

 Have a good day ladies, enjoy the 🌞  

lots of love 💕 Tara xx

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Re: July 2020 chemo monthly starters

Hi Nancy, glad you doing well....I want to do some decorating too...but it seems an effort at the moment!  my 3 Children are all adults too.... i see my 3 grandaughters most days....and I am shattered after a couple of hours with them.....it must be very hard for those with young children.

Hi Amy....that sounds like very positive news....do you think you will stay on the paclitaxel now or just have 12 like me? 

Hello all you other July 20 starters.....hope you all doing as well as you are able.

 I feel every one of my 55 years recently....went the Lake District last week and it took it out of me....but it was lovely being around all that nature.

i have chemo number 10 today....another 2 of these then start EC 2 weekly for 4 treatments....will be end of November before I’m done....seems ages away.
I have developed some peripheral neuropathy 🙄.... in fingers mostly ( some in big toes) and it’s quite painfulat times....Team don’t seem unduly worried, said it’s a usual side effect of paclitaxel.

Look after yourselves everyone X X

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Re: July 2020 chemo monthly starters

Hi Amy that sounds like a positive result if it makes you more treatable. I hate the chemo but as it has made my tumour shrink away I am happy to go on for as long as they let me. I’m on the upswing now after round three FEC and halfway through. 

This page is very quiet. I hope the rest of you are trundling along okay.

My children are grown and flown so not a burden. I’m busy decorating and gardening.

Who is still about?

NB

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Re: July 2020 chemo monthly starters

Hope everyone is doing ok.... can’t believe we are well into September now! How are those with kids coping with the back to school? 

I have just had my halfway-through-chemo scan results... bit of mixed bag but I think I am pleased. Only spoke to the nurse and have a meeting with oncologist to discuss properly later this week, but my secondaries in lungs have ‘almost completely resolved’ ie they couldn’t really see them on the scan anymore. The lump in my breast and my affected lymph node have not had such a good response, but it means that they might now consider me for surgery. 

I have session 9/18 this week. Not sure now if I will keep going after that, need to see what the dr says. 

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Re: July 2020 chemo monthly starters

I’m the same Claudia. I’m through the FEC now with a chronic sore mouth and bum and a tyre of steroid bloat and bunged up bowel. The filigrastim this time feels like bees swarming in my chest but not painful thankfully. I’m bored of it all today but at least I’m not in pain! 
I am going to force myself out for a walk to shift things. My first doxatacel and HP is on the 23rd.

We are making progress even if it is dragging! 
NB

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Re: July 2020 chemo monthly starters

Hi all 

Hope everyone is OK, I'm starting to have a number of different side effects creeping in mouth ulcers, sore throat which means I sometimes struggle to swallow food which then hurts my chest. I've been suffering from constipation for a few weeks now and I'm now getting a bloated and tender belly (not sure if it related to this or the chemo belly people can get). All are manageable so I'm carrying on as normal. I'm due to start the docataxel in a weeks time so I'll be interested to see how I go on those drugs! 

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Re: July 2020 chemo monthly starters

Hi Sunshine I totally get the chemo dread you feel knowing you need this stuff but it is going to make you feel so bad. That is what takes grit and real courage in my view. We just have to keep plodding onward knowing we are beating this thing.

Today day 3 round 3 I felt well so nipped out on the ebike to meet some friends for socially distanced coffee. 12k ridden and I feel good for the fresh air and seeing my mates. Just a bit queasy now but worth it! 

Back in bed for a rest now. Thinking of you all 

NB

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Re: July 2020 chemo monthly starters

Hi Sunshine, 

Hope  all went well/goes well with your final treatment( can’t remember if you said that you have had you 4th round yet or not). Well done you have got there girl!

 I only have 1 more round on the 24th of this month and then hopefully onto radiotherapy and uplift to my left side. Hoping this will be my Christmas pressie 😝 

I too work in a school and strangely enough really miss it too. I work at the same school as my boys, they went back Wednesday so all is quiet here now. Mind you I was okay until had treatment yesterday, but getting up and getting them ready and off to school today with my husband has tired me out so I’m back in bed watching bet flicks for an hour or so. I am hoping to go back to work in the new year, but keep thinking that I will fall to sleep on the class or struggle to walk upstairs as I work in key stage 2. What I would say is that I am going to make sure I feel completely ready before I go back as I am sure you know in a school you are expected to hit the ground running lol!

 Good luck to all you ladies having chemo today. Virtual hand holds coming your way.

 Take care, love 💕 Tara xx

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Re: July 2020 chemo monthly starters

Hi everyone

Hope you are all doing well and treatment has gone ok this week! I’ve got my 4th and final round of docetaxel! I know I have been quite lucky only having to have four, but I’m not looking forward to this one as the tiredness and the aching in my bones definitely got worse in round three, but I need to remember that by this time next week I will be over the worst!! Then will move onto radiotherapy.

Had a bit of a wobble today- I’m a teacher and the students were back in today and it was very weird not going in and I just wanted to be normal again and start the new school year again like I’ve done for years and taken it for granted that I will always be there! But I know in a few months time I will be back!! 

 

Hope you all have a nice weekend and have got something nice planned xx

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Re: July 2020 chemo monthly starters

Hi ladies,

Yes Heather I’m here having Docetaxel now. Glad yours went okay with no problems!

 I agree the name on your friends shirt is ace. When I enter race for life maybe next year I will have my name on the front to run in celebration of me when I am over this. I always had my nans name until now running in memory of. She died of brain cancer 28 years ago. It started off as  breast cancer, but I know treatment have come a long way since then and I’m an optimistic person. I truest hope the cancer never comes back for any of us or gets worse but I know each of us will fight it each to time and never let it beat us!

 Hope everyone is feeling okay, relax and take it easy.

 Lots of love 💕 Tara xxc

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Re: July 2020 chemo monthly starters

Wow, Nancy, that’s amazing positive stuff!! The fundraising sounds so uplifting, a great focus. What a privilege to have your name on the shirt too, literally carrying you along on her journey (and yours). The video sounds fab too, I don’t think you can underestimate being love-bombed at times like this. 

I like your comment about living half of the time in happy denial, I think I do the same and don’t think that’s a bad thing! You can’t change it and is really doesn’t do any of us good to dwell on it all the time. I’ve asked friends to tell me all about what’s happening in their lives and with their families as I love hearing all about them and certainly don’t want to talk about the big C or treatment all the time. It’s refreshing. But I also have certain people I can be brutally honest with (including you ladies) when it’s rubbish.

I've just finished my first Doxetaxol infusion, Just about to start Carboplatin, was super nervous this morning, but feel ok so far. I have my fab positive nurse from last time, makes such a difference.

Tara, are you in for Doxetaxol round 2 today? Thinking of you and sending strength 💪

Rest up Nancy and be kind to yourself. 
love to all 💕💕💕💕

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Re: July 2020 chemo monthly starters

Hi Tara and Heather

I think Heather you are right to point out we can admit to difficult days and feelings and don’t always have to look good when we are not. Sparing those close to us when you can see they are worrying is also a natural thing. I offload on the nice man that dresses my PICC line and my BCN but generally I am upbeat and probably live half my life in happy denial! 
Having said that I had such a lovely birthday and I even won the Crazy golf tournament by miles! 
The family had collected videos from everybody who might have come to my abandoned party and it’s a 20 minute film of messages of love and support. It’s so lovely it made me cry when I watched it. 
The last 10 days my friend has been attempting to set a world record for cycling from Lands End to John O’Groats AND BACK. She is riding to raise funds for the mental health charity MIND. We have been promoting this and have raised £6500 so far. I am thrilled she is riding with my name on her shirt. My strength is her strength! Last winter she was running a motivational course for endurance athletes which I completed before lockdown screwed up all our plans. The principles apply to surviving cancer treatment too. 
Yesterday was round 3 and last FEC chemotherapy. I have the usual nausea and sore throat and hangover and am lying low. This too will pass! 
Regards to all especially those with treatment this week

NB

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Re: July 2020 chemo monthly starters

Sorry for spelling errors. Fingers are really fat and swollen now! Xxx

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Re: July 2020 chemo monthly starters

Hi Heather,

 I am due my second round of Docetaxel tomorrow. My first round was not too bad at all. I like you was very nervous ran out the side effects. The only ones I have experienced was mouth thrush, which I had antibiotics for, loss of taste and I could not sleep for 24hours on day 6. Not because I was in pain but could not get comfy.

 

 My advice is to try not to get too anxious, even though it is easier said than done and try to relax breathing deeply in and out as they administer the chemo. The nurses in the unit are super vigilant and ready to reverse any reaction occur.

 The flow release injection sounds fab, although until now I have not had any side effects other than a bit of aching in my lower back.

 My boys went back to school todaY, been strange and quiet without them. This was more to assist my youngest mental health. It’s good you can spend some quality time with your children now.

 Hope it all goes well for you tomorrow, I will virtually hold your hand.

 Good luck to others that have had chemo today or are having it over the next couple of days.

 Lots of love 💕 Tara xxx

 

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Re: July 2020 chemo monthly starters

Oo, my swear word was edited out! 🙊

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Re: July 2020 chemo monthly starters

Hello lovely ladies ☺️ and Happy Birthday to all those with birthdays!! Hope you enjoyed being spoiled and having a good distraction from chemo.

I have my children’s birthdays on 9th and 15th Sep, with my husband’s in the middle on 13th 🤦‍♀️ I have my first course of Doxetaxol and Carbollatun tomorrow, so I’ve had to accept not making their cakes this year and buying in birthday food, as I just don’t know how I’ll be. Pressure off. I was quite poorly last cycle and ended up in hospital as my temp and blood pressure dropped, I was so dizzy and having cold sweats/almost passing out if I stood up for any time, my body felt like a lead weight, and I was so tired. Bit of a reality check of the cumulative effect of chemo 😏 feel nervous about Doxetaxol and the potential allergic type reaction And the sore joints, etc. but am trying to stay positive and focus on all the love that I’ve been shown over the last few months, it is just so moving and heart-warming. Has also cut through some of the more ‘challenging’ family dynamics which has been refreshing!! 
I can’t remember who asked now, apologies, but I have been having therapy through this and have found it really useful, although I was already established with my therapist before all of this, which probably makes a difference. I do find having someone without any emotional attachment, but an interest in your wellbeing nonetheless, really useful and I can be completely candid and air thoughts without needing to think how she will react. Sometimes it’s enough just to verbalise something that has been floating round in my head. 
In other updates, my nose feels like it drips constantly, which is pretty gross, due to having no nasal hair. I tried the magnetic false eyelashes for a special occasion, they were ok but as mine haven’t come out completely I’m not sure they were worth the faff. If all my lashes drop out I’ll maybe use them more. But it isn’t like I’m out and about generally ...I’ve been offered a Single, slow release injection this cycle rather than the 5 days of injection, which was very welcome. After last cycle and feeling much more tired I’ve decided to stop work for the rest of the year, which is now a relief. Kids aren’t go back to school this term either, so it takes some of the pressure off and will let me do a bit of schooling with them when I can rather than worrying about working. 
How is everyone today? Although I think staying positive is good, I also think it’s good to post on here when we’re feeling low or done in or overwhelmed, it’s part of the process and we’re all in the same boat. That is really useful to hear sometimes as it kind of allows each of us to acknowledge that it is super **bleep** sometimes!! (And we don’t need to try to be heros).

Another thing I’ve been saying recently is that it doesn’t need to be pretty or brave, it’s just about gritting through, getting through it and doing little things or accepting little things from others to help make it a bit easier or more pleasant. 
Virtual hugs to you all 🤗

Heather xxxx

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Re: July 2020 chemo monthly starters

Hi ladies,

Happy birthday Nancy and Butler. My eldest is 10 on the 10th September, luckily I have chemo on the 3rd so hopefully will be feeling better. He is going to an open water inflatable park, I would love to join in as I live swimming, but have been advised not to because of the chemo. Went to Blackpool fir the weekend so did lots of walking.

 

 I’ll have a drink to you ladies next week when my injections finish after chemo.

 

 Have a lovely day each.

 Love 💕 Tara xxx

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Re: July 2020 chemo monthly starters

Hi Nancy

Happy 60th for yesterday hope you had a lovley day.   It my 60th on 10th September  and unfortunately I got chemo that day.  They did offer to change it to the next day. But I decided to just keep it as it is.   As not like I can go any where to party.lol.   we both wont forget this birthday what with the 2 c  Corona  and cancer.   Xx

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Re: July 2020 chemo monthly starters

Happy birthday Nancy, sounds like you’ve got a lovely day planned. Really great to hear you’re feeling so positive as well. I had a bit of a low day yesterday but my brother and his partner are coming round today to help us with some painting so I think it will be a better day. I shall definitely have a drink to you at some point xxx

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Re: July 2020 chemo monthly starters

Hi Amy I like your attitude blocking the negative thoughts. I am lucky that firstly my lumps have disappeared after two doses of chemo which is heartening and secondly I am by nature a sunny optimist. I keep checking to see if I am anxious or low but actually life is good at the moment apart from the small matter of FEC3 next week.

Today is my 60th birthday and my kids are here making me laugh. We are off to the beach for a Pirate crazy golf tournament later . The florist was up and down the hill yesterday and the house is full of lovely bouquets and cards. I get my pension any day and have treated myself to a bigger pirate ship so I can sail the seven seas once all this cancer business is out of the way.

I do wonder about the emotional crash people keep predicting. Knowing me I will have a wobble, cry a bit then get up and crack on with some hare brained adventure like sailing to Norway. 

This illness has brought out the good in people. My friends and family are showering me in love and carrying me along. Yesterday they set too and refurbished my rotten allotment shed.  I am so lucky to be financially stable and cared about. For me this is a tough fight to endure the treatment but in my gut I feel now that I will come out of it okay. 

On a minor note after 90 percent of my hair came out last cycle the last 10 percent is stubbornly clinging on! I have shaved it as it was looking very Rab C Nesbitt as my husband pointed out. They tease me a lot here but they have to do what I say because ITS MY BIRTHDAY and CANCER!!

 

If anybody needs cheering up I recommend “A funny thing happened on the way to chemo” It made me cry with laughter.

Have a drink on me today even if it’s a cup of tea

NB Pirate Queen and she who must be obeyed! 

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Re: July 2020 chemo monthly starters

Hope you are feeling better now Claudia... although I know exactly how you feel. I just try to push those thoughts away - I say ‘CRAP TO THAT!’ - it’s not going to change the outcome either way and I have decided that I don’t want to live being afraid and down all the time. (It’s easier said than done, I do get it.)

I’m just back from Chemo session 6 of 18 - a third of the way through! It was super easy and quick today, so relieved. I had almost no side effects at all last week so am hoping for the same again. 

My hair is stressing me out a bit now. I’ve been using the cold cap but it’s definitely coming out now. It’s thinning on top and I hate washing it because quite a bit comes out. I can see why people shave it all off now. I have very thick hair so am thinking I’ll get away with losing quite a bit before it’s noticeable but am also paranoid a big chunk will fall out in the post office queue or something 😬 Just going to carry on as I am for the moment. Can’t remember who else is using cold cap, if anyone? How are you feeling about it? 

Hope everyone is getting on ok. Would love to hear some updates xxx 

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Re: July 2020 chemo monthly starters

Ahhh Claudia, sorry you feeling rubbish too.

Sometimes we go to very dark places no matter how hard we try not too.

I can’t believe I’ve been here 3 times.....each cancer a little bit worse than the last.....but 6.5 years on I still have to believe that it won’t come back a 4th time or I think My anxiety levels would be off the scale.

Thinking of you and sending a hug x x

 

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Re: July 2020 chemo monthly starters

Hi kitkat 

I'm feeling low this weekend too, I had a bit of a cry today, we've just got ourselves a new car on a 3 year deal and all I can think about is will I be here in 3 years time? 

My hubby is looking forward to getting this car but I am just so low. 

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Re: July 2020 chemo monthly starters

Hello Everyone....hope you all doing ok.

I am feeling a bit low this weekend.....a combination of the rain and wind and chemo side effects generally catching up with me.....I have mouth ulcers on my tongue and have had intermittent stabbing pains all over my body and just feeling lethargic all the time.  All of these are known side effects of my chemo but I’ve not had them up to now.  

i’m hoping the rain stops long enough to have a nice beach walk with my partner and the dog.

Take good care everyone x x x

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Re: July 2020 chemo monthly starters

I was given a referral to the specialist cancer/psychology department through my hospital. I have had two sessions so far, via video call. It’s quite good because she has access to all my notes from the consultant and knew when I had missed a chemo etc. 

I have mostly sobbed through the sessions so far but she has given me some useful ideas and ways to look at things. Sort of how to reframe things in my head I guess. Nothing groundbreaking that I haven’t started thinking myself, but useful back up I suppose. 

(I think perhaps my referral came through more quickly because I have secondary cancer  and it was a bit of an unexpected diagnosis.) 

There are also online support groups via Breast Cancer Haven... that’s video chat too. I did one of those and it was quite helpful. Should do it again really. 

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Re: July 2020 chemo monthly starters

Hi Claudia!

No...just chemo done by Nov! Then rads ??? end dec/ early jan....also having 6 monthly biphosphonate infusions For 3 years and letrozole for 5/years.

I took tamoxifen for 2 years after my last diagnosis (2018) but still ended up with a 7/8 ER+ BC This time, so hope I fare better on letrozole.

i had counselling through work ( I work for NHS ) with first diagnosis ( wasn’t really my thing, but defo give it a go as lots of people find it helpful) then had CBT through work with second diagnosis and also 1-2-1 stress management and mindfulness sessions ( which I found really helpful) ...occupational health have offered me all of these again but I just want to get on with treatment at moment.

 Take care x x 

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Re: July 2020 chemo monthly starters

Hi kitkat 

Will you have then finished all treatment in November? I have chemo then op then radiotherapy so I'm looking at least March time. 

When you get nearer to having the EC drugs please let me know and I'll give you the low down on it (it hasn't been that bad to be honest although I'm dreading the next lot of chemo which is docetaxel. 

A lady who works with my husband is in remission for stomach cancer and said the best advice she could give me is to engage with a counsellor as this is a massive thing to go through so I thought it wouldn't hurt to speak to someone about my feelings and concerns. I got in touch with my local hospital who have put me on the waiting list 😬 so I may see if my work provides it as a benefit. Has anyone else engaged with a councillor? 

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Re: July 2020 chemo monthly starters

Hi Nancy

Glad you feeling more yourself and good news that you can’t feel lump anymore....chemo doing it’s job! 
I am due 7th treatment next week and to be honest it’s flown by.....although still got to make it to end of November which does seem a fair way away ! 
take care x x

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Re: July 2020 chemo monthly starters

Just checking in after a week of lying low. That was a tough gig! At one point my head hurt so much I burrowed into bad and stayed there for 18 hours. But it has passed and I am still here with just one more FEC to endure. The lumps aren’t palpable now which makes it worth it I think! 
Next week I have a review with oncology and the pre Herceptin heart scan. 
My brother is sending me a bunch of flowers each month and I realised that it is actually passing quite fast. Next bunch will be just before I start THP!

Hope my fellow travellers are coping with the ups and downs

NB

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Re: July 2020 chemo monthly starters

Crossed posts! Yes I’m doing ok thank you! 
Glad to hear you are too. My face rash almost completely cleared up, will be interesting to see if it comes back now after having treatment again.... 

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Re: July 2020 chemo monthly starters

Claudia I can only speak for myself but please don’t worry about sharing things that you think are not positive enough, I’m sure we will all do it at some point! It’s a rollercoaster ride for sure. 

I had a shaky start to my fifth paclitaxel this week... my temp and heart rate were up again so I ended up sitting in the corridor outside the chemo ward for an hour and half while various phone calls were made. They let me in and eventually and went ahead with treatment thank goodness. The hospital is close to where I live so I generally walk over there twenty minutes before my appt time. I think next week I will go earlier and sit outside the hospital to collect myself beforehand. I also remembered that my dad has issues with his heart rate (AF) so I might mention that next week. 

Got my scan date for my halfway check - it’s only three weeks away 😬😬😬😬😬

 

Hope everyone else is ok! 

 

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Re: July 2020 chemo monthly starters

Hi Amyc

Just wanted to say Hi and hope that your treatment went ahead ok today.  

I had number 6 yesterday and feeling ok; was up until 5am wide awake as usual on the day of treatment, but no other side effects.

Hope you’re doing ok.

take good care x x

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Re: July 2020 chemo monthly starters

Hi Claudia, glad you feeling reassured from your MRI scan; the worry demons take over don’t they and take you to dark places, I was the same waiting for CT scan results.

I have done 6 out of 12 paclitaxol and will move onto 2 weekly EC in October, so any tOp tips would be great! I think I’m going to find it harder than paclitaxol.

take good care x x 

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Re: July 2020 chemo monthly starters

Hi ladies 

Sorry I have been quiet, I have been having lower back pain since day 5 of my injections and whilst it has eased it hasn't completely gone away. Cue the major anxiety thinking it had spread to my spine and I couldn't shake it off, I didn't want to bring all of that on what is a positive and supportive group. I had my mri scan on Monday to see how the tumour was going on and the results came in that it has only marginally decreased from 38mm to 35mm but there is no spread. Whilst it's a small shrinkage it is still 10% and this was more about resolving my spread anxieties which it has done so I'm relieved. Bloods on Friday and hopefully last EC chemo on Monday.. I'll be half way through treatment at that point.

I hope every one is well, 

Claudia xx