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July 2020 chemo monthly starters

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Re: July 2020 chemo monthly starters

Enjoy Amy! 

have you tried Piriton for the face? Call the line to check of course, but really helped when I had a reaction on my face, made me much more comfortable xx

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Re: July 2020 chemo monthly starters

Hi Tara,

glad you’re feeling ok, strawberry flan sounds amazing. Chemo unit sounded chaotic yesterday 😏 the nursing you receive makes a lot of difference doesn’t it? I’m thinking of requesting a transfer to another oncologist, as mine has been dire, a catalogue of errors the whole way through. As a result of the latest cock-up I spoke to another oncologist this week who was so fantastic and highlighted even more how removed and not ‘on it’ my guy has been, just adds to the stress as I had to chase for every appointment and at each stage. She immediately had it all in hand.

 

for all PICC line ladies, saw a girl with one of these in clinic yesterday, looked good - less medical think I’ll order a couple: https://www.etsy.com/uk/listing/832180139/picc-line-cover-freestyle-libre-sleeve?gpla=1&gao=1&&utm_s... 

💕

heather 

 

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Re: July 2020 chemo monthly starters

We are down in Kent at my mother in law’s for a few days, she has a swimming pool so we are trying to get my son to go in... he hates it! 

Still feel annoyed that my treatment this week was cancelled but it has meant I’ve felt better for this trip I suppose. I’m booked in for next week as usual so fingers crossed that will go more smoothly.

 

Tonight we are leaving Dylan with his granny and going to the pub for dinner - can’t wait! Would be better if I didn’t have a spotty rash all over my face, but you can’t have everything I suppose! 

Sorry to hear about your husband’s foot Tara, hope he gets better soon. 

Totally agree that it makes such a difference which nurse you get. Some of them are so kind and patient while others seem to be so busy and almost cross. I always like to have things explained to me, it’s so scary when you don’t understand what’s happening. I think I am learning to ask more questions. 

Hope everyone had some nice weekend plans. We’re going to an animal park tomorrow and then the beach on Sunday for fish and chips! 

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Re: July 2020 chemo monthly starters

Hi ladies,

I hope everyone is okay and enjoying the weather? It’s in between here, been raining this morning so took myself outside to let the rain fall on my head. Love the feeling makes me feel alive. It has warmed up now and sun is shining.

 I had a sudden surge of energy this morning so have cleaned the whole upstairs of the house. My feet are aching now though so gave just put them up and had a slice of strawberry  flan. Lovely!

Heather, it is so much better when people explain things to you and administer the drugs slowly. When I got to the unit yesterday there was a lot of nurses off sick only 3 on for the whole unit. Although everyone is lovely I did not feel that they explained the process to me very well. I also had a lady on her first chemo fir ovarian cancer sat next to me and an elderly man dat the other side that was quite ill. I didn’t most of the time shouting for these two patients, but it took my mind off things which helped. 
 The swimming in the sea sounds fab. I’d love to be able to swim again I used to be a competitive swimmer and miss it so much. Gives me time to think.

Nancy, the sailing sounds fab. I think we forget we are I’ll sometimes, especially on a good day and over fo things. I struggle because I hate sitting still.

 My mum is on her way over again, bless her heart. She is taking my eldest to goal keeper training tonight and if I feel okay I might go with her. Take my deck chair and enjoy the fresh air. I love watching my boys do sport.

 Hope you are all feeling as well as you can.

 Much love 💕 

Tara xxx

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Re: July 2020 chemo monthly starters

Hello everyone

I had my 3rd round of FEC yesterday, had the most lovely, lovely nurse who took her time and looked after me so nicely ... it made SUCH a difference. She recommended a local trust who can offer support to my 8 year old, which I’ve struggled to get so far. I agree with the slower the better for administration, even if you’re there longer.
Tara, I was thinking of you as I was there yesterday, hoping it was going smoothly for you too. Really glad it went well and hope it continues to do so. This super duper nurse yesterday talked me through step by step what reactions can happen with Doxetaxol and what the response would be in each scenario, I felt better after that for next time. 
Nancy, love hearing about the sailing, And the telling off - hilarious! I swam in the sea With my brother twice this week and the feeling of lying back with my bald head fizzing in the sea was just the best. Made me feel so much better. Also, so so pleased for you about the lump shrinking ... what a good feeling that must be. 
Amy, I've had a chemo session delayed and know how psychologically it gets to you, and how it’s just so frustrating. It isn’t just you either, all your support gears up for it and you plan don’t you. Big hug and take it day by day.

hugs to everyone, I’m in bed having a rest and nice to think of everyone else at various stages. Keep going, we’ve got this xxx

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Re: July 2020 chemo monthly starters

Glad to hear it went okay Tara and you are poddling through.

I am day 4 now round 2 FEC and am coming down off the steroid high which was fun! I spoke to a friend I haven’t heard of since school in 1976. And my SM support gang has acquired some famous endurance cyclists. The #invisiblepeloton!  I’m really enjoying being the centre of so much positive support messages cards gifts and flowers. It really lifts me when I’m struggling. But I am still doing the laundry and online shopping  and housework and looking after elderly parents at a distance. I want Mary Poppins to arrive. my grown up kids have been fab and come and mucked out the fridge just like I do for 87 year old granny. But the husband is trying his best and I will catch up later in the cycle I guess. And I might get out sailing again. I was In Trouble with the nurse last week after winching on the boat because it made my PICC line spurt !! 
onward and upward and hugs for those that need them
NB

NB

 

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Re: July 2020 chemo monthly starters

Hi KitKat,

 My mum is lovely, but from what I have heard everyone say we all have really supportive relatives, young and old, which is reassuring.

 Canada sounds fab, I would love to visit. I bet you really miss him when he goes back, but nice to have him here for support now.

 Sorry for any spelling errors.

 I’m off to bed now.

 Have sweet dreams all 

Love Tara xxx

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Re: July 2020 chemo monthly starters

Hi Tara

Your Mum sounds lovely! Family really is the most important thing isn’t it.

Hope you cope ok on this new treatment....I’m dreading moving onto EC and I’ve still got another 7 weeks of paclitaxol! 

i drove to my Mums today with my eldest son, who is over from Canada for 7 weeks and We had a lovely day.  Very tired now tho.

Hope everyone else ok.

Good night all x x

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Re: July 2020 chemo monthly starters

Hello ladies,

 Got back from chemo at 3. Not too bad so far. No reaction thankfully! Felt sick on my walk out of the hospital and had to run to the loo, but went off as soon as it came on thank goodness. No sick! Thanks ladies fir all your helpful advice.

 I had a sleep this afternoon as felt really tired. When I woke up I felt really hungry. Just had some dinner and are watching emmerdale on catch up with the hubby.

 

 Sat here now wondering how I am going to fe over the next couple of days, bracing myself for the side effects.

 Sunshine, my mum came over and did a shop for us earlier. She washed and dried the clothes, cooked the kids tea and showered them so all good than you for caring it’s kind. She will stay over tomorrow too which helps out.

 

 Hope everyone else is feeling okay.

 Take care and stay safe.

 Love 💕 Tara xxx

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Re: July 2020 chemo monthly starters

Hi Tara

I hope the Docetaxel went ok today, I’ve got number 3 tomorrow. I haven’t found it too bad to be honest, a few days where I’m really tired then I pick up again for week 2 and 3. I listen my taste buds first time round but didn’t so much 2nd time- we’ll see what happens this time! Sorry to hear about your husband, have you got people around who can help out? 

Hope everyone else is doing ok! It’s nearly another week done that we can tick off the calendar!! Xx

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Re: July 2020 chemo monthly starters

👭Tara, think most of us got 😳going from fec to t, but it is ok ❤️ Just keep vigilant and if you suddenly feel hot or your chest feels tight call the nurses straight away, sometimes allergic reaction can happen on t, it happened on my 2nd t then I went back in fec for my 6th. Try thinking of it as another hurdle over and keep focused 💪💪 You are doing amazing 😁👍💕💕Shi xx

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Re: July 2020 chemo monthly starters

Hi Helen and other ladies

 I start Docetaxel tomorrow a little nervous about it too. I was done really quickly with my last round of fec and have felt a lot more sick this time. Think it is better when it is done more slowly.

 

my husband has just fallen down a set of ladders and damaged the ligaments in his foot. He has a Boot on and can’t drive for 6 weeks. It never rains it pours at the moment. At least we are alive 😝  

 The weather is really warm, my head is pouring of sweat. I hope everyone is doing okay  

lots of love Tara xxx

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Re: July 2020 chemo monthly starters

Hi all, sorry to hear about your temp Amy, it’s not as if we like going for our sessions but to go and not have it must have been so frustrating, don’t blame you for being grumpy. 

Had my last (hopefully) EC yesterday, different nurse, super efficient and I was out in an hour, last time I was there for 4 hours. But have been really headachey and nauseous since, not sure if it was the speed or the heat.  On to Docetaxyl in September, not sure how that will be.

Hoping you are all managing to find some shade and rest xxx

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Re: July 2020 chemo monthly starters

Yikes Amy that must have been a bit scary! I cycled in to my appointment and turned up boiling hot and lobster coloured. My temperature was up but the HCA on the door knows me well and took it again after I had cooled down a bit so I was allowed in. FEC was better this time as I had a very calm Portuguese nurse called Alex who infused everything slowly instead of whacking it in like last time. I will ask for him again. Home now feeling hungover again. 
Over half the FEC done now and the lump is disappearing.

We can do this!

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Re: July 2020 chemo monthly starters

Hi Amyc 

Really sorry you had a high temp at your appt today.....any other time would just have to worry about our blood results....but with covid it means any temp or cough will delay our treatment too..... hope you have a better day tomoz and your little man has a good pirate day!! 

Take good care

X x

 

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Re: July 2020 chemo monthly starters

I am so grumpy tonight. Went to get my bloods done at lunchtime and they wouldn’t let me on the ward because I had a temperature. I felt absolutely fine although very hot because of the weather. They checked my blood pressure etc and said my heart rate was also high so whisked me off to a separate room miles away where they gave me IV antibiotics and fluids. They couldn’t find any reason for the temp but wanted to get on top of it. I have had a rash on my chest and face so that might be connected.

 

They took blood and did a Covid test and I should get results on Thursday. But it means my treatment this week is cancelled. I’m really cross about it. And I hate this thing of being told there’s something wrong when I feel absolutely fine. It’s so weird. And this weather is such hard work!

Letting myself have a grump tonight and will try and cheer up and make the most of my free day tomorrow. My little boy has pirate day at his childminder tomorrow so I have made him a skull and cross bones waistcoat with a parrot sewn on one shoulder. Getting him to wear that should be an interesting start to the day! 

Hope everyone else is doing ok. 

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Re: July 2020 chemo monthly starters

Hi everyone

hope you are all well. 
NancyB- I hope the chemo went ok today.

Claudia- after my second chemo I also felt far more tired compared to after the first one. 
My third one is on Friday as long as bloods are ok. Trying to make the most of this week as I know next week I won’t be able to do very much!

Im getting a bit fed up of this weather now- I know we shouldn’t complain but this heat is a bit too extreme!! Looking forward to the thunder storms later in the week! 
Have a good rest of the week everyone

xx

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Re: July 2020 chemo monthly starters

Hi everyone

hope everyone’s ok in this heat.....I’m in the north west and it’s bad enough...but even worse in the South! 

went out for a lovely meal with my eldest son and my daughter and partner last night....making use of the ‘eat out to help out government offer’.....Monday’s is my best day...as my chemo is every Tuesday.

Have booked another restaurant for next Monday....will take my 4 year old granddaughter as well as she cried last night when I picked my daughter up.

Far too hot for my wig so wearing nothing at home and turban Style beanies when out!.... my friend gave me a big bag of hers from last year when she was having treatment....and they are far nicer than any I would have bought myself!

just had my 5 th paclitaxol this morning....I always panic about my bloods but they were fine.....so that’s 7 more to go....wahey!.....before I start on the next chemo🙄
no weight loss today either....static 9st so all going in the right direction ( for now ).

Amy....your turn tomorrow number 5....hope it goes well will be thinking of you.

Claudia....glad you feeling ( a little) better....I am dreading going onto steroid tablets with EC.....it’s fine with paclitaxol....it’s just 8mg infusion before treatment...reduced to 4mg after 4th treatment ....so no horrible side effects.

Love to all you other July Ladies.....not forgetting Tara too!!

let us know how you all doing, if you want too, I love hearing everyone’s news!

x x x

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Re: July 2020 chemo monthly starters

Claudia3609 I  hope the fog is clearing. I am about to set off for round 2 chemo. My hair has 90 percent gone and I look like a Gollum’s sister! I like my headgear though with matching mask. 
Who else has treatment this week? After this one I will only have one FEC left. It will pass... 

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Re: July 2020 chemo monthly starters

Hi ladies, I'm just coming back from the chemo fog! I had my 2nd one last Monday, I was a lot more tired than expected but hubby is now back at work at 6am starts so had the kids to look after. Thankfully help arrived at the latter end of the week so was able to rest more. I didn't seem to get that annoying metallic taste this time which was a plus but I am seeming to suffer with the steroid injections this time I couldn't sleep for 2 nights with back pain but thankfully that is easing and I am up and about. Been for a walk today and yesterday and very low impact exercises (like for 10 minutes but it helps me) I've got an mri scan next Monday to see how things are going I am very nervous about it I keep thinking it's spread but I am trying (nit very well) not to worry about it xx

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Re: July 2020 chemo monthly starters

Hi Tara, sending you a big hug, sounds like you are finding things especially tough at the moment, I find just when I feel I have got used to an aspect of this, something else rears it’s ugly head. Re. not wearing your wig, I have bought some hat/turban things from Simply Wigs and Annabandana, the bamboo ones feel really cool in this hot weather. But of course go without anything too, I am sure most people will understand and it is their problem if they don’t. And I am sure your husband loves you for who you are (I know you know that!)

Lots of love, Helen xxx

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Re: July 2020 chemo monthly starters

Hi ladies,

Thank you for your advice about the Docetaxel. Sorry not been in for a few days but have began to work myself up about having the chemo and needed to try and get my head around it.

 Butler it must have been so scary having the reaction, this is what I worry most about. I have to just hold my head up and get on with it.

 I have got to the point now ladies where I only wear a wig if I go to the hospital. It annoys my head and gives me headache. In this heat I much prefer to be bald. I have had to apologise a couple of times to the post man or delivery drivers when I have not had my wig on. Mind you when I think about it I should not have to apologise for loosing my hair due to fighting cancer. I have also put a lot of weight in and worry that my husband might not find me attractive but then again that’s his problem if that were the case not mine.

 Hope you all have a lovely day in the sunshine ☀️ it’s going to be another hot one! Xxx

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Re: July 2020 chemo monthly starters

Hi heather77

Yes I'm doing ok. Chemo ward phoned me yesterday to check I was ok. And they changing me back to just 3 weekly chemo  so I now only hv 3 more chemo to go instead of lots of weekly onesx  still haveing the Carboplatin but never said what the new one is yet. Have a good weekend x

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Re: July 2020 chemo monthly starters

Hi Heather and others.
My hair is falling out but the scalp sensation is most peculiar. Like a twisted plait pulling on the scalp or something. If I thought it would stop it I would get my head shaved but I suspect it would make no difference. I will just wait and see.

i am allergic to two of the PICC  dressings But seems to be okay with cosmopore. I am allergic to nickel so don’t have the little metal spike thing. I must be a sensitive soul! 

It’s been a quiet week this week. I wanted to do lots of things while I am well but seem to have wasted the opportunity.  Next chemo on Tuesday...

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Re: July 2020 chemo monthly starters

Hugs to both of you, Butler and Kitkat xxx 

Butler, that must have been really scary, glad they reacted quickly and you’re ok, scary nevertheless. Hope you’re feeling ok now xxx


Kitkat, it’s a big deal losing your hair, a big adjustment. I feel a lot better about it a few weeks down the line and don’t mind answering the door or if someone (Selective about who!) FaceTimes me when I don’t have my wig on now. Give yourself time to get used to it. I found it useful spending a bit of time putting on make up or trying different looks with the wig or without. I didn’t fee feminine for a few day’s and that bothered me, but o don’t feel like that now. 

How is everyone else doing? Xxxx

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Re: July 2020 chemo monthly starters

Ahhhh Butler 😳😳 that must have been such a shock.

if you are going to get a reaction it’s most often the 2nd one.

that happened to my friend last year on her 2nd one....she said she got pain in her back and chest then collapsed....they moved her onto nab paclitaxol ( abraxane) and she tolerated that one fine.... is the Onc going to contact you???
Bet that was really frightening...getting stabbed with adrenaline....it will make you nervous for the next one.....do you have other allergies??

im ok....my hair started coming out lots over last 24 hours so I have just shaved it all off....bit traumatic ( well a lot traumatic!) when I did it....but 2 hours later and it feels ok (ish) ....I didn’t realise how dark my roots were....after years n years of colour and highlights, you kind off forget what colour your hair actually is!

you take care Butler and let me know what your new treatment plan is

x x

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Re: July 2020 chemo monthly starters

Hi kitkat 

Well that was a eventful afternoon   just got 10ml of paxitacil in me when I had a serve allergic reaction to it.  So now got try a different chemo next week.  Fingers crossed for what ever that one will be. I must say my nurse and rest of team reacted so quickly.  She said it was a good job she was still stood by me when it happened. Hope you are feeling ok.xx

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Re: July 2020 chemo monthly starters

Sunshine that’s an uplifting thought! As my hair is falling out now I am thinking  when it grows back I will be recovering from cancer!

 

I had my CT scan yesterday and today the oncologist called and said it looked clear.  So this is definitely primary cancer even though I have a lymph node. I feel like a weight has lifted off me! 

I think I am not going back to work at all. I am a doctor and my surgeon told me I can’t work at all during treatment. I was going to retire in March 2021 so it looks like I have probably already done my last day. This is quite a shock but I can cope with the prospect of unlimited holiday! My colleagues don’t believe me but in my heart I know I have come to the end of my much loved career. Leave them wanting more! 


NB

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Re: July 2020 chemo monthly starters

I’m having 12 Amy, before moving onto EC....well you doing good up to now !! ... one session at a time eh.

x x

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Re: July 2020 chemo monthly starters

Hi everyone

Glad we all seem to be doing ok!

Im on docetaxel with cyclophosphamide and herceptin, I’ve had two rounds and two more to go. It’s not been as bad as I expected- I would say the tiredness has increased from round one to round two. I lost my taste buds first time, but second time I don’t seem to have lost them quite as bad. My worst day seems to be day five then I start picking up again- albeit quite slowly! 
I’m a teacher and my oncologist said he doesn’t let any of his teachers work during treatment. Even on a good day, there’s no way I would be able to teach a full day of lessons without having to take the next two days off to recover!! 

Nearly at the end of the week and we are all another week closer to finishing treatment!! 

Take care xx

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Re: July 2020 chemo monthly starters

Oh yes Kit Kat I saw that the other day and meant to say. I think you’re having fewer sessions though? I’m on 18 - just hope I can get through them all!

 

Hope you are feeling ok x 

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Re: July 2020 chemo monthly starters

Hi Amy

Glad to see you having a better day...You are a day behind me! I had my 4th paclitaxol yesterday! They only do telephone Onc appts where I am....so I may never even get to meet mine.

Hope you carry on feeling well x x

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Re: July 2020 chemo monthly starters

Hi Heather

Glad to see you feeling better this week.

Did they change your dressings?? I’ve gone from tegaderm to IV3000, and they are much less itchy for me.

ive decided not to go back to work until next spring or even summer....Im a Health Visitor so get NHS sick benefits....but it’s defo an individual choice and I know lots of people have no choice but to go back.   I took 6 months off when I had BC on other side in 2018 but I didn’t have chemo then.   I had a telephone appt with Occupation Health this morning and the doctor said at the end....’ok so I will contact you again near Christmas’.....so I don’t feel any pressure to go back and my Manager has been great.  Mine is not the sort of job you can pick up and put down though, so I would be forever handing over to colleagues and it wouldn’t be fair on the families I work with.  Some people like having that routine of work though, so there’s no right or wrongs.

Take good care x x

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Re: July 2020 chemo monthly starters

I forgot the most exciting thing! After my chemo this morning we went to the pub for lunch! It was really quiet and we sat in the garden and had burgers and I even had a small glass of wine 😎

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Re: July 2020 chemo monthly starters

Hi Butler

4th chemo went good! 
you get a 2 minute steroid infusion( mine is dexamethasone) before the paclitaxol, but that’s it.... I usually have a good appetite for Tuesday Tea and can’t sleep until the early hours then on Wednesday I have a big red steroid face.  But then steroids seem to be out of my system, I sleep fine rest of week and eat normally.  Hope it’s same for you.

let us know how you get on x x

 

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Re: July 2020 chemo monthly starters

Hey everyone

I had my fourth weekly paclitaxel this morning and then a catch up with my oncologist. He is pleased with how it’s going and I won’t see him now until I have a scan halfway through my treatment (after 9 sessions).

The chemo was uneventful which was brilliant and such a relief. I told the nurse at the start that my goal was not to cry this week and I didn’t!!! (There were dramas with cannula and reactions the last two weeks, I’m not a baby, honestly!)

Also because of the onc appt my partner was able to come up to the ward so he got to see where I have treatment and sit with me for the last hour which I think he was pleased about. (I was running late so the dr decided to come and do my meeting in the chemo ward) 

I’m going to try and be a bit more gentle with myself the next few weeks, the heat last week absolutely knackered me out. Our local park has its water fountains on now so I can take my little boy over there and sit in the shade while he runs around. Otherwise it’s going to be hiding inside I think.

Hope everyone else is doing ok. Changing treatments sounds daunting but as you say hopefully just different rather than worse. It’s bonkers how it all seems to affect people so differently. 
I was interested in the question about work... I am self employed and have kind of paused everything but I think I could do with a bit more structure... something to think about.

take care everyone xxxx 

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Re: July 2020 chemo monthly starters

Hi Tara

I'm a cycle behind you, having my last cycle of EC next Thursday and three weeks after that will start on Docetaxal/Carbo … so we'll be having some cycles together.  The side effects list was daunting wasn't it, but my chemo nurse said many people find the EC cycles harder.  It will be individual, as everything about cancer treatment seems to be and time will tell, but hopefully it's different rather than necessarily worse!  It is also hard when you've just got your head round what to expect with one lot of drugs and then have to go into the unknown again isn't it .. stepping out of a plane feeling again.

Heather x

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Re: July 2020 chemo monthly starters

It was ok. I thought it was much less harsh than FEC. But I think it depends on the individual. I found FEC absolutely brutal. In fact my hair started to grow back during Doxetaxol/Cyclophosphamide regime. I suffered from muscle pain in my legs and could literally watch the muscle spasms. I also got a really horrible mouth. No thrush or ulcers just a feeling as though my mouth was ash. The mouth feeling lasted about a week and On the same day each cycle it completely resolved overnight. The first dose was the worse and I remember crying on the couch on Hogmanay 2013 but that was partly emotional as I felt I was letting everyone down by not taking part in the celebrations. After that low point, everything got more bearable. I think the fear of the unknown is what makes us so anxious. Tara, I am/was the biggest worrier of all time. I worried about absolutely everything, every twinge, every bit of body language from medical personnel etc and I got through. One positive is the absolute euphoria I felt when it was all over. Focus on that and maybe plan a wee treat.  It’s a great milestone to reach x

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Re: July 2020 chemo monthly starters

Marie,

Do you mind me asking, how was the Docetaxel for you? I am really worried about the side effects. I am a worrier the other ladies on here have probably guessed. Just wandered how I might feel.

 

 Tara xxx

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Re: July 2020 chemo monthly starters

Thank you both for your advice. I had FEC-T before and just couldn’t remember. I was sure I’d taken the steroids before chemo but that must’ve been for the taxane treatment. I ended up having only one Fec and 5 DC so that explains the rubbish memory.

Thanks again for your advice x

 

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Re: July 2020 chemo monthly starters

Hi Marie I'm on EC and I take the injections home with me to take the next day for 5 days. The 1st lot never bothered me but I'm getting like a side pain this time around xx

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Re: July 2020 chemo monthly starters

Hi again Marie.

 I take lansoprazole in the morning. Eat a piece of toast or something light and then go to chemo.

 

 Hope this helps 

Tara xxx

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Re: July 2020 chemo monthly starters

Hi Marie,

 I’m Tara from June starters. I have had 3 cycles of FEC. I did not take steriods before hand as I was given it on the unit before chemo and had some to take home for 3 days after treatment. I am starting Docetaxel next Thursday and have to take 4 steroid tablets twice a day the day before, day if and day after treatment.

Like Shi has said please try and talk to a nurse on here or in your unit to be sure as everyone may be different.

 Hope it goes well for you!

 Take care 

 love 💕 Tara xxx

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Re: July 2020 chemo monthly starters

Marie have you tried the number on here to speak to a nurse or your rapid response number you’ve been given by your unit, that phone should always be answered ❤️💕💕Shi xx

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Re: July 2020 chemo monthly starters

Popping over from August thread for a quick question: I’m starting EC chemo tomorrow and am wracking my brain re steroids. Can’t get through on chemo phone line. Can anyone remind me if you take oral steroids the day before chemo or is it afterwards? Likewise omeprozole. I’ve had chemo before but have forgotten.

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Re: July 2020 chemo monthly starters

 Hi kitkat.   Hope your chemo went ok yesterday. And that your feeling as good as you can.  I'm getting in a bit if a panic about mine tomorrow  even thou thus time I'd just the paxitacil   but where you normally get a break before each chemo,  I feel like iv not had chance as still dont feel right and thought of doing steroids and injections all over again  is just makeing me cry .   But I no I got do it so slap face time and pull my self together.  I'm in awe of you younger ones on here with children to deal  with at home you are all amazing Have a good day.xxx

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Re: July 2020 chemo monthly starters

Hi NB

isn’t it so great doing normal things once you feel better again, your allotment day sounds lovely. Can’t believe you did a 20 mile bike ride!

I’m feeling pretty much back to normal this week too thank you xxx it’s crazy how much difference a week can make in this rollercoaster. So pleasurable to be able to do normal things! My sleep is much better, and hopefully having the Zopiclone ready for next time will mean I don’t get to that state again. 
KitKat - I also had a skin reaction to the PICC line dressing last weekend.

Thinking of any of you having chemo this week and those of you with aches and pains. 

I wanted to ask if anyone else is working on their good weeks? I’m working remotely when I’m fit to (I’m in HR) and still not sure If it’s good for me in some ways, or if I’m mad trying to juggle everything through this! I know everyone’s different, but would be good to hear from anyone on their experience.

thanks everyone

Heather xxxx

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Community Champion

Re: July 2020 chemo monthly starters

Hello everyone,

 Sorry I’ve not been on for a couple of days. Had terrible pain in my right rib. Just below where I had my surgery. Spoke to bcn yesterday and she thins I have pulled something. It hurts when I bend down or lie down in bed. She asked if it hurts when I take a deep breath in and it doesn’t, only when I sneeze or cough. I have had the pain since before my last round of chemo. It has got worse but then again I won’t sit still and still try to clean the house til to bottom each day and weeded the garden on Sunday😔

 I think you ladies are right as mums we do worry and try to take care of everyone. That is what spurs me on I know I can’t die now no one would cope lol 😝 i think it is hard on our children, but we have to remember that going through this with us they are growing stronger themselves. Hopefully the too will be able to deal with anything thrown at them when they are older.

 

 I hope everyone is feeling okay 

 

 lots of love 💕 Tara xxx

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Member

Re: July 2020 chemo monthly starters

Hi Tara, sorry had a busy few days and no chance to reply, yes your home life does sound like mine with similar issues, my youngest has huge issues with self regulation and gets very angry with meltdowns and aggressive behaviour. Seeing me with no hair has been the latest challenge for him. I hope your boys enjoyed their caravan holiday and you were ok on your own for the night.

I have two teenagers too, my eldest son is 19 and takes it all in his stride (or seems to, I think he bottles it all up). My daughter is 17 and she has been an incredible support but it is weighing very heavily on her, her mental health is definitely suffering with my illness and lockdown isolation too. I am trying to get her some counselling but it’s not easy in the current situation. It’s an additional area of stress Isn’t it, as mums and partners we are so used to worrying about everyone else, so we try to be strong even with this horrible illness and all the side effects from the treatment. 

Anyway, today has been a good day, I finally went for my prosthesis fitting at the hospital and I am so pleased with it! Worth waiting for, it feels really natural and comfortable, so much better than the softie I’ve been wearing for 4 months. At the moment, I can’t see myself opting for reconstruction when my treatment is finished, I found the surgery so traumatic and recovery took a while - I wondered how you were all feeling about reconstruction?

Best wishes to all you amazing women xxxx

 

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Member

Re: July 2020 chemo monthly starters

Hi Butler

ive had back and pelvic pain too.....like ovulation pains which I used to get each month and back spasms at the top, middle and bottom of my back....I actually requested a CT scan as I was so anxious .... which good enough, the Onc let me have and I was scanned from neck to thighs, and all clear.....( the pains seemed to lessen after my results so think anxiety didn’t help) ...  but I reckon it is the paclitaxol.... pains seems to come and go....but there’s always a pain somewhere 🙄.... and sometimes shooting pains down my thighs.... very odd.   
i have lost my appetite too.... what about you?.....every time I get weighed pre chemo I seem to lose a little bit more weight....I was 57 kg last time but I don’t want to lose anymore....especially once I lose my hair , I think I will need a bit of roundness to my face or I will look very gaunt.

my chemo is 0830am tomoz so early doors!!
take care Butler...keep in touch...let me know how you go.

thinking of you x x