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July 2020 chemo monthly starters

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Re: July 2020 chemo monthly starters

Hi kit kat hope you dont mind me asking.  I started paxitacil  and Carboplatin last Thursday.  Hv to go every Thursday for paxitacil  then on the 3rd Thursday both chemo again. Before this I was on fec which I did ok on. But this time I hv been in agony with back pelvic and knee pain.  So not sure if it down to the new chemo. Was wondering if you got this with the paxitacil  .    Juliex

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Re: July 2020 chemo monthly starters

How are you feeling Heather after your meltdown? Has the physical improvement helped you? Are you sleeping better?

Thankfully now I am off the injections I am feeling much better and even went for a 20 mile bike ride yesterday. Today I went and weeded my allotment and picked beans in the sunshine. I was up there for four hours and I was so happy! I got some bramble scratches so I washed my hands afterward in antiseptic and took a stray antibiotic I had left over just in case of germs. I really hope this week goes well to build me up for round 2 FEC next week. 

NB

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Re: July 2020 chemo monthly starters

Hi kitkat no I'm every 3 weeks but I was back to almost normal the week after my 1st chemo session so hopefully that will be the same for you xx

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Re: July 2020 chemo monthly starters

Good Job Claudia ! 👍
Hope you don’t get too many side effects...I will be on EC after paclitaxol... so I will follow your progress! I will be having it 2 weekly....is that same for you?

Your little man sounds like a little darling.... bless him.

i had my bloods done today ready for week 4 chemo tomoz....I have developed contact dermatitis from Picc line dressing so got different dressing today.
 Have a lovely evening x x

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Re: July 2020 chemo monthly starters

Hi all just come back from my second EC chemo treatment so now waiting for the side effects to kick in. Thankfully the infected finger didn't stop me from having the treatment so that was one positive. My 9 year old today told me not to worry if I go bald and I should talk about how I'm feeling to help me out. I did nearly cry at that point bless him 

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Re: July 2020 chemo monthly starters

I meant to say sweary, not sweaty 😂😂😂😂🙄

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Re: July 2020 chemo monthly starters

Hi everyone

thanks for all the updates. I’ve been laying low for a while as I just couldn’t sleep, had 4 almost sleepless nights and nearly collapsed physically and went over the edge mentally 😱😱😱 so so annoying as actually the side effects were much better managed after this second cycle, taking Piriton from Day 1 stopped the swollen, sore, hot red face and I had no cold sweats this time. But the lack of sleep ..... bloody hell....

I got some Zopiclone from my GP which worked, only for short term use as it can be addictive, but I’m back in the land of the living now! Lesson learned - don’t wait until I’m at desperation point to ask for help. It was so grim for all of us, I could barely function, my husband trying to juggle kids and work, kids bored and so desperate to play with other children!! Challenging times! But I did read your posts and is just so nice to have this virtual support group which really does understand the particular challenges of this during Covid and hear the positivity but also the honesty about what it’s like sometimes - so thanks girls 😁 
Tara, I have an (almost) 9 yr old too and he’s a sensitive, caring soul. He had nightmares and panic attacks about death (mine mainly but not limited to) at the beginning of my journey for quite a while, it’s heart-breaking to see such a heavy load on little shoulders, I want him to be carefree and enjoy being a child 😏. We worked with him to learn to sit with and manage these huge emotions, he learned to breathe through the attacks and tell himself he was safe, we found going into the the garden and holding his hands whilst he breathed and let his body calm worked gradually, huge life lessons eh? I’ve found it quite intense what a far-reaching effect my diagnosis has on so many people .... I’m normally a very self-reliant, independent and positive person, so not loving depending on others and them being worried about me. 

I did the shave too, last weekend, built myself up to it and felt better afterwards, shed a few tears and this week just have gradually got used to seeing myself looking so different. I expected to want to wear my wig all the time, but haven’t felt I needed to, but I took a bit of time on Friday to try some clips to pull it back off my face, etc. and enjoyed feeling a bit more like my old self wearing it Friday. I haven’t lost all of my eyelashes or eyebrows yet. I wore it without the hair net thing underneath and it felt cooler and pretty comfortable. Felt self-conscious when a friend FaceTimed, but it’s just adjusting and I’ve decided to just be kind to myself however I feel that day about it, it’s a big thing isn’t it?! Tara, thanks for the photos, I’ll post some too at some point, I love the plait in your wig. 

Anyone else having a genetics consultation? I’m just trying to gather family information from my parents, is pretty in depth. 
My injections are done now for this cycle too, so am looking forward to a week of medication free and feeling better. Did a decent length walk yesterday and felt better for it. 
I think we have to give ourselves credit, most of us have likely been pretty much locked down for months, kids too for some of us, lots of other challenges associated with the impact of Covid, and ‘limping’ as someone put it so well through cancer treatment too .... some days we might limp, but we might skip through some too and that’s bloody marvellous I think. Anyone else got more sweaty recently too?!!!! 😂😂

Happy Sunday everyone, huge virtual hugs, strength and power ... we’re getting through it together xxxxxxx

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Re: July 2020 chemo monthly starters

I’m relieved to hear so many people struggle with the injections. I’m going to ask about an alternative I’ve heard about. Thankfully that awful pain has gone and I am feeling better. I can’t remember for long how bad it was, a bit like childbirth! 
Now I am fending off visitors bearing flowers which is lovely but exhausting. I need to ration them as I will be all talked out soon. Not to mention the husbands hay fever.
I need some time to catch up on all the stuff not done in the last 2 weeks while I was languishing. And some fun stuff to take my mind off the impending Scary Scan. All in all though I think I am okay.

Hope you are all enjoying the weekend folks

NB

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Re: July 2020 chemo monthly starters

Hi Helen,

 it is a hot day today isn’t it? I am currently laying on my bed with the fan blasting 😝  normally I would be out sunbathing but not this year!

 Your home life sounds a little like mine. My seven year old has aspergers, so the lock down along with my diagnosis had totally thrown his routine. He mithers and stresses a lot. Mind you saying that I am more worried about my 9 year old. He has no additional needs but seems to be struggling. They went to stay in the caravan at mums yesterday but she ended up bringing them back at 11 last night because he was crying for me. It’s funny because I spent the whole of the night before sequencing the process for my youngest who was reluctant to go because he wanted mum to put the double bed up for him to sleep in and not the bunk which had been suggested. In the end he called yesterday to ask if he could stay for 2 nights, but it was my other son that wanted to come home. He has taken on the role of protector of me. He worries what I am doing all of the time and wants to know I’m not alone. Thinking about it when the youngest asked if he could stay an extra night I said I will have to see how I feel because my husband is on call tonight. I think he panicked I could potentially be alone. It’s so hard having to think about what you say with having chemo brain. I find the who sequencing process and visual timetable hard too as things can change in a instance and I am accused of being a liar. Mind you I live in hope that I can make processing more effective for him as he gets older so that he is able to deal with situations better. I can imagine you are the same.

 I find the injections hard too. Have just had my last one. The aches and pains will be here now for a couple of days. I had mouth ulcers after my first round and use corsodel mouthwash now that seems to have kept them at bay.

 Hope everyone else is feeling okay.

 Enjoy the sunshine 🌞  

 Tara xxx

 

 

 

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Re: July 2020 chemo monthly starters

Hello lovely ladies, hope you are enjoying the sunshine, even if the temperatures are a bit much. Tara, please don’t apologise for joining, I love all your posts and your positivity is inspiring. NB, I am doing better this time around, thank you for asking - less headachey  and nausea has been less too, although I think the filigrastim injections made me feel more sick in the evenings - oh how I hate doing those injections each time!

I have found I am more tired this time, but my home life is not terribly restful as I have a seven year old with additional needs who is full on, so that may be partly the reason. I have got bad ulcers on the sides of my tongue, so the hospital have given me some mouthwash to treat them, as they were making it hard to eat and talk!

Sending you all hugs, enjoy your weekends all, Helen xxx

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Re: July 2020 chemo monthly starters

Hi everyone,

Thank you fit the lovely comments about my wigs/bald head! I was just talking to my mum and she said I wonder what colour your hair will grow back and how thick?, I really don’t mind I’ll just be glad to be here and have hair. My husband said my stubbly bits are coming back through ginger like his at the moment. I love Nicola Kings hair in emmerdale so might rock that style! My mum said what if it comes back really curly and I said I will wear it in pigtails like the dolls in fraggle rock. I might dance like that too. Love a good dance 💃 

 Amy it’s lovely that you are spending the day with your son, it’s such a beautiful day today. My boys have gone to my mums to camp in her new caravan on the drive. They need an adventure! I will try to get out in the garden myself a little later when it cools down. The lie in sounds great too. I don’t struggle to sleep but are always up for 7:30. I would love to lie in.

 

 Hope everyone is feeling okay and enjoying the good weather.

 

 Lots of love 💕 Tara xxx

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Re: July 2020 chemo monthly starters

Not offended at all! 

I’m having a day with my son today after a lie-in this morning and actually the Picc line has been fine. I’ve got a long sleeve top on and I hardly know it’s there, which is a relief. 

Am feeling quite good today 😊

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Re: July 2020 chemo monthly starters

Looking good Tara!  With or without the wig 👍

where I am you get given a voucher at the pre chemo assessment appt, then Given a list of around 15 wig shops in the area to chose from.  If the wig you chose is over £150 then you pay a top up, I just asked for wigs within the limit to try on.  They all looked very natural, I particularly liked mine cos Of the dark roots....which I always seem to have!,

I am struggling to put my wig on, think I need more practice! Not sure if I’m doing it wrong, the lady made it look so easy! Or if it’s because I’ve still got my own hair.

x x
 

 

 

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Re: July 2020 chemo monthly starters

I love the wigs Tara! I had to have an online consultation to choose mine- little did I think at the start of 2020 I would be having to choose a wig, let alone do it online! I’m trying to get used to it- it’s not too bad, but will probably wear it for when I go back to work. I did buy quite a few turbans and hats etc because I thought they would be easier than headscarves, but found an old scarf the other day and was experimenting with it and decided they are quite easy to tie up and don’t look too bad, so now I need to buy some more scarves!!!

Amy, I understand what you mean about family not talking about treatment. My in laws haven’t even acknowledged the fact that I have started chemo, I don’t see them that often, but I do think it’s a bit weird not to even send a text but I suppose everyone deals with it differently!! 

Hope everyone is having a good week. After having my second round on Friday, I seem to have come out the other side today- yesterday I had no energy at all, but feeling much better today- even did some cleaning!!!

Take care xx

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Re: July 2020 chemo monthly starters

Hi Amy,

Thats absolutely fantastic news that you feel the medicine is working. I am so pleased for you and proud that you are now feeling positive. You have got this. We all have!

 I was worried about the PICC line with my youngest. I still have to lie with him each night to get to sleep. Bad habit but it’s the only way he settles. I have not had a PICC line yet but the nurse told me that should I have one it would be under the skin so he should not catch it. Just check with your team though in case I’m wrong.

 Glad you had a nice day with your family, the doughnuts sound great, I love a Krispie creme myself 😝 surprised I have not turned into one the size of me. Can’t stop eating.

 

 I find family don’t tend to mention my treatment either unless they are alone with me. Perhaps they don’t want it to upset you and realise that you have a life to live. To me I don’t want to allow it the time of day. I do understand that everyone is different though and I don’t want to offend you. Sorry if I have.

 

 It’s been lovely talking to you ladies. 

 Together we will beat this.

 

 Lots of love 💕 each

 

 Tara xxx

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Re: July 2020 chemo monthly starters

I was sorry to read about your A&E trip Nancy, that sounded horrid. You seem to have a very good attitude about it all. 

It’s interesting to hear about the wigs. It’s only been mentioned in passing to me and the oncology nurse said the nhs wig place (?) was closed at the moment. No one’s really talked to me about it. I think I will ask next week when I see the dr, as I think my breast nurse should be there. My hair is quite wig-like anyway, a chin length bob with a fringe, so I’m hoping I should be able to get a good one! 😁

My partner’s birthday was good thank you. I ordered a massive box of fancy doughnuts instead of making a cake and we drove down to his mum’s for the day to see family. We had a nice day although no one really mentioned my cancer or treatment which was a bit odd and put me on edge a bit. My young nephews/nieces were around and I think they were just trying to give us a break/nice day but still odd... I guess they’re all getting used to it too. 

Hope everyone else is ok and having a good week xxx 

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Re: July 2020 chemo monthly starters

Wow Tara those wigs looks amazing! It’s brilliant you feel you don’t need one all the time though. I am doing cold cap but only really two weeks in so not sure if it’s working or not yet. Trying not to think about that too much at the moment.

I had my picc line put in this morning - I was really nervous but the two staff that did it were absolutely brilliant. Let’s hope it behaves itself. My slight concern is picking up my little boy and keeping him from noticing it’s there - don’t want him grabbing at it. 

I had session three today and had a bit of weird reaction (head rush/tight chest and stomach) so they stopped treatment for an hour and did a loads of tests. They couldn’t work out why and once they restarted it was fine. A bit scary though and it meant I was at the hospital 9-4.30... a long day. 

The good news is that I think I can feel the medicine doing it’s magic - got a check up next week with my consultant but I can feel a difference already. Such a relief. Obviously won’t know exactly what’s happening until I have a scan (due after 9 sessions). But it’s a glimmer of positivity that I really need.

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Re: July 2020 chemo monthly starters

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 bald in chemo

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Real hair wig

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 fake hair wig

 

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Re: July 2020 chemo monthly starters

Hi ladies,

I have jumped in from June again, hope you don’t mind?

 I originally brought a wig online as I was diagnosed right at the start of lock down and the wig supplier for my hospital was closed and could only offer a bandanna. As you can imagine I went into total panic mode and ordered one via video chat through Trendco. This was a real hair wig. I brought a long one and bit my best friend a hair dresser to cut it and style it for me. I’ll upload a pic.

 On the 21st July, I like KitKat went along to the hospital wig supplier and got my free wig. This is not real hair but in all honestly is just as good if not better than the real hair one. It holds its style brilliantly. I’ll upload a pic of this too.

 I have to be honest and say that after all the panic about loosing my hair, at home I prefer to go bald! This is the same when popping to get the bins in or going for a walk around the cal-de-sac with my boys. I even took it off in chemo last week  because it made me feel really hot. I thought I might scare people without hair but my boys and nieces love it, they offer to cut some of their hair off to make me a fringe. 

 I am going to Blackpool the end of next month and fully intend to get creative with some glitter wigs. I also really want a mermaid one. 

 I bet it would have been funny to go to the appointment together, as I say to my husband, you choose me a wig I can now be the woman of your dreams 😝 I would like to have gone with my youngest, he is 7 and has aspergers. He loves dressing up and often wears my wigs. It’s like if he dresses up all the anxiety goes away. He can be someone else.

 

 Once again sorry for gate crashing.

 

 Hope you have all had a good day!

 Love 💕 Tara xxx

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Re: July 2020 chemo monthly starters

Hi Nancy

Well got my wig!
its a very overwhelming experience, and I still have a full head of hair with no signs of it coming out.  I felt like crying, even though the ladies were so nice, it brings the whole cancer thing home.

They have 3 sizes but the lady said most people are average ( I was) .   I had my temp taken at the door, attended alone, due to civic, I was only allowed to try a maximum of 3 , again Due to Covid restrictions.  Luckily the first one I really liked.  I wanted a similar style to mine, so she brought out about 10 in different colours.  If I had a wanted different Colour they would send away for one to collect in 2 days, however the one I tried on was a good colour for me ( dark blonde with roots 😁).
my appointment lasted an hour approx , my wig voucher ( £150) covered the cost of the wig but I would have had to spend extra on the shampoo etc but my friend already had some left over.  They also provided a little skull netting cap to wear underneath.

if I,m feeling brave enough I will post a pic later ! 
speak soon x

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Re: July 2020 chemo monthly starters

Cross posted with you there Kitkat. I am intrigued by the wig issue. I am waiting for my fitting. Do you know how it works? I imagine they go “Okay missus what colour? Long or short? Curly or straight?” Then measure your head and give you peanut orange or melon sized accordingly. Mine will be large turnip! Im hoping dark blonde Short and straight. Then I am planning to take it round to my friendly hairdresser to style it for me before I decide if it is wearable. This is a complete fantasy so can someone who has actually had the fitting fill me in on what they did?   
Has anybody gone for a change in colour? Gone curly? 
So much new stuff to get to grips with here.

I wish I could come with you Kitkat it would be a laugh.

Claudia hope the Whitlow is behaving.

Heather have you clipped yet?

Sunshine hope your energy levels held out It’s frustrating isn’t it? 

Amy how was the birthday?

Helen and Mango veterans of Round Two how are you feeling now? Is it easier or harder this time? 
Who else is in the July gang? Jencat? Kate? I can’t roll the thread back while posting! 


NB

 

 

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Re: July 2020 chemo monthly starters

Morning folks and thanks for your kind wishes. I am feeling much better and only have one more Filigrastim injection left this week which will be a relief. The chest pain is settling too. The chemo unit nurse confirmed sternum pain is not uncommon. Now I know what it is I am cool with it. The best thing that happened on Saturday Night was a chat with a friendly Ukrainian nurse called Natalya who said (heavy accent) “Don’t be scared. You have to go through pain to get better”. I respond well to the metaphorical boot up the backside so this helped me. 
Interesting that the chemo nurses solution was to look at my dose and changing or stopping it. No thanks I want my treatment! I can deal with side effects when I know that is what they are.
Now I am mending from Round One it is odd how many people comment on how happy and healthy I look. Can a person with a tumour who is full of poisonous chemicals be healthy? It seems like a paradox. I’ll take the compliment anyway. 
So it looks like there is now a two week lull while I get on with things until Round Two. My energy levels are up and down but I have lots of little projects to tend to. 
How much exercise are you all doing? Gentle walk? Jogging? Cycling? Or just pottering at home? Are we even allowed out at the moment? 

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Re: July 2020 chemo monthly starters

Hello Everyone... how’s everyone doing?? Good...or at least ok...I hope.

I had my 3rd weekly Paclitaxel yesterday and feeling ok .... got a big red steroid face today and will probs be awake all night tonight ( like last 2 weeks) but nothing to complain about. 
Got my wig Appt today .... gotta go in alone ( Covid 🙄 ) ... so a bit apprehensive... wasn't going to bother as I thought you only got a wig voucher for certain benefits but was told everyone in my area gets one ( so that’s a billy bonus!) .

My eldest son is coming along for the ride then we are going to walk the dog then have coffee outdoors somewhere.  My daughter is bringing her 2 girls round after nursery for a garden visit.... so a good day planned! 
soon be August already! So hoping my next 13 treatments fly over and it will soon be November! .... hope the same for you all too.   Post where you are all up too, if you can.

lots of love 

x x x

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Re: July 2020 chemo monthly starters

Hi Nancy so sorry you had a reaction to the chemo, I hope your feeling better today. I have an infected whitlow on my index finger so I rang Christie's helpline to see how long do I leave it until I need to see a doctor as my temporature is fine she said now or go to the out of hours gp 😬 luckily my gp was still open at 6pm and I managed to get a prescription. I'm due to have my chemo on Monday so fingers crossed it still goes ahead 

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Re: July 2020 chemo monthly starters

Oh dear Nancy Blackett - sorry to hear that,  must have been quite scary. Hope you are continuing to make a good recovery. Glad you didn’t get sent into the a Covid zone!!!
I’m doing ok today, but feel very tired and achy. Going to have a bit of lunch in a bit then think I will have a snooze this afternoon!
Take care x

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Re: July 2020 chemo monthly starters

We have quite a motley crew now limping together towards the end of July.
It is really helpful to hear how those that are further in are coping.

I was feeling better on day 5 yesterday but then had a weird episode of severe chest pain and fever last night. After a while I rang the chemo ward and they told me to go to A and E to get checked for sepsis. There was a standoff when the triage nurse thought she would send me in via the Red Covid Zone !! but I eventually got admitted to the Green side and quickly had the screen of bloods X-ray ecg urine and a dose of domestos antibiotics. Everything was fine and the conclusion (mine!) was I had an overreaction to the filigrastim injections. All  my neck glands and chest ached. By 3am I was home and slept for hours. Today I feel fine again but a bit fragile. It all feel so new and unfamiliar and last night I was actually scared which is rare for me. 
I feel like my fit strong body has taken on board the horrible chemicals and is going WTF just Happened ? 

Hope you all enjoyed a weekend with people you like. Good luck this week those on the next dose

NB

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Re: July 2020 chemo monthly starters

Sounds a lovely day KitKat! Glad you’re feeling well and can enjoy it 😊 having positive loved ones around makes so much difference doesn’t it? 

Although some days I feel don’t have enough energy for my bouncy children, a lot of the time I feed off their energy and unique perspective on life, is a great distraction. 

I had my second 3 week cycle on Thursday and my hair is really dropping now. I have my wig and beanies ready, but still cried last night, it’s long and everywhere. We have clippers for when I’m ready, I wasn’t quite ready yesterday, but maybe today ....... 😬  you know how you wash and blow your hair and feel ready to face the day ... it’s part of your identity isn’t it? 

On a positive, taking Piriton before my chemo and each day so far has helped my face swelling/heat massively, that’s a great relief. 

Happy Sunday everyone xxxxxx

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Re: July 2020 chemo monthly starters

Hi Heather!
Nice to ‘meet’ you!

Hi everyone else....Happy Sunday 😁

No rain here today where I am so I am making the most of feeling well and cleaning the inside of the car ( which is disgusting!) then meeting a friend on the park then my daughter is cooking Sunday lunch and I will get to see 2 of my granddaughters ( at a social distance! ) .... so a good day.   It’s my family and friends that keep me going. My oldest son has come over from Canada ( where he lives) to spend 7 weeks with his Mama so I’m feeling very loved! 

 I think you have little ones, it must be hard trying to cope with all this and still be ‘Mummy’ 24/7.

 I have my chemo on a Tuesday, then Wednesday and Thursday I feel lousy, then I’m ok again.

Hope everyone has a good day.

take care 

x x

 

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Re: July 2020 chemo monthly starters

Hi Nancy Blackett

I’m doing ok- can still taste things- just about, but I can feel my mouth going a bit weird (a strange feeling- I can’t really explain it!) so I’m making the most of cups of tea as I’m sure by later today I won’t be able to taste them!! I felt quite washed out yesterday, but I do think I overdid it a bit in the morning! 
Hope you are doing ok still and your energy levels are rising x

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Re: July 2020 chemo monthly starters

Welcome KitKat 😊 

no wonder you’re shell-shocked. That’s a lot to cope with, and as you say it’s so weird going through consultations and chemo on your own. I had my husband on speaker phone for some of my consultations when my head was just spinning, he remembered some of the things that just went out of my head. Anyway, sending you strength, support and hugs from a distance xxx

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Re: July 2020 chemo monthly starters

Hi @amyc and @MangoMacaqueI believe that changing the option from here should do the trick with regards to displaying comments in the order you'd like them to appear 🙂 

Bernard

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Re: July 2020 chemo monthly starters

I’m ok thank you... I think my side effects are much more manageable because I’m on the lower weekly dose. I just have a funny taste in my mouth and a bit of tiredness. Did my 10,000 steps today although it was a bit of a struggle. I’m struggling more with the emotional side to be honest... I have good days but also get quite panicky and tearful if I allow myself to think too much beyond the next few months. I’ve got a referral to a psychologist in a week or so, hopefully that will help. 

It’s my partner’s birthday on Sunday so I’m hoping we have a decent weekend. Feel a bit bad I haven’t really done much for it but I guess I have a good excuse 🙄


That’s great you’re feeling better. The allotment sounds great. I hope tomorrow is better still for you. Sounds like good advice not to overdo things but I know it must be frustrating. 

 

 

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Re: July 2020 chemo monthly starters

How are you Sunshine? Has your taste gone weird again? NB

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Re: July 2020 chemo monthly starters

How are you today Amy? I think I have turned a corner as I haven’t felt sick today and even cooked tea. I went and picked some beans on the allotment which wiped me out but it was lovely to be outside. Fingers crossed day 5 will be better still. My nice neighbour whose wife has had BC came out and warned me not to overdo it as it will get cumulatively worse 🙄

NB

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Re: July 2020 chemo monthly starters

Hello 

Thought it was about time I came on here to say hello. I’ve had my second cycle of docetaxel, cycloclophosphamide and herceptin today. The first cycle, for me  week one was the worst and was very tired and  lost my taste buds but picked up again during week two so I’m hoping the second cycle will follow a similar pattern though I have been told the tiredness does increase. Like you, I had windows of having a bit of energy and then I would have to sleep for a bit and I would have to take it one hour at a time! Hopefully when you are coming out of the first week, you will start to feel a bit better x

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Re: July 2020 chemo monthly starters

Welcome Kitkat. You have been through the mill a bit! Third time lucky eh? At least they have really good drugs now to control this horrid disease.

Day 4 round one FEC today
I spoke too soon yesterday. After a good start it went downhill. It seems there are windows of feeling okay to get washed and do life admin and eat then I crash and feel awful and have to hide away. Today was good from 6am till 8am then crashed until now. It’s a rollercoaster to be sure.

i can’t imagine how you folk with a baby or toddler are managing. I found that hard enough when fully fit! 

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Re: July 2020 chemo monthly starters

Hi Everybody

I thought I would join this group if that’s ok.

Ive had my 2nd chemo this week and feel ok ( ish) up to now.

This is my 3rd primary BC; had DCIS left side in 2012, then a DCIS recurrence in 2018, so have had mastectomy now left side; then new primary found in right side in May this year; IDC this time, grade 2 , 12mm,  ER + 7/8 HER2 neg .  Had wire guided WLE in June, surgeon wasn’t expecting any lymph node involvement as not seen on ultrasound however sentinel node was found to have cancer cells so plan was changed.  Now on 12 weekly Paclitaxel to be followed by x 4 EC, then rads and zoldronic acid and letrozole for  ? 5 years.

Still a bit shell shocked really, the hard thing this time round is that everything has to be done on your own due to Covid.

Hope everyone having an OK day

x x

 

 

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Re: July 2020 chemo monthly starters

Feeling better this morning and when I read the side effects of the Emend antiemetic that describes how I felt which is good because I have finished that one. Today my wonderful husband gave me the first Filigrastim injection of 7 and so far so good. I am going to walk up to my allotment later with the compost bin. Today’s challenge! It’s all a bit wearing but I am okay.

Who else had treatment this week? I am sorry your veins were troublesome Amy I am so glad now I have the PICC it is no problem

NB

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Re: July 2020 chemo monthly starters

I’ve asked the mods to help you, hopefully you will get post on here from them soon, hope this helps 💕💕Shi xx

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Re: July 2020 chemo monthly starters

Hi Mango

The way you describe viewing posts in the forum is the way I see it too... it’s annoying. I was wondering if there was a way to reorder it so the newest post was at the bottom but I haven’t found out how.

Glad you had a better session yesterday - how have you been feeling in between the sessions? 

I had my second yesterday and was there six hours which felt a long time for a 2.5 hour treatment - there were lots of issues finding a vein. All pretty grim and in the end someone came with an ultrasound to do it. Picc is going in on Wednesday immediately before my next treatment. So hopefully that will make things easier from now on.

As I have to go weekly I’m trying to work out when I will start to relax in to the regime but with the picc next week and then an oncology appt straight afterwards the following week, I think it could be a while. Would be nice just to have an in-and-out treatment. 

I am 39 with a 21 month old so we’re not too different. Hopefully your baby is a nice distraction but it must be hard work too. Do you have a partner around to help out? I am so glad mine is still working at home because of the virus.

How are you feeling today Nancy? 

Hope everyone else is doing ok. 

Amy x 

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Re: July 2020 chemo monthly starters

Hi all

I started chemo on 1st July and just had my second session yesterday. It was better than the fist because I had a reaction that time. Yesterday was uneventful. It was also a lot shorter, partly because of no reaction but also because they didn't have to do the whole induction. Another reason is that my Doctor saw me the day before instead of yesterday, when he was on leave, so I was able to skip that part. All in all it was 6 hours, instead of the 13 hours that my first session took. 

I haven't posted until now because I can't actually figure out how this works (is this chemo brain??) When I open the forum I expected to see the first post at the top with the replies nested beneath it, but what I actually see is lots of replies to different messages all in a flat layout and I have to scroll right down and hunt to find the original messages. Is that what everyone gets or am I doing something wrong? 

I'm 35 with a 9 month old baby and still adjusting to the news of my diagnosis, I imagine we all are!

Looking forward to interacting with you all, once I can get my head around the layout!

MM

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Re: July 2020 chemo monthly starters

Oddly all sensory input hurts today. Sound light taste and smell all jar. I am mainly curled up with my eyes shut. But surfaced for coffee and a brownie so things are looking up. Looking forward to some light reading music and films soon though. And a lovely lady rang from Charity Hair Care. One down five to go!

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Re: July 2020 chemo monthly starters

Well done NB! Look after yourself - I can recommend Mrs America on iplayer if you’re looking for something to watch. 


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Re: July 2020 chemo monthly starters

I’m home from my first FEC which was a surprise. In and out in just over an hour. I feel like I have a nasty hangover with fuzzy head and queasy. But all straightforward. Now to lie low for a few days

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Re: July 2020 chemo monthly starters

Thank you both for the messages about the PICC, that makes me feel better 😊

Hope you get on ok tomorrow Helen c 

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Re: July 2020 chemo monthly starters

Hi Amy, I just wanted to reassure you about the picc line. I had mine put in just before my first round of EC, it was fairly straightforward to have done - the radiographer looks at your veins using ultrasound, then a fine tube is inserted under local anaesthetic and then they x-ray you to check it is in the right place. It didn’t hurt at all, I just had some bruising afterwards but my veins were a bit tricky to access apparently. The picc line is on the inside of the upper arm and covered with a dressing so doesn’t get in the way. It does need flushing every 7-10 days which is just a small amount of Saline fluid squirted in. 

Having the line makes it much easier every time they need to take blood etc. and my chemo apparently makes your veins collapse (lovely!) so cannulas would be hard to insert.  I bought myself a waterproof cover so that I could shower but some hospitals provide these I think. Mine was about £18 on Amazon and works brilliantly, it is stretchy rubber like a swimming hat for the arm! I can send you details if you want.

I had my blood test this morn and back in for my second chemo tomorrow. I hope all goes smoothly for you on Wednesday and that you are having a bit of relaxation in the sun this afternoon. 

Very best wishes, Helen xxx

 

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Re: July 2020 chemo monthly starters

Amy I had my PICC line inserted this morning and it was painless and easy. They gave me a waterproof cover so I can shower and I cycled home afterwards. Honestly it’s nothing to fear and I was pretty scared beforehand.

 

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Re: July 2020 chemo monthly starters

Hi Jencat and thanks for your message. Sorry to hear that it has returned for you, that must be difficult. I’m so pleased that you have felt a response to treatment - that’s the thing I’m so desperate for at the moment. My lump is quite big and my breast is visibly swollen with it and it’s such a constant reminder. I’m so hoping that this treatment is going to shrink it down but there’s nothing to do but wait and see I guess. 

My first session last week was ok... I was very nervy when I first got there but the nurse was brilliant. I managed to read while having a cup of tea for about an hour of it, which I was amazed by. Cold cap was ok too after the first shock of it. I think they want to put a PICC line in which sounds a bit grim but I’m not very good with needles so hopefully it will make things easier. I had to nip over to A&E the day after my treatment because both my arms swelled up with a rash but they checked me out and sent me home with antihistamines so nothing too drastic. Otherwise side effects were minimal, just tiredness and a horrible taste in my mouth really. 

How is everyone else doing? Any nice plans this week? My little boy is at his childminder today so I’m going to try and catch up with some life admin type things and maybe do some reading in the garden. Then it’s blood test tomorrow and back in for chemo on weds. 

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Re: July 2020 chemo monthly starters

Claudia I will allow you that as your brain is scrambled! Anyway my real name isn't Nancy Blackett but there is already someone on this thread with my name so I took that name as she is a role model for  me. 

Jencat Hello and sorry you have been having such a tough time. It is kind of you to help others. 

 

 

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Re: July 2020 chemo monthly starters

Hi Amy,

I'm so sorry to read about your diagnosis, I am in a similar situation to you. I was diagnosed with bc in June'17, Stage 2 and TN and had chemo the same time as the lovely Shi. Unfortunately my bc returned at the end of last year and I've now been diagnosed with SBC in my sternum (a 'nibble' I was told!) and whilst on Carboplatin, some spots showed up on my lungs. My onc suggested I went on weekly Paclitaxel as I'd responded well to Docitaxel in 2018. I'm having it 3 weeks on, 1 off. I'm finding the side effects ok, but I do find I'm tired and a bit weak for a few days afterwards, probably not helped by the steroids you have for a few days afterwards and that I'm nearly 61! It's also a bit of a pain having to go to the hospital a couple of times a week for the chemo and the blood test a day or two beforehand.

On a positive note though, so far I've had a good response from Paclitaxel. My breast lump is external and I've had problems and a lot of pain with it. After only 2 rounds (2/3 of a cycle) I could see and feel a difference in my lump and after 2 cycles, my onc was thrilled when she saw how much my lump had reduced. Infact she has now doubled the cycles so that I will be having 6 instead of 3. My pain has also significantly reduced-I only need paracetamol a couple of times a day now, previously my SBC had suggested I contacted the hospice for pain relief advice. 

Hope it all goes well for you, Jencat x