Well done on the cosmic yoga 👏👏👏👏👏
Home schooling whilst coping with chemo side effects sounds challenging but I hope there are some laughs too 😆
Good luck with your virtual appointment with your oncologist next week. I hope you get the answers you need. 😘 😘 😘
i am so with you on the fatigue. I did feel better this morning but am fading again.
It’s a tough one. I did sit in the garden for a bit yesterday which was lovely but I just lying up most of the time. I am supposed to rest to get my white blood count up I think but at the same time it’s good to exercise whilst on chemo. So I’m confused. So I’m just doing what I feel like. At the moment that doesn’t include exercise.
I do hope you feel better. Enjoy the dance round your daughter.
You take care. Xx xx
how we all doing?
day 3 of home schooling going well,although I’m shattered ha ha.
i have however re started yoga again which I have really enjoyed.I did Cosmic kids yoga with my son then 20 mins on my own.My plan is to do this every day when i can and try and build my strength up after surgery and this gruelling treatment.
my oncologist is ringing me next Wednesday to explain why I’m now having Ec and not FEC.Then all being well I’m going in for cycle 2 the following day.
hope everyone ok and managing best way we can.
lots of hugs ❤️💐
Sounds like we are all finding things a bit tough at the moment.
I am day 6 after 2nd chemo and have been suffering with fatigue the last couple. Found a bit more energy today to get outside and do a tiny bit in the garden. I really do need to keep doing something for body and soul!
My hubby had to drive up to Leeds last night to "rescue" our daughter from university! She had been staying up there on her own so as not to bring any bugs home but we felt after the latest govt announcement that we should pick her up! She did return home with a load of loo rolls and some pasta 😅(and a load of dirty washing) but I am happy she is home now. We are dancing around the house avoiding each other as she stays away from me until we know for sure she has no illness! I have mine own kitchen times!
Other than that not much to report....slowly coming off the white carb diet and back to normal eating. Need to do a serious stock take tomorrow though as we seem to have a lot of tinned tomatoes but not a lot else!!
Take care everyone and keep in touch xx
Hope today is a better day for all of you.
Been feeling so so tired today so stuck to the sofa apart from afternoon nap. Did briefly sit in the garden with the sun on my face. Lovely.
Hi Jowels - good luck getting more info. I really do hope you start to get more feedback on things. So frustrating waiting for info. Especially in these anxious times.
Hi Wildspur - hope your chemo went well today. I haven’t had anything from the NHS yet either. I’m expecting it any day but who knows. All the stuff that relates to vulnerable groups certainly applies to us.
Juliana - so sorry you’ve been having such a tough time and hope things improve soon. It is a nightmare. These are scary times for all of us. It is out of our hands so it’s not surprising you feel hopeless. However, I do hope things start picking up soon for you and all of us.
BTW when I went in on Monday they told me they plan to send some nhs patients to private chemo facilities to free up nhs space so I don’t think there’s any plan to stop chemo treatment.
Take care all of you. Back to the sofa for me. 😘 😘
worrying times of us.We spoke to Oncology and where possible my chemo is to go ahead.I know each trust will have their own plan so fingers crossed for us all
sending hugs x
This is my worry too. All very confusing! My husband says we have to stay at home and only go out for hospital appointments. I have chemo #2 today so I will let you know what they say!
Good evening ladies
i have my chemotherapy booked on 03/04 and I received the text message from NHS to be isolated for 12 weeks. I am worry that this applied that I won’t be able to do chemotherapy for this period. What are your thoughts?
so sorry you feeling so rubbish I can totally relate.We are all with you.
its certainly like a nightmare I feel the exact same.
Hope you pick up soon
sending hugs 😘😘😘x
Hello lovelies 💓
sorry I’ve not been around much over this weekend- felt really really rubbish and to the acute chemo phone line few times as caught a cold (or Coronavirus, will probably never know - the rest of the family are doing well) on top of constipation becoming diarrhoea and still feeling queasy .... and it’s only first week after first chemo.... GP has been very good though, and prescribed antibiotics for prophylaxis this morning, so fingers crossed it will only improve from now on🤞
the sunny weather however did cheer me up (a bit) and I managed to spend time outdoors in the garden. I am feeling so hopeless at this time, like being in the middle of a nightmare that I cannot manage to wake up from 😞
right, I’m off now, hope my next post is a bit more cheerful 🤞😘
Ah hope so Wildspur
keeping my fingers crossed for you
we could do without this uncertainty that’s for sure.
That's what I am doing Jowels along with the husband and son. But just worried as (like you say) I haven't had anything to say stay at home from the NHS - so I assume chemo will be going ahead tomorrow.
Mind good luck getting any correspondence with anyone now
my hubby rang our hospital 18 times and it took all day to get through.
i have fought for every piece of info from the beginning of this nightmare I can tell you.
least we all in it together lovelies xxx
Quick question...are we classed as vulnerable? And has anyone had a letter/call from the NHS? Chemo #2 tomorrow and really worried!
Salsa so sorry to hear your count too low.Hope you can have a good rest and enjoy your garden.
how id love to have a walk now I’m in isolation,I’m only able to do circuits of our yard,better than nothing though I know.Nice to sit out too 😍
yes I’ll get to the bottom of it and let you all know
big hugs everyone xx
sadly my white blood cell counts are too low so no treatment this week. Bit dissappointed as I really do feel well. Well a bit tired and I might be coming down with a cold. But honestly I feel fit and well. So I’m assuming I rest up this week whilst absorbing as much sunshine in the garden as possible. I’ve really been enjoying my walks but perhaps not so far this week. I’m already eating well so I don’t know what more I can do.
started sowing some seeds in our mini propagater so that will give me something to focus on.
you take care all. 😘 😘
Jowels I hope you uncover the mystery of the missing F. It always unnerves me if someone says I should have something and then they take it away. 😟
Anyway look after yourself. 😘
Thank you Salsa 💕
well,the plot thickens.My hubby rang oncology to be told that my consultant has changed my treatment to EC.They are dropping Fluoroacil.He asked why and they said no I’m not there as long!I don’t understand as they are all pushes and it’s only going to reduce the time I’m there by half an hour.Also if it makes no difference why were we have it in the first place.Feel so confused.They ringing us back tomorrow apparently to ensure I have my prescriptions for after cycle 2.
has anyone else been told this?
Salsa how did it go today?💓xx
You are so right that we have to let so much go as we have so little control over things. It sounds like you are doing amazingly well in very trying circumstances. Good job to get your husband to check treatment plan as you need to focus on you and feeling as well as you can everyday. We need to take each day at a time. Glad you are eating a bit. Even if it is only a little. Please take care and be kind to yourself. You are going through a really tough time. We all need to be kind to ourselves at the moment. Take care.
😘 😘 😘
Salsa thank you 💕and good luck for round 3 today.
i got myself in a state yesterday,all got a bit much with covid and feeling just so out of control on top of feeling pants.
i managed to sleep through last night and the bone pain has eased.Im off the filgrastim now,so I’m feeling brighter.My friends are also nurses so I’m worried about them as well I guess feeling guilty I can be at work running my team and helping.Got to thinking I have to accept what’s happening and that none of us have much control over our treatment at the moment.My hubby is going to ring my nurse and see what the plan is for next week for cycle 2 as I can’t use energy up on that worrying about the plan.
we are home schooling our son so have a timetable between us,think it will be lovely on one hand but hope my brain up to it with this wierd fog from chemo argh!
How we all doing for eating?Im a bit better but still not much appreciate so little and often.I did manage a jacket pot last night so that’s something.
Hope everyone is doing ok and good luck for those of u having chemo this week.
sending hugs 💓x
But seriously Jowels I’m so sorry you are feeling so rubbish and having such a tough time. Mother’s Day is emotional for me too. After going into menopause at 39 and after years of fertility treatment we adopted. And now my gorgeous boy can’t even come round to see me. But he has contacted me so I’m feeling v lucky.
I hope you are able to enjoy all the treats you get. Big hugs 🤗
Happy Mother’s Day to all of us. Hope you are all doing ok with side effects.
Mothers day to me,as always meant so much to me as I had a very long emotional time to enable us to have our son.I wish i felt better though.The bone pain was bad last night and back pain which is a new edition -argh.Had last Filgrastim last night so I’m on sofa resting with hot water bottle and maybe some chocolate later.
salsa I know what you mean re forgetting things.I just can’t get words out or just forget entire conversations and repeating myself.Its quite frustrating trying to read and read emails or messages. It takes ages to write a post and have to keep re reading it!
Can you think what we will be like at end of cycle 6! Can’t think about that or my head my explode!
Hope everyone is managing best way we can.
keel safe everyone and hugs 💕💓
Happy Mother’s Day for all of those of you with lovely little darlings.
And to those of you who support those with kids, who are loved and I hope appreciated.
And thinking of all of you that might find today hard for any reason.
Jowels. These are scary times do not surprising you are nervous of going for treatment and scared of catching something. I think it’s really normal to be anxious about it all. We should be as we have to take care. I too am really scared. Go back tomorrow for round 3 and I’m worried.
I don’t know if this is chemo fog but I keep forgetting things. Like words. Where roads near me go to and conversations I’ve just had with my husband. Might be because I wasn’t listening properly 😮
but Andy says it was definitely worse the day after treatment and is improving. I think sometimes I had waves of feeling rubbish so just couldn’t think straight. I guess I’ll find out tomorrow if it’s just me loosing my marbles naturally or it’s related.
Anyway. Have a fabulous day all and hope you are all feeling bright enough to enjoy all the sunshine ☀️ 😘
ange I’ll be trying the frozen pineapple idea, thank you as this taste is just the pits-grantees worse with the thrush.I still can’t even manage a cupa-normally my tea pot always full.Energy today is not much.Afternoon tea sounds lush.I had a bit Victoria sponge last night and as I’m still only eating the white carb stuff I may make some cheese scones with my son later.
sorry about your hair ange, it’s so rubbish for us all.Good plan re sleep cap.I ordered one last week.Still got my hair at mo but I know not for long.
i don’t know about you ladies but I’m so nervous to go back into hospital for bloods then to sit there for the fecking FEC incase I pick something up.To add to that I’m asthmatic so it’s double trouble.
ive got a mask which I’ll be wearing but still I can’t wear that the whole time.
hope everyone can enjoy anything you can today lovelies
lots of love and keep safe x
afternoon tea sounds fun. What a sweetheart. We all need treats. I am going through my store cupboard and working out what biscuits I can make as we have plenty of savoury food but I am craving sweet things.
Sorry to hear about the Kojak situation. So hard.
Yes I’m reading too. Currently switching between Hilary Mantel and audio books for when I can’t be bothered to even pick up a book.
Went for a glorious walk this morning. It’s lovely out there.
Hope you all enjoy the sunshine and have a great weekend. 😘 😘
Hi everyone! Loving the wig pictures - looking fabulous ladies xx
I am on day 4 of my 2nd fecking FEC cycle - one more to go and then 3 x Taxol which I hear is even worse! Trying not to think about it too much!
Energy levels a little low although did get outside for a little bit of a garden tidy yesterday and really enjoyed getting some fresh air. This self isolation lark is taking some adjusting too but already some good things popping up free on line including zumba, virtual choir and even a pub quiz! Thankfully, I like reading too and plenty of books I have never had the time before to start!
So the Sinead look is rapidly descending into more Kojak!! Had to explain that reference to the 17 year old too! Need a hair cap in bed at night and wearing a head scarf during the day as it looks like we have a dog in the house - constantly shedding hair. Words I though I would never hear this morning from the hubby; "Morning love, you've got a bald patch at the back!" Ah the joys of marriage!!
That said he is venturing out in a bit to pick me up a takeaway "afternoon tea" so not all bad. Not sure I will want the scone and cream but put that aside for when nausea abaits ...hopefully fairly soon and pretty sure a scone constitutes part of the white carb diet!!
Interestingly for those of you having FEC, I made some frozen pineapple juice cubes which I took with me for round 2 in a thermos and started having them as soon as they injected the red poison. May be a coincident but still no metallic taste or cotton wool mouth - so maybe worth considering?
Have a great weekend everyone - stay safe and positive!
❤️ Wigs looking fabulous ❤️ just a quick one re mouths, glad to see you have fluconzole for thrush mouth, don’t know if you are gargling with difflam too, found that really helped and washed teeth and gargled after each time I ate. Sending ❤️💕💕✨✨Shi xx
So glad you are happy at home at last. Yay pizza. Enjoy.
it’s good you can self isolate but it’s wierd. Still v lucky hubby can stay home and self isolate with me.
I will be doing something like tamoxifen too after I finish with the chemo. But there’s a big difference. I’m already menopausal. So sorry you are going to get pushed into it so early. it’s tough.
Let’s hope no one’s treatment is delayed.
Take care. 😘
I’m on weekly paclitaxol for 12 weeks and herceptin every 3 weeks for 12 cycles.
I had a lot of DCIS after they removed the tumours and they found some were herceptin receptive. They only treat for herceptin receptive tumours with chemo apparently.
How about you?
thank you lovely.I am so pleased to say I’m now home with my hubby and beautiful son.It feels so good ❤️
We are now completely isolating so other than my hubby dropping me at hospital for bloods and chemo.
im not rocking Sinead yet but I’ve cut my hair into a pixie and my head is so sensitive and itchy.Suspect it won’t be long.Not sure how I’ll be when it’s all gone but I’m as prepared as I can be.
So I got diagnosed 6th Dec after being told I had a cyst and getting it drained for weeks.Then surgery 14th jan.My plan is 6 cycles of FEC then a month off then 4 weeks radiotherapy then Tamixofen where I’m told I’ll go into menopause.
My Oncologist has said she will keep my chemo to time as long as she can so I’m just hoping I can get it done by July.Hope this happens for all of us.I know we are all at different trusts but you have to have hope don’t you.
im going to try a little pizza tonight for my celebration tea back home.
Tommorow we do some planning for our sons schooling.We have a plan me to do what I can before cycle 2 then hubby take over until I’m well again.Like a tag team.Im very lucky to have such an amazing husband ❤️
Thanks for your kind wishes
sending you hugs 💜
thank you for your message. Also loving the wig. Very chic.
it does sound like things are really hectic for you. It’s all so crazy.
I too am self isolating and my 20 year old so has moved in with his girl friends family for the moment as he’s still working and he doesn’t want to infect me. At least college has closed. So it’s really quiet here. Just me and hubby. Not too many gritted teeth moments so far so all good really.
sorry your hair is falling out, especially after going through all the agony of it in the first place. Wig looks great but I know it must still be so tough. It’s a very emotional thing.
sending lots of love and hoping your next treatment goes well and you feel okay afterwards. Take care 😘 😘 😘
thanks fir your lovely message yesterday. Sorry I missed it.
I’m glad you are eating a little better and hope you are settling in again at home. And being looked after. It must be so hard with a little one.
the whole C-19 thing is worrying. I don’t want treatment delayed but frankly I am expecting some sort of hiatus. I do hope it doesn’t happen to you. How long is your treatment plan for? November feels like a long time ago. I first found a problem in November then everything was turned upside down.
So are you already another Sinead? Must be so hard to face it. Sending hugs and love and hope things start going more smoothly for you soon.
😘 😘 😘
Sorry you were so sick after during cold cap. You’ll be another rocking Sinead then or wigging it. Glad you can eat too and I do hope your symptoms don’t worsen. I have my fingers crossed 🤞 for you. There is just so much to take. Sending hugs 🤗 😘 😘
Hi Shefgirl. Go girl with the sinead O’Connor look. Hope your 17 year old checks her out.
So sorry no visitors. That must be tough. I am sure you’d really love a bit more time with your loved ones right now. Glad you are eating, even if it is white carbs. I normally hate them but am finding soft white bread much more appealing these days. And I’m eating jelly cubes. What’s happening.
I am persevering with the cold cap for the moment. Just done 2nd cycle and it’s worth it so far but I know it’s early days. Just fingers crossed 🤞
sending love and hope you are well enough to go home soon. 😘 😘 XX
Oh my lovelies. Thank you so much for all the lovely messages and wishing me a happy anniversary. It was good. Hubby and I are self isolating together so we cooked ourselves a slap up lunch. I ate really well. Managed half of it but cannot drink wine 😭
I can’t believe the hell you are going through and you are being so brave. I know there is no choice but you all post such supportive messages.
I’m feeling amazingly lucky as am on a low dose. So weekly cycles and the side effects haven’t been as severe. A bit rubbish and tired. A sore mouth and a bit of constipation but really v lucky.
I sm sending all my love to all of you and hope nothing interferes with your treatment and may all your side effects be little ones. 😘 😘 😘
Wildspur, love love love the wig 😀, mine is arriving today and post a photo.
it’s day 2 for the injection and no bone/muscle pain yet - is it too much hopeful thinking it won’t come for me? 😉
so far my main side effect is the nausea and dry mouth but I just realised I might be constipated.... sending husband to chemist for some meds 😉 and eating prunes!!!
keep safe everyone! 😘
wilsapur love the wig 💕
Know totally what you mean re children at home.My husband and I decided to take our son out on Tuesday and he has been working from home and having meetings on video call with a 5 year old running into the room dressed up singing!his work will have to get used to it!!My husband did say it has been a challenge.
i have made the descion to go home today as think it may be a bit much me staying for any longer.My mam used to her own space and how she lives if you get my meaning.
my sons cold has gone now too so that’s great.
I totally agree with you wildspur about trying to self isolate but having to go into hospital for bloods and chemo.
i asked my consultant if covid 19 would change my chemo regime but she said she is going zero face to face so she can keep well and will press on with the cycles.I do know sadly in other areas this isn’t the case.As I’f we want to prolong this any longer than necessary.
The injections we are taking about stimulate bone marrow to boost red blood cells ,giving you more protection from neutropenia and hopefully get through the 7-10 days when we at lowest.
I agree with you re mouth -I’m on high dose fluconazole and it is helping but still sore and bruising softly regularly and using gel care think it’s called.It tastes rank but it does soothe the mouth.
I wonder if the next few cycles will go quick with how busy we will be at home.I really hope so as I would love to feel somewhere near human soon.
The whole process is so long from diagnosis to end of treatment isn’t it.For me it started in November!
anyway hope everyone is ok and managing best way we can ❤️
lots of hugs,keep safe xx
Hi ladies. You have been busy! Sorry I haven't been in touch. My husband has been working from home, and we took our 6 year old out of school on Tuesday so it has been a hectic few days trying to adapt to a 'new normal'! Oh my its going to be hard (hell)!!!
I am so sorry you have been so poorly Jowels. Not what you want adding to the mix with everything that is going on with Chemo and Coronavirus. It is good that you are out and being looked after by your mum. And better to be safe than sorry by staying away from as many people as possible!
I will be self isolating as much as I can for 12 weeks - not sure how that works going to a germ ridden hospital for treatment! Going tomorrow for my PICC dressing change etc, then chemo #2 next Tuesday 24th. I wonder if they will start postponing treatment.
Ange - how did round two go? It is a strange feeling losing your hair - my pubes started going first though! I had the cold cap and I am on day 17 now - head hair falling out left right and centre. Not sure I will continue with the cold cap on my second treatment. It adds two hours to the chemo and I don't fancy sitting for 3 hours on my own. Also I don't think I will be seeing anyone for the next 3 months!!! Perfect time to have no hair.
Sally - Happy anniversary! What is your cycle - 2 week or 3 week? I hope you recover quickly from this cycle.
Juliana - I think we will be all embracing the bald look shortly! I went for a wig consultation last week and came home with a lovely bobbed number. I will put a photo on later 🙂 Hope you are feeling better. I thought the side effects of chemo would be **bleep**. But not this **bleep**! There is all sorts going on with me. Sore eyes, sore throat and mouth, constipation...the list goes on. I hope you are coping at home with the kids. How old are they? I am not sure if I can cope with trying to entertain / educate a six year old, whilst trying to do a bit of work / having treatment etc. I am going to have to have a whole different mindset going forward.
What is the injection for that a few of you are having? It hasn't been mentioned to me at all?!! Should I be having it?!
Stay strong and safe these coming weeks. It is so surreal and strange. I am usually quite a positive person, but I have an underlying anxiety regarding the virus - will I catch it, what will happen if I do, I don't want to die! Those sort of thoughts! Arrrrgghhhhh!
Salsa -happy wedding anniversary today I think you said 💜❤️
hope you have been able to enjoy ❤️And you feeling ok xx
Juliana thank you.
sorry to hear about the cold cap.we can all be Sineads together! Least you give it a try too.
I couldn’t think of anything worse more sickness. I’m hoping for my next cycle to have new meds and avoid the vomiting and rectching for 2-3 days.
i thought for next cycle when I come home I’m going straight for a nap.I didn’t last time and had zero sleep for 3 days.not an ideal start.
ive just ordered a sleep cap from beanies uk for bed looks super soft and cosy.
dont know about you all but I feel the cold in general and that’s before the hair has gone!
sending hugs 💕
Shefgirl thank you,yeah the soup went down well.Its so wierd how things taste guess not helped by thrush.Im very conscious I’ve eaten so little since my surgery really that I know I need to increase my calories.Trying little and often with high cal stuff.
with the injections I did it before bed and took paracetamol and it did help.
thats great you had your cycle 2 and first attempt at cannulation.Not sure about you but prodding around for blood or cannula in the same arm doesn’t half feel bloomin sore.Im like a colinder after hospital. I’ll be having the Sinead look shortly I think,scalp so itchy and tender.Have wig etc ready.Hope side effects are ok for you 💜
glad to hear that you are starting to feel better and trying to eat more 👍
Shefgirl, the Sinead O’Conner look will also come for me 😉
cold capping will no longer be an option for me.... I felt quite dizzy and sick during treatment (despite de cold not bothering me), ended up at GP for injections and surprisingly have managed to eat meals with little taste difference (aside from courgettes, which I normally love! They were so bitter!!!)
I just don’t think it’s worth being so sick again.... it was a very hard decision as I was told I had the perfect head for the cap, small and round 😂
have the wig coming tomorrow and just ordered some beanies, getting ready really!
I’ve started my injections today so expect pain in joints etc, I guess that’s part of the game....
love to you all 😘
so glad to hear you are managing to eat a little more today. I also found homemade chicken noodle soup really helped. I too had leg pains from the injections and also had serious back pain on the day after the injections finished - oncologist and nurse both reassured me the pains are normal and show that the bone marrow is doing it’s job and producing all those lovely white blood cells we need to fight infection 😀 Said ok to take paracetamol as long as temp normal and hot water bottle. Think someone also recommended a hot bath with Epsom salts.
Thank you Sally for your lovely message. I had 2nd chemo yesterday and cannula in first time. Whoop! Double pair of gloves, hot water bottle and being hydrated did the trick! My hospital has banned all visitors so hubby couldn’t sit with me but chatted to the nurse instead.
Straight back on the white carb diet and 8 glasses of water a day!
Am now rocking a Sinead O’Conner look as hair shedding at a fair old rate (had to explain to 17 year old who Sinead is!!) How are those of you cold capping doing? Taking a photo later with hubby to see who has the best receding hairline 🤪
Feel better everyone and keep safe xx
How we all doing?
ive managed wheetabix and toast and my lovely mam is cooking some veg and lentil soup to try.Think the injections are helping despite the leg pain.
i feel a bit brighter today after emotional day -Mam kindly cut my hair into a pixie style.Hard at the time but pleased it’s done.
hope you are all ok
sending hugs ❤️