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January 2021 Chemo Starters

donkeywoman
Member

Re: January 2021 Chemo Starters

Oh wow, @FlorrieBee what a fabulous picture! Do you have others as well? And I love the look of your mouse murderer, @Lewy2803 . And, ah, Humph in his headphones, @Pesto  - what a handsome old fella he is. We are wondering about trying to rehome a failed guide dog next, would love a labrador.

@tennisgirl so sorry that you felt your diagnosis all over again. It's difficult when it suddenly pops back up, just as we feel we are dealing with it. And the nights can seem so long.. I always make sure I have some decent radio or podcast to listen to for those lonely early hours. I guess you have a break now, before chemo starts - can you find some nice things to do to occupy your mind? I know it's hard in lockdown, but spring does seem to be on its way...

I'm feeling okay today - how is everyone else? My only real issues are eating/feeling queasy and being a bit light headed, which I presume is to do with being anaemic. As long as I take everything slowly it's okay. My heart does seem quite rapid, but I find it best to ignore it, or I make a drama which definitely doesn't help!

So great to see the sun again - I will get some time outside today and will feel safe to go a little further as hubby isn't working so will come with me.

Hope everyone's Friday is as good as it can be and that all goes well with treatment @Gelbel xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Aha! Have resized image so will try again. Beautiful sunshine here this morning, fingers crossed for  a little walk later, hope some of you also manage to get out xx

20210226_082607.jpg

donkeywoman
Member

Re: January 2021 Chemo Starters

Morning @FlorrieBee , would love to see a picture of your diva! I couldn't attach pictures on my laptop as it said they were too big, but it worked fine from my phone..

I agree, the animals are a godsend,  particularly at these difficult times. Even though Jasper (dog) is challenging in many ways, he is also such a loyal and loving little fella... and having to give him attention, food, exercise etc is great for getting me off the sofa!

Hope everyone is feeling ok this morning and can enjoy a bit of sunshine today. Chilly and bright here xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Picture didn't work so I'll have another go.  Happy Friday everyone, hope today is an ok one for you all xx

Edit, I can't get it to attach, will have a go later on my laptop instead xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Aaah just having a quick look through and loving the photos, please keep those coming everyone, they've really made me smile 😃 How cute are your donkeys, won't let me tag again donkeywoman and I love lewys rescue dog, looks full of character.  Some of the most wonderful dogs we have had over the years have been the rescues. I think any pet can provide such comfort, especially in our time of need, they are very intuitive 😍 Thought I'd try and add a pic of one our mad hatters, she's a dream girl at home but a proper diva to take out 🙈

 

tennisgirl
Member

Re: January 2021 Chemo Starters

Thanks so much for asking Donkeywoman.

For some reason yesterday I felt like I hot my diagnosis all over again when chemo etc was confirmed even I half expected it. I didn’t fall asleep until 4am as my mind would not switch off, thinking about teeth and all sorts.

Hope you are feeling ok today?

Pesto
Member

Re: January 2021 Chemo Starters

@Lewy2803 and @donkeywoman and everyone else, too many to tag 

 

good evening, for some reason i could not edit my reply, Toby looks amazing just what we need in these turbulent times and the Donkeys...  Frizz and the one with the scratch, so sorry forgot his name are so cute.  They must put a smile on your face every time you go don to give the a carrot 

 

And the dogs.....  sorry again forgot their names....  we need them to keep us on our toes as they say.  Humph certainly knows I am very poorly, he reacts daily as opposed to the family.  Sometimes he never leaves my side and when I go to bed so does he.  I can be up several times in the night, normally just for a little one.  Anything more and he is there.  If I go downstairs even though he is old he struggles and follows.

 

My family are my rock but without Humph I have no idea where I would be now.

 

Sleep tight all, big hugs

 

Gilly 

 

XXX

Pesto
Member

Re: January 2021 Chemo Starters

HumphreyHumphrey

This is my darling pooch, who went for a bl**dy manicure today....  We can't go, Spit !!!!!

 

Grandson was playing the drums.  As always he got the first option of ear defenders.....  we all suffered in a very nice way.  Humph was so curmudgeon, he was actually awake, just like me he sleeps alot

 

Big hugs all

Lewy2803
Member

Re: January 2021 Chemo Starters

Looks like you live in an amazing place @donkeywoman - that view ❤️❤️

where would we be without our furry friends eh? Here’s Toby my devil rescue cat!! He’s a good mouser but other than that we only see him when he wants feeding or when he he torments Luna!

Lewy2803_0-1614276943477.jpeg

 

donkeywoman
Member

Re: January 2021 Chemo Starters

IMG-20200920-WA0010.jpg

 here are the donkeys! Mac on left and Frizz..... just to add to @Lewy2803 's gorgeous dogs xx

donkeywoman
Member

Re: January 2021 Chemo Starters

@tennisgirl - just wondering how you are feeling today? 

donkeywoman
Member

Re: January 2021 Chemo Starters

Afternoon all,

Well done @Gelbel lots of progress on your hair. Gosh,  your Thursday routines sound exhausting! I'm impressed ... I guess the wigs will get more settled and familiar? All the best for tomorrow, hope all goes smoothly and then there is another one ticked off. 

I have no words for the cricket... you did right @Pesto !

@Lewy2803 ah, lovely stories about your dogs, especially the rescue chappie, lucky him to have found you. We have a 12 year old rescue dog too - he's been a nightmare (agressive, unpredictable, the list could go on) but is also strangely adorable... Life is much better in the countryside than in the city! Any luck with your team about the abdo pain? 

@Belinda_F hope you are now having a few days of rest - maybe some days off cancer? xx

Gelbel
Member

Re: January 2021 Chemo Starters

Well it's done. Not totally - got a grade 4. My hairdresser juzzed up my wigs too. The blue one now looks stunning as she layered it, the awful NHS freebie is wearable for work... but I've kept her on as I've my usual Thursday night girls' video call and if I take Wendy the Work Wig off, I'll need to wash my hair. Given I've already showered, done my usual Thursday deep clean of the bathroom and I have slap on that's out of the question. It can wait til tomorrow.

We discovered I have a double crown, though hubby predicted it as he had a double yoker for breakfast - not had one for years.

I've walked Wendy to the bin a few times #brave but will pass on the walks my pals have offered as she's is not a going out wig. Plus in this wind you'll see the joins - it's truly dire.

Just how many wickets did I miss having that done? Mmm. 🤔 Be a laugh if we actually won this. 🤣

That's me done on here until after EC #2 tomorrow.

Take care.

Love AnGELa x

Pesto
Member

Re: January 2021 Chemo Starters

Cricket just been turned on....  and  OFF.  

Lewy2803
Member

Re: January 2021 Chemo Starters

Luna is the 2 year old border collie. She’s a Northern lass from a working farm near Durham. Robbie my old boy is a rescue. He’s 12 now. Came from the kill pounds in Ireland. He is a Kelpie cross (border collie/westie!). We had him dna tested lol! He’s the best dog anyone could ever wish for. Luna is a bit of a cow bag but we love her!!

thanks for advice re the pooing pains! Definitely not kidneys, much higher. I actually wonder if it’s all connected Toni digestion. But will mention to the team and see what they say. Right ... cricket is on and I have a meeting with my boss to talk through doing a few hours around my next cycle. Take care all xx

donkeywoman
Member

Re: January 2021 Chemo Starters

Morning all,

@Lewy2803 glad you had a good rest and hopefully you are over this cycle's worst. Your dogs look absolutely gorgeous - names please? A collie and a lurcher cross? Or am I totally out there? 

Re your pain - it's not one I recognise. I sometimes get a bit of discomfort around my side, but always assume that is to do with bowel cramps. But yours is around the back - does it feel like muscle or bone pain? or something else. I personally think it would be best to mention it to the team - a quick phone call won't hurt. I can't think of anything worrying it might be - but worth a mention. It's not around the lower back is it - ie where your kidneys are? I'm just speculating now -  I would give them a call and try to have ready the kind of pain it is, when it comes on, when it goes off (eg is it relieved by having a poo or a fart?) etc. 

By the way @Belinda_F Mac (donkey) probably rubbed himself and that is how he got the scratch. He's an itchy boy, but he also lives with hormonal Frizz who does tend to shove him about a bit! The wound itself isn't worrying, but it's just that he might make it worse by rubbing more and there is the risk of infection. We are on it! Also, well done you on getting your much needed week off. Don't know why  your team were so difficult about it - I think some health professionals (not me of course!) don't like it when patients take charge. Which is very annoying, as who actually knows how we feel?? 

Hope everyone is starting the day as well as possible? I slept a bit more last night and even had a long and convoluted dream.. Now to brace myself for the cricket... xx

Lewy2803
Member

Re: January 2021 Chemo Starters

Hi everyone

I think I’m getting through the fog! Slept much better last night. Thought I was going to have a waterworks flare up so covered myself in canesten cream and,touchwood, think I’m ok this morning. Am experiencing a weird thing though and I would like to know if anyone else had the same. Also DW would appreciate a nurses view as to whether I should mention to the team. When I have a bowel movement (for last couple of days) I get a pain in my back like at the back of my rib cage. It’s a sharp pain but guess I’m hypersensitive to anything due to the Herceptin. Any thoughts? 

sorry you have joined this group @tennis girl. I think we have exchanged comments on another forum. The only advice I would give in addition to everyone else is to keep a daily diary of how you are feeling. I had a gruesome round one and have found referring back really helpful and helped me realise round 2 wasn’t as bad. Honestly it is not going to be a nice journey but breaking it down day by day helps me. I know that days 4-9 are my worst. Today is day 8 so I know the end is in sight. 
I have a PICC line which I am so grateful for. Just speeds everything up. I’m also cold capping. I’m having docitaxil which is renowned for being harsh on the hair. I have lost loads on the top but fringe and sides bearing up. Wondering now whether to not use the cap on treatment 3. Need to do some research as to whether it helps with hair re growth. I was never a hat person but have naturally gone down the beanie route now which I am comfortable with. I also got a really good nhs wig but don’t need that yet. 
Hope you all have good days today. I attach a photo of my two babies to cheer you up. 

Lewy2803_0-1614240146251.jpeg

 

 

FlorrieBee
Member

Re: January 2021 Chemo Starters

Know what you mean as I have a big head! Always struggled with hats etc. If it's any use I ordered a couple of cotton sleep caps/beanies from Amazon that are decent. They are very soft and lightweight, comfortable and loads of colour options and plenty of room so they don't feel tight 

The headbands with hair are a great idea. I think it's all a bit of trial and error and you will find something you are comfortable with.

Best of luck with your hairdresser tomorrow,  definitely sounds like she has the right idea and will be taking it step by step so you can decide as you go along 😊 xx

Pesto
Member

Re: January 2021 Chemo Starters

@Gelbel 

 

Hi

 

Sorry daughter has not been able to sue anything out yet for you, but she is like a bloodhound....  still on the job.

 

Edited, just seen your excellent news, I will tell her in the morning.

 

The cricket....That is being very generous....  slow, boring and awful. Though we still ahead just.  I reckon the ball change was not to our advantage, even the colour is off putting.

 

keep your pecker up, tomorrow is another day.

 

Talking of which, the blooming pooch Humphrey has got his manicure.  We can't go but he can.  Waiting for the tail wag when he returns with the comment look at me..  better than you etc.....And a big grin across his sloppy chops.  He hasn't chosen the colour yet, no doubt he will given many options tomorrow !

 

Big hugs 

Gilly

XXX

 

XXX

Gelbel
Member

Re: January 2021 Chemo Starters

One last thing - how did I forget (well we all know why) - Covid jab at GP's on Saturday 6 March.

Gelbel
Member

Re: January 2021 Chemo Starters

Hi @tennisgirl 

Sorry that you find yourself here and needing chemo. I can't describe how this little gang of wonder women just 'get it' whether it's on a blurgh or good day. I've had many more of the later as I've 'only' had whooziness like your worst ever jet lag and that downwards, far away feeling when the world is spinning in bed after a massive night out. Not that I was actually giddy. One day was partially bad as I felt unsafe stood up. I did pop the occasional anti-nausea tablet if I felt a tiny bit sick. No tummy troubles. I've only had one cycle of EC so it's early days for me - at clinic yesterday, I was told cycle 2 likely to be the same. Though I'm now getting my first Biphosphanate dose too.

TBH virtual all side effects can be managed - you just need to speak to your team. It might be the first cycle you have to muddle through if your side effect aren't awful. Meds can be adjusted for the next one - and I find the phrase 'not acceptable to me' useful at times if you get push back. I've not had to use this once since my referral in December - it worked a treat for gynae problems!

I'm losing my hair now. I passed on the cold cap. I thought I'd be OK about. I'm not. I now realise I only thought of the permanent 'perfect' wig hair not the practicality of it. Unless I wear a wig out all the time (even putting something in the outside bins) I'll be advertising the fact I'm having chemo. Take your time to think/chat this through.

That's my two pence worth. We'll support you every step of the way.

@donkeywoman I just don't do hats, bands, anything. Only at weddings. I've a big head so stuff like alice bands etc. are tight and I don't feel the cold so there's no need for hats. Having said that, I did pop a beanie on this afternoon and, with some slap on, it looked OK. My hairdresser is bringing her clippers and I get the impression she'll go number by number to a length we both agree on. I've ordered a headband with a short blonde bob coming out the back and a band with a fringe for under headgear. Both very stretchy!

Bless my girlfriends, one's offered a side door drop off of something trivial for a chat and another a little walk round the block as if we were off to the park for exercise in the dark - both so I can try out a wig outside. My bestie has offered to drive over from the wrong end of the M62 to drop me off/pick me up on Friday. That's been declined - hubby's doing that and there's too much time for me to be on my own for a first outing. I'll beanie it.

Sorry to go on. I really didn't anticipate how much this would affect me.

Still, it can't be as depressing as the cricket!

I hope you all sleep well. 

Love AnGELa x

Pesto
Member

Re: January 2021 Chemo Starters

@tennisgirl 

 

A huge welcome, sorry to meet under these circumstances though.

 

You are certainly in the right place for a chat, vent anger, support and a whole lot of love.  We all have good days, bad days and in-between days and the guys on here are brilliant with their common sense, the offer of cooking, sharing treats and probably the most important humour.  Even when things things seem so black some one will reply and I guarantee a smile on your face.  

 

Most important of all, let it all hang out here, no one will judge and the feeling of relief when it is written down is like a lump of lead being taken off a shoulder.

Re chemo, I might be the odd one out as I have oral tablets at home 21 days on 7 off and then start again.

 

Remember you are now amongst friends and they are 100 % with you on your journey.

 

Big hugs

 

Gilly

 

XXXX

FlorrieBee
Member

Re: January 2021 Chemo Starters

The Fluconazole worked well last time so fingers crossed it will again. Just feels a bit like having a mouth full of ulcers. I did have some difflam spray until I left it out on the worktop last night and our one naughty dogs decided it would be a good thing to chew up! Goodness knows what he made of the taste! Something else I was given last time was Gelclair, for those of you with sore mouths it's worth a go as it does sooth everything for a while. 

Sorry to hear of a newbie joining the chemo club. It's rubbish but this support group is an amazing source of comfort, advice and a place to vent with others going through the same thing.

As everyone says, everyone reacts differently. What I would say though is your team will want any side affects to be manageable, if you are likely to feel sick ask for plenty of anti sickness meds as there are quite a lot  and they can be taken in conjunction with each other.  With additional meds and a change of dose, my round 2 was quite different to round 1 , so now I think round 3 will be doable! Take it a step at a time and you will get through, we all will! 😊

Hugs all round xx

Belinda_F
Member

Re: January 2021 Chemo Starters

hello guys... so so pleased many of you are feeling more yourselves! that's great!!! and feels quick no? within a week...that's truly wonderful... although sorry your mouth sore @FlorrieBee - mine too still actually. are they antibiotics you're taking? I seem to be the cause of my sore mouth, I keep trying to eat crisps and I just can't... hurts for days after... I do hope it gets better soon and your energy improves.... 

and @donkeywoman brill you're feeling better!!! pizza, cricket, lovely hubby, donkeys, hens and woo-hoo!!!! I meant to ask, why did your donkey have a scratch? is it better? 

@Gelbel the video sounds brill, what a relief to totally hone and own the wig and looking super glam to boot. way to go you!!!!! 

@tennisgirl I'm so sorry to hear your news, welcome to our little chemo club that no-one wants to be a member of, but thank god we've got each other. I don't know much about Onco scores, not had mine done... but your tumor was tiny wasn't it? and not her2? can only go with their advice of course... and it's better to be super cautious, belt, braces, get it all done and dealt with now, but it's a shock isn't it... you'll see if you read back, we're all different in our experiences of chemo, but for me, it's not been as bad as anticipated... been extremely tired, and taken a lot of anti sickness meds...had some tummy problems, sleep problems etc but it lifts after a few days, and some semblance of normality returns... so it's really variable... the others will share their experiences I know. if you're needle phobic, would you consider a port? I've got one and it saves a canular being used every time... which I'll not miss for sure... will you cold cap? and what protocol are you doing? EC? how often? we're here for you anyway, you know that. big big hugs. 

just quick update, my day OK, stressful.. very tired as couldn't sleep... had my first day time nap yesterday in weeks as the toxins left my body and allowed a Kip, but then of course, ruined me last night. had consult today.. they weren't keen on any delay! but stood my ground, and then got really worried the week off might impact efficacy so called the nurses and they spoke to the top guy! all eventually agreed that I needed the week off, that efficacy wouldn't be compromised at all... so relieved and hoping my mood will now improve enough to relax for a few days and just enjoy the break... at hospital 3 days in a row next week so I'll make the most. 

guys, have you heard of a nasal spray called Taffix? it's proven to prevent covid, just thinking of those not had vaccine... worth looking into? 

as ever, I'm thinking of you all, have lovely restful evenings, try to eat, put your feet up, big big hugs Xx 

donkeywoman
Member

Re: January 2021 Chemo Starters

Ps standing for election will keep your mind off it all, anyway!

donkeywoman
Member

Re: January 2021 Chemo Starters

@FlorrieBee sorry your mouth is sore - hopefully the Fluconazole will work quickly, it did on me last time. Have you got some Difflam mouthwash too? Tastes horrible, but I think it's quite good. I'm trying not to push myself too hard about going out - I can kind of feel when it's the right thing for me. Hopefully you will feel like it tomorrow, but if not, there must be other box sets! 

@tennisgirl sorry you have to have chemo, but I guess they are doing the 'belt and braces' approach which is good for the future. But I get that you feel gloomy about it. It was my dread and, while I'm not going to pretend it's easy as it really isn't, there is a lot of support and hopefully your team will look after you well. I think if you look back over these threads (and I sometimes have a sneaky look at others too) you will get an idea of how it can be. But as you say, we are all different and you won't get all the side effects that are mentioned. And it is different with different meds, so best to talk with your team about what to expect (if you want to). I found it helpful to talk with a couple of friends who have been through chemo, but they were both happy for me to ask questions, they didn't bombard me with information or opinions, which I would have found difficult. In terms of the needle, I must admit that I'm not particularly troubled by needles (as long as I don't look!) and mine haven't been a problem. Having a cannula put in is just like having a blood test done. And it may be that you will have a picc line or a port - they will tell you about this at some point (I have a cannula each time but only because they Picc line didn't want to go in...). It's fine to tell the team how anxious you are, you won't be the only one by any means. I think the hardest bit is the waiting, as ever. I just couldn't get my head round how long it was going to go on for, and couldn't imagine how I would cope. But I have just had my 4th of 6 treatments and, while I still wonder how I will get to the end, it has actually gone quite quickly in some ways. I don't have advice for you of course, you will get through it in your own way. I will just say that I find this forum a little sanctuary. When I am struggling to explain to those close to me how I feel, I can come on here and know that folk will just 'get it'. All the best and do post your worries and concerns, won't you xx

tennisgirl
Member

Re: January 2021 Chemo Starters

Hi all

So today I was told i will need preventative chemotherapy, starting in 4-5 weeks. I was prepping myself for it but still a shock and will need radiotherapy and tabs too. I was a 29 on the Oncotype test and being 45 and possibly peri menopausal, chemo it is.

I have the usual fears as everyone else - losing my hair, nausea (I was really sick after surgery) and my biggest fear is needles. Am I right in thinking sessions are usually about 5 hours? Are you really aware at the time that the needle is in etc? From your own experiences how bad were you after each session and how were you in between?

I respect everyone is different journey wise but would like to hear your views. 

I am a total wuss by the way!! I am also running for public election in May so it will be a fun few months 😄

FlorrieBee
Member

Re: January 2021 Chemo Starters

So pleased you are feeling a little more normal today, so good to get past the really tough days! 

I'm doing ok but pretty sore mouth so today I am back on Fluconazole. Tired again today so haven't got out, will have to tomorrow. 

Not letting me tag anyone but Belinda, brilliant news re reduction,  that's a massive positive to go forward with.

And Gelbel, hair is a very personal thing but as it happens I got the clippers out to my hair this  morning. I have gone from very long but have done it in stages, which I have found easier. It was a sort of pixie but a combo of wisps and bald patches and it actually feels better now I've taken it off. The clippers were on a number9 so no more than 1cm left. It's still a shock but to me feels better and I'm happy to do beanies etc. Not sure when I will be brave enough for the wig.

I am not in to the cricket but really looking forward to the rugby at the weekend.  Have finished Firefly Lane on Netflix, loved it, so could do with another binge watch now 🤣

Hope you all have an easy, relaxed evening and doing ok xx

donkeywoman
Member

Re: January 2021 Chemo Starters

Afternoon all, 

Well, in spite of it all, I'm enjoying the cricket! 

@Gelbel well done you on the video call - sounds like a good confidence booster and no need for them not to be honest. Sounds like you were looking gooood. But oh how difficult to decide about your hair now - would you take advice from the hairdresser? So I'm thinking you are not into wearing beanies then? I just live in mine, but then I don't really go anywhere except the hospital. And I don't really care how I look there. I did think there might have been some sympathetic glances when I went for my blood test last week, but I'll take the sympathy! But I'm not trivialising it - if it feels horrible, then it is horrible.... Hope you come to a place you feel at ease. 

Oh, it is so nice to feel more like me again - @Lewy2803 and @FlorrieBee I really hope you are both feeling better too? Bowels have recovered! But don't worry, I won't go into too much detail... And I've finished the course of magnesium sachets, which is one less med to get down me. It says you  mustn't have them within 2 hours fluoride, so I wasn't sure if I could clean  my teeth, use mouthwash or not... How I just have to decide whether to start the Fluconazole or not. I asked to have it in case I got thrush again, but I'm just not sure - slightly furry back of tongue, but not the redness or as much tingling at the front as last time... Think I will wait til tomorrow. But today, I've had time with the hens, dog and donkeys and even had some chat with my lovely mother in law. And hubby and I have watched some cricket together (in between his work). I still don't like eating, but feel really empty. But I've got another pizza cooked, topped with as many veg as I could fit on, so I'm eating little bits of that at a time. 

@Belinda_F wonder how you got on with the oncologist - really hope they were sensitive with you and recognised your need for a week off. 

And hope everyone else is doing okay today? xx

Gelbel
Member

Re: January 2021 Chemo Starters

Glad to hear you are more alert @donkeywoman I can't wait for lockdown to be over. My husband has had to shield since last year so we've been totally careful the whole time. I did go out with my girlfriends for drinks a few times in the summer - we were all very well-behaved and stuck rigidly to the rules. We tend to go out early when there are hardly any other people around.

Can't wait to see a rugby match. My team have a mini-tournament planned from mid-May.

@Belinda_F - fab news about the reduction and well done you for fighting your corner and demanding a break.

@Lewy2803 - hope you continue to improve.

One of my consultant's team has just called. My vitamin D levels are up - 49, just 1 shy of the preferred 50. Whatever those numbers are. So I am having my first bisphosphonate infusion on Friday along side EC. Like a dummy I forgot to ask about side effects, I'm assuming it will be Zoledronic acid, so that's me with flu-like symptoms this weekend - had so better not interfere with the cricket and rugby. I'll be given calcium and vit D to take at home.

On the brighter side, I had a 'help a damsel in distress' call with my workmates earlier to check I wouldn't look toooooo strange in my new wig and makeup look at the interviews I had this am. Had a video call with people I don’t know, acquaintances and a friend – none of who know about me. So I'd trust them to be honest in a nice way. Well, even I was happy with the screenshot sent! They said it looked like I'd just done my hair with a good dose of GHDs but nothing said wig at all. 😎

Hairdresser is coming tomorrow - originally for a severe pixie. My hair is now falling out by the handful so I am thinking of braving the shave. Thing is, it gives me less than 24 hrs to get used to it and work out strategies for what to do if I don't wear a wig out before my chemo. Not brave enough to wear a wig out on my own (need to be with someone for the first outing) and it's mighty windy up here at the moment. 😉

Let's not mention the cricket!

I hope you have relaxing Wednesday afternoons.

Love
AnGELa x

donkeywoman
Member

Re: January 2021 Chemo Starters

Just had a read back, now that I'm a bit more alert. Re end of lockdown... I feel a bit torn. I'm so excited at the idea of gettting a life back, but then remember that I/we will be vulnerable for a while yet. I'm so lucky as I live out in the middle of nowhere, so can only get to appointments (not that I have many) in the car and we hardly see anyone. It must be particularly tricky for the Londoners  anyone in big cities, where public transport is the obvious way to go. @Belinda_F did you get anywhere with the idea of a volunteer driver? Though that is a bit complex too. I don't think I'd fancy driving back from chemo - don't you feel sleepy? Maybe with the weekly ones you don't get the same premeds? 

Aargh, it's all so complicated! I do want the return to life - especially for the younger folk, but also dread catching covid now - at the 11th hour. And so tricky for you with children at home, working out what is best. Think I'll try and ignore it all and stare at the hills... night night

donkeywoman
Member

Re: January 2021 Chemo Starters

@Belinda_F thanks for your kind words. I think I'm feeling a little bit brighter - managed to watch a bit of TV with hubby and just come back to bed - that's quite good for me! I'm hoping tomorrow will be easier - for all of us. And if it's not, at least there is cricket to watch for most of the day.

Oh, how annoying that you had to argue to have a week off - as if you don't know what is best for your wellbeing. Good for you for standing your ground, hope the oncologist is helpful tomorrow - on the phone or face to face? I do all my appointments on the phone which probably is fine in some ways, but sometimes I think I'd like to eyeball the person. It's tricky isn't it, when you don't agree. I wanted a dose reduction last time but was offered a week off, which I didn't want! I am absolutely sure that if I was on 2 weekly cycles like you, I would be demanding weeks off, as you are just feeling better when it starts again. Let us know how you get on, when you feel like it.

Hope everyone is doing okay this evening - it really is hard when we are in the middle of it all, isn't it. But so lovely that we have this space and it does remind me that it will get better - it really will.... xx

Belinda_F
Member

Re: January 2021 Chemo Starters

oh guys, I'm so sorry so many of you are feeling horrendous today/this week... the strength it takes to get thru this is super woman-like I feel... the endurance and horrendous impact on our well-being... it's awful isn't it, just awful. in these hardest of days, try to remember, it will pass, things will change, we will feel well again... in the next few days... head down, sleep, rest. thinking of you all. 

my trip to hospital fine, it's reduced again. it's changed shape so not so easy to compare measurements, it's flattened which is good, but moving in right direction... a relief. I'm a little grumpy as I'd asked for a week off before next treatment lot and they wanted me to not have a break, so I had to put my foot down, which I find quite stressful... it's only a week, makes no difference to outcome and the world of difference to my mental health but I really don't like having to battle... got enough to deal with. anyway, I've told them that's how it is so... talking to oncologist in morning. 

big big hugs guys, thinking of you all x

 

 

donkeywoman
Member

Re: January 2021 Chemo Starters

Hi all,

@Gelbel that sounds a great consultation all round and well done you on your super positive outlook! @Lewy2803 glad you are feeling a bit better, hope the roses helped. We are allowed to feel fed up, aren't we? I've spent the day going from the sofa to the bed (plus 10 minutes out with the dog), not being able to decide where I am better off. At least the stairs are a bit of exercise! I'm trying to just go with it, no point in fighting at this point. A couple of lovely friends sent me some Jennifer Young products (including scalp balm) which gave me a bit of a lift, at least enough to send them a thank you message..

@Belinda_F hoping your scan went okay - you probably don't get the results yet, do you... 

@FlorrieBee hope your daughter has felt a bit better as the day has gone on. It must be so hard to see them struggle and know that there is only so much you can do to help. But this will pass and she will get back to her friends... 

That's me - one of the donkeys has a scratch on his face - hubby has been describing it to me and I don't even feel any urge to go and look. That is a real sign of how I am feeling... 

Hope everyone's evenings are peaceful xx

Gelbel
Member

Re: January 2021 Chemo Starters

🤞🍀 for your scan @Belinda_F 

@Lewy2803 @donkeywoman @Mumboo so sorry to hear you're still in the dark of the forest hoping to retreat to the safety and peace of a meadow or beach or whatever your happy place is.

You ladies are wonder women supporting your children too - even without the trauma of lockdown etc.

I feel so much happier. I gave myself a kick up the bum when I woke up. Just as well it was before a hairbrush full of hair. 😉 I went to my appointment with make-up on. 11 October was the last time I wore it. My eyelashes are holding up! 

Dunno what I was expecting at my appointment. I think I had visions of someone with a clip board just bombarding me with on a scale of 1-10 for side effects. The nurse practitioner was so lovely - just happy to chat about my chemo experience, asked me a few Qs if I didn't mention a side effect and answer the few questions I had. I find they cover most stuff in their questioning and what's happening next.

My Vitamin D level is low... so's everyone's thank to not going out in the weather we've had. My GPs was meant to prescribe some for me. As they haven't, I'll get some on Friday with cycle 2. I say hurrah because, she expected my C2 side effects to be very similar to C1, which means C3 will be too and that's when the Biphosphanate should start. I hope I'm not too much of an exception. I can do feeling jet lagged to hell for a few days.

She's loving my veins! And I got my bloods done so no hanging around on Friday.

I just missed the hospital's policy of automatically doing covid jabs for new chemo starters ahead of 1st cycle. So they can't do it. However, she got a consultant to come in for a chat and reassurance me that days 8 or 15 will be OK for my jab. They are aware some GPs in the area are only doing vaccines 1 day a week... Murphy's Law says mine is Friday /chemo day. They're telling people to get it done ASAP rather than delaying for 'a better day'.

So, let me get booked in... and wash the slap off. Going to video call test the wig tomorrow - got a couple of interviewing some journalists students for a social media internship. So a safe environment to do it - especially with an uploaded background.

Nearly cricket time!

I hope you enjoy the rest of your days.

Love AnGELa x

Gelbel
Member

Re: January 2021 Chemo Starters

Hi @Lewy2803 

I dream of weeing every couple of hours. For me it's at least once an hour - not at night thank goodness. 

I am getting 2.5-3l down me every day. It tends to be chugging 400ml at a time or I just can't do it. I probably have 1.3-1.7 in (mostly) teas or coffee, which is sipped. Coffee goes straight to my bladder - chemo clinic in a bit so just had decaf today, I'll still be weeing for England. I tell you, if it was an Olympic sport I'm a shoe-in for gold.

Probably me age too. Only signs I've had of menopause is when I gotta go, I gotta go.

I'll save the rest of your prolific posting for any hanging around I have at hospital. And update you later.

Love and hugs

Angela x 

Lewy2803
Member

Re: January 2021 Chemo Starters

I'm doing ok - sorry was feeling sorry for myself this morning. Have had a shower and have written my diary, on the whole everything seems slightly better than last cycle. Like you DW i am rarely constipated so dont want to take anything,  it was Day 7 last cycle that I got the awful trots so really want to avoid that this time. just gonna grit my teeth and get through the next couple of days. @Mumboo hope your day improves, I think we are both on day 6 of cycle 2 arent we?

Thanks everyone else for your kind words, I am taking the anti sickness meds so am doing everything i should be. The metal mouth is unbearable - can only drink milk but surely that's got to be a good drink to have? Try to have good days everyone xx

donkeywoman
Member

Re: January 2021 Chemo Starters

Hello all

@Belinda_F fingers crossed for good news from the scan - and enjoy a bit of time out! @Mumboo so sorry to hear your daughter fed up and struggling, it's so tough for them... 

@Lewy2803 I think I'm feeling similar to you. I'm day 5 and just started the injections. I'm constipated too and feel horrible - light headed, queasy but empty (have managed porridge and a cup a soup). Don't know what to do with myself! I've managed to get dressed, but may need to go back and lie down shortly. Re the constipation - it's so alien to me, that I can't decide whether to take something or not. I've got senna, but did actually go yesterday, so didn't take it overnight... maybe a mistake. I'm sure part of the problem is that I get a bit obsessed! I'm much more prone to going the other way, so this just feels weird. Think I'll go back and lie down for a bit and then try to get outside. Ugh, so boring. But it will pass, for all of us. Just need to get through the next few days and then things WILL get better. 

All the best everyone - hope  your days are as good as they can be. I may make it back on later... xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

Sending positive vibes for a good scan result!

Very difficult for youngsters, I sort of think the younger they are the more resilient but unfortunately for ours, my one finishes his 2 year course in May so it potentially means not returning at all and seeing it through from home. So hard for them.

Good luck today xx

Belinda_F
Member

Re: January 2021 Chemo Starters

that's so hard @FlorrieBee and @Mumboo dealing with the kids going back to school/college, or not... so hard... your girls are being incredibly brave Andrea... do they do lots of online contact with their friends? and I'm so sorry you're friend is moving...  it really is the hard edge of cancer treatment isn't it, dealing with children and impact on them... and how old is your lad @FlorrieBee ? what are your thoughts on college or not? 

I really don't know how it'll cope with lockdown lifting... I'm 2 months down out of 5 months chemo. just finished my EC part so scan today is to look at tumor, see if it's further shrunk... it had last time so I can only hope... then week after next, I think, start on taxol weekly... so weekly tube trips.. might have to think about driving....hoping I'll get worst done before lockdown eases but you know what people are like... Johnson said not governed by dates last night then reeled off myriad dates, so now people will just ease on those regardless.... ho hum... 

guys I'm so sorry many of you are in the thick of horrible... you're in my thoughts. cricket tomorrow!!!! one silver lining x

FlorrieBee
Member

Re: January 2021 Chemo Starters

Thinking of you today, good to get a little ride out in the sun but also best of luck with the scan! Does that mean you are half way through treatment and they are checking on progress? Xx

FlorrieBee
Member

Re: January 2021 Chemo Starters

I'm with you on the sleep thing, I must have got up 5 times in the night for a wee, but I did relax in between and dose back off. It seems everyone must get given different regimes. I get given 5 days of steroids and injections to start the day after chemo so by day 6 I'm all done and pleased to see the back of them! Round two has been better for me Re sickness etc but still taking anti nausea meds if I need to. I absolutely crashed yesterday, just needed to sleep on and off, rubbish, and now have the return of the sore mouth so think I will probably have to put a call in today.

@Lewy2803 have you tried senna tablets? Could help get things moving? I hadn't realised that three of the meds im on from day 1 of chemo all cause constipation, plus codeine for headaches is renowned for it! Next time I will be asking about something preventative!

Do hope I'm up for a little walk later, it is so good to get out when possible. 

Agree with you all, lifting of restrictions is scary, now wondering what to to about our youngest going back to college, or not? 🙈

Hope today brings a better day for you all. I must try and fish out a poem my mum saved for me, it was really lovely and so true, think it's about taking little steps and we'll all get there. I keep reminding myself I am one third done with chemo, next round means half way!

Oh by the way, I've not caught up properly on the hair thing, but I've had very long hair since forever. I couldn't do the cold cap because of headaches and I'm currently sporting a short mix of wisps and bald patches. But for now I just put a pretty cotton headband on and it sort of softens the look. Think I will have to clip it all in the next few days but have got a few beanies and soft cotton headscarves, all inexpensive from Amazon and eBay, so will stick with those. Will be interesting to see if I feel the need for one of my cheap wigs if i actually have to go out for an appointment. They look fine, not sure how comfortable they will be. 

We are stronger than we know and although it doesn't always feel like it, I bet we are all doing a great job of working through this the best we can. Thank goodness it seems most of us are blessed with amazing friends and family 🥰 Hugs to you all xx

Belinda_F
Member

Re: January 2021 Chemo Starters

morning all, @Lewy2803 I feel your pain... I literally needed to wee every half hour it seemed.! massive pain in the night... compounded by horrendously dry horrible tasting mouth so drinking constantly too...those injections have a lot to answer for I say, I HATE them (never say hate, but I really do).... but last day did you say?  I got confused last week and thought I'd reached my last day before I had... I seriously considered just not doing the last one as so desperate to get rid of their toxicity... but then reminded myself not to be so silly... we need them, side effects and all 😢

I'm so sorry you're having a hard time tho, are sickness pills not working? with your tummy, are you taking senna or anything? the ondesetron ~ I had to stop taking due to constipation, it was too much, rather feel sick, almost... but I prepared my bowel anyway... also took docusate. have you got anything? I think the back up can make up feel seriously additionally worse as not clearing out toxins... can hubby get you something to help? it sounds like you're getting out, go you. 

you're all on day 5/6 post treatmenters are you? just remember, it'll lift soon!!! you're nearly there guys!!! 

how are you doing @Mumboo 

@donkeywoman @Florriebee 

@Erin1947 @gelbel ?

@leianajones ~ I hope you're OK? being quiet... working and doing well I hope... not poorly and low. thinking of you x... and when is your next treatment @Pesto ?

I'm off to hospital today for scan. sunny out so that's nice. the warmth on my face will be a rare treat. 

big hugs guys x

 

Mumboo
Member

Re: January 2021 Chemo Starters

Feeling the same as you today @Lewy2803. Been awake since 5am. Can't sleep but tired. Not hungry, but need food. Just bleurghhhhhh!

I'm snacking on chopped apricots (pre-chopped! How lazy!!), or an apple or a biscuit... Not meals as such, just something to taste. The other day i had chocolate weetabix with warm milk & a sprinkling of sugar. Lush!! 

Struggled this morning with my eldest. She didn't want to do online registration. Lots of tears. The root of it was the fact that all her friends will be going back to school in 2 weeks & she won't be. Made me so unbearably sad. It will be until the end of April & that's such a long time for them. Just so sad for what they are having to cope with. On top of everything else, her best friend lives next door but they are moving house on Friday. I'm really good friends with the Mum too. She's been amazing throughout all this BC rubbish. We were always in & out of each others house, but we haven't been in since beginning of Jan & we won't be able to visit their new house for ages either. We're just a bit sad today i guess. Sorry. Bloody covid rubbish. 

On the positive side.. The sun is shining already today so Spring is definitely on it's way. Onwards & upwards. 🌞

X

Lewy2803
Member

Re: January 2021 Chemo Starters

Am a bit fed up. Can’t get comfy. Just want to throw a toddler tantrum and hope someone can come along and make me feel better. I feel sick. Don’t fancy anything to eat or drink yet am really hungry and thirsty. Sitting on the loo again hoping something will happen but knowing it probably won’t! 
BUT .... going to make myself eat and drink, then I’m going to have a shower, then I might have a wander in the garden. Mum bought me some David Austin roses for my bday last year and we dug a new rose garden in November. 3 climbers and 3 shrubs and they are all shooting so am looking forward to  seeing how they are doing. Our church is about half mile walk and am thinking I might try that today as the snowdrops and daffs are out. Looking forward to cricket starting tomorrow and also tomorrow is last day of injections so hopefully start to feel a bit better then. 
does anyone else have need to wee every couple of hours? Am sure it’s the injections - really interferes with sleep tho. For all of you my lovely friends, grit your teeth, find that resilience. You are not alone and we will get through this together xxx

Pesto
Member

Re: January 2021 Chemo Starters

To you all

 

I absolutely agree with re the  easing of lockdown.  I am terrified, have yet to go anywhere since October and the start of treatment, part from the docs for bloods, the hospital and the dentist.  Even before I detested busy places and in first lock was very very cautious.  The thought of sitting next to some one on any form of transport even a plane to get away to a hot spot for holiday, sitting in a crowded restaurant and using a hotel swimming pool YUK !

 

 

 

I enjoy being anti social at the best of times ...

 

Hugs to all

 

Gilly

XXX

Belinda_F
Member

Re: January 2021 Chemo Starters

hello guys, how are you? especially those just post treatment? you're all in my thoughts tons... especially as I come out of 'the horrid'... today, finally, I feel a little more normal, and what a feeling it is isn't it... but I know many of you are in the thick of post treatment toxicity, steroids, sickness and injections...

@donkeywoman how are you today? have you spent day in bed? sorry feeling stressed trying to help hubby...trying to do anything just post treatment is beyond hard, I do hope you're both feeling less stressed now and you've rested tons under the duvet. 

I'm so sorry, as usual with my phone, it's not tagging properly, but you know who you all are, I hope today has seen some improvements? I've asked about the tagging issue, and it was suggested using chrome... not sure that helps when using phone? I'll try... but apologies, can't tag the rest of you guys... you know who you are.... ❤

big news with potential lockdown easing... makes me nervous.. tubes will be busier... schools back too, but @Mumboo (that tag worked, oh hum, confused you will be...) kids will stay homeschooled at yours yes? best to ATM, it's too much stress isn't it... 

@Erin 35 is your little girl at nursery? and how are you doing emotionally today? it's horrendous isn't it, the emotional toll, I do hope you're rallying today...

so today has been a good day, had energy, been busy, visited my parents for first time in months, so good to jump in the car!!! but I got a date wrong and missed my ultrasound!!!! thank god they have an appointment tomorrow ... here's hoping tumor shrunk again, nerve wracking...

my lungs are improved, wondering if I had a slight infection? or it was breast pain, post chemo... it's common apparently, and the drugs doing their work... will find out more with Drs Wed. busy week of consultations here. 

sending big hugs guys, do hope those feeling better continue to with speed, and those in the depths of 'the horrid', big kisses for getting thru it and feeling much better super soon x

 

 

Mumboo
Member

Re: January 2021 Chemo Starters

Hi @Erin 35. Just a quick message to hopefully give you a bit of encouragement with your daughter about the hair. Even though i'm still using the cold cap, mine shedded massively after treatment #2 & i decided to cut it really short (didn't quite brave the shave, but i did look like a wispy haired old man!). It is a big deal to drastically change your appearance. It's emotional for yourself, but you also worry about the effect on others, especially those we are desperate to protect. My amazing girls (8+10) were obviously uncomfortable, unhappy but also intrigued. I didn't know whether to try hiding it with scarves etc, but in the end after only a few days, it has just become the new "normal". My youngest (also called Gracie 💖) likes to tickle it! 

I just spoke to my 10 year old about your situation & how we coped with it & she says that she doesn't even notice what i have on my head now, it's just me. Kids are so very resilient. Rock your amazing warrior look & let your daughter see your strength (even if we don't always feel it!! 😘).

Sending lots of hugs. 💖💖

Xx

donkeywoman
Member

Re: January 2021 Chemo Starters

Evening all, 

@Gelbel so lovely to hear you sounding so bouncy - your walk with pals sounds lovely, if exhausting. And good for you, taking charge of your make up etc. Your friends sound lovely. Hope the chicken was good once slow cooked. 

@Belinda_F glad you managed to celebrate with your friend, albeit sober on the sofa. I can't imagine opening a bottle of sparkle ever again! Though I'm sure I will... 

How has everyone's day been? I've been pretty hopeless, mouth is revolting, feel fuzzy and miserable. But did get out for about 40 minutes which helped. I cooked a pizza earlier and have munched my through that gradually througout the day. Hubby has been working today (here) and asked me for advice on a word document, but I couldn't work it out - really can't think straight at all. He is stressed and that stresses me, ugh. I've come back to bed for a bit, cosied up with the laptop.

@Belinda_F just so you know, the cricket matches last 4 or 5 days and then there's a bit of a gap. Next one starts on Wednesday morning - 9am on channel 4 if you want to catch it 😊. It's starting later in India, so not the middle of the night this time.

@Pesto - it's interesting that you have oral chemo - I had wondered if they might use it more during covid, but it wasn't an option for me. How do you generally find it? My friend's partner is on it for a year for skin cancer and it sounds harder than I maybe thought. 

All the best for a peaceful evening for all xx

Gelbel
Member

Re: January 2021 Chemo Starters

@Pesto / Gilly,

Sorry, I really meant to say thank you so much for helping. I thought of it as I was typing, then, chemo brain thing that I am, I forgot. x 🤗