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December 2020 Chemo Starters

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all, thanks for your supportive words, I couldn't even respond yesterday. But a bit brighter this evening, tapping at this in bed. I think that giving in to the exhaustion works better for me. I do get out each day, but if I push myself too much, I just sit here worrying about what I should be doing and that makes me worse. I'm too light headed to do much, so if sitting up in bed, eyes closed, listening to the radio works, I'll just do that.  But hoping for a bit more oomph tomorrow.

Hope everyone is managing as good a day as possible.

And it looks as though we will get some kind of summer - yay! xx

Pesto
Member

Re: HiRe: December 2020 Chemo Starters

Hi all

 

Not too bad today, done some laundry, cleaned a bathroom and emptied the dishwasher, and all before 1: 00 pm.

 

Nothing unusual normally but rare for me to even do one without a nap...  I might be even more adventurous  later and get some ladders and wash all the upstairs windows.  Well I would if I like heights lol

 

Got an hour long physiotherapy T call this afternoon, looking forward to it like a hole in the head.  Did not do any of her excersises last week as too tired and always asleep.  Am expecting a ruler over my knuckles...

Agreed @grannyp  today is a new day, new week and Monday and It has finally stopped raining here in glorious N Nottinghamshire.  But going for a walk....I will mentally join Higgi, mind and body et al

@donkeywoman 

Sorry your day was not too good yesterday, but we all have them, and reading comments on here I feel so much better and far less of a moaner, though Hubby is fed up with me saying sorry.  He is brilliant but dealing with me and my long snoozes never mind my lack of appetite is very frustrating for him. He has mastered walking on egg shells.

 

Regarding food, I would communicate with both him and the children what do fancy for dinner most days, the answer was always don't know, not sure, what do fancy Mummy...  I fancy that....  Oh no not today maybe we could have that tomorrow.  So really it is just tables turned....though I know that sounds rather harsh.

 

Big hugs to all and I forgotten the Donkeys, bless them

 

Gilly

 

XXX

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Sorry you had a rubbish day @donkeywoman We do just have to roll with whatever each day throws at us but it is definitely very hard on rough days. The lack of energy is so debilitating and makes a low mood even worse. I think that all we can tell ourselves after days like that is that we have got through another day and we are one day nearer getting to the end of this. I find one day and one step at a time difficult sometimes but it often is the only way we can look at it all.

Today is another day and really hoping that you feel a bit brighter.

And we all need to remember that we have got to the beginning of yet another week - well done to everyone! And good luck with all treatments and appointments this week x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all

Thanks @grannyp - I did get out for about 40 minutes with the animals, but to be honest, I've had a pretty rubbish day. Nothing dramatic, just no energy, horrible taste, struggling to eat, bunged up (by my standards) and low in mood. But I just propped myself up on the sofa and watched tv and have now come back to bed for a bit. I know I just need to let this pass, but it's hard in the middle of the rough days, isn't it? 

@higgi glad you had a good birthday and hope the post exercise aches and pains are manageable. Fabulous progress on the cycling! 

Hope everyone is having a good evening - or at least a peaceful one.

Ha @Pesto not sure I fancy a trip to the doggy beauty parlour, but each to their own! xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi again everyone

Thanks @donkeywoman and @Pesto for your kind words about my rambling post. I genuinely do feel better than I did a few days ago - that old rollercoaster of emotions keeps on going, doesn't it! And we keep going through that old DABDA cycle that we were talking about. I have said several times to family members that once this treatment is over I am going to view my situation as being not dissimilar to many other 60-something year olds - anything could unexpectedly jump out and hit me, in the way that this breast cancer did. So why worry about a recurrence? It could happen but it very well may not and then again many other things could too. We all have to rebuild our lives after the active treatment  and making the most of everything has to be our aim. 

I do always try to be a positive person. This situation has tested me on that big time!! But I do hope I m beginning to get back to my usual frame of mind. I have certainly done more this weekend than I have done in months and that has helped the mindset tremendously. It seems that the tiredness is improving too. Fingers crossed!

@donkeywoman Hope that you got outside with your animals today and that you are feeling a bit brighter. How are you feeling? Is there any improvement with this cycle? I do hope that you don't have to delay the next one but, as you say, better to prepare yourself for the possibility. 

@higgi Belated birthday wishes and well done on your fabulous cycling achievements. You are quite right to say that we should be looking at what we have managed to get through so far. We have all faced physical and emotional challenges and we are getting through. I also have bloods etc on Tuesday ready for cycle 5 on Wednesday - I will think of you and hope that yours all goes well. Forgive me, I don't recall where everyone is in their treatment plan - have you already had surgery or is that still to come after chemo finishes? 

@Pesto  Hope you enjoyed your glass of wine. As you say, we have to build back to some sort of normality. I have to admit that I have had a few glasses over the last couple of months. My taste and appetite haven't been affected at all and I have very much enjoyed a glass of wine here and there during the second half of the cycle when feeling pretty normal. My onco team, including the consultant, said right from the start that they are more than happy for their patients to have a glass of wine or g&t or whatever they fancy if they felt like it. I know that some places seem to prohibit it and obviously many people couldn't even face it. 

Hope everyone has a good week, whatever it holds x

Pesto
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp 

 

Your post was never too long, nor rambling.  I found it very interesting and agree regarding diagnosis etc

@higgi  wow, so delighted you have enjoyed your birthday...  happy birthday.  I am joining you although only in spirit and feel so much fitter reading your tremendous exploits 

 

@donkeywoman 

 

The grey is here too today, in fact bloomin miserable, but the comments on here always brighten my day and make smile, everyone is so positive, it is hard to feel down when reading of you all.  Treats, hampers, cakes marathons, looking after your lovely Donkeys.

 

Trying to have my old Sunday pre lunch imbibe of a glass of white wine.  Normality has to return soon.  In fact it tastes rather nice.  A first since October apart from a small glass of champers last weekend.  I will prevail.

 

A genuine open question to all

 

On Thursday Humphrey my old pooch is going to have a manicure and a little wash, why can he when we can't.  I would even consider going to a poodle parlour now !  I know he is house trained, very soft, won't hurt a fly, wears a dog collar and when out a lovely lead.  Surely if we all agreed to being like him we could be done...  !!!!!!

 

Hugs

 

Gilly

 

XXXX

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone! Can’t believe Wer the time goes despite this gruelling chemo ! I’ve had an amazing birthday ... even walked a half marathon for it ... n yes I suffered later with groin n bone pain !! 🤣 still cycling like a nutter despite bouts of diarrhoea cos I love spicy food ! I’m now at 565 miles on 39 days over 1/2 way to john o groats !!! I have more aches n pains when I lie down ... exercise massively helps me . 🙏

I’m sleeping a bit better as persevered with valerian root 🙌 I’m due blood Tuesday to b zapped again wed 5/6 cycle (docetaxel plus herceptin plus perjeta) bad boys !!!! I’m now day 82/126 of chemo ... so proud of that ! Hope u are all feeling proud too ... look at wat u have done rather than wats left to do !! 
big hugs to you all stay safe ... ps don’t forget to do deep controlled breathing and mindfulness as well as some moving ... above all b kind to yourself u r amazing. Xxxxx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

It didn't seem long at all when I just read it @grannyp 😊. It was very interesting, thank you. I do agree that I find this area of the forum the most supportive. I look around sometimes, but think that being in a smaller, more sensitive group is more helpful. I really like your blend of positivity and realism... Glad you have some sunshine - it's not made it to Derbyshire yet. But I will get out to the hens today, they always brighten my day xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Just noticed how long my post was. Sorry everyone for rambling on!! Just scroll past😊

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning @donkeywoman and everyone else. Gosh, you aren’t prying at all. We are all in the same situation one way or another on here - all with our own individual diagnosis, path through it all and reaction to what has happened, but united by all having had a cancer diagnosis. I had a fairly ‘standard’ hormone receptive tumour found on screening and not particularly large (16mm) or aggressive.  A small amount of DCIS was found on surgery - again, not the most straightforward scenario but not the worst. However, despite the relatively small tumour a large positive node was found at the time of screening and the node clearance found two more were infected. This has made me much more high risk for spread or recurrence. My risk is no worse than many others and I know that I am having treatment that will minimise that risk. And I do firmly believe that we have to be as positive  we can - worrying about what may or may not happen won’t change anything. I think I had a wobble when I got my radiotherapy consent form and read about the zapping of the higher nodes. My consultant is excellent but hadn’t gone into detail in this (maybe she thought it wasn’t necessary). I took myself off to read about it and convinced myself that I was now extremely high risk, only to eventually realise that it is fairly standard procedure with node involvement- and also realising that it is actually another good thing to minimise risk! I also seemed to be seeing so many posts in different threads or groups where people were using phrases such as ‘thank god my nodes were clear’ and ‘the most important thing is that I had clear nodes’ I try to be conscious of others’ situation when posting on any of these sites and think we should be careful of being vocal about how terrible we think  a situation would be when people reading the post are in that situation. I am very happy for anyone with a ‘straightforward’ diagnosis and totally understand their relief but let’s be respectful of each other. 
Anyway, I am for now sticking to these chemo threads where we all support each other however we are feeling or responding to treatment. 
And the sunshine and feeling much less tired - almost normal!! - have helped me. 
I think it is hard to push the ‘what ifs’ to the back of our minds but we do have to learn to do that and to make the most of our lives once  we have got through this horrible chemo phase. 
Hope everyone has a good Sunday. xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all,

@Woodybird glad you have finally had the letter and will hopefully soon have the 1st jab. It did feel good to get one. 

@Karden fingers are firmly crossed for your results on the 1st, glad you are managing your symptoms,  the fatigue just gets worse with every dose, doesn't it...

@grannyp hope I'm not prying and don't respond if you don't want to or feel like it. I just noticed that in your last post you mentioned your outlook and likely outcome. I wondered if this is something that is bothering you a lot? I sometimes wonder about what might happen next but am generally surprised about how little I think about it. Anyway,  I was just wondering and hoping it is not too painful for you.xx

Hugs to all and I love @ woodybird's bit about staying hopeful 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone 

@Woodybird Good news on finally getting the CEV letter & hope you get your vaccine soon.

@Karden Hope your mri shows good results and lots of luck with the next step if your treatment. 

@donkeywoman  Hope SE not too bad with this cycle. Regarding the hb levels and tiredness, I have actually felt so much less tired the last two or three days. Hoping that my hb levels have at least stabilised🤞 Hope you might have the same. I was out and about yesterday and this morning and just such a different feeling than at this stage last cycle. Mind you, I think the glorious sunshine here today is helping as well!! Trip to the local food market, wander along the seafront and a takeaway bite to eat by the sea and think I will go out and do a bit of gardening. Was feeling very down and pessimistic about my outlook yesterday but amazing how a spot of sunshine can lighten the mind. Doesn’t change the likely outcome but I am managing to look at it - at least for a few hours! - from a different perspective. 
Hope everyone else is doing ok and having as good a weekend as possible. Yet again, we are another nearer the end of treatment! xx

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman yes, "whizzy with steroids", I like that and describes perfectly! Crashed yesterday, really tired but had terrible nights sleep. Bit better last night and finished the steroids now, so hopefully sleep will return to normal.

On a positive, received my letter classifying me as CEV - finally - which should hopefully mean my vaccine letter will now swiftly follow 🤞

Stay strong and well, but if you're not, stay hopeful. X

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman I'm doing pretty well, I'm now on day 9 of the 4th cycle and my main issue is fatigue and a congested, bloody nose.

It's strange how different side-effects take over each time but I am ok and dealing with it. I had the MRI yesterday so am waiting to find out the result on 1st March.

I hope everyone has got something to look forward to this weekend. It's looking very grey and damp here in South Yorkshire but I'm going to get out for a walk. xx

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Morning all,

How is everyone feeling today? I had number 4 yesterday,  all went fine. I now just have that strange feeling of being tired but also whizzy from steroids, as well as flushed and a bit bunged up. A heady mix! 

@granny P, 3 weeks sounds really good, hope it goes  to plan 🤞. I'm working on myself to accept a week off next time as I can't imagine Hb improving much, as I've just had the poison that caused it! I will mention reducing the dose again,  as the pharmacist I spoke with said that I've had the most important doses.

@Woodybird, hope you've carried on feeling ok and getting out in the garden 

@Karden, how are you? Hope your possible last cycle is going as smoothly as possible. 

And hope everyone is keeping their heads above water on this soggy Saturday xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman 

Good luck with your treatment tomorrow. I agree with you about not delaying - I just want to get on with it and get it over and done with. My Hb levels have also been down at the last two blood tests - not as low as yours but I am still slightly anaemic and I can feel that it is making me tired. I am hoping it hasn’t dropped much further next week. I have less than 3 weeks to go now and just want to get there. Fingers crossed that yours might pick up a bit and the tiredness isn’t too bad after this treatment. 
@Woodybird  I think we all go through the whole grief cycle again and again. A friends who has been living with cancer for over 12 years - and is very well - says that at stressful times it really helps to identify where he is on the DABDA and either come to terms with how he is feeling or do some displacement activity.  
And yes we are all getting through this in our own way - and we should at times remember just his well we are doing. xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all, 

@Woodybird glad the Docetaxel (it's my main drug all the way through) is okay so far. Best to grab those bits while we can, isn't it? Hope you enjoyed the garden, I'm just in from an hour outside, much better. Chemo tomorrow so I'm out as much as possible today. I'm a bit anaemic (92) but okay to go ahead. They offered me a week off, as I was moaning about how rought I'd felt, but as it's safe, I'd rather get on with it. I suggested a dose reduction, but that isn't recommended. Hey ho, see how we go.

@grannyp we are on the same wavelength I think. I've been round the grief cycle several times, though rarely angry, to be honest. I guess I was bargaining today - 'as this is just to keep cancer away, rather than reduce a tumour, couldn't I reduce the dose to help me carry on to time?'. Ah well, worth a try! 

Hope everyone is feeling as okay as possible and totally agree, spring is starting to poke its head up, which is encouraging... xx

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

Hello All,

Cycle 4 yesterday, and a drug change to Docetaxel (by itself), which I was dreading. No nausea and generally feel good (tired but didn't sleep well in the few days running up chemo). Might be too early to be so optimistic, but liking how it has begun.

@grannyp looked up DABDA and feel I've been up and down that scale multiple times already. Recognising it is step one, understanding our feelings and moods will change all help, even if it doesn't always feel like it.

I admire everyone here for going through this, in whichever way suits or dictates it's way to us, but I have to give special admiration to @higgi. Well done that woman 😃

Glad it's warmed up a bit, and the spring flowers are starting to poke their heads up. Makes me feel like poking my head up a bit too.

Might be pushing my luck, but going to go in the garden for an hour while the sun is out 🤞

All the best to you all.

P.S Don't be tempted to use spray deodorant! I forgot the instructions (this might only apply to ladies who've had surgery), and freshened up before PICC clinic with a quick spray on Monday. I couldn't even feel the spray going on due to numbness, but boy did I feel the irritation afterwards! Better now thanks to the steroids apparently (I didn't ask the nurse what to do if I wasn't just about to have steroids 🤔).

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning all and hope everyone is coping as well as possible. @higgi the treatment that you still have to go through must seem never ending. And it must be hard for you and those in the same situation to see others getting close to the end of ‘active’ treatment. As you say we are all different and all on a different path but I will freely admit to feeling envious at times of those whose path has been more straightforward, particularly with no chemo to endure. I don’t feel good about myself having those thoughts as we have all faced the devastation of a cancer diagnosis but I think it is just human nature. Your determination to live life to the full is admirable and something we should all aim for. And well done on all your exercise and fund raising. We do all need to find something to focus on. @donkeywoman yes I agree that my mood can change so quickly and go from one extreme to the other. I am beginning to predict when certain things will alter the mood but at other times it is just a totally unexpected swing of emotions. And being able to talk about all this to you lovely people is a great release. I have to share some of how I am feeling with family but I know that they are struggling and dealing with their own reactions to my diagnosis and treatment. Whilst I can’t really help them with how they are feeling, I don’t want to burden them even more, especially when my moods change so much. It is so important for all of us to be able to discuss our worries or concerns- or just rant! - on here with others who know just what we are going through. 
One thing I am finding though is that ever so slowly I am spending more time discussing things going on in my family’s lives. I almost found it impossible for a while but I now listen to them and talk things through much more easily than I could. I am starting to wonder if I may be edging closer to the end of that whole DABDA grief process that we all go through. I think it is actually a series of emotions that we will go through again and again but perhaps beginning to recognise where we are in that process is a good step in the right direction. 
Anyway, all a bit profound for early morning!! Off for a dog walk now. Hope you all have as good a day as possible xx 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all,

@higgi you are an inspiration! Well done on the cycling and fund raising, brilliant stuff. And a campervan on the way, fabulous! I'm a bit in awe of you 😊

@grannyp  and @Karden it does feel tough, doesn't it, but it is (for me at least) very helpful to share with people who get it. I do tell my nearest and dearest, but try not to go on about it because they are concerned enough without me adding to it. But at least on here we can express ourselves without fear of adding to anyone's burden. It's just sharing and comparing notes. 

I don't know about anyone else, but I can change so quickly, it's hard to keep with myself! I have these lovely moments of feeling in control of it all and seeing the end in sight. Then, within a short time, I can be quite desperate, not being able to imagine how I'll keep going until the end of the next cycle, let alone the one after that! Thank goodness for birdsong, trees and junk TV, as all of these (and the donkeys of course) can take me out of myself and to a gentler place...

Take good care all, let's all keep going in our own ways, as gently and kindly as we can xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi thanks for the info re eyelash serum ! 
I try not to think about what’s still to be done ... in my case .. 2 more chemo , mastectomy inc nipple full axillary clearance radio herceptin n pertuzumab (18 more 3 weekly cycles). ,, think that’s it 😋... rather I focus on ow bloody amazing I am to be doing this !!!  I focus on the amazing campervan on Order (July) , girlie holiday October and retiring to travel the world July 2022!!!!!! 
Yes cancer has changed me forever and I gonna live life to the full because reality is I don’t know wats round the corner .,, I know I’ll have had too to toe treatment of the very best !!! Thanks to nhs and cancer research .. ❤️ 
it’s hard I know but many of you have had the surgery and u r nearly done ! Fantastic!! keep going even though u tired !! As I’ve said previously we are all different and our experience is different... for me I have been able exercise and I’m sure that has helped !! I’m now at 480 miles cycling in 34 days .,, over the moon ! And I’ve raised nearly £2000 for preventbreastcancer. 
remember ... u are all amazing inspiring beautiful... love yourselves spoil yourselves . Massive hugs to you all xxxxx 

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp  I have been recommended  Silly George eye lash serum for growing lovely long lashes and it works on eyebrows. Hopeing it helps things grow back quicker. The web site is offering a free mascara at the moment if you it buy now. 

@donkeywoman @Karden  Treatment does seem never ending. I have hormones for 5 years may be 10 .  Then there is an infusion for my bones for 6 months.  Kadcyla for 18 months after surgery.  I think they are assuming with tripple positive I will have residual tumour am hopeful it will be clear from my lymph node after all this chemo.

I think the long term targeted stuff is no way near as  bad a the chemo. Heres hoping.  

Hope  this week is not to bad for all. not as cold now  which is a big plus. I seem to feel the cold lot more on chemo especially feet.

 

Xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden @and @donkeywoman  I understand just how you are both feeling. I am also completely fed up with the whole thing and hate not feeling like myself or being able to do the things that I could previously. As you say, @donkeywoman I was expecting to feel much more positive at this stage as the end of chemo is in sight but I certainly don’t. However, when I discussed this with my oncologist yesterday she said that this was perfectly normal and that the vast majority of her patients feel like this. Apparently the penultimate cycle is the one that most people seem to dread - almost at the end but it still feels a long way and everyone is fed up of feeling as they do. She assured me that my mood is likely to improve once there is only one left. I will wait and see if that happens but she did gently convince me to just pull myself together for the final push. If the wretched tiredness eases I am going to try whatever displacement activity I can manage over the next 3 weeks. 
I can only imagine what it feels like for both of you - and many others on here- with drugs ongoing for the rest of the year. And I know that you are still to have surgery @Karden . I still have radio to go and then hormone tablets for 10 years - oh and zolandronic acid for 3 years!! But I do truly think that we will be through the worst part once chemo finishes. 
Starting to plan my radio yesterday did help a little. I will have to do 15 days as I don’t qualify for the accelerated 5 day treatment. And I have an hour’s drive each way to the clinic for those 15 days. But by the time I start - immediately after Easter - the weather should be better and we may have some loosened covid restrictions. So I am looking on the bright side that at least at the beginning of the treatment we may be able to take the opportunity for walks (or even lunch!!!) somewhere some days. I know the travel and treatment will become tiring as it goes on but trying to be positive! 
So pleased to hear about your wig @Karden  You are right that looking like yourself is a big boost and I am sure that it will give you the confidence that we all need to recover. That is definitely how I feel about my hair system. 
Hoping we can all soon start to feel a little better. You are definitely not whinging @donkeywoman - you just feel like we all do. We definitely didn’t want to be in this situation and we are all trying to cope as best we can but it is all really ****** and we do just want to feel more like the person we were. The end of chemo will undoubtedly bring its own challenges but we will be out of the worst and hopefully life for everyone will also be beginning to slowly return to some normality. x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp  I hope you are happy with your interlace system and that it is helping with your confidence. Only 2 cycles to go and then your Chemo is done - hang on in there! You have got this!

@donkeywoman  I am like you, Herceptin and Pertuzamab until December and then 5 years of tablets. Even though there's possibly no more Chemo, I'm feeling down about the overall treatment lasting so long. I'm wondering how I will feel over the next few months, I'm so fed up of feeling unwell and tired, will it improve whilst just having the immunotherapy drugs? I must ask my oncologist. I feel desperate to return to some kind of normal life, even with ongoing Covid restrictions.

On a positive, my new wig has received very favourable feedback and it's very similar in both style and colour to my previous hairstyle. It makes me look (if not feel) like my old self and will make a real difference to my confidence when I start going out again. 

Hoping to feel less tired in the next day or so and I have an MRI coming up next week. x

 

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all

@grannyp hope the telephone consultation was helpful? And that it helped with some motivation for keeping going with this. I agree that it is getting harder. I feel a bit annoyed with myself that I don't seem to getting any pleasure or comfort for the fact that I'm getting nearer the end. Instead I am a bit fixated on how miserable it is, especially as the cancer is gone... I spoke with a breast care nurse today and it just reminded me that I will be having injections (Herceptin/Tratszumab) until December and then tablets for 5 years! It is never ending... But I'm sticking with my feeling that once this bit of chemo is done, that is the main bit out of the way and life should start again. I think I am a big whinge bag as up until now I really haven't suffered like some people! Must remember that....

Hope everyone's days are as good as they can be. I've actually had a good day and done a lot more, so I'm tired now which is probably why I'm feeling a bit gloomy. Tomorrow is another day! x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone.

Another week and another round of appointments and treatments for some of us. Good luck with whatever is happening this week. As @dipitdee says, it is good to see that some of us are nearing the end of chemo. The emotional whirlwind is definitely no easier as we get closer to the end - I thought it would be but I am actually finding it more difficult. The physical side effects are not too bad, although I have definitely had enough of the tiredness, but my mood seems to sink lower and it is getting harder to pull it back up. I guess that even relatively mild side effects are getting to us and basically we just want to feel more like ourselves.

On the question of eyebrows and eyelashes, I also have much thinner eyebrows now but so far still have eyelashes - they definitely don't feel as they did, but I am grateful for anything at the moment! The hair is a strange thing really. I am not sure how much mine is shedding now since I had the Intralace system but I know that I am still losing some, yet at the same time I definitely have stubble coming through on my legs and underarm - very short but it is certainly growing!

I have a telephone consultation with my oncologist this morning to see how I have reacted to the first Paclitaxel. The senior onco nurse said that she should also start to discuss plans for radiotherapy. If she does, I hope that may give me a bit of a boost to help to get through the last two chemo sessions.

Happy Monday to you all and hoping it is a good week x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all

@Karden , I love Northumberland, such a lovely place to celebrate your birthday and the end of this.

Hope everyone is feeling as good as possible and roll on the milder weather this week xx

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

So nice to see people starting to come to the end of treatments now! Definitely on the home straight. I’m on day 3 after my 2nd round of docetaxel, still another 2 to go but this hasn’t seemed as bad as last time.

Eyebrows definitely thinning, but my eyelashes feel ok for now. I bought some eyebrow stencils and benefit eyebrow cream at the beginning and it’s been a godsend lately at making me feel normal when I go out (you know, for appointments cause it’s not like I’m going very far at the moment!)

Like others I’m a bit of an emotional whirlwind at the moment but keep telling myself that only a week ago I felt fine again, and I will do again. Hopefully the thaw will set in a bit and getting out when the wind isn’t quite so bitter will be good too! 

Happy Valentine’s Day all, I’m saving my chocs for when I can appreciate them a bit more xxx

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 

You are right we dont realise how important our eyelashes are. I have been wearing my glasses just to stop me itching my eyes 😂 I dont normally wear them, only for computer work but needs must, I couldnt stop itching them. I thought I would lose them during EC and didnt so was surprised when paclitaxel made them start to fall out.....i do still have my eyebrows but have noticed they are thinner that's for sure 😁 

Hope you manage to still enjoy your favourite treats, we all need a pick you up sometimes xx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27  I still have eyelashes and eye brows but definately falling out.   (I had really thick eye brows)  A friend who had breast cancer 2 years ago said she had alot of problems with eyes.  We don t realise how much eye lashes protect the eyes.  Wearing glasses helps but the eyelashes falling out causes irritation.  I guess some eye drops will help. I wear glasses and it is less noticeable.

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Shine13 

Yes it must be a a scheduling thing but I can imagine that was a very long day but at least it's out of the way.....onwards and upwards hey.

I am having my op in may too, paclitaxel has been kinder but I have experienced an upset tummy to.

Have you experienced any issues with your eyes? I kept a fine covering of hair on EC including my eye lashes and eyebrows but my eyes are very watery on paclitaxel, think my lashes are falling out which I am finding harder than losing my hair......its a strange one lol

Hope moving forward your upset tummy eases with each treatment x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Everyone seems to be staying positive and dealing with whatever comes along, although it's ok to have a wobble and a cry as and when. We are so used to getting on with it that we forget that we should acknowledge our innermost feelings and let the emotions out.

I'm on day 4 and haven't yet started with side-effects but they will come in the next day or so. I have been making the most of my time baking and sewing and have booked a week in a cottage in  Northumberland for September, just after my birthday. We also have a week on the Isle of Wight in early June which was put back from last June but not sure how likely that is.

We all need to have something to look forward to, whatever it may be. 

Best wishes to you all. x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone and hope you are all having as good a weekend as possible. @Shine13   and @donkeywoman, good idea booking a break away. We definitely all need something to look forward to - even those who are just battling lockdown without the added complication of cancer treatment. When chemo was about to start we talked about arranging some weekend breaks for when it was finished but then lockdown hit!! I am not good at planning too far ahead but I think I now need to get something booked for summer. Especially as a concert and two theatre trips that were in the diary for spring/early summer have been pushed back. I still have one theatre date for August (postponed from last August!) & hope that might go ahead🤞 As you say, most things can now be cancelled if restrictions don’t ease as quickly as we would like. Perhaps that will be something fun to do in the next couple of days after I have battled with our business insurance renewals and year end accounts planning. 
I am still feeling reasonable after Paclitaxel last week. The tiredness is hitting again but so far nothing else and definitely better than EC. I am able to do normal things for much of the day and can get out to walk - I even ventured to the local outdoor food market yesterday. My patience with staying at home had finally run out and as it was very cold & still icy I reckoned it would be very quiet, which it was. Felt like a great moment! 
Telephone consultation with consultant tomorrow to see how I have reacted to Paclitaxel and according to nurse she should also be starting plans for radio. Hoping that is the case as I definitely need some incentive to get through the last 2 treatments! 
Good luck with treatments and appointments this coming week x

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman Great idea to book something. I have booked a long weekend in the Cotswolds in September. Gives you something to look forward to you can always cancel. When things get moving everything will get booked up. There is light at the end of the  chemo tunnel.😏. I think roller coaster emotions will be the norm for a while.

Pesto
Member

Re: HiRe: December 2020 Chemo Starters

It is the thought that counts, and you unlike me thought ......

Might find a Christmas card somewhere in the study and cross out Happy Christmas......

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Pesto , think I may have overdone it when I say 'made'... I stuck a photo of a tree that he planted on a card!

Roll on spring.....xx

Pesto
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman 

 

Lovely thought for your hubby. If I did that mine would assume he another admirer -  lol.  I am so uncrafty and unartistic he would be questioning siri for an answer........

 

The stairs are beconing, exercise needed, might hit the shower.  But then again watching the rugby and being there in spirit is sometimes a good a work out as actually taking part 

 

Re the cold, I cannot get warm, told hubby yesterday I need inside gloves

 

Gilly

 

XXX

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all, 

@Shine13 glad the Paclitaxol is easier, tho 5 days of diarrhoea doesn't sound much fun...  I think that, as @grannyp said, perhaps we are geting used to having symptoms and just tolerate them. I totally agree about the cold, I am really struggling with spending much time with it, although I managed a longer walk yesterday. I may only get to the hens today, but it's warming up tomorrow so I will get back out on the road again... 

I have been bold and booked a 3 night weekend in an Air BnB in July (in the UK) for us and a couple of friends this morning. I know it might get cancelled, but just booking it felt great! My emotions are all over the shop - I feel quite happy and optimistic much of the time, but then suddenly have a wave of not thinking I can cope and have a good old cry. I'm just riding with the waves. I did  manage to make my husband a valentines card... 

Hope all your weekends are as good as possible xx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Evening all sorry for those having a tough week.  Well done on the exercise   they say it is the fourth treatment you can lose up to 30% of your strength through deconditioning while on chemo and exercise helps prevent this.  It really helps with my symptoms though I do less than before treatment.  Hard to motivate myself this week in the cold, feels like everyone is getting lock down blues with the cold now.  I am beginning to think this was a good time to get cancer hopefully my op date around May will coincide with easing - something to really look forward to.

Just had my second weekly Taxol - only 10 more cycles to go.  I would say it is definitely better than EC though I have had nasty diarrhoea for 5 days.  I think I am getting on top of it now taking lots of Loperamide.  I have stopped alcohol and caffeine and now I might have to give up cheesecake the only pleasure left. 😞 Just been reading fat, sugar, and dairy make it all worse.  I don t get the injections on weekly Taxol but the white calls are defiantly going down and they were fine  with injections on EC.  I guess if they get to low I ll get a top up.  I don 't need to take any anti-sickness and seem to be fine.  The take home tablets were Loperamide and mouthwash - no mouth ulcers yet.🤞

Pauline they did my Taxol and other drugs in one day one after the other with half break in between drugs it meant a long day.  I did query it as I am still working they were going to do two days I guess they have to schedule a lot of people through and it might not always be possible.

Hope you have a good weekend if there are any valentine surprises. 😍xx

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Quite right @higgi We are all different and all react differently to the treatments we are having. And you are spot on in saying that any movement is beneficial. The one thing that every single doctor and nurse I have spoken to since my diagnosis has said is that exercise is the most important thing that we can do to get through surgery and all treatment and to benefit ourselves afterwards. They have also stressed that any exercise is good - if you can only manage a short walk, then do that. A couple of 10 minute walks will do you good and a short walk is something that most of us can manage most of the time, even if sometimes we really have to force ourselves to do it! I personally hate not being able to do the amount of exercise that I previously did but I do make sure that I walk as much as possible and will do my best to build up other exercise when this wretched treatment is over and done with.

@Karden you must be so pleased that the chemo is over and done with. You can now look forward to getting your surgery and then moving on with life. The chemo really is the draining bit of all this and getting to the end must be such an enormous relief. I can't wait - less than 4 weeks for me now if all goes to plan but still 2 treatments in that time and sometimes it still seems like an eternity! Anyway, good luck with the rest of your treatment.

@donkeywoman good to hear that you are getting out more. And good news on the vaccines. Must be really good to think that when you get the second dose you will be ready to go back to work - a line in the sand and the start of regaining your life. I didn't get a date for my second dose but mine was done through my gp rather than the central system. I was just told to contact my gp if I haven't heard anything in around 8 weeks. And hope that your treatment goes well next week. 

I am still feeling ok today, 2 days after first Paclitaxel. More tired today than yesterday but didn't sleep very well. Other than that, pretty much ok. Although I do think that we get used to not feeling 100% and what we think is ok is possibly far from being ok!! Having said that, I don't have any specific side effects so far from this drug and I definitely feel better than after EC.

Hope everyone has a good weekend and than on to yet another week! x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone! None of you are put to shame you are all absolutely amazing !!! We must never compare as we all completely different. Any movement is good and beneficial... getting going is the hardest then it’s always ok ... if not I stop ! 🤣

we are all moving forwards each day ! Hope you all stay safe and have a lovely weekend 😘xxx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@higgi @grannyp I admire your ability to keep up the exercise, I must try harder!

The last of the 4 Chemo sessions went well yesterday and I'm feeling very relieved, just need the immunotherapy drugs every 3 weeks so the sessions will be shorter and side-effects minimal.

I'm looking ahead to the lumpectomy next and will see the surgeon on 1st March so hoping to get a date.

Can't get back to sleep since waking at 3am, my mind has been too active hence my nocturnal presence on here.

Been reading for a while and I'm going to try to get an hour or two before the alarm goes off. Hope everyone else is sleeping soundly. x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

 
donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi @grannyp - you put me to shame too, with your yoga and even a small amount of dancing! I managed a few stretches yesterday... But am getting out more too - did animal jobs today which felt good 😊. Glad the treatment was good, if long. But I just don't know how you coped with that long with a cold head. I know I've not tried the cold cap, but just a few minutes without at least one hat on and I'm feeling chilled all through. But as you say, you've got this far. Let's hope today is the sign of things to come and you carry on feeling okay. xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman  and everyone else. Hope you are all doing ok. @Karden hope your treatment has gone well 

And @higgi well done on the cycling. You do indeed put us to shame! But good on you. I am doing my best to get back to regular yoga practice. Desperate to do some dancing but 15 minutes’ ballet the other week had my thighs screaming at me!! So just doing a few minutes’ practice here and there and a bit of cha cha and salsa around the kitchen!! Hoping to build up more after treatment ends. 
First paclitacel yesterday. Exhausted after 7 and 1/2 hours in the unit but the treatment was fine. The 6 and 1/2 hours wearing the cold cap was not so good with really bad headaches. I have tolerated it up to now but that really was a challenge!! A long time for your head to be frozen! The nurse assured me I could give up at any time but after getting this far with it I am determined to continue- otherwise the previous times are just wasted. Got to do it another two times - help! - but I reason that if I have done it once I can do it again. And then when I get to the last treatment I will be so relieved that anything will be possible. They will also try to reduce the time by around an hour to the minimum needed. Very busy yesterday, so things overran. 
Feeling pretty good today but just waiting for side effects to pop up. Was definitely good not to wake up feeling nauseous or woozy. And zi was up and about at my normal time and even got out for a short walk. One successful day at least! 
Lots of good wishes to you all and keep ticking off the days and weeks. We are all getting there x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Blimey @higgi you don't do anything by halves, do you?? Well done! You put me to shame - I'm so proud that I managed a stroll yesterday and hoovered up! But we are all different... 

@Karden good vibe thoughts transferred to today! 

@grannyp - hope your week is going as well as possible

Lovely bit of sun out there, hope everyone can enjoy it, inside or out xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone and @Karden  wow last chemo !!! Fantastic!!!!  What surgery you having ? If anyone’s had implants have any of you gone over the muscle ??as opposed to under ? I need decide by April 🧐

Im on 4/6 (every 3 weeks ) so hopefully last one will be on March  17 ! (If I keep going as I am ) 

thanks for recommending anti histamine for bone pain but I’m sticking with paracetamol as anti histamine conflicts with immunotherapy (her2 targeted therapy ). On the whole I push through whatever ... I only gone and done 387 miles of virtual cycling in 28 days ... hoping complete lands end to john o groats by time chemos up !!! 🙏 

hope all’s ok with everyone.. keep going 😘❤️ 

Susie B
Member

Re: HiRe: December 2020 Chemo Starters

Hi Karden

Can't believe you're having your final chemo session today. That sounds good. Hopefully post surgery you won't need anymore but if you do just remind yourself that you are on a trial so there are no guarantees. Even if you get a good response don't  be alarmed if your onc recommends 2 more cycles of TC. It's something that is mentioned in the information pack. 

Wishing you all the best as you move forward towards your surgery. 

Susie B xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman 

My chemo is today but thank you for the best wishes, it is the last one of this block of 4 but I will find out after surgery in March if I need to follow up with 4 cycles of FEC ( hopefully not). I'm really pleased you will be having your last one and that you have got your vaccine dates. All good news! I had my 1st one a week ago but haven't got a 2nd date yet, they said I should wait to receive a text between 4 and 12 weeks on.

@grannyp Hope you are ok after your treatment.

Best wishes to everyone else. xx

 

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening all, hope everyone's days are as good as  possible. @grannyp and @Karden have you had treatment today? Hope it went smoothly and your day didn't feel too long, @grannyp .

I got the letter today and have booked my covid vaccines, yippee! Next Tuesday for 1st one, 3 days before treatment, so hopefully immune system will cope. And the 2nd in May when 🤞 main chemo will be all over and I will be about to return to work (just Tratsuzomab injections and whatever oral stuff I'll be on). That was a good feeling.

Hope everyone is as cosy and comfy as possible this evening, sorry if I missed anyone else having treatment today, hope it went well xx