@louby_lou69 my maternal grandma used to wear them to, I remember a blue one worn at bedtime to protect her curls after her weekly shampoo and set ...bless her...she was fab and I miss her even though she's been gone 20 years, she lived to 98 though.
Thank you for your kind words, we've all got to remain positive and support each other 😊 I am thankful for all you lovely ladies on here, we are all in the same boat and this journey we are on can be a very lonely one, especially in covid times . My humour is helping me get through this...apologies if it's slightly warped 😂. If your head is itchy you are probably on the verge of shedding as my scalp today has been sore and I've been wanting to scratch it, but I donned a scarf to prevent myself from going there. Dreading washing it tomorrow, and cleaning the shower drain after (with gloves on don't panic!). I've been keeping what's fallen out, I've decided to give it a burial/funeral in our garden, closure for me I guess. Husband thinks I've lost the plot. Doing this as I have a suspicion (and knowing my luck) it'll grow back grey and curly like it was in my teens..my worst nightmare!! xxx
My grandma and mum always used a hairnet, can't beat em.
My second chemo is fast approaching and my scalp is a bit sensitive and itchy. I always lose loads of hair anyway so not sure if it's quite shedding yet but it's getting close (I'm on day 18 since chemo).
Ive got turbans and scarves plus Wilma my wig ready. My partner is ready with his clippers, he shaves his head every 10 days so he's going to do it for me.
Love your positivity and smile
Well it's finally starting to happen, I am shedding more hair than my ancient rabbit used to, and he moulted like a good un (god rest his soul). The hubster and kids unbeknown to me last night had a "find the hair" competition at the dinner table 😂, so I am thanking the lord that I used to ride horses (we are talking years ago here) but had the hindsight to keep the hair nets, this is no how I looked to do the sandwiches and breakfasts this morning....very Norah (no wrinkly stockings though!).
Round 2 Wednesday and I am containing my excitement, but atleast it will be another bitching (being polite here) one down. Onc just rang me (or rather one of her minions), not that I could hear him very well (he had an accent which made it harder to understand what he said on the phone), I think he said he was prescribing mouth wash and more drugs to help with the ensuing indigestion and constipation (honestly never thought I'd be putting this on a post on the net 😂).
Wet and horrid here today in Somerset, I'm off to do some baking in a bit, so that my tribe have stuff to eat when I am feeling pants and have to rest post chemo. Hope every one has a good week.
Lots of love Sue xx
well done 👏🏻 amazing job. Just keep doing what your able. I’ve walked every day this week and it has helped with fatigue.
My walking challenge is going great, I've walked 54 miles so far. Will add another 5-6 miles tomorrow as walking with my friend and we are then rewarding ourselves with lunch.
I think it's going to rain quite a bit next week so must get out my waterproofs. Chemo #2 is on the 26th so my miles might slow down for a few days.
Hope everyone has a calm and relaxing weekend
Anyone else neutropenic? I knew I would'nt escape it for long on chemo.
Hope the Picc line flush went well, I find too that some nurses are less helpful shall we say than others!
Definatately with the taxil and carbo I feel worse side effects (every 3 weeks), i felt nauseous and more headaches. I am so bored of drinking water.
How is the 100 miles in October going? I took my ex's dog for a long walk today, I will sleep well tonight. I get so tired. Asleep by 9 pm!
Have a good friday night to you all
like you @Somerset Bunny I still have my hair, mad itchy and tender but all present. Got it cut into a bob last week from half way down my back. Hate it but it'll either grow or fall out I suppose.
5th infusion today, am on weekly Taxol plus Herceptin every 3 weeks. Side effects are ranging from nose bleeds, rash on face, neck and diarrhoea. Had to actually run home from a walk the other day, almost hopped a fence into a field to use the great outdoors, needs must and all that.
I hope everyone is doing well today, you guys are amazing and although I don't post frequently I read this thread all the time to see how you are all doing.
Much love x
I still have hair but I am expecting it to start shedding after next weeks second round. I have a wig fitting beforehand and it will be interesting to see what they come up with as suggestions. My hair was nearly to my waist in length before I had it cut into a bob prior to my first chemo so I may have choices...who would think that would ever be a thing we would have to consider in life? Already told the other half if it gets itchy I may have to borrow his clippers.
@veestar hope you feeling as well as you can in the circumstances today and not so spaced out, sending a virtual hug xx I have to take Filgrastim. Injecting yourself is another joy of this that I was not expecting, husband did the first few then I had to do the rest as he was back at work. First one made me feel a bit rough and achy, to the point where I took the wonder drug (in house joke here as it gets mentioned every hospital appointment😂 ) paracetamol (I am not normally a pill popper) but there after all fine, although don't know whether that might have been responsible for my sore mouth, I am going to check with Onc next phone call (Monday) as I was on steriods 2 days prior. Walking about with a syringe in my pocket was never on my agenda either but you need to warm it up a bit as apparently injecting straight from the fridge can be more painful, like a bee sting I have been told by friends who are the other side of this shit show.
Anyways Picc line flush today...I am containing my excitement! 😂 Hoping the bitch of a nurse (large lady no humour or personality) I had last week either isn't on duty or does not put the dressing on to tight, else I might have to have a word as it's been bloody sore since she did it last week, could have rang them but tbh I could not be assed to another hour and quater round trip just to get it sorted.
Wedding anniversary tomorrow...26 years (29 together). Thank God he is in my life, hoping maybe we can get out for a coffee and cake somewhere out doors to celebrate.
Lots of love to you all Sue xxx
Hi, @veestar and other ladies,
I hope your first few harder days after chemo go quickly.... they are hard.
When my hair started shedding fast, I decided to shave it #2/3, it was better. I am now completely bold, had a trip to Barbers a couple of days ago and asked for a 0 shave as was patchy.
Haven’t managed the final choice of wig yet, but will soon... just need to feel a bit better.
It’s a week since my 4 EC chemo and feeling a bit better.
Lots of love and hugs to you all, we will get through this.....
Aplogies I m writing this after chemo and I feel totally weird and spaced out. I had taxil and carbo doses today on start of 2 nd cycle. Hair is shedding rapidly now. Headaches still come and go. I have a big santa sack of Filgrastim, is anyone else on that?
i ve read all your blogs, and trying to work out how to tag you all..
You are all an inspiration in your own way and it's good to offload week by week.
Steroids for 3 days, now the fun starts again.
@Magenta59 😣 Do be careful!
sounds like things may be coming together and hopefully by your appointment everything will be clearer. 🤞🏻
We have a week off work (I’m still going in but on my time and when I feel able) so today we’ve been to west bay, Dorset. It was lovely and not too busy. Covid is ramping up down here and a few people I know have it at the moment but I haven’t been in contact with any of them. I think I’ll just have to work from home and keep myself to myself.
my hair is coming out in handfuls every morning and basically any time I forget and run my hand through it. I have it short anyway and it was quite thick so you never know it might just stop. Got a wig on standby but as it’s getting to woolly hat season anyway hey ho!
having a slightly better day after a rather worrying few days. I don't know if anyone else has experienced extensive bruising around the cannula site, but over the weekend (and bearing in mind I never actually got my Docetaxol due to the bad reaction) my forearm has come up in multicoloured bruises and felt rather achy. Looked like I had been manhandled! So a bit concerned I rang this morning for advice. had to send a load of photos by email, then they rang to tell me if it wasn't hot or swollen it would be fine,but use some brufen gel, and moisturise it. What a relief! You worry about phlebitis and chemo burn, extravasion etc.... I have another appointment with Onc next Tuesday, she thinks to sign more consent forms, so he must have got the new Abraxane chemo approved. Or maybe it is still in the pipeline, as the chemo appointment is saying only Phesgo at present. So I will be going but not sure how much I will get! maybe jst the jab? I hope it is approved in time as it just sets me back another 6 weeks otherwise, as it is my 3rd cycle on 27th Oct, but so far only 1 successful infusion. I really do need to get back to work at some point next year, and things are going very slowly with treatment. I estimate we will be in April before I get back. Originally I was hoping to be back after the New Year. Nothing is certain these days. You can't even plan a week ahead! Financially it is a nightmare!
At least SEs on Phesgo alone are mild, which is encouraging with it being longterm. Feel okay but still a bit achy. All tolerable!
@aliessyou are not the only one falling down! My numpty pony, who has no control over her own hooves managed to trip me up on the way in from the field today. I landed right on my left hip, same side I had the jab in! It feels a bit stiff now but no major damage! Good job I landed in the grass! And she just stands there looking at me, like "what you doing down there mum?" Think she was out to incapacitate me today as she nearly trod on me twice! She broke my big toe 3 years since-it was agony-and the nail is still not quite right. Don't need another incident so tomorrow I am in the steel toecaps!
@Somerset BunnyI know what it's like living in a tourist trap-York can be murder. I never go into town at the best of times as you can't move for visitors. It was super during the lockdown as the streets were deserted! Trying to shield makes life fairly uninspiring really. We did manage a couple of trips out to NT properties this year and fortunately it was fairly quiet. But not really had much return for our memberships the last 2 years! Might manage a trip to Fountains while I am feeling reasonably well, wouldn't be up to the walk back up the hill if I had got my chemo, it knocked the stuffing out of me. Breathless just going upstairs! On the subject of flu jabs, my Onc said it wouldn't do me any harm if I had it during my recovery week, but it may only be 50% effective due to the immune response being subdued. So he is ambivalent. We decided I would not bother with it, and only get the Covid booster when it is offered. Most winters I get 2 or 3 bad colds. Last Winter-NONE! Mask wearing and social distancing worked for me! So just going to continue doing the same.
I got my daughter to do a buzz cut for me on Saturday-my hair was just falling out in handfuls and my scalp felt quite sore. So much better now! Just short pieces shedding instead of 8" long strands! And it's not sore anymore! And strangely liberating. I do not have to worry about styling any more. Just pull a beanie on and go-or a wig depending on my destination. I don't need to dress up for the livery yard and no-one there will make comment as they all know my situation.
Have a good day everyone.
Hi @Magenta59 and all you other ladies,
Like others have said wobble away, I have found the mental side of things harder to deal with than the physical side effects of treatment, and I hope you hear something soon, fingers crossed for tomorrow. xx
I had a bit of a melt down Sunday, started to feel trapped in my own body, felt like I was being held hostage by this blasted disease, everything you do you have to question or question someone else, it's so annoying. I like to get out and about but living in a tourist/alternative town (Glastonbury) this may not be wise, just to many people about at the moment, covid cases here are also high think we are 11th from the top in the country.
Also had issue when I went to get my flu jab, they questioned whether I could have it , I told then it was okay as it was written as such in my notes, eventually had it, only to them discover in the depths of another information booklet that I should have left it a couple more days into my current round. I'm okay today and taking it easy so think I have got away with it. Another frustrating issue was I the inability to get hold of anyone at the hospital to check this, 20 mins hanging on the phone to get through to the ward (who take calls in the evening and at weekends) only to be told to ring again in the morning. Anyone else notice how short staffed hospitals are??? Flipping hope I don't get an infection in the future out of hours if that's the response time!! It will get mentioned next oncologist call (Monday next week).
Anyways lovelies, here's to another week in Paradise. Lots of Love Sue xx
Hello to everyone, hope the sun is making the effort wherever you may be.
We all have our pessimistic days that’s for sure and @Magenta59 wobble away!…….you are more than entitled to feel that way after your scare last week, the thing we hold on to is the treatment plan that is set out for us and when that is disrupted for whatever reason, it takes the control away again and the waiting game takes over, hopefully the funding will be approved before too long and you can get back on track…..Sorry to hear your children are experiencing anxiety for whatever reason, it’s not a nice thing to deal with, but on the plus side it is something that medication can help with, fingers crossed they will find something that helps them get through this stressful time. My son has been on anti depressants for many years because of anxiety and panic attacks, but it’s like any illness he needs the medication to keep the symptoms under control and, touch wood, things are good with him.
I will be on letrazole for 5 or 10 years when chemo is finished, I know like anything you hear horror stories, but a friend of mine has just finished 5 years and she had no side effects to speak of, it’s like every med it’s just not knowing how it will effect us until we’re on it!
I’m not doing anything today, usual Sunday rough day…..my daughter brings me carrot cake round on Saturday ready for my Sunday/ Monday rough days, to cheer me up…..any excuse for cake and coffee!!
Hope things ease off for you as day progresses Jane, be kind to yourself x
Take care all xx
ive not been too bad the past couple of days. But I suspect it was the steroids as this morning I’ve already had an episode.
we’ll see how it goes.
Jane I’m not surprised your family are feeling so anxious along with you. Hope you hear by Tuesday so you know where you are with everything. Do let us know!
im not sure which hormone therapy I’ll be on now. It was going to be anastrazole but that was before the HER2 diagnosis. I hope it won’t have changed as it’s a little milder I believe. It is strange to think that we dread this treatement the most, probably because it’s so long term. I know people who have given up on it.
have a lovely Sunday
Hi @aliess @veestar @louby_lou69 @Lu_B @Mrsmillie @amy46 @ Somersetbunny and anyone I may have missed. @aliess ooh you are having a rough time of it. I hope your fainting episodes are easing now-that sounds awful! Hope everyone else is doing okay.
A lovely day in York but I don't feel up to doing much after a really bad night's sleep. I have deputised a friend to see to the pony. My mind is just in a spin again after the mess with my chemo last week. No idea if I will get it on the due date or not, as funding for Abraxane has to be approved and how long will that take? It all worries me somewhat as all this is prolonging treatment that should have been over by Christmas. Now it will be February at the earliest and I can't get back to work in a timely fashion. Good job I have sympathetic clients or my business would have gone bust by now! Deputy Head chemo nurse told me to ring Tuesday if I haven't heard anything. One positive to take away from this is that the Phesgo injection has not caused any major side effects. A bit achy and the injection site was a bit sore, my mouth is a little tender, but so far so good. This is useful to know as i will be on this longterm after chemo finally ends. Not so sure the Letrozole I will also have to take will be so kind to me-I am hearing bad stuff about that! At least that is some time off! Someone mentioned HRT-since I stopped it back in May, the hot flushes came back with a vengeance! Some days not too bad, others terrible. I find it starts early evening and I am constantly taking my gilet on and off-maybe every 10 minutes! And getting sleep can be difficult as it can go on all night! Frankly, there is no wonder I am tired! But what can you do? Just bearing with it and hoping it doesn't get worse when Letrozole starts. I will be demented as I will need to be back at work and being exhausted is not an option! Arthritisis likely to get worse too-it all sounds a joyous experience that just has to be endured if we want to live! Cancer sucks! And it is all starting to impact negatively on my family. My daughter is her final dissertation year at Uni is anxious and stressed, despite her tutors being aware of the situation, it doesn't go away. My eldest son is now experiencing anxiety and panic attacks, partly because of what is happening with me, partly due to outside factors, and is now off work on anti-depressants! What a crock of 5hit it all is. Oh to just get this treatment finished and have some kind of clear picture of a better future in sight for all of us. Can't even think further ahead than getting chemo done at present as my outlook depends on zapping the liver mets. Just feel I am going round in ever decreasing circles and really getting nowhere fast!
Have a good day everyone, if you can. Sorry I feel rather pessimistic today. Just up and down with what has happened. having a bit of a wobble!
Take care, Jane.x
sorry If I missed anyone, not all the names come up in the list.
not been on here much but been keeping up with you all.
I've had quite a week. Passed out and went down hard on my face so I’ve had a thick lip all week. Went for a PICC on Monday after it happened and then to then to get thoroughly checked out and given the all clear.
I have continued to feel faint all week so mentioned it when I went in yesterday. Bloods all still fine so they think it may be blood glucose related and advised me to eat more often.
I’ve had a bit of a nightmare trying to sort out someone to flush and change the dressing on the PICC asked if they could do it same time as chemo as it’s weekly but they said no. It only takes 2 mins! So now have to wait in for district nurses on Tuesdays. I’m still trying to work so it’s not great. I have next week off with my husband and the only days we can do anything is Monday and Wednesday (socially distanced activities like fish and chips in the car walks etc) All other days off with covid swab Tuesday bloods Thursday and chemo Friday.
I have the same time slot every week for chemo. If you ask I’m sure they will change it for you. I was concerned about fridays as I feel I spoil the weekend for everyone who works all week, but decided to stick with it as I’ve got some sort of routine going now.
I’ve been trying to up my exercise but with feeling feint I can’t drive and really need someone with me at the mo. We used to live in Derbyshire, love the peaks. Live in Bournemouth now so still plenty of walking options.
My mouth was sore a couple of weeks ago but I’d had a binge on satsumas and I think they’re to acidic so gave anything like that up.
I can’t really taste sweet stuff either, think I’ve lost those taste buds.
hair is starting to thin now so getting my snoods ready.
sorry to hear about your reaction @Magenta59
hope they work something out for you!
I’m also off HRT but not been missing it to much in the way of symptoms. Not sure which hormone treatment I’ll be having afterwards but not looking forward to that.
still taking one day at a time.
we’ve come so far already and it feels like it’s going quickly. 8 more to go for me.
we can do this 💪🏻💕
sending love to all xx
Hi @louby_lou69 , thanks!
good to hear about your walks in this beautiful part of the world.
If any consolation,my husband had spinal surgery for slipped disk a few years ago and when I went to see him in hospital he was finally walking ( after 6 months mainly lying down). Hope is the same for yours and he will be looking after you, lol!
I hope the echo is normal and trip to hospital not o boring....
You put a @ and it gives you a list of names of recent posters and then you choose one.
My walking is a lot less than it used to be. Me and my partner used to walk most weekends 10 miles or so round the Peak District near where we live. We haven't been walking for months since his sciatica flared up worse than ever in May.
He's got spinal surgery on the 21st just before chemo #2 so that will be an interesting week in our house.
Today I've got to go for a heart echo, they rang yesterday and offered me an appointment so it's a an hour or so at hospital this afternoon! I seem to be there every week.
@louby_lou69 I have found the same first few days are crap, not helped by meds I have to take for a week following treatment, they make me feel like pants, but at least we know what to expect now and can mentally prepare for it.
I am not allowed in a supermarket oncologist told me to avoid them and to basically sheild (COVID cases are high here atm) so it’s down to my other half but my lord I do miss it. Hubster rarely shops off list, thankfully my eldest son is a shopper so when he is about at weekends I get treats 😂😂😂
Jigsaws and maybe a walk on my agenda today to although my 55 year old right knee seems to have joined your hips and it’s giving me pain. Sue xx
Hi , louby_lu69,
by the way, don’t know how to get you names is red here when I answer a post!LOL
I am amazed at your number of miles. I used to run 5 k a week and sometimes had a swimming session during the week. I am worried when starting again on letrozole, and already off the HRT. However I am determined to carry with some much stronger exercise challenges to boost my morale and improve my well being.
At the moment, however, not much going on. Went to swimming pool 2 weeks ago on the second week post chemo and managed only 10 or so laps, but was worth if for my wellbeing.
All the best to you all ladies,
Hi @veestar ,
Mine is three weekly and always the same day but not the same time. Must admit I asked for a schedule before it all started as I work for my self employed gas technician husband and this time of year is our businesses busiest time, it has meant he can still work (thank the lord as otherwise I do not know how we would survive financially) I also I have a son with ASD and my chemo day is his only whole day at college which means I do not have to worry about him whilst receiving treatment. Hope this helps.
How is everyone doing? Holding up? Don’t know if I am alone in this but I have found I am eating for England! Breast cancer survivor friend has told me it’s the steroids, the plus point to this (never thought I’d be writing anything positive about this shit show we are all enduring 😂😂😂) is that I don’t appear to be putting on weight 😃. Some foods I love though taste metallic and go on the avoid until ‘normal’ list. My mouth especially my tongue have been really sore as well so crisps and toast have been put on the back burner for a while. From memory think Tangtastics were mentioned in an earlier post did they taste the same? As I love sherbert fountains but had one yesterday and it was like eating chalk with a twig so again something else I’ll now avoid 😂😂
Enjoy your weekend ladies, much love Sue xx
mine are every time on Tuesday, but either early morning or late morning.
Mine is a short infusion and I think 11 am start is ok. I ended up arriving 30 min late last time because I thought my slot was at 9:30...
I am finding more taxing the overall number of appointments hospital or not (including to arrange extra things like dentist, Wig, prosthesis and braw fitting,extra support, etc). Also, all arrangements around all of this, ordering stuff, etc.
It has been overwhelming as I do not have family around and husband busy or not great at supporting. Have good friends though and they help a lot. I also have been working , so , maybe that also has been hard.
Anyways, at least did not have to cancel any session due to side effects and that helped.
I just finished my 4th cycle on Tuesday, feeling rough but still here...
I hope next appointment is at the same time for you. I think what we feel is the lack of control?
Hope all goes well, xxxx
great to read your posts it’s so helpful . I am week 4 next Tuesday . Quick question , do you ladies have chemo on the same time & same day each week or will they change it ? my appt times are different every week & i m finding it frustrating !😳
Day 8 after cycle 1 and feeling more or less back to normal. So it appears days 3-6 are going to be my rough days, at least I can now prepare myself mentally for that next time.
Been to do a food shop, mask and hand sanitizer used about 10 times. Then I’ve been for a walk, clocked 4 miles but my 52 yr old hips were really aching by the end. I miss my HRT and worry for the future when tamoxifen becomes it’s replacement- but, not thinking that far ahead.
Not much happening this weekend, TV, jigsaws and reading.
hi @Mrsmillie @louby_lou69 and everyone here, feeling okay on a daywhen the side effects of the missed Docetaxel would have been hitting me. Seems like the Phesgo side effects, which were almost identical are much milder! This is good to know when I will be on it for ever and needing to get back to work! Nothing amiss at the moment so quite relieved.
Lovely morning here.Been outside tackling rust on my car doors-had the small belt sander going to get rid of the worst and treated with Kurust. Next job priming and repainting. car is getting on a bit but can't afford another and I will just run it until it dies. If it sees me through to retirement and my endowment maturing, then I will be happy. It is a great workhorse-4WD Skoda yeti-nothing stops it, brillant in ice and snow and has not failed to get me to work in atrocious winter weather and the roads I use never see a gritter! And she does 55/60mpg any day. You don't see that economy in much smaller cars!
Back to the pony thisaft and getting her eased back into a bit of more demanding work. Good for us both!
Go hold of Psychology yesterday-no explanation of the missed call! Very strange, but they have made me another appointment at least. @Mrsmillie so glad your 4th session went okay with the added pre meds-they thought they might be able to do something similar for me today with my usual chemo, but Dr Proctor is abandoning it as he must deem it too risky, even with extra precautions. Will just have to wait and see what transpires and hope the new drug is authorised in time for my next session. I also had a chocolate craving so cracked open a packet of Sticky Toffee pudding Hobnobs! Rather moreish!
Hoping everyone is having a good day.
Good evening all,
Number 4 crossed off today, felt a bit nervous going after having a slight reaction last week but, with the added hydrocortisone thankfully all went to plan,…. always hungry when I get back, so today felt like a ‘chippy’ fish and chips, devoured it and enjoyed every mouthful, now feel like something sweet!
Hope you are feeling ok today @Magenta59 and managed to get a decent sleep last night after your traumatic session, let’s hope they can get you back on track as soon as, last thing you want is steps backward! Must say even after that fright you still manage to sound ‘up’, that’s a real positive….. Everyone seems to ring the landline even when you give mobile as first choice, hopefully you got to speak to psychologist in the end or at least got a definite new appointment.
@louby_lou69 weather here hasn’t been so great today, but hopefully where you are it was at least good enough to get out to walk for a while as long as you felt up to it after feeling tired yesterday.
Well, I think the galaxy choc in the fridge is calling my name, maybe just half 😂
Take care xx
Oh my goodness that sounds absolutely terrifying, I'm so glad you're ok. I have read that people do react in certain ways to some chemos. So strange how our bodies react.
I managed a 3 mile walk yesterday but spent most of the afternoon and evening asleep. I tried to read but just kept falling asleep. I'm normally a bit of a insomniac so this is very weird.
Love Tangfastics but I end up with toothache every time cos i eat too many! Can't stop once I start and will just chew through a large pack single handed!
I have also got a dry patch on my face-between brows of all places. As you say new stuff just keeps happening.
I have had a pretty bad time today at chemo. Was running late as my Phesgo injection wasn't ready. So anyway we got hooked up to the drip, saline running in and the sterroid dose pumped through. Phesgo arrived so got the jab in my left thigh this week-it hurt this time. waited the requisite 15 minutes to make sure all well, then started the Docetaxel drip. After only 5 minutes, most of which was saline running through, I had an extreme reaction and was going into anaphylaxis.Nurse in the suite had just tunred around from the patient across from me and immediately knew i wasn't right. Apparently my face was bright red! I was burning hot-my ears in particular, blurred vision and struggling to breathe! It was hairy! She immediately asked me if I was okay-and my response was clearly no. I would have been calling her if she hadn't already realised something was amiss.She stopped the drip and rung the alarm. I had the whole department in there in 10 seconds! They had to give me more IV steroids and antihistamines and after about 10 minutes I felt okay again. Unfortunately this treatment is now off the table as it could prove dangerous even with added pre meds and a slower transfusion. My Onc is glad I got the Phesgo at least and says my outlook will not be affected as there is still a residual amount of Docetaxel in my system. He is going to apply for funding to get me Abraxane which is apparently seriously expensive, but a much kinder treatment, and can only be prescribed as a second option where Docetaxel is unsuitable. So back in 3 weeks, by which time he should have everything in place. Just waiting on new appointments and also the cardiology referral is through for 19th Oct. So a bit up in the air yet again. Not sure what side effects from Phesgo alone will amount to-will be interesting to find out as they seemed to list similar reactions for both drugs. I am hoping it won't be bad and that I can get back home tomorrow and have 3 weeks of feeling relatively well. I can get some tasks done at home and move the pony's rehab up a notch as I can get stuck into it for a prolonged period. Longer work and added trotting on the cards! I am sure she will love it! How exciting-we are going further down the track mum!
So a stressful day to say the least. I felt so cross as my own body has conspired to throw yet another spanner in the works. Had a bit of a meltdown when they said they could not continue it, even though I had recovered. It must just be too risky. Well it is what it is and I will just have to suck it up, yet again. This will set me back a month perhaps as we will be starting from scratch again. My return to work is getting further away again, not a prospect I can really afford. At least DWP have finally upgraded my ESA but it still isn't much. Macmillans have very kindly awarded ne a £350 grant. It will pay my coal merchant for 3 months over the winter so a massive help. Financial constraints will mean Christmas is a frugal affair this year I think. You can do without stressing about money with all this other crap to deal with!
A telephone appointment at 10am with the Psychologist never happened-god knows what is going on there! Guess I will need to ring them to find out! Bet the daft buggers have rung my home phone instead of my mobile which is the default number they have. They always ring you on the landline when you are not there, but don't try the mobile. The number of messages when I get home is ludicrous. I am going to stop giving that number out I think.
Haven't got my walk today as it was too late when we got back. Hope @louby_lou69 you were up to it today! I feel like I haven't achieved much if I miss mine. It's just a small thing really but it does so much good in every way. Will make up for it tomorrow! Side effects permitting of course-if there are any. Not sure what to expect this time!
Take care everyone. Despite the mega steroid overload I feel a bit wiped out. I might even sleep who knows. I read an entire James Patterson novel yesterday and started a new one at 3am. " hours sleep last night! Crazy stupid pills! I won't need them on Abraxane they say. That's fine by me!
Ive just got back from my walk. Managed nearly 3 miles this morning. It's beautiful out there.
So weird but my cravings are desperate for anything cold or tarty so on my way home home I called into the shop and bought ice lollies, ginger ale and a bag of Haribo Fangtastics!! Totally biazzare.
I brighter day out there today so hopefully @louby_lou69 you feel up to doing your walk, hope you feel better today……Wednesday has come around so quickly, bloods this afternoon, glad to hear @amy46 that your results have improved, onward for tomorrow….Looking good @Magenta59 , hope all goes well for your treatment today…..I’ve woken with very dry skin on face today, just in one patch,🤷♀️ something new every day, keeps us on our toes.
Have a good day everyone xx
Hope you feel better tomorrow. The weather definitely doesn’t help the mood when it’s grey and wet. Sending hugs x
@Magenta59 You look awesome! Even if you are upside down 😂
I am much better thank you. I went for an extra blood test today to check my neutrophils as they were low last week - 1.3 so we were expecting low again and planning to reduce my dose on Thursday. But….. they’ve made a miraculous recovery to 4.9!!!! What a strange thing the body is!!
good luck for tomorrow xxx
Ive not done much walking today. The weather has been appalling here in Staffordshire and I e not had a great day.
I think the forecast is better tomorrow so I'm hoping to do a few miles tomorrow.
Not sure why my photos are upside down, they were the right way up when i uploaded them. Technology bah humbug. Lol!
Hope you are feeling better today hun. I have felt like I had a cold as such a runny nose,and my mouth was sore anyway. Obviously just another SE as no temperature, headache etc. All weird stuff! Feeling pretty good this week and have recovered well.
@Somerset Bunnybloods all good! Saw my lovely oncologist today and he is so glad i am in a better place mentally than the last time he saw me, and that he hadn't made me too ill! Bless him. So all good to go tomorrow for cycle 2.
@amy46hope you are doing okay and feeling stronger today. We do have some minor wobbles along the way, and the odd major one! As a result of my meltdown last month when I was facing the liver biopsy, I now have a psych appointment over the phone tomorrow morning when I am on the way to chemo! I will not be driving I hasten to add! I will just tell him I am fine now, as to cancel the appointment would have removed me from the system. I might need them in the future-you never know!
@louby_lou69you are amazing to do all this walking when clearly you have been pretty unwell. I take my wig off to you! I didn't get as much exercise today as usual as the weather has been atrocious in York so I didn't go to the pony. I would not have been able to do much and I am afraid I am a fair weather rider these days! Wearing specs I just end up being unable to see much after a while! Not safe! You need your wits about you on a pony that is very spooky and spins around on a sixpence at the slightest provocation! We have fun with flocks of partridges at present,so small you can't see them and they just rise up en masse. They give me a fright to be fair! So I went to the wig shop and picked up a wig I had put on one side as a second choice-the other is on order and free on the NHS. My partner very kindly offered to pay for yjis one so that I can have 2! How lovely. So I went and got it and the assistant kindly trimmed the fringe for me as it was a little long and wispy. Looks okay, but quite different from ny own hair, which is shedding profusely now and getting very thin. I will get used to the new look eventually! Please let me know how I can sponsor you in your challenge as what you are doing is amazing! here are the before and after photos of the hair/wig. I could get used to it!
Hugs to all, Jane,x
@Somerset Bunny It’s funny how suddenly you feel quite proud of yourself just for doing what previously you wouldn’t have even given a second thought to…..but it’s now an achievement in the scheme of things…..baby steps, recline away! Hope all’s ok when your son gets home. xx
@louby_lou69 Its great you have the will power to force yourself out on a daily basis, especially this time of year….it shows great strength of character. xx
@louby_lou69 Wow just wow lovely…. 100 miles! …. let me know too and I’ll donate also. You must be one fab teacher, it’s so nice to hear your pupils and parents are supporting you accept the praise my lovely and draw strength from it xx
I have actually managed a few household chores today and prepared a meal for my husband to finish off cooking, go me ha ha ha, but once again I’ve taken to the recliner this p.m. Mind you I had to deal with my youngest son college this am, as he has ASD and was not told what was expected of him on a NCS course they had put him which zapped some of my strength …. I am hoping for no fall out from that when he gets home later.
Im doing it everyday, I need to walk 3.2 miles a day. I'm up 15 miles now. Just forced myself to go out. I walked 6 miles on the morning of my chemo so I've got a few miles in the bag.
@louby_lou69 That’s a fantastic thing you’re doing…..100 miles, can’t even imagine achieving that! I’m sure all the wonderful messages of support will keep you going. When is this happening? Please let me know how I can donate. xx
Im on day 4 of my first EC cycle.
Ive been so lucky with no nausea or sickness. I have terrible aches from the injections, insomnia (but that’s normal for me) and a touch of constipation.
Feeling the fatigue today.
Im walking 100 miles for Breast Cancer Now and every time someone donates I cry.
Im a primary school teacher and I’ve had messages from parents who have said such kind, wonderful things about me and how they are so happy I taught their children. I spent most of yesterday in floods of tears.
It’s definitely a roller coaster of emotions
Sunday/Monday are my ‘bad’ days, felt really rough yesterday also feel I have a cold coming on…..a nice added extra! Hope by time I go for bloods on Wednesday it’s ok, I think when it’s weekly sessions you don’t feel you have time to pick up fully before the next one is here, but the weeks go by so quickly.
The mental wobbles are so difficult to deal with, they can overwhelm you totally out of the blue, it can seem it will never end when you are in that state of mind…..if you need to cry or scream and shout, just do whatever it takes to get through…..then suddenly just as quickly as they come you realise your bad thoughts have cleared……we will all come out of this stronger I’m sure 😊.
Have a good day xx
@Magenta59 best of luck today with your bloods. Xx I’ve been a bit quiet on here since my first round last Wednesday as to be honest it has hit me for six, indigestion constipation and pain around my shoulders, been in touch with the hospital cancer line more than once. Only three more days of the white cell injections left then hopefully my body will start to recover before it starts all over again and a bit of time for me to hopefully function and live normally 🤞🏻🤞🏻 . @amy46 is so right this is one hell of a journey on your mental health, I will admit I have had several wobbles this past weekend, friends who have been through this experience assure me you come out of it stronger. Hang in there everyone. Lots of love Sue xx
I typed that post about the Dex a bit wrong, it is 8mg twice a day so 16mg in total. Duh! I am going to take them much earlier this time as @louby_lou69 advises. I had next to no sleep last time. It was no joke! I have tried melatonin with no effect. I have tried all sorts of things for insomnia over the years as this is not a new problem, having been like this over 30 years now. Only thing that works for me is an antihistamine at bedtime-the sort that makes you drowsy-benadryl as I have allergic rhinitis and sometimes get such a stuffy nose when I lay down in bed that I can't breathe properly, but it doesn't always keep me asleep for long. Then you are awake with all the worries going round your head for the rest of the night. Wish my head had a power off function! LOL!
Blood taking tomorrow and hope all will be well in that department. It is a bit of a worry as we don't know whether chemo is happening or not at this point. I feel okay and fairly energetic so assuming I will be okay and good to go on Wednesday. When do you find out if it's all okay and going ahead? Do they ring and tell us? Think I might swing through oncology on my way out to enquire. Not taking those dratted steroids for nothing!
Big hugs to all. Jane.x
Thank you Amy those words have really helped. I cannot tell you how much I appreciate your kindness. Lots of love xx