@CrazyCatLady thanks for your lovely message. I hope you get good results back from your scans. I must admit that when the breast surgeon showed me my breast scan it meant nothing. Was almost expecting to see a **bleep** hole on it with an arrow pointing to the “bad” area but there was just a lot of white so I couldn’t see anything obvious at all. The area for me was 65mm (hence the reason for mastectomy as with margins I would have had little left as it was in the bottom half of my breast) which contained 2 lumps and some DCIS. Was told grade 2 initially but after surgery it was a mix of grade 2 and 3. I honestly found the surgery much easier than chemo. Don’t get me wrong I was bricking it beforehand as had never had an op but once i had the anaesthetic the next thing I knew I was waking up again. I got strong painkillers to take home but barely used them as they contain codeine which can make you constipated. Certainly know all about that now on the chemo and like you have both imodium for the trots (love your word!) and laxido (🤮🤮🤮) for the bunged up days. Am sure you will find surgery the same. They couldn’t take from my back to reconstruct so I got an implant. Good thing about that was only one would and no drains.
Thanks for the tips re radiotherapy. Nervous about it and how it will affect me generally and also the implant. I was not concerned about radio at all as was focused on getting through the worst in my eyes - chemo, but now more nervous about it as I get nearer to it. I use E45 over my scar each day but will ask about moisturising at my planning meeting on Wednesday.
Bloods were ok yesterday so got chemo 8 but the day didn’t go without it’s issues. Tummy been aching all week so more visits to loo than normal. I seem to have a day at the weekend where my bowels have a big empty and go several times. This also happened on Tuesday this week and more like the trots after about round 4. Didn’t go at all on Wednesday but had to go at hospital yesterday which is unlike me and was peeing all the time pre treatment. Couldn’t put my finger on it but felt out of sorts yesterday and off colour.
When nurse came to do bloods she missed the sweet spot in the portacath so had to insert another line so being stabbed twice was not a good start. Then I had some flushes (again a bit unusual for during the day so wonder if it was anxiety driven). Now I am nearing the end of chemo it feels strange as will no longer have the security blanket of the nurses.
Cold cap machine was then playing up. Nurse had to put coolant in it befors it would start and then we got going. It also made strange noises and an alarm went off when I had the cap on. Initial 30 munutes hard as usual but then the ache never settled as it normally does so I felt awful and they agreed to remove it. Was left with a huge red dent across my forehead which I have never had before so think the whole process wasn’t right yesterday. Felt like a failure (thoughts jnduced by me not the nurses) as I have endured it each week and felt like I had fallen at the second last hurdle. As my hair starting to come back they were not concerned. However they said I looked pale and grey at one point so I had to lie down fully and try to sleep. They kept checking my obs for the rest of the time but just generally felt weak. They thought it was a combination of exhaustion, dodgy tum and emotion/anxiety about nearing the end of chemo and trepidation about rads - a genetal “off” day for me as they described it. Then had flush after flush too. Took a lot of fluid when I came home but not much to eat as couldn’t face it. Legs felt they were struggling a bit to carry my body around.
Anyway slept a decent amount last night so hopefully today is better! Flushed a lot in night though - I hate the menopause on top all this!
Sorry for the long rant/moan but had to get it off my chest or should I say the 1.5 boobs I have left!
Take care everyone
Love and hugs
Hi @CrazyCatLady , thanks so much for all that. That is so helpful. I’ll definitely keep a list of all the side effects so that they can be managed effectively. I’d much rather know what sort of things to expect. Ondansetron worked very well for me too after the EC, so I may have that again. My oncologist said I will only be prescribed the steroids for sickness as it is usually not as bad on these drugs as it was on EC, but we will see!
I wish you all the best for your op. I had a wonderful experience with my operation and the recovery. It was a completely different experience to the chemo and apart from feeling groggy for the first three days post-op, I felt really well in myself and I have bounced back physically really quickly. I can now do 1.5 hr brisk walks again no problem a month on. I’m not looking forward to the chemo preventing me from continuing with that, but hey ho.
Thanks for your encouraging words - it is great to see you coming out the other side of the treatment.
Congratulations to all of you who are approaching the end of chemo. It is no mean feat to get through it! (Understatement of the year!)
Love to all,
Hi @Kaz11 - hope all went well for your penultimate chemo!!! Last one next week!! Isn't it brilliant to be able to say that 🙂 My last one due next Friday (4 June) which is also my mum's birthday. Like you said, 18 weeks seems like an eternity when you start but can't believe it's now all coming to an end 😃!! Also @Gelbel good luck for your last one today!! Hooray to saying farewell to chemo!!!
Good luck with your radiotherapy planning and for your week of rads - tip I had was to start moisturising whole chest, neck and back area a couple of weeks beforehand to get your skin prepared.
My next step is surgery which they've said will be around 4-6 week after last chemo, so early July (then rads 7-8 weeks after that). I've had my heart and breast MRIs done now so currently on the anxious pacing waiting on results. Hopefully when I speak to my onco on Tuesday he'll have them in....so hoping that chemo has done it's job, but as I said before, not sure if I can still feel my left lump but caught a view of my breast MRI screen and there was the tell-tale white glow on the image 😞 But if may still have shrunk as started out at 21mm....so fingers crossed. Just want the 2 little blighters OUT! Also know still going to be worrying about the SNB results as all indications at the moment are that there isn't any lymph involvement, but won't know for sure until pathology results are in.
So just 7 more days for me till 6/6....can't blooming wait to say goodbye to this stage of the journey. And good luck to those who are also nearing the end. WE SMASHED IT !! YAY 💪 And if you are just starting the chemo stage, it does fly by really...just take one day at a time xx
Take care you lovely bunch and onwards and upwards to the next steps xxx
Love Sam xx
Hi @hopeful1974 / Sian - you will be on the same treatment as me!! TCHP is not the most pleasant but if I can survive it, then so can you!!
We all know how different we can be with side effects, but for me, the first one was the most 'challenging' as I seemed to sort out one issue for another one to pop it's head over the horizon. I did get the chemo trots so get some Imodium in just in case. Then the joys of constipation so also rotating between Imodium and Laxido. Watch out for oral thrush too...first signs for me were the corners of my mouth were sore/cracked and had a sore tongue and then the white patches turned up. GP prescribed some antifungal tablets which sorted this out quite quickly. Unfortunately my initial antisickness weren't very effective so GP topped these up with Cyclizine which I could take inbetween my antisickness pills from the chemo unit. Eventually at Cycle 4 was put onto Ondansatron and these worked brilliantly for me without any top ups needed. Oh and the acid reflex/indigestion/belching was fairly constant so again put onto Lansaprazol for this (wasn't told to take them all the time though...so now take these for the 5 days post-chemo along with my antisickness).
I have had mildly numb fingers/toes but not painful - just frustrating when trying to fasten a bra or buttons. I'd say they are more desensitised rather than fully numb (like when you've been out in the snow and the feeling when you come into the warm when they are coming back to life....if that makes sense?).
From Cycle 3 I did start getting the achy joints (mainly knees and lower legs) so stock up on Epsom Salts as these do help ease it.
Sorry don't want to scare you with my horrid time on it....but once the meds sorted, it's been fine...honest! The did drop the carboplatin for me after cycle 3 as this wiped me out totally (literally plastered to sofa for 8 days and not able to stand for more than a minute at a time). This may have been why I had my wobbles during PICC line dressings, but put on magnesium supplements and last 2 dressing changes have been absolutely fine.
I'm 2 weeks after cycle 5 and this one has been a complete breeze! Just the steroid buzz for 4-5 days but no sickness/nausea or 'digestive' issues. Have my treatment on a Thursday and on Sunday I was cooking dinner....first time I've been able to do this since starting so felt really rather good.
Tiredness does hit quite hard initially, but as long as I pace myself and nap when needed, it's tolerable. Also tried to do a bit of walking which is supposed to help with the tiredness (which is completely counter-intuitive as you just want to lay down and sleep!).
Did manage this week to do a 'proper' bathroom clean (they do try but it's not to my standards lol!). Took me longer than it would normally and had to have breaks along the way, but feels like I'm more or less back to normal. Although next day I was nick-knacked so had a day of doing nothing.
Hopefully as you will be starting on a lower dose, it won't be too bad for you....just write a daily log of everything so you can let your onco know what's been happening.
Good luck with it all and any other questions, just ask xxx
Take care, love Sam xx
I should have added that the Paclitaxel would be fine if I could have it with Herceptin and Pertuzumab, but the NHS does not currently allow this. I really would have preferred Paclitaxel as it seems to be better tolerated by most people I know than Docetaxel.
I hope everyone has had as good a day as possible. xxx
@CrazyCatLady Hi Sam, I’ve just had my meeting with my oncologist to tell me the next part of my plan. I am going to have 6 rounds of Docetaxel, Carboplatin, Herceptin and Pertuzumab. He is going to start me on a reduced dose as I reacted so strongly to the EC last time. I have the option to have Paclitaxel with just Herceptin, but he said that would not be as effective and would give me a much higher chance of local recurrence. After the 6 rounds of TCHP, I’ll continue on with just the H&P until June next year (so a total of a year’s treatment). He has prescribed me a month’s supply of Lorazepam and is happy for me to take that every day if necessary. My plan is just to use it when I need it. I know it helps me through, but I don’t want to take it unless I need to.
So, all tips as to how to get through the TCHP treatment would be appreciated. He said I may or may not get diarrhoea but would be unlikely to get sickness.
Thanks so much for the good wishes for tomorrow and the same to you for Friday.
At the beginning 18 weeks sounded like an eternity and I have not found it quick but can’t believe tomorrow is number 8 of the 9 weekly cycles provided my bloods are ok. Like you I am desperate for it to be over but also nervous. The nurses have become a wee family to me so there will be tears next week 😢. One I am close to is in tomorrow but not next week so will be blubbering tomorrow! As you say I am anxious about losing that support network every week and will be going it alone now. Such a strange feeling and mix of emotions. Was also thrown a bit on Monday as got a call to go for my radiotherapy planning appointment next Wednesday which was earlier than I thought. Made the next part a reality so cue tears as soon as I was off the phone. I need to attend a different hospital for the radiotherapy so that makes me anxious about a new hospital I am not familiar with, new treatment, nurses etc. It’s also hellish for parking so using a volunteer service from a local cancer charity for transport so again nervous as going with a stranger so it will be awkward conversation in the car! Also got my actual radiotherapy appointments in today so it’s Monday 21 June- Friday 25. Only 5 but more intense as am told they are condensing them now so you are not travelling up and down daily for weeks on end. Portacath will also need removed at some point and bone strengthening drug to come. Pills also - think it may be Letrasole as am post menopausal but will see if onco says anything about that tomorrow. Like you will defo do moving on course.
Hope everyone else ok. I am very tired and nose bleeding a lot when I blow it. Indigestion also there a bit and peeling skin on hands particularly at my knuckles. Hopefully these sfx won’t be long in disappearing post chemo then will have the radio sfx to deal with - happy days!
Love to all
Good luck tomorrow @Kaz11 - last but one. Wow how fast has it gone?
Dunno about you but I've felt really quite good this week - my whoozy Sunday was only slight, no bloating, not too much parping. Though sleep has been awful as we're in the spare room (only a double bed) as ours is being decorated. And it's at the front of the house and it all seems very noisy.
Had a good chat with my (fave) nurse yesterday when she checked-in with me - I'm getting a bit emosh about that 100% support not being there. She said it will be but not so in my face. She stressed the Moving on course is there for me and I will be invited after my rads onc follow-up appointment.
My colleagues have put in a call for the first Friday pm after my chemo ends to celebrate. How lovely is that?
How's everyone else doing? Getting excited/nervous about the end of chemo like me?
Love and hugs to you all. 🤗
@hopeful1974 Party at yours! That is fab news. You must be so relieved. 🎉
@Teagold - sounds good for you too. May it stay that way. So with you on the food - all I want (and tend to have) is rubbishy beige carbs. So I've taken to having salad in my sarnies and even eating the odd pear - I hate fruit.
Yes, I will be on Zoledronic acid and Antrazole. I am still moisturising my scar area so I'll take it a bit further. Thanks for the heads up that my Trust might provide - another Q for my list.
Love and hugs to you all. 🤗 We are blooming awesome - to think what we were like in January, scared (some of us scarred!), worried, unknowing etc. To think how far we've come and now, with the odd wobble - but managing them, we're all conquering experts. Go us! 💪
Lovely to see all your messages over the past few days and catch up on your news.
@hopeful1974 that’s fantastic news re your lymph. So pleased for you. What a lift that will give you. Like you I found the recovery from surgery easier than the chemo but I suppose at that time I didn’t know my treatment plan so was feeling more positive. Maybe if I’d known then about the chemo I might not have felt so upbeat!
@CrazyCatLady so sorry to hear about your PICC line issues and your worries about the lumps and bumps. Sounds like you have had quite a time of it. Sending big hugs. Can imagine your mind will be racing so am thinking of you. Great to hear that you have a spa break booked - well jel as the young ones say! I have a lovely spa near me which I can go to for the day and they just emailed some offers yesterday so will definitely look into that.
@Gelbel good luck for next Pax tomorrow and big hugs to you @Teagold too. Hopefully I have covered everyone.
I am not long home after completing Pax 7, now only 2 to go. The nurses all said they can see a difference in my hair and that it is growing back particularly at the sides. Will be a while before it looks presentable- baby steps and all that though. Have stuck with the cold cap so far so am going to see it through to the end.
Onco saw me today so there is going to be a break between chemo and radio for me. Last chemo scheduled for 3 June all being well and radio likely to start w/c 21 June. I will be there the week before for my “pre” appointment where they line you up for the radiation and mark you with tiny tattoos. I will get 5 sessions so one week Monday-Friday. She said they are condensing the treatment now so 5 intense sessions instead of having to go for 3 weeks. She mentioned it could leave a mark on one of my lungs but the benefits of the treatment outweigh this. I do feel there is always some new thing chucked into the mix that I am not expecting and that was it today. As we have said so many times before it’s the gift that keeps on giving.
Likely to get portacath removed pre radio, an appointment with onco to follow, then radio. I think they will also ask me to see the dentist at some point ahead of the bone strengthening drug which will happen post radio via IV. I will also have to take calcium tablets for a month.
BCN also told me today onco will give me letter for GP to get my prescription for my pills which I will start ahead of radio. Think I am post menopausal though I seem to have skipped peri and the actual thing as was on medication prior to surgery which was probably masking the symptoms. Likely to be letrasole she said. Must admit that I had put the pills out of my mind but the nurse told me today I could get sfx like achy joints (I already have a bit of this so not looking forward to years of it). The Ticking off Breast Cancer lady also mentioned this that it’s not just like taking a wee vitamin pill. It is I suppose a continuation of the treatment so am a bit apprehensive about how it is going to make me feel. Anyway I suppose I have to think that the brutal treatment is nearly over. There will be relief but I know it is going to feel a bit weird too and there will be tears on the last day. The BCN told me I am likely to feel a bit lost though I will still have some appointments, procedures, radio and bone strengthening drug to go.
Anyway off to have something light for tea and an early night as been feeling more fatigued this week.
Hi @Teagold - entirely agree ref being told to prod and poke, but I can't help it lol...think the actual 'texture' of my left breast has completely changed and is more lumpy/bumpy and more squishy. So perhaps the chemo has changed it's density...I'm holding on to what happened at my last physical exam when they couldn't find the left lump so I had to guide them to where I thought it was! The one on the right is still non-palpable so we will never know on that one!
Good luck in finding yourself your own spa break....know I won't be having any treatments, but hopefully PICC line may be gone so I can go swimming or relax in the hydropool/jacuzzi 🙂
Heard last week that looks like my trust is rolling out the Phesgo jabs, hence why hoping no more PICC line (they will be so relieved to not have to deal with me anymore haha 😂). Won't know if it's going to be both H&P or just H until after surgery pathology results...but either way should be done by injection and at home by district nurse so less traipsing backwards and forwards to the hospital 🙂
Glad to hear you're doing OK after your first EC - and yes, I was absolutely famished when I was on the steroids! Fortunately my diet is 'reasonably' healthy but definitely needed carbs for the first few days (cheese toasties a regular favourite and have now discovered chocolate milk....oh dear lol). Since diagnosis before Xmas last year, I have managed to loose around 24lbs (but at one point had lost 29lbs so peeved that these extras lbs have crept back on). From starting chemo in Feb, my weight is down by around 10-12 lbs - but like you say, can chunk on a good half a stone in a week when on the roids!
Hope the rest of your week goes well and good luck for EC #2 xx
Love Sam xx
Hi Sian - oh that is wonderful news all round!! So pleased for you xx Onwards and upwards for you now and hope chemo treats you kindly....take everything they give you ref the antisickness and call the chemo line if they're not working (too 3 attempts to sort out the right ones for me).
Good luck xx
Hi Angela....wow, things are moving fast aren't they! I'd guess it's going to be Zoledronic acid and Antrazole??? Good luck with your radiology planning and getting your tatoos (mine will be my first ever - but few months off yet). I've been reading up about skin preparation before rads and seems a good idea to start the moisturising routine a few weeks beforehand and to also do the whole chest and neck area as well as your back. Some trusts prescribe the moisturiser to use but I've also got a stockpile of Aveeno Blue to use as well as E45.
Hope you enjoy your swimming and having a little tipple.....I've managed nearly 6 months now off the booze too (well apart from a very odd V&T pre chemo, or small Belgian beer...oh and trying out a glass of Disarrano Velvet for a sore throat, but it was vile 🤢)!
I'm celebrating my birthday soon too....so our trip away ties in with these celebrations as well as end of chemo and my 2nd covid jab. Hubster's got me a new supply of my Coco Mademoiselle so just hoping it still smells nice on me - been avoiding all perfumes just in case, but can still smell perfume on my daughter and it smells lovely to hopefully sense of smell not been affected.
Good luck with your blood tests...guess I'll have mine once treatment all done to see if I'll be on tamoxifen or one of the post menopause AIs.
Take care and hope the new prescriptions are kind to you xx
@hopeful1974 that sounds like really positive results from the surgery! Can imagine how relieved you must be. How are you feeling?
@CrazyCatLady/ Sam - really lovely to hear from you, though sorry to hear about the dramas with PICC dressings etc. Just wanted to say also sorry that you’re anxious about other lumps and bumps but hopefully the MRI will put your mind at rest. I had a MRI a few weeks back and I’d been prodding myself a bit beforehand (naturally, having been told by the docs not to etc...) trying to work out whether any change, and although I thought things were different I could feel quite a firm and bumpy area still which was freaking me out. When I saw the surgeon she had a feel and said this was actually just normal boob tissue and that the reason it felt different to me was because there was so much change going on due to the chemo etc. Your mini break sounds fab - we’ve just started doing a little research into spa hotels for July too hoping for a few days away, would be so lovely to get a break before surgery.
So I’m on day 7 post EC and generally have been ok since first night. I do wonder whether the blood transfusion helped as haven’t felt so tired and breathless, those extra red blood cells must be doing some good! Had a horrible shock yesterday when I got on the scales and realised somehow I’ve put on five pounds just since last Friday - steroids? Water? Or just being very greedy???!! I’m like the lady in Ticking Off, in that the food I most fancy is the least healthy - pies, quiche, cheese, chips, pasta etc. Everyone says oh don’t worry about it it’s the least of your worries and of course I know that but still found it hard.
@Gelbel between the leggings and the hair you are sounding very stylish and foxy! Great that you’ve been enjoying work. I have to say this week I’ve been really switched off - I did quite a bit the past couple of weeks but thought I’d keep this week clear to see how I felt after first EC. I just got a massive envelope through from HR of insurance forms I need to fill in for them - haven’t been able to face delving into that just yet, maybe one for the weekend!
Hope everyone else doing ok this week, sending hugs.
@CrazyCatLady Thanks for the tips. I think I’ll be on Paclitaxel with Trastuzumab (not sure about Pertuzumab as I’m having it post-surgery and they only usually give that one pre-surgery). I’ll probably be starting it in mid-June.
Big news today is that I had my meeting with the surgeon and he told me the results of my surgery. There was no more cancer found in any of the 17 lymph nodes he removed. So, my treatment plan remains the same. My tumour was Grade 2 rather than Grade 3 (which it was when it was biopsied). He said this may have been thanks to the chemo having an effect. He said that it was the right decision to have a mastectomy as the DCIS next to my tumour was larger than he thought. So, a lot of relief here today.
I hope you all have a good night’s sleep. xxx
Hi @CrazyCatLady / Sam
How lovely to hear from you. And apart from being a bit generous with your sick 🤮 and iffy PICC reaction, all sounds good. Enjoy your break.
Well, things have moved fast here... saw one of my team's doctors yesterday and talked rads and tablets.
Bone and hormone tablet to start in 4 weeks. They've been subscribed so I'll get them on Friday. I do have the names but I'm very chemo brain as work is mad (but loving it). The bone one starts with Z and the hormone A.
I'm having blood tests to confirm I'm post menopausal as I've never had any signs nor symptoms. My periods stopped after a procedure when I was 38 so no obvious signs there either.
Rads appointments came thick and fast this morning - measurement whatever it's called one in 14 June. We're going to see my family 20 June for a week. Then rads from 28 June to 16 July.
Swimming and a drink will be birthday presents to myself at the end of July. Of course I can drink before but I might as well do a full 6 months' abstinence. 😇
Talking of chemo brain, I've learned how it's linked with how tired I am. So's hubby!
I do hope everyone is doing well, safe and comfortable.🤗
Love AnGELa x
Aww thank you @hopeful1974 /Siân - hope your recovery is still going well. Sorry to hear you've had the hot flushes start - I've not yet started the joys of enforced menopause but sure once they put me on tamoxifen that'll come. My husband is the one with the night sweats (perhaps he's having them for me lol!) so we have a mini air-con unit next the the bed which was wonderful when we had the hot weather last year. Also heard about using a cool bag freezer pack wrapped in a couple of pillowcases and then put under your pillow (so you are not lying with your head directly on it) and it stays cold a lot longer than the gel pillows or a cold water bottle. My daughter has also brought me a hot and cold mat to lay on when needed (hot for the muscle aches and cold for the flushes)! Either pop it in the freezer or microwave...not tried it yet though but it's pretty big so would give good surface coverage 🙂
Good luck with your chemo...the first one can be a very long day so take plenty of drinks/snacks and something to keep you busy (I was mainly on Facebook or reading!). Do you know which regime you'll be on? If you're on TCHP (Docetaxel, Carboplatin, Herceptin & Pertuzumab) give me a shout as this was (is) my treatment.
xx Sam xx
@CrazyCatLady How lovely to hear your news. It must be wonderful to have the end of chemo in sight and a treat planned! That is really interesting re the magnesium. I’ll bear that in mind if I get twitchy! I’ll be starting chemo with Herceptin some time after mid-June. I personally found surgery much easier to deal with than the chemo, so hopefully you will too. Siân xxx
Good morning everyone....sorry I've been lax again doh! But generally all seems to be going ok (well, apart from another wobble fest during last PICC line dressing lol!). Yet again had a bit of a collapse and appears I threw up whilst I was unconscious so yet another lovely hospital garment to leave for home in (getting myself quite a collection going now haha)!
So plan is they'll be lying me down for this weeks dressing change - but I'll bring in one of my new snazzy NHS PJ tops to change into just in case.
Have now had my first follow up heart MRI due to H&P but don't know results of this as yet. They did however put me onto magnesium supplements after last chemo on Thursday so may have a bit of issue with heart (or it may be to help with all my lovely twitches in eyes, hands, feet and calves!) Anyway, appears magnesium deficiency causes a multitude of issues so upping my green leafy veg, nuts and pulses (the good news is that dark chocolate is a good source of magnesium...normally my go to choccie but not at the moment due to it tasting like soap!)
Also booked in next week for my breast MRI to see how the chemo's been doing and in preparation for surgery (which all being well will be in early July). However, not sure if I'm imagining it, but I can feel more lumps in my left side....it could just be that because I've lost some weight, and I'm more aware of lumps and bumps, that I'm feeling more?? The main lump is hiding generally behind my nipple so really difficult to actual pinpoint it and get an idea of whether it's got smaller or not. But when I do manage to feel this lump, it's like there's a string of other lumps when you move across. Trying not to think about it too much (yeah I know!) and will wait and see what happens with the MRI next week so fingers crossed!
I've also now organised my post-chemo treat!! Have booked a 3 day spa break in Yorkshire along with hubster, my mum and a close family friend. Thought I'd get something in before surgery so off in middle of June and just hoping they'll not organise me any appointments during these 3 days. So planning trips out to Whitby, Scarborough and possibly a shopping trip in Beverley!
I also have my two granddaughter's visiting me on 12 June which will be the first time since diagnosis in December and I absolutely cannot wait....they've been staying away until I finish chemo so have only seen them through car windows since Xmas 😞
Also managed to have a couple of garden visits from family in last couple of weeks which has really bucked me up. Just nice to be able to sit with a cuppa and have a proper natter 🙂
So countdown now to last chemo is 18 days....roll on that bell ringing moment!! Gonna get my hubster and daughter to come for that so I can record the moment....there will be a lot of tears!!
Hope you are all doing Ok and treatment going well xxx
Love to you all xxx
Wow @Gelbel that’s fantastic re your hair sounds like it is coming back in well! So pleased for you and will give you a confidence boost.
Mine is not quite at that stage yet. I didn’t shave mine all off at the start so it was difficult for me to tell if new hairs were growing or it was older ones which had broken off until the nurse confirmed it was new ones. It still looks pretty sparse to me as I can still see a lot of scalp. Mine mostly growing in silvery grey. Hopefully some dark ones mixed in as a lot of dark ones fell out which I didn’t realise I had. It’s certainly going to be a long time before it resembles anything like it was.
Hope you have a lovely time on Monday. It’s good things are starting to open up again although the new covid variant is making me nervous. I hope they don’t lock us down again as I feel I’ve been stuck in long enough. I am still a bit nervous about going out until I have chemo out of the way. Enjoy the hugs too I have missed them so much.
Glad the rugby was fun and I am sure you looked fab in your leggings - go Gelbel!
Enjoy your evening.
It doesn't hurt thanks @Teagold deffo not op related.
@Kaz11 yeah on your hair! Mines still growing nicely. When I say nicely, I mean dark at the sides and back and grey or white from the fringe to where the skull starts to go down at the back and sides. If it was dark all over, I'm close to going wig/hatless. If I say so myself with heavy dark blue or green eye liner it's quite a good look. I rarely wear either in the house now and can pull on my gym wig in seconds if I want to turn my video on for calls at work.
Enjoy Wednesday. 5 of us are meeting inside our local on Monday for a quick slurp. It's not been open since the last lockdown as they don't have a beer garden. Then when we leave we'll have a hug outside as we part to go our homes. Bar me they've all been jabbed twice for a while so I'm happy to do it.
Rugby was wonderful except I ended up wearing pleather leggings as the only jeans leggings that fit my ever expanding belly were in the wash. So felt like I was trying too hard. They kept me warm and dry though.
Lazing around now watching not a lot on TV with hubby.
Happy evening one and all.🤗
Love AnGELa x
Aw @Teagold sorry to hear about the mice that’s awful. Makes me shiver thinking about it. I too had “signs” of a little furry creature having been in my kitchen. I was scared to put down traps as didn’t want to deal with the aftermath! 🤮. Ended up buying something on amazon that gives off a sound which we can’t hear but is supposed to scare them away. Fingers crossed it works but if not like you I will be calling pest control. As if we don’t have enough to deal with.
Thanks girls for the advice re anti nausea - will keep a close eye on it. Not too bad this morning and managed normal brekkie etc 🤞 but coming off steroids is always the Moment of Truth!
Great to hear you’re feeling stronger @hopeful1974 and getting some exercise is always a boost. I managed to be pretty active last week and it was lovely, thought I’d get some exercise in ahead of this week in case I felt too rubbish to do much! You’re doing amazingly, an inspiration for me as I still have my surgery to come.
@Gelbel sorry to hear about the swelling - hope it’s not too painful? I had something similar around the same stage of Pax, and it was tender under my boob when I lifted my arm or stretched. Could also see swollen ridges. I showed it to the doc who reckoned it was lymphedema or just some localised swelling connected to the chemo. It wore off after a couple of weeks. But sounds like yours comes with other audible symptoms that suggest something else 😂- all these charming side effects eh! Hope you enjoy your rugby today.
And to add to the fun, just this week discovered a mouse in our kitchen - ugh! Neighbours having building work done which is always a classic trigger. Traps down and two caught so far so pest control next week - don’t want to take any chances if I’m more at risk of infection etc.
Have a lovely day everyone.
Great to see all your updates.
@Teagold sorry to hear you are not feeling good after the EC. As @Gelbel says take all the anti sickness meds going. I had Emend to take for a couple of days (I had the first one on treatment day), then had another to take for several days - Kyril I think. It’s proper long name begins with a G. Was also told that the steroid Dexamethasone had some anti sick properties too. I had Metoclopramide as a just in case but during EC the nurse told me to take them for the first couple of days. All in all was rattling but it helped.
Pax number 6 was ticked off on Thursday so 3 to go now. Had a relative staying with me last week so was a bit paranoid about germs but thankfully got the treatment ok. Am trying to keep up the red meat intake to help my red cells.
Although I have not seen the oncologist for a few weeks I spoke to the nurse about when I will get the bone strengthening drug and radiotherapy etc. I thought it would all be continuous as the onco indicated but the nurse said a patient similar to me went for radiotherapy straight after chemo (this is what the onco indicated to me) but was told after her initial appointment to line up where her radiation would go etc that she will wait 3 weeks. I don’t know how many sessions she is due as I am either getting 5 or 10 but was a bit deflated after this as I just want it all over. Apparently if this other patient is anything to go by I will get my bone strengthening drug post radiotherapy so it appears things are going to drag on for longer than I thought but will need to wait and see. It might be different for me than the other patient. Portacath will also need to be removed at some point. At times it feels like all this will never end.
Glad to see you have not lost your sense of humour @Gelbel re the wind! I am having a bit of that too though not on the scale you mention. Had really painful heartburn though after pax 6 on Thursday. The pasta dish I had for dinner kept coming back on me and the acid reflux was awful so it was back onto omeprazole yesterday which I haven’t needed since finishing EC. Hey ho! Cheeks were mega flushed yesterday like they were on fire and above my eyelids was also red which was new from last week. Also noticing lines across some of my nails even though I have been rubbing polybalm into them religiously since the beginning. Wee hairs growing back on my head though which is a positive.
@hopeful1974 hope you continue to get stronger after your op.
I am reading the Ticking Off Breast Cancer book which was recommended. So spot on and can relate to so much in it. Have had a few tears shed reading it. Would actually have been good to have read some of the info before but can’t thank you enough for the recommendation.
Enjoy the rugby @Gelbel. From next week I can actually have someone in my house so a friend coming for coffee on Wednesday which will be great.
Take care everyone
@Teagold there are other anti-nausea meds they can give you if you’re aren’t adequate. For me, the ones that worked best were the Dexamethosone and the Emend. Ondansetron also worked but I think it gave me palpitations. Try to note down what you had and when and you should be able to work out what works for you. I hope you feel better soon. It took me about 5 days to feel better on my first round of EC but I think it totally varies from person to person.
I am doing well after my op, thanks. I am healing well and getting some more movement in my arm. I’m still being very careful as I don’t want to develop lymphedema if possible! I am able to walk for around an hour each day now with no problem which is great as I love my walks! They help me mentally so much with the whole process. I am still sleeping without sleeping tablets. I wake up twice a night on average feeling very hot, which I assume is the chemo-induced menopause!
I hope you all have a good day.
Hi @Teagold sorry to hear You are not feeling brilliant. Make sure you keep on top of the antinausea tablets. If they don't work mention, to your team so they can change them to one's hopefully will - it's all a little bit of trial-and-error.
How are you @hopeful1974?
And how are you after #5 @Kaz11? Nearly done!
Since Pax #4, I am bloated at the top of my tummy under my boob. My team are keeping an eye on me. I think after much deliberation it's a lot of very trapped wind. OMG TMI - Me and my husband were lying in bed killing ourselves laughing in the middle of the night - it was like a giant herd of cows on one of those massive US farms. If I'd recorded it I could have made an album. There's probably a niche market.🤣
I've a face to face with one of the onc drs in my team on Tuesday. I've a list of questions as long as my arm. Including when can I go swimming and when can I start drinking grapefruit juice again?
So excited 🤩 Because of my volunteering I am allowed to go to our team's rugby match today to report on the match. It's been a long 15 months!
I hope you all have exciting weekends.
Love and hugs 🤗
Just wanted to say hi and see how you all are and how everyone’s week has been?
Had my first EC yesterday, and a blood transfusion thrown in for good measure because my Hb levels continue to drop. Was all ok except meant a very long day and didn’t finish until 8pm so will be taking it very easy today. Felt pretty 🤢 last night but not too bad this morning though will just have to see how it goes. One down, three to go...
Hope those with treatments all ok this week and @hopeful1974 hope recovery from your op is still going smoothly.
Lovely to hear from you @Linda1967 but so sorry about the extreme tummy reaction and hope you are able to get some reassurance from your doc next week that they can adjust your treatment. Can completely understand this making you feel frustrated and down, hopefully once you will have a clear plan soon and I’m sure that will help. In meantime hope you are taking it easy and being kind to yourself.
@hopeful1974 thanks for sharing about your surgery, I have been thinking one at a time might be easier in terms of having one good arm to work with! Will mull it over and discuss with surgeon again early June. I’ve got so used to only thinking in time increments of one week since starting chemo that I think half the trouble is I just can’t really think so far ahead as July/August, it’s too remote. Normally I’m a big future planner so this is a total shift for me, a kind of non-physical side effect of treatment I guess!
@Kaz11 I couldn’t agree more on the friends thing - one of my lovely friends has sent me a text every single day since I was diagnosed, and doesn’t pause if I don’t reply for a few days she just keeps going. We can’t see each other as live too far away and I’m not really a phone chatter, but I love the texts. I’ve sent her a big bunch of flowers to say thank you. Another fab friend has brought over a meal most weekends - just doubled whatever she’s cooking for her family tea and dropped it off. Without being asked. I hope I will remember to do lovely things like this to friends going through trauma. Obviously the slight downside is my kids now think she’s a better cook than me so not sure how they’ll react when it ends 😂.
Long day at hospital what with two hour wait for bloods then the whole cold cap malarkey. Not helped by me turning up at 10 for an 11:30 appointment (slippery fish syndrome again!). At least I didn’t walk out with a needle in me this time. Seriously considering clipping the hair before I start EC next week - each week feels less worth carrying on with the extra time and hassle of the cap given how little hair I actually have now.
Anyway, nice hot bath ✅, head defrosted so Netflix and bed.
Hope everyone has as good a night’s sleep as possible.
p.S. @Gelbel I dozed off in the hospital today and pretty sure I was snoring, chuckled remembering your post about hearing people doing that!
So sorry to hear this, Linda. I hope the oncologists arrive at a suitable solution for you. I would have thought they would see things like this all the time so I would keep on at them until you are happy. Xx
I had a single mastectomy with full lymph node clearance. I chose not to have reconstruction as I am very flat-chested anyway so there is not a great deal of difference! I thought I might have both sides flat in time as it would be good to be able to go bra-less but my surgeon was not offering that at this point. I am quite glad now as I am finding my left (non-mastectomy) arm useful for lifting things and getting myself dressed, showering etc. There is also the risk of complications from the surgery plus a risk of developing lymphedema in that arm too so I think I’ll just leave it for now. I can always change my mind in the future and go back for reconstruction or a mastectomy on the other side. The surgeon has said he could do either if I wish.
Glad to see you are all doing well and ticking off the weeks, and I’m glad to see that @hopeful1974 sian’s surgery went well.
I haven’t posted for a while, as I was feeling a bit frustrated and low. My tummy troubles got significantly worse. When I went for my second taxol treatment I had a chat with one of the nurses explaining my symptoms and showed her that my tummy was very swollen. They spoke to consultant who sent me for an X-ray, which showed that my tummy and bowels were irritated and inflamed. Clearly my body doesn’t like Paclitaxel at all. I then had to see a gastroenterologist a week later, by which time symptoms had eased significantly. Just means now that my chemo has gone on hold for a few weeks until the oncologist comes up with a new plan as I can’t go back on taxol. In the meantime still continuing with herceptin and perjeta.
the whole experience has left me feeling a bit lost and deflated, like I’ve taken one step forward and two steps back. I’ve got an appointment with my oncologist on Monday to figure out next steps. Hoping for a smoother ride from here.
sending love and positivity to all of you
Good morning everyone!
Great to read all your posts this morning. As usual I was a bit wiped post treatment so just awake. Was planning to get up at 8 to do some work but the best laid plans and all that… I am enjoying doing some work and took the nurse’s advice and split my day’s worth of hours across 3 days which makes it more manageable. Doing a report at the moment so not really sending emails which is maybe just as well as my chemo fog is there big time. Such a fantastic description @Teagold re the slippery fish. Sooo get it. I am usually as sharp as a tack so have to keep checking messages - yesterday in a text I put pisted instead of posted. Quite funny I suppose but need to be careful I don’t type anything dodgy by mistake! My friend says this is hormone/menopause related too as even out walking with her I have struggled on occasions to get the correct word I am looking for. However there is hope as I was speaking to the Someone Like Me lady the other day and she says the chemo fog goes once treatment is over. She also gave me reassurance in other ways as I said I felt I was finding things harder as the treatment goes on. She said she felt the same as it felt like a marathon getting to the end (18 weeks of treatment sounded such a long time to me at the beginning). Some days she felt anxious and hopeless so I didn’t feel so bad after that. She also had the bleeding nose.
Thankfully last night I had no itchy hands so hopefully this new cream has done the trick. Never thought @Gelbel that I would need to think about scratch mittens at my age - I thought they were only for babies!
@hopeful1974 was going to ask how you are post op so am glad you are feeling more positive and don’t need the sleeping pills. That’s great news and glad you are getting to do what you want and spend quality time with your Dad etc. This whole rollercoaster we are on tends to put a lot of things into perspective doesn’t it and you realise what is important. For me I so realise who my real friends are (to be fair it was the same when I lost my Dad 2 years ago) so will focus on them going forward and the fair weather ones can take a hike. I need people I can rely on.
@Gelbel am so glad you are feeling so positive about everything sounds great. I am going to take your inspiration for increasing my working hours going forward when the time is right however I will still use my wigs even around friends. Am not brave enough to display my Max Wall look to them just yet! Have only let a nurse friend see the real look so far. Great re your bras too and Breast Cancer now also offer a course on moving in post treatment which I will defo be doing.
@hopeful1974 I had a quick look at the website for Ticking Off Cancer so thanks again for that. Lots of useful info. As you are aware my anxiety has been rearing its head on and off so it was reassuring to see on that section that she said she was not aware of anyone going through BC who had not suffered anxiety or mental health issues as a result. Not surprising really particularly as we are having to deal with it at the same time as a pandemic. That’s what I found hard as well @Teagold watching the Vic Derbyshire videos as I could not relate it to my experience. As you say at one point she was getting ready to go out to a party and socialising all the time which has just not been possible for us. Not being able to have friends come in to see me during all this has been the hardest for me. Even a nurse at the GP surgery when I went for my vaccine told me she’d had BC but all her friends came round at night after their work to support her. Again not possible. If you think about it we really have had to endure all this at the most impossible time so the fact that we are all still standing as Elton would say (it is now my signature tune) is a massive credit to us all. Going to buy the Ticking Off book @hopeful1974 as I think it would be good to read and reread for me as I will highlight bits relevant to me and refer to them again. I sometimes prefer that to reading on screen all the time.
@Teagold I too am having my greety moments so don’t feel bad about that. You are getting a massive amount of info to absorb at the moment re surgery so it’s a lot to take in and you have to take time to decide what is right for you. I found the thought of waking up with nothing post surgery too much to bear so got reconstruction at the time but totally respect that’s not the right decision for everyone. I know of someone locally who had one mastectomy done at a time as her surgeon was reluctant to do both at once and wanted her body to recover in between. However did @hopeful1974 not get a double mastectomy? Apologies if my chemo brain in action again and that’s not the case.
Good to know @Teagold that it’s not just me with the iitchy hands on Pax as you say must have been a bit of a reaction. Nose still bleeding too. Trying not to do a trumpet blowing as you say but sometimes it needs a good clearout - yuch! Sorry about that if anyone having breakfast. Also it’s good to get a reminder from your nurse that hormones also all over the place at this time so tearfulness is normal.
Anyway now who has to apologise for the rambling message!
Take care everyone
It’s really good to read these posts and @hopeful1974 and @Gelbel your upbeatness (if that’s not a word, it should be) is infectious! Sian, really glad to hear you’re feeling well and managing without the sleeping tablets etc. I know what you mean re the book, she seemed to have a way of pitching things that chimed with how I was feeling - the Vic Derbyshire book was great too but she was so busy and active and worked all the way through chemo, still went to parties etc, that at times I felt a bit pathetic by comparison for having been a bit more tucked away from real life, had to remind myself that we have been in lockdown for most of the time I’ve had treatment!
@Gelbel it’s great to hear you’ve had such a good week and also really helpful info re bra stuff (and Vaseline! I def need to try that as I’m afraid I’ve been a bit of a trumpet-blower and not sure it’s doing me - or anyone around who has to listen - any good 😂).
Feeling better physically this week than last though still ropey through the weekend - realised I’d somehow forgotten to take anti nausea meds and hey presto as soon as I started again - even just one a day - felt more human. But the chemo fog! It’s really catching up with me. It’s like I know there’s a thought/word/fact in my brain somewhere but trying to pin it down is like trying to catch hold of a very slippery fish in a murky pond. Still been randomly quite weepy this week - got a call from a counsellor who is going to give me some sessions later this month and she said all v normal etc etc and that being a bit tearful - aside from reaction to everything going on - can also be a side effect of chemo and not to forget hormones all over the place at the moment which I’d forgotten completely. So I am “going with it” and having the occasional big bawl when the urge strikes, so to speak, to try and get it out of my system.
Had an appointment yesterday with the local NHS genetics clinic - a full on three hours seeing various different teams. Useful - and I can take part in some research studies etc so feel good that at least my dodgy gene means I can do something to help other people - but also saw the surgical team there, different from the surgeon I’ve already seen, and talked about options and reconstruction with them. Got more info, some of which clashed a bit with what I’d already discussed with my other surgeon. Basically I have to decide whether to go double mx sometime this summer, or one side only now and either close monitor or do the other side later. Yesterday’s surgical team think might be better to stagger and do two ops - shorter op this summer, easier recovery, see how it goes etc etc. This sort of threw me as I’d just assumed better to do all in one. So came home feeling a bit confused and unsure. I seem to be collecting a library of leaflets about it every time I talk to someone but haven’t actually managed to read any of them yet!
@Kaz11 sorry to hear about the hands - you reminded me that in my first few weeks of pax I used to come home with REALLY itchy hands but don’t get it now. Pax also makes my top lip and gums and bit numb - nothing too major but I guess maybe it causes some sort of mild allergic reaction. Hope it calms down for you. I had a bit more “tingly hands” this week - more on one side than the other - eased off a bit but I’ll mention it at the hospital today. Heading in for #12 and last pax today, feels v strange to be completing phase one as when all this started it seemed impossibly far off.
Apologies for v long rambly post, thanks for reading this far if you did! Hope everyone is feeling ok, big hugs to everyone.
@Teagold Thanks for the book recommendation. I bought it and devoured it over the course of 24 hours! I felt like I was reading about myself throughout so it was very reassuring.
@Gelbel I am glad to hear you are feeling so upbeat. When things start to go right, it is the best feeling. I am feeling upbeat too at the moment as I am feeling well in myself post surgery and really enjoying the little things such as watching films with my Dad, going on short walks, doing my needlepoint and chatting to friends outside or online. I have not had to use my sleeping tablets for the last 10 days which is a huge relief, as I think the GP would have tried to get me off them soon anyway. I have found hope again that I will one day feel semi-normal. I still have the second half of my chemo to come in mid-June, but hope that I will be in a stronger place now to face that mentally and physically.
Sending you all big hugs and lots of love. Siân xx
Yeah @Kaz11 - over halfway now! And hair, that's brilliant. 🖐
Your hands aren't so though. You need some mittens. 👶 I hope the antihistamines work. Hopefully any you had before today's Pax will help.
I'm so happy today. Doing really meaningful work this week and lasting all day without wilting. Though this morning I was so chemo brained, I couldn't get words out on a few calls. 😳
I feel really well, even with my snotty nose 🤧 and blotchy face.
But the best bit... I got my ordinary underwired bra back that the prosthetic team sent away to get a pocket sewed in. Booming marvellous service that's given for free here. I gave them my favourite one which is ivory and they only put in an ivory pocket in. It must be made to measure as it fully fits the cup. It's like one of the softie holders with a big back opening flap and side opening.
OMG. How comfy? I'm aware of the wires - Jeez, not worn a bra like this for 5 months, but it's not rubbing on my scar or anything like that. My proper prosthetic is not half as heavy, the bra hasn't shifted once all day, the side's not rubbing my fat at the end of my MX scar under my arm. As an aside I still can't understand why they don't do a bit of lippo for you when they do the op! 🤔
The best bit is my real boob look amazing as it's got the support I need.
I've been quite hands on all day. 🤣 I'm absolutely delighted.
TBH today I'm thinking no to a recon. Not that I've had a proper think yet.
I called my BCN team to thank them (they said no one bothers so they were happy with that) and they're sending me a few forms so I can get the rest my bras done and have some spare for when I get new ones. That won't be for ages as they are all fairly new.
The lady I spoke to is also going to check I'm on the list to be invited to one of the moving on courses once I've finished radiotherapy. It seems, again here, we automatically get invited and get on one PDQ after the 4-6 week post rads consultant check up. I'd asked her about any wait time as I hear in some areas you can wait for ages. It's all well coordinated here. 👌
I'm going on my video call with the girls bare-headed - that's how upbeat I am today.
I hope everyone else is. And if you're not, good days are not far away.
Love and hugs to everyone. 🤗
Just home so number 5 of 9 now done.
Slept quite a bit in the hospital today as didn’t have a great sleep last night. Around 4am my knuckles became so unbearably itchy I had to scratch them so much. The itch would not go and I was worried I would break the skin. Now know I can take an antihistamine but didn’t know that then so will need to get some. They also gave me other cream for my hands today which has urea in so hopefully will help.
The nurse also confirmed that “wee sprouts of hair” are growing back on my head! I thought so but wasn’t sure as it was difficult to tell when I had not cut off what was left. They could obviously look down and see better than me so am pleased with that news.
Bloods also better so my steak and burger seem to have helped.
Early bed for me tonight.
Take care everyone and good luck tomorrow @Gelbel
Thank you @Gelbel and the same to you for Friday.
Will see how my cells are tomorrow. I have eaten more red meat this week so hoping that makes a difference.
Thanks also for the nose info. Mine still bleeding each time I blow it. It is quite stuffed in the mornings so feel like I need to give it a good blow to get rid of everything that has built up as if I don’t I end up sniffing all the time (sorry as I realise that probably sounds quite disgusting). However I get that is maybe not the best thing to be doing!
My knuckles are still red - forefinger and middle fingers of each hand though the left is worse than the right. I have constantly been putting cream on but not much difference. They are now a bit itchy too and one has a couple of small blisters now as well. I mentioned it to the nurse today so they may have to give me something for it. My hands are soft with the cream but the knuckles themselves feel a bit lumpy with the skin a bit harder in texture. The joys of all these side effects eh?
Thanks again for the info. Night night
Good luck tomorrow @Kaz11 I hope it goes well.
Re nose: onc nurse suggested Vaseline in my nostrils to help put some dampness in to replace the natural mucus that the chemo's stopping. I'm using my Burt's Bees lip salves. 🤣 They are making a difference.
She also said not to trumpet blow my nose and to only dab, but that's difficult.
Glad it’s not just me who slumps at the weekend. Think I need to remind myself at times that I am still going through treatment and shouldn’t be hard in myself if I don’t feel great.
Thanks so much re the info in the book and the website I will definitely look them up. That’s what I love about this forum - lots of useful info I wouldn’t have known about otherwise.
Thanks again and hope you have a relaxing evening.
Hi @Kaz11 - ah that’s nice that your friend popped round unexpectedly, that always seems to happen to me too if I’ve been feeling a bit mopey and then I get cross with myself! But you’re not feeling sorry for yourself or being horrible, perfectly justified in having the odd rant! @Gelbel I like the “bearing up” suggestion, I’m also getting a lot of mileage at the moment out of “trundling along”, which is effectively an answer but without really saying anything!!!
Also finding weekends tough after a Friday treatment. Tend to feel physically shattered Friday night, better Saturday but slump on Sunday. Then like you said @Kaz11 once Monday rolls round it’s like countdown to the next treatment. Definitely feeling slumpy today and drained though I did manage a walk earlier to local garden centre - loving getting out in the garden at the moment even though it’s the size of a postage stamp! Next week is my last “weekly” and then I’m on to fortnightly trips. I think I’m so programmed now that even on the in between Fridays I’ll be heading for the hospital like a homing pigeon!
The book i mentioned is called Ticking Off Breast Cancer. It’s by Sara Liyanage. She’s also put together a website full of useful links, and the book is a mix of her personal story and lots of practical tips and lists etc. I found it really helpful and also really moving. She’s very honest and just says it like it is. It would also be a good book for someone trying to support a friend through this - my mum bought it and read it first bless her so that she could help as much as possible.
Hooe everyone is having a comfy day - @Gelbel hope the whooziness is wearing off and hair still growing!
Just realised our posts must have crossed earlier as I only saw yours just now.
It’s great that you are up to speed with the Pax side effects as I wouldn’t have known about the flushed cheeks otherwise. Here was me thinking that my face flushed as I had been using my mobile phone a lot stuck to my ear! 🙈🙈🙈 Doh! I have to admit am a bit of a technophobe but now holding the phone away from me when I use it with the speaker on!
As you say hope Pax not playing tricks with the hair. Here’s hoping not as you say your fringe would have likely come out. I will ask the nurse on Thursday to look at my scalp as not sure if it is just wishful thinking on my part when I feel I see some wee hairs on there. As I said not sure if they are broken originals or new ones.
Like you am tired today so been taking it easy this afternoon. Did a bit in the garden after my walk but felt gubbed tbh so been lying on settee this afternoon. The nurse did say to me that someone else on Pax had a dip on the weekend days after the treatment so maybe that’s my pattern.
@Teagold after my rant yesterday one of my friends came for an unexpected visit and we went out for a walk so that’s what I get for being horrible! Should stop feeling sorry for myself (easier said than done though) and be nice!!!
Interested in what you say about the Ticking Off book - what is that? Would be interested in info about this.
Just getting ready to go out for my regular Sunday walk with my bestie. Feeling tired though as sleep been awful past 2 nights and my usual menopause flushing going into overtime. Going to keep a journal to see if there is a pattern. I feel on the Friday after treatment I have a good day as another one ticked off the list but seem to feel anxious and low over the weekend. By the time I get to Monday I am then on the countdown to Thursday again for the next treatment so seem to be more positive. Finding more of an emotional rollercoaster as time goes on. Is anyone else feeling this way?
Anyway have a good day everyone.
So glad to hear you're doing well @hopeful1974. Isn't sleeping decently more than half the battle? And it's great that you're being looked after. Don't forget your exercises and try not to get het-up about the results.
I'm having my whoozy day, which is a shame as the weather's not going to be too bad until this afternoon.
I'm pleased I've given you hope about your hair. It's still there this morning! I could feel the back of head hair on my pillows too. I hope it's not a false dawn and Pax isn't playing a nasty trick on me. 🤞 Probably not as I'm sure my 'fringe' would've come out with my brows/lashes.
I mentioned having a blotchy face for a few days a few weeks ago. While my face and chest is flushed on days 2 and 3 post Pax, I've worked out that the blotches are after some time in a mask - Fridays after Thursday bloods (I tend to go and have a natter with my friend while I'm there or the Macmillan girls) and Saturdays after chemo. Of course yesterday's breakout was more than I've had so far - thanks to the extra hour and a bit when I was forgotten. I've been using the hospital masks as they are comfier and bigger and less glasses steaming than mine - and probably better quality, hence more opportunity to cause the environment for blotches to appear.
I tend to tell people who don't know about my situation or if I feel a how if you is only cursory that I'm bearing up. I find it covers a multitude of sins.
Have a super Sunday.
Love AnGELa x
Lovely to see everyone’s posts today.
@hopeful1974 so glad to hear you are mending well from the op and being well looked after.
@Gelbel fab news about the hair!! 👊 As someone who is still v much on the shedding side it’s really encouraging to know that it WILL come back one day.
@Kaz11 - I totally know what you mean about the friends thing. Some are genuinely amazing but I do feel let down by one or two who just haven’t really been in touch or who’ve done that “let me know if I can do anything to help” thing and then backed off. I still sometimes feel a sort of expectation that I’ll be brave and strong so I don’t really tell them a lot of what’s on my mind. The lady who wrote the Ticking Off book and website covered this sort of thing off really well - about how some people just can’t deal with it and others only really want to hear the “brave” “positive” “warrior” stuff so she would say “I’m fine” or “I’m ok just a bit tired” and not really be honest about how she was feeling through chemo, or emotionally. I found it helpful reading that because it felt familiar. I think this is why I find this forum so helpful because it’s no holds barred and no judgment!
Very very lazy day today - didn’t even manage a walk. Still feeling a bit wiped after yesterday’s treatment and a bit feeble all round but must stir my stumps and get out for some fresh air tomorrow.
Good to read your news today.
I am doing really well post-op. I have been much more alert over the last couple of days and have had some family members over to sit in the garden today. I am being waited on hand and foot as I can’t use my right arm much. I had my drains removed today, which has given me a huge boost. I am very hopeful for a good recovery now. My sleeping has strangely sorted itself out since the op - I haven’t had to take sleeping tablets since I had it. Of course it could be that the painkillers are helping me sleep (I am having paracetamol and some ibuprofen). Anyway, I am still relieved that I am not using the sleeping tablets any more.
I will let you all know the results of the histology when I find them out in a couple of weeks’ time.
I hope you are all having a good weekend. xxx
That’s fantastic news @Gelbel so so pleased for you! Love the fact that you are celebrating with Percy Pigs - never a bad thing!
I thought I had a few strands on my head this morning but not sure if it is broken original hairs or new short ones. The ones which come out when I comb it tend to be longer so I’ll take anything at the moment and convincing myself it might be a sign of regrowth. However your definite signs give me hope that mine might start coming back soon.
You enjoy celebrating any way you wish.
OMG OMG OMG. Just took my wig off and changed into comfies and caught a sight of my bounce. I do look close up most mornings when I'm cleaning my teeth.
I'd do cartwheels if I could. 🤸♀️🤸♂️🤸♀️ Since this morning I've only had a 4"x2" patch of dark fluff appear on my right side halfway between my ear and the top of my head. And if that was not enough, I've a 5 o'clock shadow round patch on the back.
That's blooming amazing. 🎉🎊🎉
What's more, my eyebrows have the tiniest bit of fluff. Yesterday definitely nothing as it was a struggle to draw them in to look real.
I'm celebrating with half a Percy Pig and half a Victoria Sponge mini cake - both disgustingly sweet.
Rant away @Kaz11
My gym wig is my run around wig - shops etc. I think turbans and beanies scream 👉 chemo patient 👈
I'm thinking of getting a jazzy coloured one.
Friends eh? Might be a case of not speaking to the hard work ones for a while? Or just get in a "can't be long as I'm 'enter slight slide effect' today." I sometimes find it a get out clause if needed.
I hope you and @Teagold are as good as you can be. I'm ok - woke up at 3am but did doze for 40 mins from 6. Bit aware of my tummy so on the anti-nausea tablets. And I must take my indigestion tablet soon - oh my, not good in the night. Couldn't be bothered to come down and take one as it was cold and I was so snug despite the burning.
Eyelashes 👁 I happened to buy some magnetic ones you use with a magnetic liquid eye liner back in the summer. They were great with your own lashes but pants without. Not helped that I can't put liquid liner on. I've splashed out on Silly George ones this week. I got the one with a clear pen. On right first time. 👊 And the good thing is, the clear stuff goes over your eye shadow etc. They went on at 08:30 and i took them off at 21:00. Compliments all round.
I saw this on QIs Twitter feed. According to the Greek historian Herodotus, Ancient Egyptians would mourn the death of the family cat by shaving off their eyebrows.
I've a sarcastic comment when I hear/see some things that are utterly twaddle I say if.... then I'm the Queen of Sheba.
Seems I am!
I hope everyone has the long weekend they want and don't get wet. 🌧
Love AnGELa x
As you say @Teagold it is now May - can’t believe it. I think it was maybe @Gelbel who said we can both say now that next month chemo will be over provided sessions go to plan. Indeed something to look forward to. It has been a long haul for us all. Think I keep forgetting I still have some radiotherapy sessions to go through too but I know it can’t be as harsh as the chemo. However I did ask the nurse on Thursday how long it will take my body to recover from the chemo and she said it could be a few months. As long as the main side effects go I think I can deal with the tiredness.
Like you @Teagold I feel pretty wiped after my Pax session. It is such a long day though it’s my most socially interactive day of the week as I get to chat to all the nurses. I will miss them when the treatment is over but obviously not the awful drugs. I usually have my dinner, a bath and then bed after my hospital visit.
I found the cold cap really cold and achy a couple of weeks ago so that’s why I had the “shower cap” type thing on underneath it on Thursday to make it a bit more bearable for me. It was the nurse’s suggestion as now it’s about encouraging hair regrowth. Still have some hair at the back and sides though it is bare above my ears for some reason. Practically nothing on top just a big bare patch. I still have some strands at the front so comb them back over the bald patch - my version of a comb over I suppose!
Now wearing my gym wig most days if I am going out walking or know someone coming to the door. I do find the band digs into the tops of my ears a bit as the day goes on and they start to throb so I lift it up a bit when back inside so the pressure is off that area. I wear my turban if I am not going out to look presentable and in case of an unexpected knock at the door. Also wear it when I go to the hospital. I don’t wear it outside other than that as I feel it looks so obvious that I am a cancer patient and I have always wanted to look as normal as possible in public.
Eyebrows now disappearing fast despite using serum and not sure how long the eyelashes will hold on either - face now starting to look bare as a result.
Also need a slight rant. Friends on the whole are very supportive but I also feel that because I am not rolling on the ground crying hysterically every time they see me that they almost forget what I am going through. They probably don’t know what to say and I am not looking for sympathy every 5 minutes but every now and again a bit of “it must be so hard what you are going through” wouldn’t go amiss. They just seem to think I am strong and just getting on with it. No realisation how hard this is every day especially looking in the mirror! One friend who has been through it although no chemo goes silent if I mention my treatment to the point I have to check if she is still at the end of the phone! Maybe it brings back bad memories for her but I know if the shoe was on the other foot I would be there and that’s what hurts. Anyway am probably sounding selfish but I do get annoyed about it. Wonder how they would have coped with cancer during a pandemic with all the additional restrictions that has brought. At a time you need support no one has been able to come into my house.
Also going to top up my red meat intake too for the red cells so it’s a steak for me tomorrow night and you have put the notion of a big juicy burger in my head now so that will be on the shopping list too!
@Gelbel that is poor that the nurse forgot about you, as if the experience isn’t stressful enough. However that’s us both now 4 down and 5 to go. Am crossing every day off. Next Thursday is halfway of Pax.
Have a good day everyone.
It’s May!! Pinch and a punch for the first of the month. Feels like we’ve all had quite a lot of pinches and punches over the last little while...
@Gelbel I’d have been v grumpy about being parked and forgotten. Chuckled though as your description of the other people in the ward because I would be one of the snorers - as soon as the portion hits me I nod off and sometimes snore so loud I wake myself up 😳.
@Kaz11 I’m the same with the worrying - anything they mention has me wondering whether it’s “good” or “bad”. Heightened sensitivity at the moment I think. Waiting for blood results back always makes me anxious. All ok yesterday or at least no worse - not sure whether all that spinach and watercress soup made a difference but had an enormous burger for tea last night on basis that it will help my hemaglobin!
When I get home from the hospital after single Pax I feel literally like I’ve been kicked in the stomach, almost winded, like I can’t even talk or only in a whisper. Feel bad because the family bounce in and everyone wants to know how I am and with it being Friday night they’re all quite jolly and lively and I can’t really chat. It always passes by the next day, I feel fine now. Like I said to my hubby yesterday, it does really feel like over time this stuff is kicking the c**p out of me. I’ll mention it to the nurse next week - it doesn’t really bother me though as long as it doesn’t last.
@Kaz11 on the hair front, are you wearing a wig most days now? I’m figuring we must be similar on how much is left as I also haven’t clipped and still going with the cap. My god it felt cold yesterday. The nurse also put some cotton underneath to protect scalp and prevent headache bless her. I reckon I’ve lost over half my hair and the bald patch on top is still getting wider but I have enough to get away with a cap or hat still - just about. Eyebrows thinning too, I think. Trying to focus on joys of not having to shave legs though!
Hope everyone doing ok. @hopeful1974 how are you feeling? Hope still taking it v easy and not too sore. Big hugs to all.