Oh Susie B
It's all so stressful and sometimes the relationships that are the MOST stressful. I have a really close relationship with my sister who is managing to what's app me and ring when she can whilst on holiday in Kuala Lumpur. My lovely daughter messages and rings every day from Abu Dhabi. On the other hand my brother who lives in the next village and is the vicar has not been to see me or messaged me since last Monday knowing I was having chemo for the first time last Wednesday! My son was here on Friday from Bristol and I had to text him today to say be nice to hear from you!!! So how do we deal with it all I have no idea. I suppose they are all dealing with it in their way too. I hope things settle down between you all and you get the support and understanding you need. X
Well, it seems my hair is leaving me already, I think we harbour some silly hope that perhaps we may be a medical miracle and be that person who gets off scot free....alas not....I wore my wig earlier because I had to and not because I just fancied it...today mentally is a low.....xxxx
Can I issue a 'rant alert' before I proceed😠? This touches, to begin with, on some of the posts the other day re telling close family about the BC diagnosis. In my case I couldn't tell my Mum, aged 87 and physically fit and healthy, and brother until late January although I was diagnosed early Dec, as they were both off to Australia to visit friends and family in Sydney and Perth. Keeping it from them when we met up prior to Xmas was pretty stressful but we couldn't ruin their break away. When I broke the news to Mum she was full of all the right platitudes. Not her usual reaction, so I thought 'that went we'll!'☺. My brother rang on the Friday, short and sweet as normal. Come Sunday different story. Mum rang to see if she and my brother could visit the following Sunday, before my PICC line input and chemo started, as I wouldn't be up to visitors once treatment started, that's what happened to so so when she had cancer. We'll done Mother, back on form😤. Said person had treatment over 30 years ago and is still with us. I pointed out that things had much improved and I would be fine, and also told her we had plans for that weekend. Has anybody heard of the saying 'message received, understood and ignored'? Well that was Mum. She just carried on and told me what her and my brother had planned. Telling her we'd booked a hotel in Bath Sat into Sun was totally ignored. I don't know if she was in shock or what, but no matter how many times I told her we would be away she just carried on regardless. By this time my husband could hear the exasperation in my voice and thankfully poured me a glass of wine🍷☺. I even said short of cancelling the trip I didn't know what to do. Anyway call ended with a 'if that's what you want..............blah blah' from my Mum and down went the phone. I was left dumbfounded. Then the emails and phone calls started about how she'd wanted to see us, they felt we didn't want us to see them, would only have stayed a couple if hours, etc, etc.😠. Time to scream. My husband did send a couple of emails explaining everything including from diagnosis to tests etc that I had endured including treatment to come to my Mum and brother. I did lose it and had a right go at her during one of her phone calls because she just wouldn't let her desire to see me before chemo started go. Anyway, long story short, we saw them yesterday and had a nice Sunday lunch washed down with some local Somerset cider and yes Mum still went on about not seeing me when she wanted to AAAAAARRRRGGGHHH!!!! On one final note they managed to outstay their wecome. My husband could tell I was getting tired and said so, I replied yes that's what happens when you haven't had a good night's sleep in over 3 months. Comment completely ignored, Mum continued to read one of my magazines and brother continued to watch football on his i-pad. How rude is that? Anyway they finally left at about 5:00 pm. I was left exhausted and practically in tears. My husband's comment was why do I feel as though I've just gone 10 rounds with Mike Tyson🥊? Anyway sorry ladies for the rant but I feel much better now that I've got that off my chest (Sorry, no pun intended). Next time we'll visit my Mum and under our terms. Hope to reply to some of your posts later today or tomorrow.☺
Thaank you all so much for your lovely comments, I can't get my head around anything today , love to you all in your times of need xx well taking Trixie out then I'm Off, hopefully well enough to report back tomorrow xx
I'm still feeling pretty dire, and looking at the screen to type is rather uncomfortable so I'll keep this short.
Seaside Sar, scary stuff with your son! I hope he is on the mend, and that you don't catch any lurgies from him. Not the best timing but then there isn't really a good timing for any of these things. 😕 I hope all settles quickly.
And for those going into round 2 today/this week , all the very best of luck. I imagine it's not remotely easy going back in to something that you know is going to make you feel pants, just as you are starting to feel well again 😞 but it's another one down and closer to the finish line.
This really is a bloody horrible thing to have to go through, isn't it. Wouldn't wish it on my worst enemies.
Thanks to all of you for constant support and encouragement
Good luck those going under the needle today!
Feeling a lot better today even though sleep wasn’t amazing. My friend who has a mystery illness has been admitted again, she’s had more scans than me. I wish I could go and visit but not when we don’t know what’s wrong not when I’m on day 8 and not when it’s over an hour’s drive... it’s strange I feel better knowing what’s wrong with me even though it could kill me! Trying to keep her spirits up by message.
Got my Talking Heads session at Maggie’s tomorrow - has anyone else been to this? Not sure what to expect but I think it’s about wigs hats scarves etc
Hi Seaside Sar
I love the way you can get us all on one post how do you do it? Yes my corned beef dream was funny haven't eaten it since the 1970's 😀.
I hope you don't mind me jumping onto your Feb thread, I'm on Jan (just)... I wanted to let daisydi know - I'm thinking and rooting for you today. Hope all goes as smoothly as can be. Sending love x
Good morning lovely people,
Goodness me there's a lot to catch up from since yesterday!
Nettienoo, good to hear you managed to get some wigs.
Sissy60, your dog is absolutely gorgeous! You look lovely too by the way 😊
Trixielady, so sorry you are going through this awful hair loss stage. I am still hanging on to some of mine but it is falling out every day now. Wishing you lots of luck for your chemo today. I will be thinking of you and hoping it goes as smoothly as possible for you.
MBJ, sorry to hear you're suffering from headache and photophobia. I hope they can help you so it doesn't affect you like this in your next treatment. Had to laugh at your corned beef sandwich dream! I've had really weird dreams too but I was putting it down to my cheese cravings. Maybe it was the chemo after all.
Edinbird, hope you continue to get through this first cycle without too many side effects.
Marlyn, well done for persisting with the coffee! I too am a coffee addict but I've not been able to drink it since my first chemo. Was thinking I might try iced coffee instead as I do miss it.
Rosina, thank you for al your tips to overcome some of the yucky side effects that we're all enduring.
Daisydi, best of luck for today. Thinking of you and hoping it goes well.
Sarah, hope you're having a happier day today. Totally feel your pain with the hair loss. Mine is now a daily chore of collecting bundles of hair before they decorate my carpet/kitchen floor/bath...yet I still can't face shaving it, so I'm stubbornly hanging on to what's left.
Susie B, thanks for the paracetamol advice. I was none the wiser and have been merrily taking a daily dose for my regular headaches! I was measuring my temperature beforehand though as I was aware that it could mask a high temp.
Ocean21, I hope your appetite returns. Mine certainly did during weeks 2 and 3. I haven't tried the Calm app but I have tried Headspace which is quite nice. I just never remember to do it!
Stargazer1, good luck with your number 2 treatment this week.
I hope I haven't missed anyone.
As for me, I have had an eventful few days. After sorting out my cough with antibiotics, I spent most of yesterday at the hospital with my 19 year old son. He has an overactive thyroid and is on medication for that but last week he came down with a sore throat and chest pains. Then yesterday he developed a huge swelling in his neck. Anyway, after several EGGs, a chest x-ray and blood tests, they informed us that he has glandular fever! On the one hand I'm relieved as I was fearing the worst for his heart with all those tests, but on the other hand I'm terrified in case I catch it too.
I'm off for my blood tests this morning, hoping my chemo can still go ahead tomorrow.
Finally, here's some nail advice which I found quite useful.
Hope you can all enjoy a bit of sunshine while it lasts. 😎xxx
morning beautiful women,
ocean21, you hit the nail on the head for me......totally echo your words......it really is ok not to be ok..xx
Trixeylady, we are all with you this afternoon at 1.15 my next cycle is 10.30am and i am glad its in the morning, as horrible as it all is you just want to be a step further to the finishing line..
This whole thing isnt for the faint hearted, and we are all still in shock that we are actually going through this, by eck we have some battle scars!
I love you all to pieces...sisters in arms...xxxxxx
The challenges we’re all going through aren’t for the faint of heart. We’re a serioutough bunch and no matter how down we feel sometimes I know we’ll all get through this.
Totally understand how hard it is to look in the mirror and wonder who is the person looking back at you. The scars on the boobs, the scars were your boob/ boobs should be ,the scar for your port, the hair loss.Everything.
Sometimes I look in the mirror and think ‘ F* ck off you , come back the real me’.
The ‘ real me’ will come back to all of us in time ,even though a part or parts of us will be forever changed. I think we’ll be changed in a good and great ways .On the way some days we’ll feel like sh*t no shame in that. I’d be more worried about the people who can’t admit to those feelings.
You don’t feel to great today. That’s okay , just do what you have to do and take it from there.
Good morning ladies,
Trixielady, good luck for today and anyone else who will be having chemo today ❤️
I know what you mean about looking at yourself I just don't recognise me at all. Last week I had thick blonde longish hair now I have a bloody awful haircut that sticks up everywhere, fat red cheeks too. I look like a demented chipmunk. Best to not Look too hard in the mirror I think. I have not had the energy or inclanation yet to even look at what I might see if I put my wig on. Not intending to wear it to chemo days anyway as if I am still cold capping then it's not possible. So chemo hat it will be. Unless of course the hair has other ideas of it own. Good luck hope the time does not drag toouch this morning. X
Its strange how it just comes over you, thought i was doing well with it but i just want to stay in bed where its safe and cry, wish my appointment had been this morning but it's not until 1.15pm giving me too much thinking time xx plus looking at myself doesn't help xx
Good luck for today. I think each one needs more courage to be honest. But also is going in prepared to deal with what we know is to follow. Build on what worked well last time and try to tweak what didn't if you can. Thinking of you. I really am. X
Morning ladies , dreading today don't really know why! its not like the first chemo getting administered was actually uncomfortable, think I'm a little bit nervous of the epirubicin going in, my hand is still a little sore, i think this time I'll actually take notice of what and how many.
Thanks Ocean21, fasting went and still is going well but I'm thinking i should really have something little before taking netupitant / palonosetron 300mg /0.5mg and dexamethasone 4mg??. I think part of knowing that the effects get worse as time goes on doesn't help! Hope all you ladies are feeling slightly better today . Good luck for anyone starting this week or for your 2nd
Seaside sar good luck for tomorrow xx
Stargazer1 good luck with your number 2 Black nail polish is really difficult to put on by the way definitely with a shaky hand xx
Well the 4am sleep big got me again 👾. I have managed to drop back off, but just realized I have been dreaming of what a corned beef sandwich would be like for lunch. The only problem with that is I HAVE BEEN A VEGETARIAN FOR 30 YEARS. What is chemo doing to me!!!
Re calm app - My brother has recently downloaded it and swears by it and recomended it to me. He has arthritis and he finds it helps if the meds he's on don't help the pain sometimes. Not sure if it's for me, but I may give it a try when my husband goes away for a meeting in the next few weeks.
Trixielady - good luck tomorrow. Hope your fast today wasn’t to onerous,given the increase in interest in the metabolic theory of cancer I think that it’s something we’ll probably here more of going forward. It’s not for everyone of course and there are the usual cautions of course re other medical conditions etc.
. I have strange blood sugar problems for years so I didn’t want to chance a full fast. Ate lightly day before and the from 6.30 pm that evening to when they gave me lunch during chemo I just had a little fluid.
I coldcapped so don’t know if that’s why I had the awful heavy brain feeling for a couple of days.
My appetite is slowly returning. Not eating huge amounts but eating what I fancy which at the moment are carbs so my Ketogenic diet is out the window. Only saving grace is that I’m not eating huge amounts of them. Can’t loose anymore weight. I honestly didn’t think my appetite would be this badly affected.
My bones are aching now ,particularly my sternum, collar bone and shoulders and neck. Sitting up in bed now ,normally sleep on my side, don’t think that will be possible tonight. It’s been a few months since I saw my chiropractor think I’ll make an appointment tomorrow.
Ally2019- I’ve found meditation a huge boon throughout this madness. Do it everyday , morning and night. Tried running but my boob where I had the lumpectomy isn’t ready. Plus I find wearing bras even more uncomfortable than I did before.
Has anyone tried the Calm app?
As always I hope that everyone has had a better day.
Aw Trixielady, I am so sorry to hear about your friends grandson. Whatever possesses someone to do that to another person, it’s so so tragic.
Quick update re paracetamol. Asked nurse on Friday about taking paracetamol. Her reply was we don't want you to be in any pain so yes it's ok to take it. Just check your temperature first. If you've taken paracetamol prior to a medic taking your temp, then make sure you tell them as the temperature reading may not be 100% correct. Hope this helps. Will catch up tomorrow with the w/e posts. Good luck to everyone having 2nd chemo this week. Hopes all your meds are sorted.
Reading all the posts with interest.
Also further advice from the Ayurvedic Practitioner was for me to avoid all negative news.
I told her that in the past I had worked at a Pupil Referral Unit ( for 5 and 1/2 years) with teens in rubbish set ups ( and that is the mild phrase for it) and in the end I was having nightmares. I was there teaching GCSA Science .They also ‘cut’ the counsellor who was fab ( literally 24 hour notice). I ended up attending church and all I did was cry ( where do those pent up emotions go ? ?- remember deadpan face, professional- and kids would be off loading in the lesson ).
I did some Art Therapy ( this was at my local cancer charity support) and I am booked in for more. A pity that mental health , stress reduction and counselling is NOT available before one gets seriously ill, burnt out.
I literally used to swim laps like a maniac; standard was 40 laps just to get rid of crap stuff in my head. When I swam for the Macmillan Nurses it was for the mother of one of my students ( who had passed away - I was in shock - I took the call at school, still had to ‘keep calm and carry on’ and teach). By that stage pool training was 80 lengths.
Hey ho, this Cancer thing has put me to the top of my ‘to do ‘ list.
Obviously not a polish kindagirl. Smudged it all already. Made me laugh. Havent done that for a while
I did my fingers and toes with dark polish as my onc nurse suggested. I have no idea if it makes any difference! First time I've done my toenails since I was a teen..... figured it couldn't do any harm. I can do without losing my nails as well as all the other nasties, so am happy to try. I'm also massaging nail oil in once a day. Again, no idea if it's actually doing anything.
Yes it's meant to help. I have my finger nails done but did not get around to the toes. I think it's to protect from light. My toes don't see much of that anyway.
I’ve just got the Simple shampoo and conditioner and that’s what was put on my hair for the cold cap coincidentally. My hair gets greasy really quickly so I’m hating washing less and being gentle with it I normally give it a good old scrub!
My friend said who cares what my hair looks like, I know he understands but I don’t want to walk around with a slimy head! Trying to go one more day than normal at any rate.
Awful news re the young lad who died - I work for the police this is my world sadly. When I worked in England we set up a knife amnesty after another teenager died and I did a lot of work with his sister. This was in Suffolk - it happens everywhere. Really hope I can get back to work soon I hate not being able to help!
Implausible I live about 2 miles away the other side of the town centre. Such an awful time for those living nearby but they have a good community spirit there so they will be helping each other get through. X
Oh Trixielady that is horrendous news!
With sons in their teens and twenties, knives are one of the scariest things for me. It seems to be more and more common to hear tragedies like this. Your poor friend.
And Nettienoo.... you must live close to my friend as he lives in the next street to where the four children died in the fire 😞
As you say. Perspective. Makes the fact of having to go through chemo seem not something to complain about so much.
Trixielady, devastating news. So so sad for all concerned. I live in Stafford where we lost four beautiful little ones in a house fire recently. Such tragedy does make you look at things differently. Life can be so unbelievably cruel. X
I have bought the soap folk shampoo and conditioner. Only washed once since cold capped. It smelled lovely and has nettles and peppermint to encourage hair growth (I hope). I also bought goat body soap (it is Much better than it sounds) as was recommended by my BC nurse for excema. Not sure if that's helping yet though. But early days yet. Nice to try new products though as I seem to have used the same shampoo for ever before this.
Oh what a terrible tragedy. Life is so cheap to some people. It's utterly awful what a waste of a young life. I am so sorry for him his family and for you too.
I also visit my lovely salon and asked them for advice re. Looking after my hair during chemotherapy.
They only use AVEDA products so they very kindly gave me some samples to try.
I have enjoyed using the AVEDA invati products and so looked up the 3 step system online and found it at a MUCH better price. See link. I will continue using my samples and may consider purchasing the full size bottles. I will keep you updated.
I've since had my life put back into perspective as my friend received some devastating horrible horrible news that her Grandson was stabbed 8 times in the early hours of this morning and died in hospital 18 years old it would have been his birthday this weekend xx I can't believe what this world is coming to why on earth do people carry knives. I'm absolutely devastated for her and her daughters family xx
Hello again reading about staying hydrated. The daily dozen app ( free to download from the App Store and also available for android devices) recommends 5 glasses of fluid daily ( approximately 1L and 100ml ) so I am making sure that I get this - at least-
re. the cold cap no headache issues for me and so far ( it is now day 10 no visible hair loss, I have been washing my hair gently on a daily basis).
I will probably try cold cap next tine. I am going to ask about some painkillers that don't affect temperature too. And try to drink more (not wine Gosh can't even think about that.)
Yup sounds similar. I don't usually wear sunglasses but I had to borrow a pair yesterday as the sun was so bright. And fuzzy/thumping/heavy old head but thankfully more uncomfortable than actually painful.....
I think my head feelings must be similar to yours but mine was thumping too, and bad photophobia. I too have been missery guts. Feeling a bit better this morning trying to up the fluids ++ also been out for a little walk not far but it was lovely as the weather here in lovely in Pontardawe (near Swansea) is fantastic like a warm summer day. So that's a lovely blessing today. At least we are all at different stages some are already preparing for chemo 2 can't believe it. But I think the difference in timings is really helpful to us all . You girls are a real lifeline.
really annoyed I lost that post last night! Trying remember what I wrote ....
I know I started by saying how tasty Edinbird's dinner looked 🙂
and then I went into some big emotional ramble about how miserable I am about having to go through 4 months plus of this when I'm only 4 and a bit days in and I've already very much had enough of feeling so incredibly horrid. To be honest, you're all lucky the post went AWOL as I was being a right mardy madam!
After the first couple of relatively side effect free days, days 3 and 4 for me have been tough - so far touch wood so far today I feel slightly less awful, but to be fair I haven't really tried to do much of anything yet. I've felt so oppressively heavy headed and have struggled to stand up straight or even open my eyes properly. And so, so, so exhausted. This must be what it feels like to be withdrawing from drugs. I feel like a real spoilt madam as I've always been fairly well, and I know there are people with various health conditions who feel this rotten all the time.
My surgery side arm is also starting to play up a bit. Before fit started to feel tight or I got numb/tingly fingers, I could quickly relieve it with a few shoulder shrugs and circles, or the full set of arm exercises (I have the leaflet that Rosina posted before) -but now it seems like I can't stop it feeling like an uncomfortable dead arm. Can't get remotely comfortable anywhere.
But at least, no matter how horrible each day might be, by the time we get to the end of it, that's another day closer to the finish line, and that's what I'm trying to grasp onto.
As for cold caps and headaches - I was lucky to escape that - I drank at least 3 litres of water and squash the 2 days leading up to treatment day, and didn't actually keep count on the subsequent days but I've been trying to keep drinking as much as possible. It seems to help me feel less peaky anyway so not a huge chore. In fact the only time I feel human is when I've either just had a drink or just had a snack in the last 5 minutes. I'm surprised I'm not putting on weight with all the snacking but instead I seem to have lost about 4lb since chemo day. I have at least tried to keep to healthy snacks.
Whether or not the cold cap is working is debatable, though, I woke to my first clump of hair on the pillow this morning. That was depressing, given I'm only on day 5. Trixielady I fully understand you having a meltdown on first glimse of your shaved head - I already hate looking in the mirror because I don't like the short haircut I already got, when/if it comes to full on bald I shall lose it, I know I will. And I was so happy a week ago today gallivanting around in my wig at the seaside thinking "what fun!". It doesn't seem so much fun now 😞
Oh gosh, I really am a Debbie Downer at the moment!
Thank goodness for Sissy's gorgeous puppy photos (and gorgeous Sissy photos - you're a stunner!!!) to cheer me up!
Marlyn I'm glad that you managed (by the sound of things) to avoid going back into hospital and got to see the rugby. I hope you are feeling a bit better today and your temp is back up?
Right - I'm off to have another snack and try to count my blessings a bit. It's not like me to be so miserable! I'm annoyed with myself for it.
For those of you having a tough day, solidarity!
And for those of you with a very imminent big day, best of luck
PS Sandraindurham? Still thinking of you and your daughter, hope all is ok
Ah hi Pigeon, small world, thanks for your comment. Yes I do live in Stafford but I’m actually having chemo at Cannock! The reason is I had early breast cancer four years ago and had a wide local incision to remove at County hospital under Miss Vidya. No further treatment at that time. She was then moved to NewCross when they had the big shift around of staff so thought it safer to have my yearly mammogram and check up under her still. Now that bc has reared its ugly head again I had my mastectomy at New Cross and as I said will have chemo at Cannock. I really wish I was having it at County Hosp but it wasn’t an option unfortunately. I agree though staff at the BCU at Stafford are wonderful. I hope Cannock can match up. Xx
Just poking my head in from the November 2018 thread, I think you mentioned you’re based in Stafford? (Apologies if I’ve got that wrong!) Just want to say, I had / am having my treatment in Stafford, and honestly, the nurses in the chemo unit have been the best part of the whole treatment - they are all so lovely and do their best to put you at ease, while also being very professional, they clearly know their stuff!
All the best for this coming week, I know the anticipation is one of the hardest bits!
You will have to be careful with brufen because it will lower your temperature and mask any sepsis. I would ring your triage first. They were not keen on my taking paracetamol for my headache and was allowed only to take it once.
I think it might have been a bit of dehydration ( great nursing care from a nurse to herself hey). I found it so hard to drink though. I am now having a big mug of hot Ribena and it's nice too.
will be thinking of you tomorrow, it will feel like an outer body experience.....as I sat there with the drugs dripping in I visualised ripping it all out and scampering out of there! You mind is screaming wtf!!!???? But what I can tell you is that once those thoughts had settled the whole chemo day was more than fine...I even managed a couple of silly jokes ( albeit not funny) I have a dark humour and it sees me through...it's my coping mechanism...
a quick question.....I seem to have " bone ache " do you all think ibrufen is ok to take? Xxxx
Good morning MBJ,
I haven’t had headaches, and I used the cold cap. I try and keep myself hydrated and drink at least 3 litres a day, as someone recommended it in the group before my chemo xx