Ocean, lovely to hear from you!! And thank you for the fab photos, just lovely.....it's good to catch up with all your news, 34 sessions.....wow! That was a right blasting you had....
i totally understand about " changing" I have too, I think we all have.....take care love....onwards and upwards....❤️❤️❤️
Morning beautiful ones,
I’ve finally caught up with all the posts.
Finished my rads on Thursday. I was overjoyed. 34 sessions. Energy wise I had a couple of days where things caught up with me but I put that down to having early morning sessions and then coming home and eating porridge. Daft as it sounds carbs can really give me a hard time. Have to really watch my intake because if not I feel as if I’ve been hit by a truck. Can do nothing else but sleep. Once I’ve woken up I have something sweet to drink and I’m fine. Simple unassuming porridge is like a cosh for me which sucks as I love it.
Anyway, aside from the couple of days rads were a breeze really. Skin wise all was well until I had the boosters. 8 in all and I’m discovering the joys of radiation burns. Got them on my neck, collar bone back above my right shoulder. The skin next to my scar hasn’t fared well because of friction from my bra and seams in clothes. You couldn’t play guess which boob has been treated with me because I’ve got one caramel coloured one and one ebony one so it’s bloomin’ obvious!
My finger and toenails are really discoloured, that started happening just at the end of chemo and continued. I keep them covered up because they look horrendous . However, even though a number of times I thought I’d loose them I seem to have held on to them and the discolouration is slowly growing out.
My eyelashes are growing back not much happening on the eyebrow front. I was drawing them in but since the end of rads I haven’t bothered although I may today as I’m going to the village tea dance.
My daughter and daughter in law tell me that having no eye brows or bleached eyebrows is a fashion thing at the moment.
So my lovelies we can rebrand our eyebrowless stays as a chemo fashion statement !
My hair has started to grow back,it seems quite white. The regrowth has been quite patchy and was worrying that my crown wasn’t filling up but slowly it seems to be. As for my fanjita / noo noo thankfully I’m getting some growth back there. Hated the bare look.
Don’t know about you but coming towards the end of rads I had this feeling of stepping into the unknown. I know things are all gone now but it almost feels like I have to relearn to trust my body again. I’m a very changed person ,for the better I think. Some of the rubbish from my partner that I was letting go for the sake of peace I simply won’t anymore. His behaviour most of this year hasn’t been particularly helpful but I’m dealing with it and like many men he’s having a hard time being called out on it.
Before this bc business I’m the one you’d call if you needed to do battle. I’d take on other people’s stuff because I could and they knew and I knew I’d get the results required. But I have been doing some honest self- reflection about why I was helping everyone but no one ever thinks that it would be nice if they could sort out something for me.It was / is “wish I could be like you,you’re always so strong”. One of the reasons I’m so happy living in France is that it’s not so easy for people to ask me to do stuff for them now. I’m determined now not to have the stress levels I carried before bc. It’s simply , not healthy and it’s not fair especially when you look back and see that most of the stress you were dealing with wasn’t yours! So, I’ve changed.
Im filled with gratitude for getting through treatment, for being able to access the expertise ,medication and equipment that has helped me. I wake up and give thanks for the day. How many people around the world aren’t as fortunate to have had the care we’ve. I’m less tolerant now of people constantly moaning and never being able to see a blessing. My fella can be like that and not only is it draining it’s stressful and as I’ve said from now on I’m having none of it.
SusieB great news on the end of chemo. Sure your rads will be fine. They’ve clued you in on the skincare so that’s great. I must say I think the colour of your hair regrowth us lovely. I’d funk it up and accent the silvers.
Rosina ,glad to hear that you’re easing into work.
Belated anniversary greetings to all who celebrated them.
Daisydi great to hear the good news about your mum. It must be a relief for you.
Sonia28, glad to see you did bleed with this latest injection. Hope they can find non surgical support to help with your hands. Thanks for setting up the Messenger group ,will join up later today so look out for me. I’ll message you my number for the WhatsApp group too.
MBJ so sorry to hear about your heart health but let’s hope that going forward you have much better cardiology care that the standard that you had in on oncology.
Implausible, you’re looking fab. Super jealous that your eyebrows are back.
Nettienoo, love your hair ,your grey crop suits you , really shows off your lovely eye colour.Hope your break in Amsterdam isn’t too tiring.
Edinbird , apart from your rubbish take away (!) you sound less stressed which is wonderful.
Trixielady SeasideSar , Delano hope that you’re all good.
Marlyn , your nails look lovely. Those colours were a great choice. My nails look so discoloured now that I’ve made a promise to myself to really indulge them when the discolouration goes.
Hope I’ve not missed anyone out. If I have , forgive me but rest assured I think of you all .
Right get ready for the flurry of pics . Have a great day everyone of you gorgeous women.
Freedom from the PICC line indeed. About to have a shower without the cumbersome cover, but will keep the area covered where the line went in with a waterproof plaster. Up next is rads starting on 21st Oct. The final week may be a little emotional as that coinsides with the week a year ago when I had my mammogram, the call back phone call and biopsies☹😟😢. Will try to focus on the fact that that will be the end of my treatment and I can look forward to my trip to London a year after my diagnosis.
I hope the numbness and tingling in your fingers subsides. It must be pretty frustrating. xx.
Hi Suzie B
Thanks for the encouragement. The cardiologist did say it should improve. As you know I have not had very good care here in Wales. I have had no scans if any kind and no follow up at all since the 11th March when I decided to stop chemo. The cardiologist is writing to the oncologist so it will be interesting to see if they even bother to get in touch with me. I am very disappointed in the care all through my chemotherapy nightmare as you know. I have at last been given a face to face meeting with senior managers about my terrible care when I was in hospital. You seem to have been really well looked after thank goodness. Take care xx
Onwards and upwards now our Susie, I bet having the picc line gone is pure freedom....
We have all had our different journeys on the cancer trip, I find it fascinating how our treatments have differed....no one size fits all......it feels like we've gone into battle and now emerging, some of us are more battered than others, I'm still shocked and saddened at how that one cycle knocked the stuffing out of our mbj, who could have predicted that!
I love how we still check on eachother, we don't need to post everyday but we all know and understand we all close ranks for each other , if we have a man down we go back for them....we truly are a band of sisters. I'm proud and honoured to have gone into battle with you all, we didn't want to but we had no choice. All for one and one for all!! ❤️❤️❤️❤️❤️❤️
Still Can't believe I've had final chemo. Maybe it'll sink in when I don't have to go in for PICC care next week. Still need to do final blood test for trials people in about three weeks then I can think about rads. Dropping a day from work makes absolute sense. I was not a happy bunny when I reluctantly chose redundancy in 2012 but glad of it now. I took on most of the household chores, we shared whilst I was working, and treat that as my part-time job. I even make sure I have lunch and tea breaks 🍳🍲🥗🌯🍵☕☺.
Well done for the deep breath and bollocks to that!!
Thanks for the ❤❤❤. Much appreciated. Pop in for chat when you feel ready. Take care.
Susie B xxxxx
No appologies required. We all have our quiet times and talk when we feel ready. You've got so much to think about at the moment. Hope the increased meds help. There's an article on the BBC news app today about a woman who went into heart failure around 2 years or so after bc treatment. She was on holiday in Canada at the time and heart function had dropped to 6%. An astute specialist asked her to squeeze her hand if she had been given the red stuff during chemo. We all know what that is. Anyway meds got her up to 12%, enough for her to get home and carry on with treatment in the UK. Meds and excersise/physio etc improved her health. As I am on a trial I have had 3 heart scans and will have a final one in 5 years. I will also be having annual check ups covering just about everything, physical and mental health, this is on top of the normal NHS checks. On the trial I have a final blood test 3 weeks after my final chemo💉☹.
Glad to hear you're enjoying the Rock Choir. ❤❤❤
I'm just a bit older than you at 62 and my mum is 88 in November hence possible good guess☺. I'm not feeling too bad at the moment, just the steroids causing sleep deprivation😪😪😫😫😩😩. Last night I was either awake or in dream mode, weird. Not looking forward to next week as that is when I know fatigue will kick in. Hubby is away for a couple of days so my son may want to keep his distance as he may be at the receiving end of one of my rants 😠😠😠👹👹 and 💩💩💩 mood. xxx
Hi Susie yes I was thinking of a picture board. We already have a very small one and some random pics but a bigger one might be a good idea. She was 88 this year so not a bad guess! I did start a photo album/life story when she first went into care but I found it too upsetting. May dig it out and try to continue. Hope you are feeling ok x
MBJ good to hear from you and lets hope the drugs do the trick. I bet your garden will look amazing once your hubby has finished with it.
Hope everyone has a great weekend xxx
Excellent news about your Mum's move to a new home😊. What a difference a week can make. I couldn't believe what you had been told at her current home when you told them you were moving her out. Almost seemed like emotional blackmail, and I could almost hear the violin heartstrings playing in the background 🎼🎻🎻🎻🎻.🎶🎶🎶🎶😭😭. As for putting new things in her room have you thought of adding a picture board or photo album of pictures of bygone years. I don't know if you've said but I'm guessing your mum is around 80 or 90 years old. Perhaps photos depicting the 40s, 50s and 60s fashion, transport, shops, food items, the list could go on, may trigger past memories and maybe some conversations about those times. xxx
Sorry I have been off grid for a while it's been hard to get my head around what's happening to me. I saw my cardiologist yesterday he has doubled my medication and if medication does not improve my heart function I think I will need a pacemaker. Hard to believe that one dose of chemo has done so much damage and also probably no use at preventing any cancer comeback. I had lots of blood tests and a chest x-ray yesterday and I have to have a heart MRI. Met some previous work colleagues for lunch today. I nearly did not go as I am fed up of telling people bad news. When I got home neighbours I have never met had left flowers for me with my husband who chats to them. Very thoughtful but upset me to think people think I am so sick. They have moved in to live in a grant amex with their son who is the managing director of Swansea City football team (I don't know him either).
I can see that you are all doing well and moving on with your lives. You have all been so strong and coped remarkably well with all that has been thrown at you.
I went back to my Rock Choir last night which I enjoyed. I have been told to carry on as normal but obviously it's hard when you know your heart is pretty crap. My husband is getting on with the garden and had ten ton of top soil today he was like a 🐖 in 💩. Does not take much to make him happy obviously. Hope you all have a good weekend x
Well done Susie for finishing chemotherapy 🌸🌸🌸
Congratulations to your sporty son Sonia28, he must be very disciplined and dedicated.
Thanks for the good wishes Seasidesar, I enjoy my work and give it my all , hence why 4 days makes sense as I will do stuff from home . When I was FT work seeped into my weekend so it was more like a 7 day working week 🤪
Today , I had to call HR as I was still on sick pay !!!! so they have to fix this pronto.
Daisydi so pleased for you and your mum.
Nettinoo enjoy Amsterdam.
This was another reason I decided to drop a day if this bc returns 5, 10 , 15 or 20 years down the line I don’t want to have spent all my good days at work!!!!
Today I had a parent that had requested an appointment to see me and then they never showed up ( or called to say they couldn’t make it).
Initially that made me cross. Then it was BIG BREATH and count to 10 and say ‘bollocks to that ‘.
Daisydi, sat in my caravan smiling after reading your post. You deserve life to start being kind now. I’m sure this is the start of things looking up for you. Xxxx
Well done Susie for finishing chemo. Hopefully in a few weeks you will feel normalish again. Regarding rads yes the pen does get on your bras so dont wear white but it wasnt a problem with my black ones. I used to put the Aloe Vera gel on straight after treatment when the skin was hot as I had a long journey home. That gets on everything too!
Well I have done the deed and paid the holding fee for mum's new care home. Social services have at last served the 28 day notice so she will be moving on 11th October. They are going to put in new carpet which we can choose and I am now out searching for nice things and plants etc. to put in there. I feel really excited. The manager said they will definitely get her into the lounge but even when she isnt she will have a nice environment to be in with windows that open and fresh air. I feel so relieved that we are doing this. One of the staff at the old care home said yesterday that she knows their voices and they remember her when she was walking around but to be honest they have had a lot of new staff lately and I am sure the staff at the new home are just as nice. We both really feel that this is right. What with the treatment I had and this decision about mum I feel I have had a large weight lifted off my shoulders. I can almost walk at normal pace now
Thanks Susie - I bought that Aloe Vera gel last week as it happens. I’m getting given two creams so I’ll just use what I’m told unless it doesn’t work and the Aloe Vera if it gets red. Sounds like I might need to do the cream when I get back and at night.
Didn't know about the bras, I’ll wear a black one on Monday and see what happens. I’m not in soft bras! The ones I had after surgery I hated and were tighter than a lot of my others so I’ve been back in my normal wired ones for weeks now. I really don’t want to buy yet more, maybe I’ll just skip them for a while at home. Interesting about the belt, just assumed the dots were the only things needed to line up! I’d be concerned that the belt would be in a different place on different jeans... I had leggings on for my planning.
Glad all the chemo stuff is done for you fingers crossed you can stay well until the rads start xx
I did start a reply to at the hospital but was interupted by a wee stop🚺🚽 and PICC removal and phone decided to dump everything, so let's start again at home on my tablet. Some things I was told yesterday have already been mentioned but just to recap -
I think that was all. I'll be thinking of you as start rads on Monday. I start on the 21st Oct so will be starting when you finish. xxx
Thanks Trixielady, we are only taking the caravan less than an hour away and we just plan to vegetate when we get there. My daughter and her boys might pop out to see us there tomorrow so may be a bbq will be on the cards. As for Amsterdam, yes it’s my belated 60th celebration that was cancelled in May. In the interim period one of the group of friends we are going with has had his 50th so it will be a joint celebration. I know I won’t be able to keep up with all the shenanigans but will do as much as I can. Sounds like you are going to be busy with appts. I hope they all go well sweetie. Xxx
Daisydi so sorry to hear about your mams situation, where actually are you because its my understanding that sharing rooms is old hack and homes that don't come up to new standards have to change or close and the homes I've worked in have had key codes on the doors for clients protection and we always try to encourage all clients to join in with activities those that don't come along to the lounges we check on regular with or without staffing issues as they still need drinks regularly , have you discussed your situation with the CQC?? Hopefully your mams new home will meet her care requirements xx
Seaside sar, I'm on letrozole and I'm sure numb fingers or pins and needles are a couple of the side effects its irritating. Hope you enjoy your hockey and hope you don't miss your daughter too much and good luck for her final year xx
Nettienoo hope you have a lovely time at the caravan and then next weekend in Amsterdam did you say it was a belated birthday treat?? Xx
Pleased to hear your last Chemo went well and your PICC line is getting removed bet you can't wait for a proper shower. I bet they loved your goody bag and yes chemo brain is crap but I've also found it helpful at times, so what's next for you?? Xx
Hi Deano, so sorry to hear about your family situation its heartbreaking, its difficult to not think to much about our own situations at times like this. I pleased you rads are going well. I noticed your on Tamoxifen, I'm getting all the same side effects one Letrozole some days are easier than others to cope with them. Good luck for the remainder of your rads. Big hugs hope you've got the strength to cope with this barry journey and what's happening around you sending love and strength Xx I see my bc surgeon on 26th September, osteoporosis nurse on 30th and my oncologist on the 4th so keeping my fingers crossed xx
Back again everyone
My PICC line has just been removed, not painful or uncomfortable🙂. Need to keep wound area dry for a couple of days then can shower without the waterproof cover. Happy with that.🤗🤗🤗🤗🤗.
Deano, lovely to hear from you. I often wonder how things are going for you. I'm so sorry about your family member. As you say this cancer business is such an emotional roller coaster.
Good to know that you are coping well with radiotherapy. I will be giving Edinbird a few tips I received yesterday, some maybe a bit late for you but if you get redness from the rads get aloe vera from Holland and Barrett, high concentration or better still get an aloe vera plant and use the gel from the plant.
Take care and no need to apologise for not popping in for a while. Talk when you feel ready.❤❤❤❤❤
Thanks for the good wishes regarding my final chemo session. Had my final T🙂. Onto the C when had my flush through. Definitely having PICC removed today 🤗. Brought in a goody bag for the staff today. They've been brilliant all the way through my treatment. Going to write my next posts to some of you individually can't get split screen on my phone and chemo brain is causing me to misspelling things at the moment☹.
Good morning lovely ladies,
First of all, good luck to our Susie with the last chemo today! You've done so well. I'll be thinking of you and sending lots of virtual hugs ❤
Lovely to hear from Deano - sorry about your sad news. Good to hear you're getting on ok with Tamoxifen. I also find it affects my joints, especially when I've been sat down or lying down for a while.
Sonia, congrats to your son on the sports awards. You must be very proud. As for numb fingers, I haven't had that but mine are very sore and prone to infections. I've also had pins and needles in my left hand. The nurse who did my Herceptin yesterday suggested I might have carpal tunnel in my left arm. I'm not convinced though.
Nettienoo, I can totally sympathise with the lack of energy and sore toes. I've banged my toes several times and ended up with blood everywhere and missing nails. Nothing broken though, that must be really painful. You poor thing. I hope you have a lovely weekend at the caravan. The weather looks good for it.
Marlyn, 3 hours in the car.... I feel for you. Hope you manage to enjoy a bit of your time in Cardiff at least. Don't fall asleep during the church service 😂
Sarah, my sleep is still rubbish. Woke up at 4am and couldn't get back to sleep until after 5am. God help me when I have to get up for work. Love the hairstyle you're aspiring to. Even like the star but I know you said you're not having that. Are you off to the hockey this weekend? We've got Hull tomorrow. They beat us last weekend back to back so I don't hold out much hope.
Daisydi, so sorry you're going through such turmoil with your Mum. It must be very upsetting for you all. Sending big hugs ❤
Rosina, well done on getting the 4 day week approved. I just don't know how I'm going to cope with full time work in the near future. In the meantime, my ideal job has been advertised. It's an early years teaching role, part time in a small school. Just what I need but unfortunately I can't afford to take the paycut. It's really upsetting me.
Busy weekend ahead with hockey Saturday and taking daughter back to uni for her final year on Sunday.
Hope everyone else is OK.
Nettienoo, we're back home tomorrow afternoon/night. I've just put me makeup on and hope my eyes cope with the mascara, I haven't worn eye makeup since February.....
the lunch is a rather stuffy affair with retired colonels and yaar yaar types.....I just know I won't be able to keep up with the small talk, and I'm worried my face will show it, I'll be fighting the urge to say " who cares! I've had a c r a p year if your interested " but of course I won't.....I'm pretty well trained...lol xxxx
Nettie I once broke my little toe when I stubbed it hard on the corner of a bookshelf (when I was stomping in a bad mood 🙂 )
I did go to hospital, had it x rayed and confirmed as broken, but you are quite right they didn't actually do anything. Don't think you can put your toe in plaster or in a sling 🙂 They just told me not to drive for 2 weeks as the pain might put me off braking , and then just wait for it to get better.
It eventually did.
Marlyn, when are you back home again? Will you be able to climb into bed for a bit when you get home? I’m with you totally on the mind wandering bit. I do it all the time and then feel so rude as I just can’t remember what people have been talking about. I must sit there smiling and nodding like someone demented. I’m sure people realise I’m not listening because my husband picks up on it. 😬. Well done for being there to support your husband though. I’m sure he appreciates that even though you are spending time away with the fairies. Xxxx
Trixielady, I’ve gone back through the posts but can’t find your post/or what someone had commented about you. Are you finishing/starting something? I know there was something I wanted to say......useless aren’t I? 🙄😂.
SONIA, how could I have forgotten to comment on your phone all. No BRAC. That is such good news. 😘😘😘
totally with you on the lack of energy front, we're currently in Cardiff and I'm not coping too well with the walking.....The 3 hour car journey yesterday left me hobbling like an old lady, it's pants! This morning it's a church service followed by lunch, I'll need a block and tackle to get me moving....
I can't even begin to imagine going to the gym, implausible.....you're a machine! I very naively thought after chemo I would be bouncing back, another thing I've noticed is my mind wanders off when talking to people, I have to concentrate on what they're saying....and that's tiring! God help me today....just want it over with really, I've come to support hubby but to be completely honest I wish I wasn't here.....boo hoo......xxxxxx
Lovely to hear from you Deano. I’m glad rads going ok but sorry you have also been dealing with such a distressing family situation. It must be so difficult for you all. Don’t forget we are always here for virtual hugs love.
Daisydi, I’m so glad you are going ahead with moving your mum. You have to trust your instincts and yes it won’t look good on the current care home so they will be trying to keep her.
Sonia, well done to your son on the awards. Proud mum eh?
Implausible, you little superwoman you, you cracked me up as usual. Still giggling over your comments. Really love that hair cut. I can see you with similar. Are you going pink with the hair.
SusieB last chemo today.....yaaaaaaaay so happy for you darling. You have coped so well.
Trixielady, there was something I needed to say to you but mind blank at moment. I’ll post again later.
Ive been a bit up and down this week. 10 weeks on from my last chemo now. I’m getting a bit frustrated that I still don’t feel I have the energy to start back at the gym. I am out and about walking a lot but keep getting aches and pains in my hips and feet. During chemo, I banged one of my toes really badly and it was swollen and bruised for weeks. I think I broke it but no way was I going to have another trip to hospital to find out. They wouldn’t have done anything anyway would they? It’s giving me a bit of discomfort as I’m walking so I’m worrying how it’s going to affect me in the future. I’m still suffering from fatigue too. Am I just being too impatient in thinking I should be better than this by now?
We are away in caravan this weekend and next weekend is my belated birthday celebration in Amsterdam. I really hope I can keep up with the rest!
Ooooops gotta go. Back later. Xxxxxx
Deano, lovely to hear from you, glad rads it going well, I’m so sorry about your news. This cancer is certainly an emotional roller coaster. Big hugs xx
sorry ive been missing but I can tell you I’ve had 13 sessions out of 23 for radiotherapy. No side effects it’s going well and all I can say is moisturise at least twice a day morning and night. I use Aveeno at night and E45 in a morning for very dry skin. Ok m having my neck, armpit and boob and need booster sessions in the boob. My last session is on 4th Oct and another bell to ring. Tamoxifen appears ok my joints ache slightly but otherwise I can manage it
Hope you are all ok I am reading your posts and sorry for not responding but we’ve had a family member who has cancer diagnosed same time as me and she’s now terminal and very poorly as I speak it’s an emotional rollercoaster this cancer business,
Given this I thank the nhs for treating me in time and here’s hoping to a load of years to come - it’s not having me or anyone else on here
Take care and keep sane you lot ❤️ To you all xxx
I’m back from a very long sports award evening, but he got 2 awards for swimming and gymnastics so he’s happy.
Edinbird, I can sympathise with you about the nights, I have more bad nights than good, I feel the night sweats are worse the week after injections, not that they stop just not so many. I wake all hot and bothered then the hands hurt, but the time they’ve finished the hot sweats are back.
Susie glad the planning went well.
God luck tomorrow 🍀
daisy, it must be such a worry. Hopefully it will be sorted soon and you can rest up.
Do any of you ladies have numb fingers, I’m trying to work out if it’s my carpal tunnel, or treatment symptoms.
Sarah, I’m going to go back to study but not until next September as I need to do the placement hours and as I’ll have another op, next year it will mean more time off, so won’t get enough hours done?( If that makes sense)
I’m not sure if your amazing or mad or a bit of both taking on the extra job. I do admire you for it.
Hope the rest of you ladies are doing okay xx
love to you all xx
Thanks Susie tips gratefully received!
Got a call to say I’ve been accepted onto the C-TRAK trial subject to my tumour samples being suitable. So I have to do bloods on Monday after my first rads, plus bloods for the heart trial which should be finished soon. Not sure if I stop the meds on Monday or keep taking until the MRI which I can’t have until after rads.
Also managed to get signed up for another free massage or whatever they decide is suitable for me. Typically it’s on Friday next week which is the only rads session that’s in the afternoon but they’re fitting me in early so I can get up to hospital for physio then rads. So busy day that day.
Some nights are not too bad, some are awful. Didn’t sleep well at all last night. Not sure whether to try these sleeping pills or not... would rather not and I just have a horrible feeling they won’t work 😕
Just popped quickly so haven't read the posts yet, plan to read them when I send hubby to the shops during my final chemo session.
Radioiotherapy planning went brilliantly. All the staff were extremely kind and gave me loads of information and a goody bag to come home👝 with which sadly didn't include weets🍬🍬🍭🍭☹☹.. More about that at a later date. Edinbird, I'll pass on a couple of tips that you may or may not have been told about before your Monday session. I'm currently sporting my new tattoos but haven't tried to locate them yet. My rads are due to start on 21st Oct and the appt times are very random.. Not so good for hubby but his immediate boss is military (army) and extremely supportive and laid back about when hubby is able to work and where, home, workplace and even hospital. Thank goodness for lap tops.
Love to you all xxxxx
Thats what we think Maryln. They are miffed as they probably have never had anyone moved before but I must say that over the years the people that have been confined to their rooms have been end of life and that is fair enough. We insist that my mum is not end of life, her vital signs are all very healthy but we argue that she needs social stimulation even if she is not contributing. They cannot pop in and see her all the time as they just dont have the staffing levels to do that. Now I think her comments have made us more determined. It is all very sad but could be easily remedied. My sister really flew at her and said it was their fault as they had not given us a downstairs room after she broke her hip and that was 2 years ago, after which she fell down the stairs. Even the paramedics said she should be downstairs but they have just resisted us all the time. Makes me so angry. Also my poor mum has had to be in a room with 2 people receiving end of life care and that really really upset me at the time. Also the poor relatives ....
Oh boy daisy, that carer really has thrown a spanner in the works! Why didn't she pipe up earlier when you were maki g it known you weren't happy? I feel her comments are more to do with the fact that a resident is being moved by their family due to being unhappy with the home itself , they are probably more concerned on how it would reflect on them and how it would make them look? They aren't coming up with any solutions. In the end it comes down to quality of life......even if your mum isn't aware of her surroundings, it will still have an impact on her....
Its good you have your sister to share all this with, I know how emotionally draining it is...even if your in rude health! I hope and pray there is a good outcome for you all......and thank goodness your finally getting that bone scan! Xxxx
Had a very tearful day again at the carehome. One of the carers said my mum was like a member of the family and that we shouldnt move her. She said she was happy and she thinks we are making the wrong decision. Not what we wanted to hear but we said that we wouldnt be moving her if they had accommodated our wishes after she fell down the stairs and gave us a downstairs room but we could not bear the though of her in that room for the rest of her life. Her argument was that mum doesnt know where her room is and was content. I said that she was completely isolated and she argued that they are always popping in to see her. Ive now told my sister that I cant do it next week as I cant cope with the emotional side of it all so we will wait for her to get back from holiday. The manager and the carer said this has never happened before to them and they feel they have known her for 5 years and wanted to finish the job. It has made me feel so bad but it has made my sister more angry and adamant that the move is right. Ive said to them that I really dont want to move her but not once have they offered for her to have the next available room downstairs. So I know it is not the best decision but it may be the right one.
A breast care nurse has finally got back to me and told me that the Professor (my surgeon) has written out a request for a DEXA scan so at least that is being done. Also went to the dentist today and it seems that chemo has not done any damage to my teeth other than a fractured filling which I am leaving for now until I know I will have to have the broken teeth out which depends on the DEXA scan so a little progress is being made. She also said my mammogram will be roughly a year from diagnosis so I may even have that before my next oncology appt at the end of November as my diagnosis was in October.
Speak later x
Hi ladies, I’m just about to go out to youngest awards evening, but had to share genetics just rang no BRAC genes found 🎉🎉 just s hit family luck, but I can live with that so kids don’t have to go through it, I check back later when I get home.
Hello lovely ladies
As ever, apologies for my absence, I've been so busy I could drop. And I'm not going to get any less busy any time soon for reasons I'll get into once I've caught up with everyone.
Eek, last time I posted properly was last Friday, this could take a while!
Daisydi, the cost of care homes really is so high. I don't begrudge the people doing the care work from making a living so I'm not saying they should reduce their rates, but it definitely feels like something that should be subsidised by the NHS.
If your mum didn't have such a good pension it would be bankrupting you and your sister, it doesn't seem right 😞
And now you have to pay 2 of them at once for a few weeks, to add insult to injury! Hopefully it will all feel worth it when your mum is settled at the new place.
Oooh Nettie, a 19 year old toyboy when you were 24, go you! 🙂 I've always only been out with blokes younger than me. Well apart from my very first boyfriend who was 2 years older. I figured they kept me young 🙂
Hope you are looking forward to Amsterdam. I haven't been there for yonks. Might have to put that right next year.
Edinbird, I'm whispering this in case any of my boys see it, but I've never been remotely maternal either! My 3 kids have 2 different dads (first 2 with ex husband , youngest was a result of my I'll advised post divorce rebound relationship), and in both cases it was the bloke who was the one pushing to have kids. Left up to me I definitely don't think I would have gone that route. And I certainly don't think everyone has to have kids, I quietly envy those that have chosen not to!
All that said of course I love my boys to bits and certainly wouldn't undo them. And having had to bring them up mainly on my own, I don't think I did a bad job at the mothering in the end. But I do sometimes wonder what my life would have looked like if, like my sister, I hadn't gone the mum route.
And Marlyn, you're right, childbirth isn't fun!! 🙂
As for all of you lot and your reincarnation stories, that was a fun read but I sadly can't join in. I've never really had any spooky experiences or flashbacks to past lives, or anything like that. I don't think I'm particularly in tune with the spirits 🙂 other than a very occasional vodka and orange!
Sonia, I really hope the docs can find something that works soon for your hands, especially as you are looking to get back to work. Will you be resuming your studies too?
Marlyn that really is interesting about your sister's vision of the future! Again, I have no anecdotes to add. I'm very boring in that respect.
Rosina I can thoroughly recommend dropping to a 4 day week. It made all the difference to me and I can't imagine going back.
Seaside I hope your sleeping patterns are improving. Nothing worse than sleep deprivation. Did you enjoy what you did see of the Lion King? It made me cry!
Daisydi those were amazing photos you took of the sunset and the harvest moon! Thanks for sharing
Trixielady good luck with your symmetrisation (I've probably spelt that wrong!) surgery next week. I have mine on October 21st. I'm really looking forward to not being lopsided any more 🙂
Susie and anyone else who is going to be in London. Let me know when you might have a gap in your schedule to meet up for a coffee and a hug and I'll see if I can get there.
Marlyn you do make me laugh with your auto erotic neck waxing 😄 I also have down bumfluff on my face and neck since chemo. I'm kind of hoping it might bugger off on its own. It isn't that noticeable unless you really look for it so I'm ignoring it for now.
Susie your garden looks glorious
Edinbird that curry sounded like a disaster! Good on you for writing a review and complaining.
Nettie no underarm hair here either. And I still don't need to use deodorant, I don't sweat under my arms at all any more. Weird. But everywhere else the hair has come back now. Weirdly my down-below thick and curlies are no longer curly, they have come back straight. Odd. Susie you can tell your hubby that his theory was right!!! Eyebrows and lashes are pretty much back to how they were before.
Edinbird does your doc definitely think you are in full menopause then? I know chemo can accelerate it but you are so young 😞
Hopefully the associated symptoms will clear up soon
Oooh Susie another spooky story, there are so many recorded stories of near death experiences, there has to be something in it. I always wondered if it is a hallucination caused by the brain starving of oxygen right near the end. Thank goodness your other half survived! Did the girl he was trying to save make it too?
Sonia I'm glad your second Zoladex injection went better than the first and you didn't stagger out of the medical facility looking like you had been shot in the stomach! I had my first one on Monday. It was fine (although it stung a bit going in!).
Don't blame you trying to avoid the wrist ops given the long and inconvenient recovery period. I really hope that the cortisone injections help. Did you have arthritis in the wrists before all this breast cancer stuff? Or has it all come on post diagnosis?
Rosina I dare you to do the dying fly on the classroom floor just to shut them all up 🙂 🙂 🙂
Susie hope you had a lovely anniversary meal
Daisydi I'm glad you enjoyed your holistic pampering, sounds like it was really beneficial. I surprised myself how much I enjoyed/felt better after the reflexology sessions I had after my rads. I've never much believed in anything like that, but I have to admit it definitely seemed to help.
Really glad to hear that the new care home is holding the room for your mum despite the old home playing sully buggers.
Susie the end is firmly in sight for your chemo now. That seems to have gone quick but I bet it hasn't felt quick for you! You'll be so glad to see the back of the picc line I'm sure!
Rosina you've put me to shame exercise wise this week. I've not done as much as usual as I've been super busy. I did have a swim on Monday but that's it. Hoping to get to aqua aerobics tomorrow after work if I can get away in time.
Sonia glad you got to pop into work and see everyone. Hopefully you'll be feeling better and back there soon for a bit of normality.
Wondering how our MBJ is getting on.
And also love to those who haven't popped on recently, hope life is going well.
As for me.... well.... it has been a busy week.
First of all, I have a new job! Well, a new voluntary post anyway, no money will be changing hands. I now do a 4 hour shift on Fridays in a local charity shop that supports the women's refuge.
I volunteered entirely on impulse and am now wondering why I did it when I reduced my paid hours at work to give me more "me" time and now instead I'm spending the time I freed up doing more tiring work unpaid! Daft of me really 😄 But I'm excited about being able to do something to help a cause close to my heart. So it's all good.
And at my real job, my wonderful second in command, who has been an absolute star all the time I was off, and really kept the ship afloat single handedly, handed in her notice this week 😞 This means I'm going to be waaaay more busy for a while, because even if I manage to replace her quickly, the new person will need training up. And nobody will be as good as Georgina was. She was in 5 days to my 3, but she did more than 5/8ths of the work. I'm really going to have to step up!
Drugs wise I've now been on anastrazole for 6 days, and so far so good. I keep waiting for the side effects to kick in and I'm pretty sure I'm not out of the woods yet. But at least I haven't been instantly hit with something debilitating.
If anything, the one effect I can observe, it seems to have improved my sleep. My fitbit gives me a "sleep quality" score every night. Mine was always in the mid to high 70s, never went over 80. For the 5 nights since I started taking the tablets I have had sleep scores in the low to mid 80s. Might be a coincidence. I'll keep watching it....
I also had my first zoladex implant on Monday (ouch). So far so good with that one too, although it's very early days.
I shall be mightily pissed off if all the bad side effects land on me in 2 weeks time just as I'm about to get on the plane to New York!!!
Vanity wise I'm particularly worried about the threats of weight gain and hair thinning/ loss, which both anastrazole and zoladex state as side effects....
My hair is coming back nice and thick so far and I want to keep it that way! And as for weight gain, I don't want that while I'm on a bit of a roll losing the weight I put on during chemo:
(24lb lost since July)
I'll just have to step my exercise back up, inspired by Rosina!
The other thing that is taking up a ton of my time is the astronaut book I'm trying to get finished before I go to New York (as I want to hand deliver it to it's new home in Brooklyn).
Work in progress:
Also I decided that I'm going to risk bleaching my barnet so I can put some colour on it. Not going to do it myself though, letting the hairdresser do it the first time, have already been in for a skin patch and strand test, all good so far.
I'm going to get them to clipper it short at the back and sides and then bleach the top bit. Eventually I'm hoping it will grow into something along these lines (ignore the tram lines and the star, I'm not getting those 🙂 )
Oh and while I was in town I got my nails done did:
And promptly ruined them by getting black spray paint all over them 😄
I think that's all my news?
Oh - one more thing - remember that comic story I was working on for ages about Peggy the prostitute? The book that is in came out last week and this week lots of reviews have come in and they have all been super complimentary about my work and that has been rather lovely.
So - between working 2 jobs, doing lots of art, soaking up nice praise, occasionally exercising, meeting up with friends for nights out, planning my New York trip, taking ALL the meds, and trying to keep on top of the housework, I'm a little bushed!
Night night all!
Love to everyone
Daisy, fab news about your mum.
Susie, having the PICC line out will be fab, having a shower without the plastic cover felt wonderful. I remember it well. Fingers cross all goes well for Friday xxx
Brilliant news from the new care home Daisydi. Seems as though you and your sister have chosen a lovely place for your mum and wonderful that they are willing to step in and help with the move. Interesting about the foot massage but I have read that various parts on the feet affect other parts of the body.
Good news from you too Rosina regarding the possibility of dropping a day. Reading the excercise you have done so far this week is making me exhausted just reading about it. When I started to walk to the shops in Yeovil I started off at normal pace but was soon having to walk like a 90 year old as my legs started to ache.😆😆. As for my eyebrows perhaps I'll just about manage a fully grown matching pair for Xmas.
Sonia, sorry to hear the trial may not be right for you. It's surprising how people's attitudes can affect your decisions in these matters. I nearly didn't go on my trial as I felt the staff at my original hospital were way too pushy. Completely different when I transferred to Yeovil. At least with a trial you can stop, no questions asked. Ho0e your fingers improve soon🖐👊👍.
As for me, my white blood count was normal, liver and kidney function results hadn't come back but hopefully they'll be fine and chemo can go ahead on Friday😊😊😊. The oncologist has also said my PICC line, Klingon, can be taken out after my final session so happy with that☺☺☺☺☺🤗🤗😊. Might manage a few days of wearing a short sleeved top without a PICC line and cover. Best of all though a shower🚿🚿🚿🚿 without having to wear a cumbersome waterproof cover more suitable for keeping a plaster cast dry. Appointment tomorrow morning for pre rads planning. Onwards and upwards.
Rosina great if you can get a day off. It will make so much difference. The massage etc. is a local lady in the village. Its not free but she is quite reasonable. My feet feel totally different lot lighter and I feel much better already. Also the manager of the new care home has just rang me and they are going to keep the room for us so we just have to organise when we can move her. The social worker was not in today but the manager is really on our side and quoting all sorts of safeguarding issues so hopefully I will be able to move her next week even though my sister is on holiday but they will help. I feel so relieved and am hoping for a much better nights sleep. Also not sure if it is a coincidence but I havent had any hot flushes today. Took my tablet just before my treatment. When she was doing parts of my toes I could feel it in my head. Very strange.