@Tootle Hope you had a lovely Maltese weekend it sounds lovely! Wishing you all the best for your oncologist appointment x
Congratulations Rita on your 1st Grandchild. They are so special. Will you be Grandma, Nanna, Nanny??? I’m Grandma Toots (x8) but also have an alternative name, Nannynutjob .
They will decide what to call you regardless of your preference , that’s the joy of having a grandchild.
sorry not posted for a while. Just felt I needed a break from being a Cancer patient for a while but back to reality now. Sending lots of love and hugs to you all. We can do this.
Sounds like you’ve all been having a rougher time than me the last few months.
I’ve just been on Letzerol for the last 6 months which I tolerated very well. Been at my allotment most days which did wonders for my mental health. Also been away on 2 lovely holidays. Now back to dealing with reality, had a procedure in my sinuses to remove a fungal infection to prevent complications when I have next round of treatment. Still putting off surgery to remove a 4cm ovarian cyst 😵💫 Just had my most recent scan and waiting for results from oncologist on 8th November. Major scanxiety right now as my estrogen expression was only 3/8 .
I’m also going through hoops trying to claim my pension as I had my 66th birthday last week . Why can’t anything ever be straightforward for me 🧐🤪😀.
On a positive note, seeing all my family at the weekend, having a Maltese day with the goodies I bought back . Pastizzi , hobza and Cisk. AND it’s not long to Christmas, my favourite time of the year. Building 2 new cribs, and watching Christmas movies already, they make me feel good so why not 😂😂😂😂😂
Whyte ❤️ sorry to hear you’ve been experiencing pain and have a rash ❤️ glad to hear you are being checked over by surgeon on Monday, things can take a while to settle post treatments but main thing is you are getting your team to check you over ❤️ please let us know how you get on 👭❤️💕💕✨✨Shi xx
Hi, has any one experience really bad breast pain a year on from lumpectomy and a red rash over the same breast?. I’m feeling conceded as have a red rash and a lot of pain on my left breast where I had lumpectomy, I am a year from surgery and had chemo and rads for tnbc. I am seeing surgeon on Monday because of it but I am very worried as pain is so bad. Any one else experienced this ? I am seeing surgeon Monday so I hope it will be ok x
Ooohhh Karen 😳….
you hang on in there…(how much longer will you have left?)
you know you have strong vibes in you 💪🏾
Take care of yourself…
I’m a firm believer in smiling and laughter is the best medicine 😁
And I’m sending lots of it to all of you
I feel ok thank you. I’m having phesgo injections every 3 weeks, well I was as they’ve just paused it for 6 weeks as my heart hasn’t improved on the medication.
I promise to keep in touch. You take care as well. Keep smiling xx
I have slight rib pain, actually it feels bruised, I assumed it was a side effect of radiotherapy. I only notice it when doing my arm exercises when I stretch upwards. If it gets worse i will ring my breast nurse as I have open access to breast clinic, just waiting for first annual mammogram sometime in November. Can you ring your nurse for advice? Xx
Whyte ❤️ rads can leave you a little sore but always best to contact your team and get everything checked over ❤️ don’t forget your body’s been through the treatments and think most of us are on high alert post treatment ❤️ do get in touch with your team and let us know ❤️💕💕✨✨Shi xx
Has anyone been left with rib pain after treatment. I’m in agony under breast that was treatment round side and I’m back.
feeling quite worried now but was thinking if it is the radiotherapy that’s left me with this pain.
If any one else has experienced this please could you get in touch x
Ahhh 😯 Karen
I hope you are ok
( sorry can you remind me please 🙏🏽 what treatment are you still on.,I thought your chemo had finished..,)?)
look after yourself.. try and stay happy… it’s the key to a healthy heart ❤️.,.
will be thinking of you and please do keep in touch
Oh wow that really is very exciting! I’m ok thank you they are just keeping an eye on my heart at the moment as I have got cardio toxicity due to my Phesgo injections so they have paused treatment for 6 weeks but hopefully only temporary so I’m not worried.
really nice to hear from you.
Hoe lovely that there is a new baby on the way! Will it be your first grandchild? Enjoy the decorating. Exciting times x
Good morning Ladies 😊
thinking of you all
Off to help paint my daughters house today ( hoping the arm movement will help build my muscles 😂!)
going to turn grandma in a few weeks… a new chapter in my life 😊
how is everyone feeling?
sending love 💕 and strength to you all 😘😘😘😘
so good to hear from everyone 😊!
@Tootle , Terri.
so sorry to hear you have possible Mets, glad to hear you have found a face to face group, I found talking to others in similar situations really helps..
what an amazing trip you have to look forward to 😊.. have fun everyday 😊
I have been thinking of you all for a long time…once radiotherapy finished it felt like I had to get back to business as usual 😬!
but I have found keeping busy does take my mind off everything
I’m taking Anastrazole daily, which plays its role in my day ( stiff joints and fatigue!) but I’m determined not to let it rule.. have just returned back to swimming, which I find really helps … I was supposed to start ibandronic acid .. but have chose not to take it at the moment want to tackle one medication at the time..
mammagram due in a few weeks 😬🤞🏽🙏🏽
stay strong everyone, and happy to chat with you at anytime xxxx
Thanks for your reply and kind thoughts Karen.
Sounds like quite a mixed bag between us, its good to know we all have each others backs 🙂
Yes the lady you mentioned is the same one from Insurance with. Got another quote today for my trip to Malta £35 for a single trip. Amazing value.
I've been off sick since last December, fortunately the company I work for has critical medical cover so have luckily been paid my salary the whole time. Im due to retire tho in 6 weeks on my 66th birthday. Will be worse off then as I will only get a state pension :(.
Glad I didn't have to go back to work as although I feel pretty good in general I'm not sleeping well , think its the letrozol , so get pretty tired and can't always think straight. At least I can have a nap when j need one.
Have joined a couple of Facebook groups too including one for ladies like me with secondaries and triple negative. Not sure if I find them useful yet or not but will keep trying.
For all of us ladies , we've come this far, whatever its going to throw at us we can do it with each others support..... Sending you all really big hugs
Oh I’m sorry to hear you’ve got pain from treatment. It seems there is always a side effect from some treatment. I’m now under the cardiologist as my heart has got some damage from the phesgo injections. I worked from home during treatment so I was fortunate but after I had my mastectomy my surgeon insisted I had some time off to recover from surgery and to breathe (her words) so I was off for 7 weeks. Worked from home again for a bit during radiotherapy and then went back physically into work just over 3 weeks ago. Only go back when you feel ready, your body has been and is going through a lot. Keep in touch as we are all still here for each other.
I’m sending you lots of big hugs I’m sorry that there are mets. I’m so glad you have managed to have a lovely holiday, There is a thread on here about travel and insurance, people have said there is an insurance company set up by a lady who had breast cancer who didn’t see why we should pay extortionate prices for it.
Please stay in touch we are all here to support you xx
Lovely to here from you too. That sounds like the best way to approach life. Make each day count!
take care and I would love to keep in touch.
Nice to hear from you. I’m just struggling at the moment with the pain I’m in. Been left from chemo with terrible leg pain and weakness. Finding it hard to even climb the stairs. Also got rib pain and back pain but think the rib pain maybe caused from radiotherapy.
just worrying how I would manage at work but don’t won’t to loose my job. They stopped paying me in June and I’m on my finial sickness review. Just struggling to move on living in fear. Finding it hard at the minute. X
Hello @whyte I find being back at work helps to distract from the constant thinking about cancer and everything that goes with it. I did a phased return and could take it at my own pace, my bosses have been really supportive.
I did some Get fit with Rick walking videos to build my fitness back up, you can find them on you tube, and can do them at home.
I hope your next treatment goes better for you xxx
It's so nice to hear from you all.
I'm not too sure when to mark my one year. I was thinking the date of my first mammogram which was last week rather than the actual confirmation which was at the end of September...
Anyway, I have been back at work for a couple of months, and am currently on annual leave, just got back from an amazing cruise to the Norwegian fjords, very shocked I only put 4lb on haha.
I'm feeling pretty good, might even ditch my wig next week when I go back to work, my hair is growing nicely and lashes and brows are back. I forced myself to go for my smear and thankfully the results were clear, just the follow up mammogram in November to get through now 😬. What a year it has been, it almost seems like an out of body experience. Now to look forward, my daughter is getting married in May, mother of the bride dress hunting is underway 😄 xx
Lovely to hear from you all.
I’m thinking about going back to work next month, just wondering how long the majority of people stay off. I’m still in a lot of pain everywhere unfortunately. My legs have been damaged from the chemo finding it hard to walk. Still feel tired from radiotherapy and have pains in breast and rib cage.
I had my first zoldronic acid infusion a couple of weeks ago which resulted in me being taken into hospital and put on a antibiotic drip with a temperature of 39. Not looking forward to the next one but have heard the side effects might be better with the next one. Have to see what oncologist says about it but with triple negative it’s my only after care with regards to treatment. Any one else get side effects from that?.
Now treatment is nearly over have to try to be a bit more positive and get on with my life a bit.
I find it hard not to think about it all the time. I do worry so that’s not good.
It’s nice to talk to people like yourselves that has been through it too. Take care Rach xx
Good morning Ladies, so nice to hear from you again.
Its not quite a year for me yet (15th October) but yes what a year. Lots of highs and lows but more recently they have levelled out.
Ive had a lovely summer , been at my allotment most days, been great therapy and its been nice to feel "normal" again.
I have been put on Letzorol (since April) even though Im only very weakly positive for it (3/8). Chemo shrunk my tumour and also slightly reduced the lung nodules which indicates they are most likely mets after all 😞 but hey ho at least they are still very small. waiting on my next scan and decision on my next treatment plan. Meanwhile I have to have an op on my sinuses , have a fungal ball which normally wouldnt be too bad but as i potentially have more chemo down the line have to have it done while im feeling well.
I also joined a face to face group for ladies with secondaries which I have found really helpful.
On a really positive note have been on holiday to Cape Verde and am also off to Malta for 2 weeks on the 21st Sep to visit my brother. He has a villa with a pool 🙂 so I'll be lazing by that and visiting my friends. Found a very reasonable insurance company called Insurancewith. Really affordable prices.
Hopefully the lack of interaction on our thread is due to everyone getting on with and enjoying life to the full. Hope to hear from you all again very soon.
Love and hugs to you xxxxxx
Would be nice
Good morning Karen
so lovely to hear from you 😊
Wear your pink with pride !😊
my year points is tomorrow 😌!
And look how far we have come !
Im back at work too!
and yep knackered 😂!
but I have learnt to be much more kinder to my being… and still taking each day with no high expectations of the next
please do keep in touch…
look after yourselves
It really has gone quickly looking back. I won’t forget my year point as it’s wear it pink day 😂.
Hope you are doing well. I’m well and truly back in the real world now as back to work- knackered 😂
Hope you are doing ok. Lovely to hear from you.
it’s coming up to a year since I was diagnosed with BC … what a year it’s been 😌!
lots of highs and lows!
Wanted to check in with everyone to you are all okay and living life to your fullest ( whichever way that may be😊)
sending you all lots of hugs
would love to hear back from you all
@whyte I hope you hear back from your oncology team soon, it's so hard when you feel so poorly and just want some answers.
Sending good wishes to you and your dad xxxx
hi,, thank you for all your kind words. I have let the oncologist sec know that it has got worse and concerned. Have left messages for breast care nurse but no one called back. They must be busy. Rang Macmillan yesterday just to talk to someone. I know it would be hard this week because of jubilee.
They have given me 10 injections to do at home each time for the last 3 cycles because of my low neutrophil level and kept getting pushed back. I was still pushed back this time.
The worsening leg pain come on more before I started them again. They told me the nerve pain will probably be with me forever now. As long as it’s nothing else I can live with that. x
@whyte @I’m so sorry to hear your dad is poorly. I’m sure you probably have but are you in touch with the breast care nurses as they can advise or relay it to your oncologist? It’s really hard when you are going through all this and cannot speak to anyone to ease your worries. I found I got quite achy after the GCSF jabs I had to do after chemo, my legs would almost feel restless and achy. I really hope you speak to someone soon.
I feel for you at the moment, not much I can say except my thoughts and good wishes are with you. Hope both you and your Dad start to feel better very soon.
keep your chin up , lots of hugs
@Shep45 Thank too, I don’t take anything like that during chemo as always worried. Think it’s just chemo knocking me down. Had last one Friday so feeling bad now. Got a lot of neuropathy pain in legs which is getting worse so making me worry. Not got oncology till 20th to talk about radiotherapy. I have been trying all week to speak to someone without luck just keep leaving message. They may do bone scan at end. My lymph nodes both sides ache too. Did anyone else experience this with chemo. My minds just running away with me. On gabapentin for nerve pain and oncologist put me on a b6 vit to try to help neuropathy. Had it since cycle one but got a lot worse. Feeling very low at minute as my dads very ill in hospital and I can’t even see him. X
@nannagel Hope the radiotherapy is going ok. I’ve got an appointment with my oncologist to consent for radiotherapy in a couple of weeks. That’s a long trip for you but I think I would do the same to be in my own bed 😀.
sorry to hear you are in pain. I was told to avoid good bacteria yoghurts etc while in chemo (I don’t have them anyway so didn’t miss it). Hope the pain eases soon for you.
SBC - secondary breast cancer. There are so many abbreviations we use and I don’t know most of them either lol. X😂
I haven’t had any surgery as yet because of the secondary’s, seems there is no point if it’s already spread but if these lung nodules turn out to be treatable with sabr radiotherapy they may consider doing the surgery. Meanwhile it’s wait and see. Got my next ct scan in 10 days and onc appointment in 5 weeks so not too much longer to wait now.
Can’t wait to ditch my hat too. It’s starting to get to warm to wear it. May put a colour on when there’s enough 😂 probably purple.
Have a lovely jubbly weekend everyone and wishing you all speedy recoveries.
Good morning @Tootle
lovely to hear from you and loving your future plans 🥰
my hairs popping back… can’t wait to not have to wear hats …
Can I ask what SBC is?
Morning all you lovely ladies.
sounds like all is going quite well for most of you👍. Seems like a few different treatments going on now and some of you hopefully coming to the end of your treatment plans 🤗.
Im enjoying feeling well again for the moment while I wait for results of next scan and decision from the oncologist as to how to proceed regarding those pesky lung mets. Meanwhile on Letrozole and so far no side effects.
pleased to say my hair seems to have started growing again, will be glad when I get some eyebrows and eyelashes back 😂.
Meanwhile I’m off on a well deserved holiday in July with one of my sons and his family. Going to Cape Verde and very excited.
Don’t think I’ll be returning to work and if I do it will only be for a few weeks as I’m due for retirement in October. Luckily for me the company I work for is amazing and I’ve been on full pay the whole time.
I’ve also signed up to go to a face to face group meeting for SBC in a couple of weeks. Not normally my kind of thing but hoping it will help me deal with the situation and be able to meet and talk to others in the same boat. Have any of yo done anything similar?
sending you all big hugs and lots of positive thoughts.
Yep really bizarre having to think about physically going back to work
I’m quite enjoying the WFH.. and flexibility to eat drink and rest whenever I want 🤣!
but I think I’d better show my face out there now!
Making a brief visit back tomorrow morning., easing my way back in..
so glad to hear you are doing
well with Radiotherapy
All that remains it to live life 🥰!
@ritap I am lucky to not have to hold my breath, I did think I would have to.
Yes we are nearly there, and it seems strange to be thinking of going back to work soon, although I have worked from home right through.
No side effects so far, I have been given Flamigel RT ointment to use 3 a times a day so hopefully it will keep any redness/itching to a minimum xx
fingers crossed your bloods are ok🙏🏽
I’m experiencing pains and PIns and needles in my fingers and toes too and very stiff legs and arms and back!
i found if I keep active it helps with the stiffness ( a doctor friend who I walk with was saying my muscles are waking up! What muscles..,. 🤣 I’m currently skin and bones.. and they are brittle at the moment 🤣🤪!)
Each day I feel a little better., nails appear to be returning back to a lighter shade of grey! 😂
Take each day @whyte … 🙏🏽😘
well done @nannagel
hopefully no side effects on the radiotherapy
( I’ve been practicing holding my breath for the past few weeks 🤣🤣!)
im all tattooed up so start my 8 sessions on the 6th June
nearly there right !!😊xxx
Hello @whyte , fingers crossed for you!
I did have some pins and needles in my hands after chemo but it's gone now after three weeks. I also had random stabbing like pains in various parts of my body, not too painful and thankfully short lived.
I started radiotherapy this week and it's a breeze compared to chemo, literally in and out in 10 minutes!!
Take care ❤