Do you have the GCSF injections
Hi Carole! No, I don’t have the injections. It’s possible I may have them at some point, but they try to avoid it, because in the long term it can make your own bone marrow “lazy” and you stop producing your own white blood cells. So I had the injections for my first line chemo, like a lot of us, but this time around they are hoping to let me recover naturally. We’ll see how it goes!
Morning ladies.
Tatyana, it’s brilliant that your neuts are back up. Isn’t it so random how they can change so quickly. I’ll be joining you in the blood results game in two weeks time.
Just to report the biopsy was no problem.
They were a bit surprised when I asked if they could take a few extra chunks. Apparently most people want it over as quickly as possible. ?
I know what you mean about our poor gardens Michelle. Ours is in an absolute state. It’s the size of a small park complete with every tree and plant you can imagine (previous owners were very keen gardeners). We’re water metered so leaving the hosepipe on isn’t an option.
There’s also an enormous pit of despair where we cut out a 4 metre extension. ?
It’s overwhelming but it did keep me going last year. The hours I spent digging on chemo when the house was too unsafe to sit in. ?X
Hi everyone Angela glad the biopsies were fine woah extra chunks you are definitely nit a wimp thats for sure i know what you mean though i would be the same i would have let them do anything if I thought it was going to benefit me, love the fact that we all using our gardens as almost therapy it really does work though you can lose yourself for hours deadheading weeding watering etc!!! Watched gardeners world last night tgey should prescribe it on the NHS as a stressbuster!!! I find it very relaxing my kids think im a geek ? Got the baby again today and tomorrow i would do it permanent if i could afford it but will look for work once redundancy is through our local Maggies are hosting a Charlotte Tilsbury pamper event next Thursday with brow bars etc only £10 per ticket with the proceeds going to Maggies going to go it should be a good night heres hoping this summer lasts with a little bit of rain to keep the garden happy Angela you could makr that piece of garden a project to distract you ?
Tatanya gkad your neutrophils are behaving so you can crack on with the new drugs fingers crossed no se ?? to you all x M x
My typos ?
Hey lovely ladies, sorry for being quiet for so long. Been busy getting on with life! Back to work although in a new job. Done some travelling too which was good fun.
Unfortunately my last CT scan showed cancer in my liver, lungs and bones so I’m now stage 4. Not been the easiest few days really. Off to see the oncologist today to see what the plan is for treatment. I’m guessing chemo and radiotherapy but we’ll see.
Walking with a stick at the moment owing to a suspected tumor pressing on the my sciatic nerve, that’s been a lifestyle change and a half as I’m usually so active.
Missa hi sending you ? for today, im really sorry to hear your news im sure your team will have a treatment plan ready for you it just sucks that after going through all the op treatments etc you are in this position hopefully the treatment won’t be too harsh and the se will be more manageable for you i think its too easy to get complacent about things after treatment that we are cured im trying to be very realistic that this dies happen what a shock that must have been for you i hope you are being kind to yourself xx hats off to you for getting back to work and stuff i never got there ended up being made redundant (Friday) i could have gone on a ohased return but there wasn’t going to be an to phase into at the end so i didn’t go back im very frustrated and bored had an mri last night for my full spine inc neck as have been in a lot of pain and easily tired my gp ordered it not going to lie im a little anxious about it even though i had a clear bone scan in January x Angela hope you are well and a little further forward with your treatment plan, Tatanya you too i hope things are well with you both
Today is lovely so having a little grandma time today making memories is so special to me now i definitely feel like I have to make the most of everything these days ?
Carole hiw are you doing with the work thing i found it really upsetting as i know i will probably struggle to get a job now as i don’t think i could manage anything more than part time and physically although im walking alot its my neck and nerve type symptoms xx enjoy the lovely weather ladies wishing you the very best for today missa xx
Miss a. I’m so sorry that you’re joining me and tatyana in the secondaries club.
I totally understand what emotions you are going through at the minute.
It’s an absolute roller coaster.
You’ll find support here on the secondary bone cancer thread. Everyone seems to hang out there.
I think you’ll be entitled to the new targeted therapies drugs as you can have them if it’s your first line of treatment following secondary diagnosis.
That means no chemo with a bit of luck. I’m on zoladex to shut down my ovaries and also letrozole and palbociclib which is apparently a game changer in terms of treatments.its clearing up bone, lung and liver mets for many people.
There are women living for years and years with secondaries now so please don’t think this is a death sentence.
It’s bloody horrible, but not the end.
You’ll also find lots of info on the American site inspire.com. I’ve joined their bc secondary boards.
They seem to trial treatments long before us in the U.K. so it can help you stay ahead of the game.
I’m 44 and DO plan on being around a long time.
Michelle, good to hear from you. I’m sure your scan will be okay. We have all sorts of aches and pains thanks to prior treatments and anxiety.
I agree about enjoying each day. Off to seahouses on Saturday for a week with the family and my gorgeous little grandson. ??? light of my life.
Not working is such a worry. The plan was for me to go back to work to help pay off the debt we’ve got into sorting out this house but obviously now it would be very difficult to find work. And to be honest I don’t feel up for it emotionally and I’m full of aches and pains which I think are due to the oestrogen blockers.
My husband has put paying into his pension on hold for two years to free up some money for bills.
He doesn’t retire till 65 and although I plan on living a lot more years yet I have to be honest that it’s unlikely I’ll live over 20 so he won’t need as much to retire on. I’ll be honest that broke my heart this morning.
Who knows, with a bit of luck these new immunotherapy drugs will be available to all secondary ladies in a few years time and we will just have to be short of a few pennies in retirement. ?
I rang Macmillan to see if I was entitled to PIP but they said as long as I can plan a journey myself and shower myself I won’t get a penny. ?
They did send me a cheque for £400 though. I hope youve had yours. X
Missac so sorry that hear of your mets. It’s a cruel disease when all you want is a bit of pre BC normality. Hope you get good news today for your treatment. I bet you’re already exhausted from tests and anxiety.
Mishy I’m just carrying on with the work at present although nearly told the boss where he could stick it last week. Rather be retired but can’t afford it and I’d never be able to get another job now. Good luck with the scan, sure it will be good.
Tatyana and Angela I hope you’re doing ok. I think of you all, often xxx
Angela fab to hear you have a really good treatment plan in place love your proactive attitude its brilliant and probably the best way to approach your diagnosis the anxiety with me more comes from the having to have tests which before they wouldn’t have done them!! I have a feeling its from my old neck problems getting worse with age!!! Carole i think looking for a new job is always a daunting thought im dreading having to do it all again it would be lovely to not have to work but that’s just not real life just couldn’t afford it im getting some redundancy which will tide us over but definitely not permanent Angela i def think you should apply for something i would imagine that you have hospital apps etc and the treatment which might make you feel tired etc just a suggestion it might be worth contacting the DWP xxxx
Angela i forgot to say enjoy Seahouses with the grandson i get what you mean about being a, Gran now shes my world that little girl absolutely love her!! ? i was planning on taking a trip there myself as i can’t really afford to do much else but i love it tbere anyway where are you staying i fancy staying in the Bamburgh castle inn on the harbour front i have been looking at some b and bs for availability i stayed in Gun Rock the last time I was there the views are something else over looking the sea tbh anywhere would be good aa long aa i can get something i couldn’t really plan any that with the work stuff going on but niw i know i really beed a break of some description and with the lovely weather we have had Seahouses is the perfect place have a lovely time x I do hope the immunotherapy will be available for all you second ladies you deserve the best and really from the bottom my heart i am here if you ever want a chat ???
Missa sorry about my typos yesterday post i hope it made sense what i was saying i hope everything went well at your meeting yesterday and you have a plan in place keep your chin up be kind to yourself and remember how strong you are been thinking about you i hope you are feeling a little better after the last few days xxxx
Morning Michelle.
Thanks for you support. X
We’ve got family who have a caravan in warren caravan park (bamburgh) so we often hire one next to them. There’s an outdoor pool as well so great for my grandson. I’m not great with caravans mind and will be eating out. I’ve got OCD when it comes to cleanliness and even though the caravans are nipping, the thought of strangers using the equipment before me wipes me out. ? crackers eh!
My brother is home for a few weeks (he lives in Spain) and is coming with us so it should be lovely.
Next time you’re there you should try eating at the apple inn in lucker. It’s great.
A break does us the world of good doesn’t it. Doesn’t matter how far afield we go, just getting away from everything makes the work of difference. Xxx
World ???
Hi everyone Angela hope you enjoyed your holiday x how are you getting on i do hope everything is going well atm and treatment has been ok for you if you are already started
Missa how you doing lovely sending u ? and ?Tatanya hiya too sending you ? Carole glad you are getting on with work and stuff
For me been made redundant now had a mri for pain and few other symptoms came back i have a neurosurgery referral scan has picked up sone stuff in my cervical spine which is causing early stage myelopathy basically some of vertebrate my c spine is indenting in spinal cord causing neuro symptoms probably needing surgery nothing i can’t cope with and definitely not complaining but have been informed definitely can’t work with this going on incase it is made worse and end up with permanent disability just going to have to make my redundancy last longer than i first thought
Well it looks as though our summer is over girls just over a week ago we were complaining about the lack of rain now it wont bloody stop ?️
Take care all of my lovely fellow July girls keep ? ???
Oh Angela re the pip contact welfare rights im sure they will advise you differently they have someone who is macmillan trained but specifically help people living with cancer claim xxxx
Hi Michelle.
Good to hear from you. Our week away was glorious. We never stopped (keeping a 4yr old busy) but it was so lovely to not think about bc every waking minute. Also ? to wake up to my lovely little Miles every morning. It was very hard handing him back to his Mam. ?
Have you managed to book anything? I’ve heard that the sun is set to return soon and should stay around until we’ll into October. ???
Sorry to hear about your myelopathy. ?
At least you know what’s been causing your problems and it can be dealt with. ??
Re PIP; im going to try and get my life insurance under the terminal rules. Im sure I’ve got a lot longer than 12 months left but who knows! Others have managed to claim theirs so I’m going to give it a try. It would pay for all sorts including any private treatment I might want. ?
Tatyana, I hope you managed to get away and that your neuts are keeping themselves in check.
Carole, hoping you’re well. ?
Missa; how are you getting on? There’s so much to take in. Sending you virtual hugs and hand holding.
Hoping your treatment is going well. You’re not alone in this. ???
P.s. yes my treatment is going well. Apart from joint pain, but I had that on tamoxifen anyway. My right foot is giving me particular problems. And hot flushes are back with vengeance. Nothing else to complain about at the minute though. My wbc was slightly low at my last blood test but apparently that’s to be expected on palbociclib. All in all I can’t complain. ?
Really pleased to hear you had a good holiday ive booked 4 days away in Scotland in September couldn’t get anything for Seahouses full!!! Im going with my aunt for a couple of nights in Apri so i might have to have a run up just for tge odd day out i love it there
I bet you enjoyed the grandson i love spending time with our Ella had some lovely days out with her plessy woods the coast and sruff
Pleased your treatment is going well and you are not having too many SE its sounds like a good treatment you are having which is what you want to kick this twat into touch ?
I would still try for pip honestly Angela you are unable to work and lots if other ladies on here i see get it also a lady i met at maggies who had bowel cancer with some mets got it i know the forns can be daunting but welfate rights would fill it in for you they would come to you and go through your med stuff etc xx pleased you are going to do your ins thing too you have paid into it, i got my critical illness when diagnosed didn’t think i would but ss i was locally advanced i got it really helped me abd still is my redundancy isn’t great but its going to pay some bills and help me out
Don’t know now about work either i imagine i will have to have surgery on my spine to stop the myelopathy progressing but when i don’t know it could be a watch and wait situation but im limited physically what i can do now doc says heavy lifting catrying shopping bending stooping repetitive neck movements are all to be avoided as they could cause further problems i know it will be sorted out so im not worrying just bloody frustrated as my plan for looking for a new job are out of window now
So i will live off redundancy cut my cloth so to speak
One thing having had bc taught me is life is for living and having less money is not something im going to dwell on or the neck thing i am continuing to enjoy what i have riches or none!!!
Sending you virtual hugs and ? ? to you all
Hi everyone, I’ve been away from the forums for a while, just catching up. Angela, I’m so glad your treatment is going ok so far and I adore your positive attitude. You are so strong, lady! Great to hear about you and Michelle enjoying your lovely grandkids. Haven’t seen either of mine for a while but I can see from Facebook that they’re having a great time on holiday in Devon and Cornwall!
Missa, how’s it going with you? I hope you are getting your brain round all this stuff and hanging on in there.
I’m on the third round of gemcarbo, got a scan next week, results the week after. I’m pretty sure it’s working at least to some extent, but it will be good to hear the official version. It’s a manageable chemo, but it does mess around with my blood so treatment dates have had to be delayed a couple of times. Which is quite frustrating when you try to plan fun things and practical things for the good week, and then it moves! I can’t tell you how often I’ve had to cancel my eye test which is way overdue!
We had a fab week in the Yorkshire dales a couple of weeks ago, lovely weather, less hot than down south which was a great relief! Such a beautiful part of the country. So many sheep!
Hope you ladies are all doing well and sending lots of love.