How lovely to hear from you CK, and so glad things are going well for you. And a new man! That’s an impressive achievement, alongside all that charity work.
I went back to work in July but I am finding it pretty hard, We are going through a major restructure and 40% of jobs are being made redundant. There is an interim boss in place to do this chopping. My job is in the structure but she is pushing me to take voluntary severance, on account of my cancer, It is all quite stressful, hence why I’m awake at 3am- I need to make a decision tomorrow!
Im still very fatigued at times but it’s hard to unravel as to whether that is due to the previous chemo/radio or surgeries or whether the ongoing hormone treatment, bone treatment or palbociclib (my trial drug) are contributing. Or whether the work stress is just too much for me at the moment. Had a couple of BC ‘friends’ progress recently which I think is also playing on my mind,
Im on the waiting list now for reconstruction, which is good. I’ll have a DIEP flap, where they chop out your tummy far and create a boob. Friend has just had it done but sadly has needed a dreaded PICC line back in for 3 weeks iv antibiotics .
anyway, I think of you lot often. Would love to hear updates.
You're amazing and motivating!
I am googling cruises, flights, resorts...but first need to renew my passport..Lol...was waiting for my hair to grow a bit more first, as it is still patchy...but could wear a wig in my passport photo?
Thanks Mishy....sorry you're in same boat with no further available treatments..It's a surreal thought process isn't it? I can't get onto a Moving Forward course at Maggie's till July, and so am in limbo wondering what next. To travel would be amazing...if I can get the nerve to do it..
First annual mammogram next month as well. Good luck to you with your results when you get yours.
Hope you are ok.
Hi Cathy, so sorry about your heavy periods, perhaps see a gp 're this. I had heavy periods pre cancer diagnosis, and have since found out its due to fibroids I've had for ages but didn't know it. I've just started to look at treatments for the fibroids, now my active cancer treatments are over and am happy to remove via surgery if needs be. Thankfully I have no periods any more, but do remember how it used to be...terrible!
I am glad your lymph nodes are settled..v good news for you! Hope you like your freckles post rads..
I'm still hot flushing, but exercises are continuing at the gym every Saturday. I'm really enjoying it and hope to join a 2.5k/5k walk end of June..and am looking into learning to ride a bike in July when I can join a training group.
Gardening is going well too. Am keeping the lawn mown, which is a chore but is great exercise in this weather. Hoping the sun will give me a freckly face as well as help my hair to grow more, still pretty short and patchy as well in places.
Bought some lovely garden swing chairs so need a tidy garden to look at while I swing!
But all of this is exhausting, along with working 1 and a half days a week. Housework is tiring too, and struggle to keep on top of it sometimes.
However, I have bought a keyboard as want to learn to play. Haven't really got the energy for that yet though so it's all set up but not yet being played..Oh well. I think I may be doing too much too soon so today I'm resting. Doing nothing today. I've lost my appetite as well..May need vitamins to get my energy up a bit more..
I'm still preparing/testing for the add-aspirin clinical trial, next week I see the oncologist to decide if I will take part properly and join up. I have no side effects from the tests so feel ok to proceed if my blood tests confirm all is ok.
Knowing me I'll get the placebo but nobody will know..although if I do eventually have surgery to remove fibroids, my surgeon will need to know but of course won't tell me. I wonder if surgery means I can't do the trial..I'll make sure to ask next week.
My annual mammogram is in July..Really not looking forward to it as my breasts ache and I know it will hurt to be pressed in the xray machines...gulp..
Jow, really jealous of your holiday..glad you're enjoying it..the weather and scenic views must be stunning..
Hi Cathysid, Hi Jow,
Thanks for your replies 're my bones news, I'm taking this as a sign to go all out and get fit and lose weight without worrying. I'm loving getting fit so that's a start, but have to look at my food intake and that's tough!!
I'm really sorry to hear of your separate work restructuring. If there's ever a time to play on your disability status this must be it..or use the chance to find other fulfilling jobs elsewhere. I'd imagine a redundancy payment would be paid if jobs were lost? I took a redundancy package 11 years ago with no idea what I was going to do next, but it all worked out, I kept my mortgage payments up with a small break in payments, and managed to take 6 months out of work while I tried to work out what to do next. I wouldn't change a thing about that time..things happen for a reason sometimes I think.
Have lovely breaks both of you..I'm not planning any holidays at the moment, I'm a real homebody!
Oh that is good news about your bones Fairydust, but very sad about your director. I guess BC is a better cancer to get than pancreatic but it is all so rubbish.
When are you going back about your LN Cathy and are your eyes sorted? Mine are still very weepy in the wind.
I'm doing ok, wounds have healed well but brain isn’t brilliant, and fatigue is very bad at times. I started back into the PALLAS trial again a week ago and will have bloods checked on Tues (we go to Kefalonia on Wed). I’m not sure about the emotional side- I still feel in the treatment phase but the appointments will reduce now and then maybe it will hit me.
I spoke to my GP this week about work and she feels it may be better to stay off work a bit longer. My interim boss is in place to make at least 50% redundancies. The new structure comes out end of June. I’m speaking to her tomorrow. She says she is not there to make friends...... So, I am dithering. Not sure what is the best plan. Stay off longer and go back more recovered, but have anxiety around paying the mortgage (I’m the main breadwinner) and also will need to do a bit of work anyway around responding to the restructure consultation and getting union involved. Or should I go back sooner, feeling a bit pathetic and then get hit full on by the anxiety amongst my teams of the restructure, or do something in the middle. I wonder how Mrs Meow is doing re finding another job.
On a a more positive note, I now have an appointment to see the oncoplastic surgeon at the end of June. My breast surgeon wanted me to wait longer “to see what happens” but the waiting list for reconstruction is a year long anyway so I think that will give me plenty of time.
I did did a bit of Googling the other day. Haven’t done that around BC for ages and I’m not sure it is helpful. I know my cancer wasn’t the best (stage 3) and lots of tumours (my BCN said she lost count at 20), but I’ve sort of forgotten that and I assume I’m going to be cured. It’s much easier to concentrate on that when I feel well.
I went to the beach today, in the rain. Had to pick up a second hand fridge for my new utility room which is due to be fitted next month. Bizarre to spend money on such frivolous things when I am worrying about the mortgage but my home and environment are really important to me so I’m going to enjoy my utility room!
Ive waffled on for far to long and have kids to put to bed and am out the next two evenings, plus have a school trip, boss and kids party tomorrow. Even the thought of it all is wearing me out......
Happy planting Fairydust, and hello Chaffinch
Hi Cathy, hi Chaffinch
Well, I had a phonecall from my bcn, and its good news. No cancer signs in bones, which is marvellous. There is a degeneration of my bones though, not sure of the cause. My GP will need to look into that and refer me onwards as may be appropriate. Hope it's not too bad..but I really struggle to walk normally, although I am now exercising more.
But I'm ok and that is the main thing.
Glad your sweats are easing Cathy, that must be a relief! And glad you are paying attention to the advice not to work..it is very important to be fully fit. I imagine the lymph nodes are very worrisome, I would ask for them to be biopsies if it was me, you will never be emotionally strong with the worry over your head..and you've been worried for quite a while now too. So time to get it properly checked out for peace of mind I hope.
I'm picturing you in your garden Chaffinch, in your deckchair. I have bought some seeds to plant..I think just meadow flowers ..I will plant over the weekend, and see how they go. I will buy some planters first, if I plant in the ground I'll mistake them for weeds and pluck them out! I'm not the best gardener!
I've recently started back to work for one day a week or so. First day online, and I'm informed my Director has died of pancreatic cancer..he's been off work since October but I never knew why..he was only diagnosed in October.
It's made me think whether I want to back to full time work..I'll consider it fully, and decide by the end of my phased return. If cancer recurs, I don't wish to have spent all my time back in work like I used to be. I want a happier life. I do love my job and the people I work with, but in the end they will carry on fine without me as they proved already. I am single, no kids, just want to have fun now.
Wishing you all a happy day!!
Thanks Cathy! I'll give work my best shot once my laptop is sorted out!!
. I actually have an xray on Thursday for hip pain so I'm hoping nothing sinister comes from that. I seem to ache in most joints lately since chemo so I requested an xray so I can know how best to deal with it. I get a lot of sweats too which is a nuisance. I never know what to wear that won't allow me to sweat too much.
Glad you're taking time to rest. Chemo is still in the system so it will still impact you. I still feel emotional from all the treatments I had. But I do think my cancer could have been far worse. I appreciate the treatments I've had
Hi Cathy, hi Jow,
Congratulations on your last rads treatment tomorrow Cathy. One more hurdle overcome. I must admit I didn't use cabbage leaves, I think that's so hilariously funny yet also ingenious! I have a dark side and a pale side, am hopeful they will even out eventually. Skin is peeling too, and a little sore still. I finished rads end March, so you've still got a little way to go 're side effects. I wish you all the best. 🙂
By the way, I've always drunk caffeinated coffee except during chemo when it tasted rubbish..So don't stress about the coffee in my opinion.
I'm still in testing for the aspirin trial, with some gastro type tablets as well to avoid ulcers and intestinal bleeding. The 8 weeks testing ends mid June. Then I decide if I wish to progress to the actual trial. I suppose I will. I'll chat to my oncologist because it's occurred to me that we've never discussed other possible trials specifically for triple negative, so I'll ask more pertinent questions than before..if my chemo brain will let me get the words out..I do struggle to put sentences again now..
Jow, I really hope you're ok after your surgery, I do feel for you..it sounds quite an ordeal. Energy levels are bound to low, so I suggest you rest when you can for as long as you need. I do this but I still feel tired. Fatigue is a struggle.
However, I'm trying to go back to work on a phased return..Just one and a half days for 2 months. Then see how I feel. I only finished chemo in Feb and rads in March so I hope I can cope. I will work from home. Starting this week or when my IT is sorted out. Can't work without a laptop!!
Enjoy the sunny weather
i was just thinking i should post and you beat me to it
yes I had my tubes and ovaries removed on 1 May.
it went fine, didn’t get let out til late that night as bladder was paralysed but I did escape. Recovery has been a lot easier than after the mastectomy- pain has been mild. Had a painful leg after so had to have a Doppler scan but only picked up a bit of clogging of arteries (radiographer asked if I was a smoker!) but veins ok thankfully- I am on anticoagulants already so would have been annoying.
hair is looking good thanks and I have braved going out for a week now without a wig. Dye covered the grey but I still have that yellow blonde rim at the front that I had before. I’m now known as Annie (Lenox). When it was first shaved I was more of a Sinead!
sorry to hear about that nipple- ouch, that sounds painful. I didn’t have a nipple left to get zapped by the rads.
Dates are a bit sweet for me but love almond butter. Im not eating loads but I’ve def put on weight- can tell by clothes.
Ive also been so very tired at times, I look at stuff that needs doing and just don’t have the energy. I went away to devon with friends this weekend but so craved my bed at times. I find talking for long periods quite exhausting. Brain is still not good, I’m finding that very frustrating. I just want to feel well again.
Im due to restart my trial drug this week if bloods ok. Unfortunately our cancer hospital is out of action- there was a fire which has caused damage to all 6 floors apparently. I tried phoning and was placed 60 in the queue....
Hope everyone else is doing ok if you are still reading these posts? Fairydust are you back at work?
Hi Jow, hope you are feeling less queasy now.
The trial I'm on is the add aspirin trial. To see if aspirin at low or high doses will reduce cancer recurrence time. As I'm TN, I decided to give it a go or at least see if aspirin agrees with me. It would be an aspirin a day for 5 years if I progress, or a placebo of course. I will not know which tablet I get.
It will be nice to help identify future treatment options though so hopefully will progress.
Thanks, I’m definitely a lot better today. Just hope it’s worth it.
Had DEXA bone density results back today to say normal- felt a bit odd to get a completely normal result!
i ordered the hair dye this morn, only to get an email at lunchtime From Live Better with Cancer to say there is 30% off everything on website for next 2 days - ah well!
Fairydust, glad you are looking forward and enjoying the sunshine.
You can get the 3 -6 months free gym through NHS referral for cancer recovery. You should also get an advisor to help you ease into it and build up gradually. It's slow progress but every week I feel stronger and fitter. Pilates has been great for starting to use my arm more normally and building up strength in a gentle way.
Jo, can't believe you are back in the chemo zone after your injection. Hope it passes soon. At least you have 6 months before the next one. Lots of love xxx
You sound good Fairydust! Sunshine does indeed make life better. And exercise will hopefully add to that.
ive had a rough couple of days with a temp over 39- from the iv zolendronic acid probably. Felt as bad as chemo, been shivering uncontrollably and aching all over. Temp still up but I’m out of bed and dressed. Feeling queasy so am back on antiemetics but eating less wont hurt. I gather side effects get better after first dose and if you get the drug with chemo as most do, you feel rubbish anyway so don’t notice. I don’t need it again for another 6 months.
im not brave enough to go hatless yet but will going to order the platinum blonde dye today and yes will get that purple shampoo - good tip Cathy.
what’s the trial Fairydust?
Hope your zolendronic acid is ok for you Jow, treatments never end do they..
How often do you have to have this?
Cathy, bet you're rocking the silver look..perfect for this sunny weather, nice shades and a golden glow.
I'm looking to register to rehabilitate in a gym that offers free exercise, socialising etc. With other cancer patients. I'm not getting any better with the breathlessness, and need to lose the weight that the steroids made me gain. I'll take it slowly, start in a couple of weeks I think. Buy some gym gear first.
I'm reading a lot of books at the moment on cancer written by cancer patients, and its very optimistic mostly any way.
I've started clinical trial tests, to see if I'll be suitable for the proper trial. The test will take 8 weeks, then I'll go back to the research unit for a review. So far so good though.
My hair is still very short, but I don't mind. I love short hair, just wash and go, no fuss. I go out hatless sometimes, and feel ok about it, even with bald patches in places.
My cancer journey is in a different place now, and I'm so glad it's spring as it lightens my heart a lot to have the sun out and to sit in the garden. I'm very lucky I feel.
Hope you are all having a lovely day.
Thanks re dye info- I may go for the platinum too. Quite excited by that.
Not surprised you were weepy Cathy. I had counselling at the start from Penny Brohn but am also seeing a clinical psychologist who is doing Acceptance and Commitment Therapy (ACT) with me. I think I’ve mentioned it before but it has been really good. I accessed that via the hospital
I was in the chemo unit yesterday again for my first iv zolendronic acid. 3 attempts to cannulate me... have a bad head this morning.
Hooe you’re ok Fairy?
i just came on here to ask about what you used to dye your hair with Cathy and have seen that you’ve posted about your lymph nodes which seems a bit more important than hair colour!
I’m guessing the surgeon thinks it is unlikely to be cancer related in your cervical nodes (as axillary and supraclavicular are more common with BC) and that other things ( throat infection etc) are a more likely cause? Feels like a long time to wait though . Have you seen him or was this just a phone call? Personally I think I’d like to be examined soon- just for reassurance. Waiting is no fun and you’ve been through enough. As with Mrs M , sending you lots of love.
I get a bit paranoid sometimes too, had rib pain last week (it went) and I’m still a bit unsettled about the fact that my none marrow doesn’t appear to be working effectively. I was more neutropenic when I got tested this Thurs. I’m guessing such worries are normal and get less as time passes. I hope.
well done for getting away and climbing Mrs M in Italy. Do let us know re jobs. Hope you can get that joint pain resolved. I gather some of the side effects of letrozole type drugs get a bit easier after 3 months or so. Or perhaps that’s what we get told -and then we just get used to having the pain rather than it getting better?
We have a nice new lodger moved in tonight. The last one left just before my mastectomy and bank account is starting to suffer. May not have been helped by that steroid induced shopping at the end of last year!
Hi Cathysid, all the best for your radiotherapy today...it can be daunting I know, just gotta lie back and try to relax while the radiography team take care of you.
I didn’t get my ovary removal op today- my neutrophils are still too low. I’m not sure if it’s a hangover from the chemo or due to be new trial drug. They have rescheduled me for 1 May with various blood tests in between. Im disappointed but I guess not so surprised- they were low last week and a few weeks ago.
MrsM I’m very impressed by your weight loss. I still seem to get weighed all the time by various people and it always goes up. You must have done some dedicated dieting or marathons?
Ali yes I’m aching too. Ankles mainly. I guess caused by the letrozole
How is everyone’s hair? My legs are doing well. Head less so. Cathy do you like your hair colour any more now?
Hope the radiotherapy tomorrow is ok Cathy. I found it very very easy compared to chemo. I did get very tired though- it was worse after I’d finished.
And I’m still very tired at times. Wish I felt better than this but maybe it’s normal.