September 2017 Chemo Starters

[jow]

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.

Jo xx

[CK]

Hi ladies. I just want to see how everyone is. Radiotherapy kind of took over in March and I was quite tired from it. I still 4 Herceptins but am doing very well. I have since met a new man who is very understsnding about the past year and loves me to bits. I managed to raise up to £10k through treatment and my next event is on 30th September for Breast Cancer Care. In June I was invited to Buckingham Palace Royal Garden Party which I went with my daughter. I hope some of you see this and let me know how you are doing. All the best♥

[Jill1998]

Hello ladies -Anyone on this thread exercised whilst having a PICC line - if so could you give some advice to this new member ? Cheers https://forum.breastcancercare.org.uk/t5/Chemotherapy/PICC-line-and-exercise/m-p/1222070

[Shi]

Fairydust, that’s terrific news, and when you are 100 we’ll all be there to celebrate and look at your round the world photos with you 👍👍👍😁😁😁😁💕💕💕✨✨✨Shi xx

[Fairydust 14]

Thanks ladies!!

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?

Fairydust x

[Shi]

Fairydust 😘😘I’m was tnbc too and you have to live, laugh and keep positive, think we’ve all been given different figures for our 5 years and we are already a year into that, so get that round the world trip booked and do all the things you want too and then live to 100 and let the state pay your home fees 👍👍👍win win 💕💕💕✨✨✨Shi xx

[Cathysid]

Fairydust,
I vote for doing what you want to do in life now! No better time to do it. You could live to be 100 - all the more time to keep having fun! No regrets!

[Mishy18]

Ladybowler 👍 nice one and on that note i think I'll put a lottery ticket on then i can do the same 😆

[Fairydust 14]

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.

Fairydust x

[Fairydust 14]

Oh thanks Ladybowler!!!! Maybe I could. Could I?

[Mishy18]

Fairydust me and you in a similar position my stats were predicted on a 5 year and like you sweetie Tnbc so no blockers and no trials currently waiting for Braca results and 1st mammo fingers crossed 👍
i really don't know the answer to the question i would just say fo what is right for YOU and enjoy each new day 💖💖💖💖💖

[ladybowler]

Fairydust

Scrap the job, travel the world and live to a 100 🙂 🙂 xx

[Fairydust 14]

• Hi. So. After my 8 week aspirin test, I have signed up to the Add-Aspirin trial for 5 years. Got my tablets. Don't know what I'm on. 100mg, 300mg or the placebo. Quite excited about being on a trial that could help bc patients in the future. 
• I took the opportunity to ask some questions about TNBC specific clinical trials but there weren't any in my region for me to go on.
• I also enquired about my prognosis and she went through the numbers again for me as I needed to be sure. 76 % survival over 10 years. 7% increase after chemotherapy.
• No hormone treatments available at all. 
• She said it was difficult to imagine living with these figures, but to believe in the best rather than the worst which I am anyway.
• I wonder if I should scrap my job, travel the world and expect the worst, or stay as I am, work full time and expect to live to 100.
• What would you do?!

Fairydust x

[Fairydust 14]

Jow, I've read a number of cancer books and I find it helps me..I may purchase the one you mentioned. Have not heard of it before now.
Hope your breathlessness sorts itself out..have to be careful of everything don't we..

Fairydust x

[Fairydust 14]

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..

Fairydust x

[jow]

Oh that is good news about those nodes!
Lovely and sunny here in Kefalonia too.
Been a bit short of breath at times but hopefully just because I’m more conscious of it rather than a physical cause. I am on anticoagulants still. I read that book called Late Fragments by Kate Gross. Very readable but undecided as to reading about cancer is helpful or not.
Hope ur all ok- JX

[Cathysid]

Hi there everyone!
How was kefalonia jo?
Fairy, hope you are enjoying this beautiful weather at home. How is the fitness plan going? Hope you are still enjoying it. I seem to have lost all motivation to exercise and I’m needing lots of rest at the moment.

I went to see my surgeon today. Lymph nodes have settled down again - phew! - and first post op mammogram will be booked in in about a month. My skin has healed well post rads. Bit tanned looking and freckly but that’s ok. Periods have come back with a vengeance. I’ve never had such a heavy period. The hot flushes have died down too so sleep is better.
I’m staying off work till September now to give myself time to recover,
Hope you are all well,
Cx

[Fairydust 14]

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!

Fairydust x

[Shi]

Hi cathysid, I know I might sound a bit 🤪🤪🤪here but have you looked down the Botox route for that? It might be a solution, people have it for stopping excessive sweating so it might be an angle to investigate maybe? Anyway just a thought. ❤️❤️❤️To everyone 💕💕✨✨✨Shi xx

[Cathysid]

Hi jo,
My work is also undergoing a restructure - we are losing half of our support staff. It looks like I am safe though - it seems that being off sick and coming back with a “disability” seems to give a lot of protection!

I went to see an ophthalmologist about my watery eye. Tear duct wasn’t blocked but the lacrimal duct was narrow. The overflow seems to be happening as I have dry eyes and in the wind my eyes need more moisture and overcompensate causing a flood. Nothing to be done about it!

Fairydust - glad the bones are clear.
Jo - glad you feel “cured”. Weirdly, I don’t! Might have to address that at my counselling sessions!

We have a little break on Anglesey planned this week. Need a rest as radiotherapy fatigue seems to be building.

Cx

[jow]

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

Jo

[Fairydust 14]

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!!

[Cathysid]

How was the X-ray, fairy dust? Hope all is well.

I’ve noticed my hot sweats have been calming down over the last two weeks. Much milder and no actual sweating now! Maybe yours will improve with time as well.

I was thinking of going back to work in July, but went for a nurse assessment at my local hospice and was told that it was too soon! September at the earliest! She does not think I’m ready at all - emotionally or energy wise. She said I must be kind to myself and rest. I’m going to be going there one day a week to try and get the support I need.

My lymph nodes on the back of my neck are still enlarged. A constant reminder that the fear of cancer returning will always be there. I think I will ask for a biopsy to be done even though the surgeon does not seem concerned. I just can’t stop myself from worrying!

Jo - how are you?

Chaffinch - enjoy these beautiful sunny days. No better way to recharge the batteries!

Lots of love xxx

[Chaffinch17]

How did the x ray go Fairydust? Hope you’re feeling better.
I’m now 4 months post chemo and 2 months post rads. Where does the time go! I am managing to be pretty active but like you say you have to have quiet days from time to time to recharge. I’m having one today pottering about at home and currently sitting in a deck chair in the shade 😊.

[Fairydust 14]

Ooh meant to add I'm 78kg now which is unheard of for me..steroid weight I think. Gone from size 10 to 16, had to buy loads of larger clothes.

[Fairydust 14]

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

Fairydust x

[Cathysid]

Good luck with the phased return Fairydust. It feels good to be heading back towards the normal world again!
Fatigue is definitely an issue after all we’ve been through. I’ve been told to treat my energy reserves like a bank account. I have to pay enough in(through rest and relaxation) or there won’t be anything in there to withdraw. I know if I have a rest day I feel much more normal the following day. If I don’t take the time to rest I start to get aches legs, weary and grumpy again. Problem was I was feeling guilty about resting! I’m trying to be kinder to myself and giving myself permission to take time to rest every day....not just when the kids are in bed!
Jow, glad you are getting over the op. Your body will still be adjusting to the change in hormones. I think keeping slim is going to be an ongoing battle for us - I certainly feel like since chemo I gain weight easily and find it hard to lose weight. I started this journey at 58kg and now am 65kg! I want to get back to 60kg but not making any headway yet!

[Fairydust 14]

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 

Fairydust x

[jow]

Hello Cathy

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?

Jo x 

[Cathysid]

Jo, did you have your op on 1st May? I had it in my mind as 17th but when I checked back through the thread looks like it was scheduled for the first. Hope you are ok. How’s the hair looking? I’m just psyching myself up to dye mine again.
My energy levels have been a bit low recently. Seem to have fallen back to caffeinated coffee in the mornings to get me going. My naughty sweet snack of the moment is dates dipped in slightly salted almond butter - yum, you have to try it!
Must get back on track once rads finish.

I finish radiotherapy tomorrow- at last! My poor nipple is red raw and swollen and oozing. Yuck! Cabbage leaves in the bra have been my saviour.

Fairy dust, have you started your trial now? I have a friend who has been recommended aspirin for reducing risk of her bowel cancer recurring. She has been warned of an increased risk of stomach ulcers so will be taking ginger and a liver ice extract to try to reduce that risk.

Hope you are all well,
Lots of love c x

[Fairydust 14]

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. 

Fairydust x

[jow]

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!

Jo x

[Cathysid]

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

[jow]

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?

 jo x

[Fairydust 14]

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.

Fairydust x

[Cathysid]

ps. The platinum was a bit goldie blonde at first but calmed down to a lighter shade after a few washes. A hairdresser recommended purple shampoo called “a touch of silver” to make it less golden.

[Cathysid]

Jo,
Hope the headache has subsided. Hopefully that’s it with the side effects for you. Good luck with the hair dying! Xxx

[jow]

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?

jo x

[Fairydust 14]

Hope lymph nodes are ok Cathysid, must be a worry. All best wishes.

Fairydust x

[Cathysid]

Jo,
Hairdye seems a much better topic to talk about. I got mine from livebetterwith website as I was sure it was ok to use after treatment. I used to use naturtint and I think I will go back to it next time.

I’ve just had an echocardiogram and herceptin check up. Ended up crying because she asked me how I was! Oops. She had a feel of the lymph nodes and doesn’t seem overly worried so I guess time will tell.

I think the treatment and emotional rollercoaster does take its toll. Might try some counselling so I can offload without burdening my family and friends!

Hope the lodger is nice and settles in well,
Cx

[jow]

Hi

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!

jo x

[Cathysid]

Sorry to hear you are struggling with joint pain on the letrozole. This does often feel like an uphill struggle. I’ve heard that different brands of drugs can give different side effects? Might be worth an ask on the hormonal treatment page? Hope the job interview went well. Let’s hope this time next year we all feel like we are at the top of the mountain sipping limoncello and the long slog uphill is in the past. It is an emotional time and trying not to think of cancer with every ache, lump and dizzy spell I’m sure will get easier with time as well.
Thanks for the hand holding 🙂

[MrsMeow]

Cathy how awful that you have this worry - maybe a conversation with the BCN or the nurses on here would help? Talking it over may help with some strategies on how to keep the panic at bay while you are waiting. Sorry I dont know how else to reassure you but sending huge hugs anyway xx Are you still in the middle of rads too? I have lost track a bit so sorry We have just been to Italy for a couple of days which followed on from a job interview 2oo miles away last week - cant believe how much I am zooming around - still have lots of arthritis from the letrozole I think they might have to change it which will be a blow but the wrists and ankles are getting beyond a joke In Italy I climbed to the top of vesuvius and halfway up when all I could see was vertical track I got really emotional as it seemed such a metaphor for going through treatment which had finished 9 weeks earlier - such an uphill climb for the view at the top... I had to have a limoncello before walking back down! Hope everyone is ok and that you get some peace Cathy between now and your appointment x

[Cathysid]

Hi all,
Just popped on as I’m in a bit of a panic. Found 3 enlarged lymph nodes on the right back of my neck. The bc was on the left side but it’s still sent me into a panic. I found the first one 2 days ago(pea sized) and my surgeon said he wanted to see me back in a month to check it’s gone back down...and not to touch it! Now I’ve found two more further down my neck. A month feels a long time to worry like this .....

[Cathysid]

Thanks for the support, as always, guys!

Hi, sorry your op didn’t go ahead. It’s always frustrating when you get a delay but try to see this as a bit of bonus recovery time. Relax and rest, enjoy the sun, the op will come round soon enough.
Fairy dust - hope you are doing ok. How are you feeling? How are your energy levels now?

My first rads went well. I was a bit emotional and stressed as I was back at my chemo hospital and felt like a cancer patient again. I tried hard, and managed, not to cry! Bit pathetic of me considering the treatment was so easy in comparison to chemo and so painless!!!
Good news - I’m loving my hair now! It’s about 3cm long and dyed platinum blond on top, and had my first haircut - had the sides shaved!!! Feel like Pink!!! Googled super short pixi cuts for inspiration. So good in the hot weather and so little work...Wash and go! Still using the lush red hair soap. Hoping you all come to love your super pixi cuts too 💜

[Fairydust 14]

Hi jow, so sorry about your operation delay, that must be a strain when you're prepared for it to happen and then your body blood says not today thank you. All the best for next time.
Regarding The hair issue, I'm growing very fast most places except my head, which is taking its time but is growing much softer and a little greater than it used to be. It's still very very short and still bald in places though. I may try some hair growth shampoo and conditioning products some day.

Fairydust x

[Fairydust 14]

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.

🙂

Fairydust x

[jow]

Hello All

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.

jo x 

[Cathysid]

Hi everyone,
Well done Mrs M on losing 10kg!!! Wow. That was quick.
My radiotherapy starts on Wednesday so finally moving into the last phase of intense treatment. Having 15 boob and neck, and 5 boosters. I’m actually looking forward to going back to work and “normality” now.

Jo - hope the surgery goes well this week.

Ali - hope your legs are feeling better.

Cxxx

[Ali49]

Hi all,

Cathy i am not having radiotherspy as I had it lsst year after my DCIS and lumpectomy so i cant have it again. As i have had the masectomy and there is no node involvement i dont think i need it anyway x

I am continujng with Herceptin every 3 weeks and started letrozole last week. On Saturday i did my 2nd park run - mostly walking - and by saturday night my knees started paining. I thought it was the walk but now 3 days later they are worse and i am walking like an old person so i am wondering of its the Letrozole. Has anyone else experienced this?
Xx