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November 2020 Chemo Starters

473 REPLIES 473
aqua76
Member

Re: November 2020 Chemo Starters

Well ladies!

you are not going to believe what I have to tell you now

i am back in hospital and am now minus one appendix!!!!!! 
Thursday morning about 4am had pain in my side. Didn’t improve. Managed to speak to GP and then see GP and was admitted to hospital Thursday evening. Due for surgery yesterday but delayed until this morning. General anaesthetic wiped me out conpletely. Took me good 6/7hrs to feel normal. 
On plus side I’ve now managed to have some food for first time in three days!!

you couldn’t make this stuff up!!

oh and just for good measure one of ladies on the Ward has tested positive for Covid so now crapping myself incase I get that!

fionafayker
Member

Re: November 2020 Chemo Starters

Hi there, 

I had my anniversary last week. I wasn't so worried about it as I was on the first anniversary of my previous diagnosis.  I'm back at work now, almost full time. As I'm flat, I occasionally wear my falsies,  but feel more comfortable without them, to be honest.  I am struggling to get into my old work clothes, just around the belly and bum area, so have been living in leggings. 

I'm also rocking the pensioner perm! 😂😂My  hair was gray before and now it's practically white all over. People pay a fortune to have hair like mine 😂😂 !! I am going to grow it out to see how curly it stays.

Next week I'm going to a wellness clinic, run by the community cancer nurses, I'm not sure what it's about but I guess I'll find out.

I'm doing ok mentally, I am lucky that there is a psychologist available to me, if need be. Last time I did a 6 week course with other survivors, which brought out all the emotions, it didn't help that my job had changed and I was working in a new place which I hated. But in the end it did help. Just hope I don't have a huge meltdown in the future!🙄

Smilodon
Member

Re: November 2020 Chemo Starters

Oh Clare - just to add, I now have a really 'granny-perm' look and can't wait for it to grow out. It's ghastly! S

Smilodon
Member

Re: November 2020 Chemo Starters

Hi there

Yes coming up to one year and I didn't think I'd still be doing chemo. The goal post has moved often enough that I now don't think in terms of this being over - I think of it as a chronic condition to live with. 

When I feel well physically I'm much better mentally. There is a threshold though, of unwellness that when I cross it my mental state nose dives. The unwellness is entirely down to the treatment.

Kadcyla doesn't agree with me and I seriously doubt I will get through another 11 cycles - I think my blood work or lungs will dictate that rather than me just deciding. But then without it I will feel very exposed - without treatment.  Rock and a hard place.

About the future I have a kind of dual or even triple track plan - shorter term (just in case...), more medium-term and I'm trying to think longer term as a mental exercise in being more optimistic and hopeful. I'm tired of living under this dark cloud. I'm not afraid to die but I'm very afraid of being really unwell and of leaving my daughter. So I try to keep otherwise healthy and make plans.

I agree, counselling tends to churn things up and can be unsettling before being helpful. 

LLAP

S

marblecake22
Member

Re: November 2020 Chemo Starters

Hi aqua 

I’m sorry to hear how you are feeling. I totally agree though. Mentally for me this is the toughest bit. Hopefully the counselling will help but I find with that you always feel worse before you feel better, so give it time. I’ve been all over the place. I’m starting a ‘where now’ course with Maggies next week. I feel a bit let down as my BCN recommendation was for something one to one and more in depth as I have been so down about things. Anyway we’ll see how it goes. 
I guess we are all coming up to our ‘cancerveraries’ . I’m struggling with that too. When I was diagnosed I remember thinking ‘ in a years time this will all be over ‘ hmmm that was wrong. We are left with the physical scars and side effects and mentally changed forever and the constant fear of reoccurrence. 
I find I do have good days but any twinge, pain or ache and I’m back to square one … is it cancer back? I’m hoping this gets better with time but now with it being a year and the mammogram looming how can I move on? It’s all still very fresh. 
Don’t know about anyone else but I’m really fed up with how I look. I feel guilty about this .. I’ve had truck loads of treatment and I’m still alive - I should be grateful. But I look and feel like a granny. No amount of makeup , hair bands etc makes me feel better but I try. It’s very hard 

We’ve all got to keep going. We’ve been dealt a bum card and our lives are changed forever. You are not alone Aqua - I certainly feel the same - sending all my love

how is everyone else feeling now it’s a year? 

clare xx

aqua76
Member

Re: November 2020 Chemo Starters

Morning ladies

How are we all doing today? 
im on a bloody rollercoaster of emotion at the moment. Am literally all over the place 😞

maybe it’s because I’m having counselling sessions so it’s just bringing it all to the fore, but I’m so tearful and worried about the future and just can’t seem to focus. 
plus I started on tamoxifen and getting awful pains and tingling in my hands and fingers. Told the oncologist who said it was a residual from the docetaxal (last dose was 6 months ago so I don’t think so) she’s always been very good and I feel like she’s just dismissed it. And now the thought of 5 years of pain and tingly hands and whatever else it throws at me just hits me for six

plus on 29th it’s one year since my diagnosis. Never thought I’d still be the midst of it one year on. It’s soul destroying. I’ve been strong for so long and don’t think I can keep it up much longer 😞

sorry for the long post. Just really struggling with things these days, I thought the tough stuff was the chemo and surgery but beginning to think it’s right now. Xx

Smilodon
Member

Re: November 2020 Chemo Starters

Hi Aqua

It is hard looking at doing this until May (I have no 4 next week). I guess it's better than the alternative - if it works. I had several positive lymph nodes after surgery so I know I should persevere. It's hard though- especially being back at work. Some side effects can be helped - some you just have to live with.

May will come - and then when there is no more treatment a whole other level of anxiety will set in 🙄 I'm sure everyone assumes I'm done now. It does seem to drag on and on...

S

aqua76
Member

Re: November 2020 Chemo Starters

Just had my appointment come through for my Covid booster!!

we met our GP friend at the school drop off this morning and he said invites were going out and he’d seen my name on the list 🙂

He said anyone who had chemo in 6 months before first vaccine should get called up so that would be most of us I imagine!!

Quite relieved. I’ve still been quite cautious and wearing masks in public etc due to not know what sort of antibody response I have. 
feel much happier today about trying to get back to a vague level of normality 🙂

aqua76
Member

Re: November 2020 Chemo Starters

hello

ive just had kadcyla number 3 of 14. 
first one was fine then had sickness and nausea with the second. 
they gave me stronger anti sickness meds for third and seems to have done the trick. 
have also been getting tingly fingers as well and some headaches.

i also started on tamoxifen last week so sometimes not sure what to attribute side effects to!

im trying to stay active and drink lots of water to hopefully counteract anything. 

speak to oncologist about the side effects and they can hopefully help.

im mentally struggling with the treatment now. Thought of doing this till next May is soul destroying. 
I just feel like I’m falling to bits!!

Smilodon
Member

Re: November 2020 Chemo Starters

Hi there - just wondering how others on Kadcyla (TDM-1) are getting on? I've been having quite a few issues with it - nausea, headaches, fatigue (might also be remnants of radiotherapy effects), neuropathy - now very low platelets and a worsening cough. Hoping bloods will be good enough to continue but on a reduced dose. Not confident I will manage another 11 cycles of this though.

S

Felippe
Member

Re: November 2020 Chemo Starters

Hi Charlotte,

Thats great news that your flushes are subsiding now, that’ll be good if it happens for me too - I’ll keep you posted x

Felippe
Member

Re: November 2020 Chemo Starters

Hi MayC

Thats super useful info thank you - I’ll look into the lady care magnet. I’m particular keen to try non medicinal solutions, I feel like I’ve had enough junk pumped into my body in the last year! 
I’ll keep you posted! 

MayC
Member

Re: November 2020 Chemo Starters

Hi Felippe

I was having the beginnings of menopause before all the cancer stuff anyway, so I'm hoping chemo has catapaulted me fully into it and a long way towards being out the other side! I was diagnosed almost a year ago (22nd Sept) and finished active treatment in June. My last period was Sept 2020, so here's hoping! 

The hot flush stuff isn't much fun, but I am managing it. I used to be always freezing, so having 'slightly' raised body temp isn't too bad. I'm waiting to see how I go with winter and central heating, etc...🙄

There is some evidence about a thing called a 'LadyCare Magnet'. It's a magnetic device that you put in your knickers somehow (!) and it refduces the symptoms. It doesn't work for everyone tho, and is about £40 or £50, so not cheap, but worth a thought.

Wishing you all the best!!

 

charlotte3112
Member

Re: November 2020 Chemo Starters

Hello Felippe hope you’re doing ok. I had my ovaries removed (BRCA2) in July and for the first 6 weeks was awful with hot flashes and at night was worse. I have the bedroom window fully open and just have cotton flat sheet over me instead of the quilt (I push it all onto hubby 😂). But now my body has found it’s balance and I’m much better, they’ve not stopped but manageable. I do know you can have anti-depressant that deals with hot flashes instead of hrt because I was offered these, although not what they are meant for but one of the benefits of them so maybe mention this to your GP. I just waited a few more weeks instead of more meds and it’s finally subsided for me. Hope this helps and good luck 💕💕

Felippe
Member

Re: November 2020 Chemo Starters

Hi All,

I haven’t posted for quite a while, sending lots of love to you all.

I’ve completed my treatment for triple negative, am BRCA1 & now undergoing further preventative surgery which is removal of ovaries (done last month) and double mastectomy & reconstruction (to come). 
My question to you is about hot flushes brought about by menopause. Mine are quite debilitating- are any of you encountering this and what treatment have you been offered or what’s worked for  you? 

fionafayker
Member

Re: November 2020 Chemo Starters

Good luck with the 1/2 marathon! I have run 3 years ago, but I can't run now,  I have dodgy knees, but I've started swimming again and going to the gym.

Good luck tomorrow,  I'm sure you'll be fine! We definitely need more nurses! xxxxx 

ELLEGEE77
Member

Re: November 2020 Chemo Starters

I had my first diagnosis at 29 15 years ago, and I really struggled with the 'right now you're off back into the real work with no more scans' . So knew it would be the same this time. As you've said my trust only do further tests if you have symptoms. As time goes on you do move from thinking every single ache or pain is cancer, so relax a little, but it's always there. 

Aqua76 well done, I'm doing a half marathon at the end of Sept for Breast Cancer Now, god knows how, chemo has put me in menopause and my joints are very painful, taking so many supplements but nothing helping at mo. Altho I have read it takes a few months for some to take effect.

Monday is a big day, I start MSc in Adult Nursing, which was deferred from last year. I can't wait, but at the same time really anxious  my memory has been affected by chemo and hasn't come back yet. After going through this twice, I am living life how I really want to now. The husband needs to watch out and step up, as he has been useless and saw too many bottoms of empty glasses. Life is for living, as much as we can do. Xxxxxx

fionafayker
Member

Re: November 2020 Chemo Starters

I was on Tamoxifen,  I had some really awful hot flushes, and achy feet and toes.  I've been off it for a year, and once I'd finished chemo,  I realised it had made my head a bit fuzzy too!😬

I've signed up as a volunteer at the Race for Life here in 2 weeks. I'll be doing admin stuff. 

Take care xx

aqua76
Member

Re: November 2020 Chemo Starters

Hello everyone!

hope everyone is managing ok x

ive started my tamoxifen today. Absolutely  crapping it about potential side effects. Have read some right horror stories!

In other news I’ve signed up to the breast cancer now run 100k in October fundraising challenge!!!! Eeek 

fionafayker
Member

Re: November 2020 Chemo Starters

Yes, I'm in Luton,  the Luton & Dunstable hospital has one of the best breast cancer treatment centres in the UK,  so I guess it is a bit of a postcode lottery.  

I must admit,  I did avoid news about Sarah Harding after the initial news. 

I don't really like being the centrd of attention,  which I have been returning to work,  maybe that's why I feel uncomfortable with all the attention and the 'you look so well's. 

I have my first infusion next  I'm also a bit nervous about it, but it's on Friday afternoon so I'll have the weekend to recover if there are any side effects. 

Take care everyone. ❤❤

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi I know what you mean it’s as though everything we feel is a reoccurrence. I’ve a bone scan scheduled next Friday following aches in collar bone and back so feeling the scanxiety with you. But we should stay positive because it’s going to be good news after our scans. Good luck be thinking of you 👍💕

Smilodon
Member

Re: November 2020 Chemo Starters

It is very worrying going forward - wondering if it's back or not. I've been having a lot of headaches so dr scheduled a CT brain scan next week. OTOH that's great but OTOH 😱 Scanxiety! 

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi

yes I contacted PreScan about a body MRI, at first they said no because I’d just had recent breast surgery etc. Then I spoke direct to one of their Dr’s and explained I want a screening programme he suggested bi-annually or every 3 years. I don’t want to rely on ‘maybe or maybe not’ missing a sign of reoccurrence then waiting 2-3 months for a scan if I can get past the GP receptionist and then convince the GP!! I understand my GPs thinks it could throw up other concerns, but I’m the one who feels like I’m a ticking time bomb! And I’m only interested in cancer. So I don’t really care what they think tbh, I’m doing it knowing I’ve done all I can. 

Re the bone injections I thought for me was easy compared to chemo no side effects and I’m due my second in October. Good luck and take care and do what you need to do👍💕💕

marblecake22
Member

Re: November 2020 Chemo Starters

Hi 

Charlotte - do you mind me asking where/ how you accessed the MRI scans? It would be something I might consider also - I’m not at all comfortable with relying on spotting something myself when it’s probably too late!!

Fiona - are you in the uk? I’m worried there might be a bit of a postcode lottery with regards to follow up. My smear test is way overdue - I keep putting it off as I just feel overwhelmed when I think about it - stupid I know

I’m back at work and it definitely helps take my mind off cancer - you look well comments I’ll take …. When people used to say that to me in the past I translated it to ‘ you look fat’😂 but I’ll take it for what is meant now! 

I tried to avoid all the news about Sarah Harding. It is very sad, it all being in the news has upset me and set me back a bit mentally. Just brings it all home doesn't it? 

I’ve got my first dose of acid on Friday - how have people found it? I’m just dreading feeling poorly again😩 also got an assessment for counselling 

love to everyone xx

 

fionafayker
Member

Re: November 2020 Chemo Starters

I seem to be a lucky one,  I'll be having scans,PET& ct, the infusions for 'when/if' the cancer returns. Im trying not to dwell on it, as I do have good support from my cancer nurse at the hospital and the community cancer nurses. I have started work this week (phased return) and the 'wow you look really well ' is starting to wear a bit now, hopefully it will die down when I've seen all the old faces again. I also wonder, did I look awful before? 🤔🤔😂 I'm having a smear test this morning, I have had abnormal cells in the past so hopefully the pesky c cells haven't moved there! 

Just quickly,  anyone else get upset by the death of Sarah Harding at the weekend? I didn't cry, but it did bother me.

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Clare

I've just read your post and I’m at the same stage as you and discovered no screening for high risk etc. I’m BrCa 2 and realised there’s no screening, even for the other cancers they know BrCa can bring🤷‍♂️. Although I have managed to source in UK a body MRI bi-annually privately which I know will help me mentally that I’m doing all I can to catch anything early. The Dr said it won’t find anything less than 7mm but he’s ok with setting up a screening programme for me every 2 years and completely understood the dilemma we face in UK.  At the end of the day it’s the cost of a holiday abroad that I’ve not had for 2 years 😜. It could throw up other issues but i can handle other issues as long as it’s not ‘C’. 
I hope you manage to move forward with finishing treatment and completely agree it’s the sit and wait that is the hardest journey💕take care xxx

marblecake22
Member

Re: November 2020 Chemo Starters

Hi 

 

yes I’m UK. That’s put my mind at rest a bit - thank you. However my consultant painted such a grim picture of reoccurrence that myself and my husband have been reeling since and I was expecting more follow up really - not just ‘that’s it bye’ so I’m really struggling with that. Also my GP  was very much make the most of each day as if it comes back that will be it!  I know no one can categorically say you are cancer free ( I realise now that’s only something that happens in the movies)   But the language they use just annoys me - like you I imagine it’s still lurking somewhere on bad days. I’ve always been a bit of a hypochondriac so keeping a balanced view of any aches and pains is going to be a challenge! 
As I move forward the good days outnumber the bad so I’m getting there 

 

in other news my hair is getting to the mullet stage now - dead straight pre chemo - curly now😂

Kitkat23
Member

Re: November 2020 Chemo Starters

Hi Clare

Are you In The U.K.?  as that’s standard not to scan unless you are symptomatic later down the line .... I know what you mean about feeling vulnerable though....I hope as you get some distance between finishing your treatment you will feel better about it..... I finished chemo in November 2020 and back at work .....life pretty much back on track ( aorta from taking letrozole and having 6 monthly zolendronic acid) .... lots of days I don’t think about cancer.....but if I get the slightest niggle, I think The worst.... i am thinking this will just be my life now..... i think we all just have to be super vigilant about our health without being obsessive ( not easy though!) .

No one will tell you that you are cancer free because no one knows and no way of detecting this .... that’s what I find hard too.... and always imagine that there are some teeny tiny rogue cells which are travelling round my body....unseen....but I take the letrozole daily and have the 6 monthly infusions ....so am doing everything I can to prevent a recurrence....I guess that’s all we can do.....I wish you the very best of luck for the future.

marblecake22
Member

Re: November 2020 Chemo Starters

Hi ladies

 

i had my oncology phone call and once again I’m left confused. I’m to have the acid for 3 years every 6 months as expected but no CT scans - apart from the acid I’m effectively discharged from my oncologist. Can I ask what qualifies you for this? Or is it just a postcode lottery? The nurse I spoke to said it’s not their policy even though I’m high risk🤷🏻‍♀️ The consultant had hinted at this too as she firmly told me there are no scans to pre empt any reoccurrence and it rests solely with me to spot any symptoms. But surely by then it’s too late? I’m confused. They won’t say I’m cancer free only that the ‘cancer we know about’ is gone - suggesting I could still have it somewhere? Or is it that they are so frightened of being sued they use this wishywashy language? Is anyone else finding this? It’s not just me - my husband has been to every appointment with me and feels the same. 

im worried I’m being fobbed off and need to try another hospital. After the ‘we’ll pop your boob in the post’ incident I’m being to think that aftercare is non existent!!!

 

sorry for rant 

 

Clare xx

ELLEGEE77
Member

Re: November 2020 Chemo Starters

Hi all.

Nice to hear from you and how you're all doing. 

I'm OK, I was triple negative so no more treatment, which is a mixed feeling.

I have no faith in my oncologist. The appointment after radio he told me I'd have a mammo in a year, I've already had BC and had recon on the original side, I wouldn't mind but I explained all this in our first meeting, when I had to tell him then and confirm my first lot of chemo, which affected how much EC I could have. So I said how can I, I haven't got any breasts!!

 

So from my previous experience time is a healer, it was quite a while for me not to think of mets or reoccurrence, I made it 14 years, so I am in that is it coming back!/mets cycle again. I'm trying to live for now and build a future, I'm starting nurse training in Sept and I'm hoping that will focus my mind on something else!!!!

It's been difficult for us all and only we can know what it's like to go through this. I think counselling is a great idea I've had it for something else in the past and it really helped me! Xxxxx

aqua76
Member

Re: November 2020 Chemo Starters

I was like that as well last week. 
I walked back into the chemo room and I was just so demoralised to be back again. 
I hated the treatment on Tuesday. Just felt like I was right back to my first chemo in November.

am glad I’ve started talking to a counsellor. I think it will do me good. I’m actively trying to sort out my work/life balance and am going to have to be selfish and put myself first for once. 

I keep thinking I’ll be so glad when this is over but at this moment in time I have zero idea when I’ll get to that point. 

love and hugs to you all ladies. We are all in same boat and doing marvellously. Xxx

Smilodon
Member

Re: November 2020 Chemo Starters

Hi Aqua and everyone

I'm also on Kadcyla having had node mets at surgery. I had a lot of complications after surgery and just finished radiotherapy last week. Back to Kadcyla tomorrow 🙄 which although milder than previous chemo I did not do too well on. I'm amazed you worked FT all the way through Aqua 😮 no wonder you're feeling worn down. I went back to work in June which has been a bit tough but thankfully I'm not FT. 

I really feel like Kadcyla will be make of break for me but I really do not like having to go back to IV-style chemo, blood tests etc. You can't mentally distance from the ongoing treatment when you are regularly sitting in the chemo suite with a tube in your chest. The goal post has moved so many times I no longer thinking about being through with treatment - it's just a chronic condition.

That said I am actually quite up and down - sometimes quite breezy and carpe diem and next minute thinking about getting my effects in order and writing notes for dd.

Agree with pp that most people assume I must surely be done and 'all better' 🙄 by now. This is not a situation where you feel ill, get treatment, then get better. With BC you are told you are very ill but you don't feel it - until you have treatment which does make you feel properly ill. Then afterwards you don't know if you're better - you just wait and see if you relapse/survive. But people assume that when treatment ends you can put it behind you because now you are 'better'. Er, no. 😕

Let's keep in touch 😘

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi Ladies 

sorry for not posting for so long it’s been full on! Long story short I had my ovaries removed which was a blessing because I was fed up of having monthly zoladex injections and tbh I’m 55 now so really didn’t need them anymore 😂. I’m also having bone infusions every 6 months but if it keeps those pesky C cells away them I’m good with that. I agree with lots of you it’s mentally trying to process what we are still going through! I’ve really struggled with it, I keep thinking it’s still growing somewhere and can’t move on. I’m seeing the oncology phycologist apparently every unit has a phycologist attached to their centre. Apparently the biggest concern when finishing treatment is the fear of it returning. I’ve been coping ok with chemo weight bc I’ve joined slimming world again just to get me back on track. It’s been great nobody knows I’ve gone through treatment it’s a different circle of people so I can just be normal and I’m sat with a wig on😂!! Hair has been slooooow growing but I could get away with a curly ‘Mavis Riley’ 😳. Anyway I’m going for a Sharon Stone pixi in November look it up it’s ideal for growing chemo hair according to my hairdresser who specialises in cancer hair growth and wigs etc (who knew this was a profession). Anyway ladies I’m going to keep coming back on here because we haven’t finished and mentally it’s a challenge and probably our hardest part 💪🏻👊keep posting bc I love to read updates and speak soon 🥰💕💕xx

fionafayker
Member

Re: November 2020 Chemo Starters

Hi Aqua76,

Firstly kudos to you for working through your treatment! That is amazing! It's good you're seeing a counsellor,  it certainly helps!

I finished radiotherapy 2 weeks ago, and I'm now preparing to return to work on 6th September. I was there last week to sort out times and electronic stuff. I'm actually looking forward to it and a bit nervous too, as it's been almost a year since I've been there and there are lots of new staff.

I spoke to my oncologist last week,  I will be having scans every 6 months (my last ones were clear..phew!) plus the infusion of zoledronic acid, which is to strengthen by bones and to try to prevent the pesky cancer cells mestasising in my bones. I am stage 4 so it's likely to return at some point,  hopefully not for a long time and not in my bones!!

I feel really well,  apart from the bloody fatigue although I am trying to work through that!

Take care everyone  hope to hear how you're all getting on post treatment. 😊😊❤❤

aqua76
Member

Re: November 2020 Chemo Starters

Thanks lovely x

Was a bit of a pent up rant last night, and the frustration of yet another treatment I hadn’t expected. It’s so much to deal with. 
I’ve started seeing a counsellor. I got a referral via my radiotherapy xentre and thought it wouldn’t do any harm. 
I have worked pretty much full time all the way through chemo, mastectomy and radiotherapy and think I’m finally beginning to feel the stress of it all. 
And yes, I feel people are getting bored of me and my updates. Now that chemo/surgery is over I don’t think they realise I’m still being treated.  
just feel that I’m still many months/even years away from the finish line. It’s exhausting. 
Plus I don’t even recognise myself in the mirror anymore. I look at pictures when I still had hair and I just feel like a stranger. I don’t mind my short hair. The whole wash and go is brilliant! I even brought some hair product to put some shape into it. 
My self image is at an all time low. I feel hideous, my chemo weight isn’t shifting, my scar tissue is hard and raised and still bit sore. it’s such a lot to try and deal with. 

another rant!!! But it’s just a never ending process, or so it seems x

i hope all goes well with your appointment this week. Try not to worry. Keep us posted x

marblecake22
Member

Re: November 2020 Chemo Starters

Hi Aqua76

its bloody hard isn’t it😔 I’m sending you lots of love and hugs . I’ve got my first oncology appointment post radiotherapy this week coming and I’m dreading it and what may still be coming. I’m far from through it also. High risk of reoccurrence and not a complete response to chemo so more to come I’m sure.  I hate the way these things are just presented to you like there is no impact on your life and you’ve just got to suck it up! 

I’m still waiting for my prostheses - after 2 fittings still no correct size for me - it’s now arrived and when I called this week to chase I was told they are short staffed and they’ll put it in the post😳 no way !!!!… I’ve demanded a proper fitting along with my so called ‘end of treatment’ BCN appointment - but it’s not the end of my treatment? 🤷🏻‍♀️ I’m dreading that also😩

I think this is a tricky stage for all of us - friends and family have stopped asking how I am now … they just assume it’s all over and normality has returned. I’m not sure how I feel about that as I feel more vulnerable mentally than ever and still very fatigued. I went away for the first time last week for a break - I felt normal … until I caught a glimpse of myself in a shop window or mirror and then my whole world came crashing down… has this really happened? Why me? Have I got a future? What’s going to happen over the next few months? 

I think I’ve had a month or so with no appointments so I’ve had more good days than bad , done some nice stuff, caught up with friends but now with appointments looming again the reality of my situation is sinking in again and I hate it. 

it’s been very quiet on here lately - I wonder how everyone else is feeling? I’m not sure I’ve been much help but I totally get your frustration😘😘

take care of yourself 

Clare xx

aqua76
Member

Re: November 2020 Chemo Starters

Hello

hows everyone doing on their journey? 
I’ve had a right shite day ( excuse my French) 

been working so much I’ve had no time for myself so took a day off. Had lovely walk, reflexology session, shopping trip. Then had my appointment with oncologist. First time I’ve seen her face to face since October! 
All started fine, had my first Kadcyla treatment last week. All ok. 
she asked how tamoxifen was going - she wrote to GP apparently to sort a prescription - news to me! 
then started talking about ovary suppression. I’ll have an injection for that. One off thinks me? No! monthly for 3-5years 😞

Am honestly getting so sick and tired of this whole process. I’ve been positive and coped with everything for almost a year now and I’m at my wits end. 
though of ten months of kadcyla was bad enough but now I’ve got to consider regular injections for however long. 
really struggling with everything now. So sick of this. 😞

fionafayker
Member

Re: November 2020 Chemo Starters

Hi MayC, 

Yes, I had radiotherapy when I last had cancer 4 years ago. Yesterday was a bit of a mare.

I was at the hospital for 4 hours!! They were running about 1 hour behind, then when I went in, they didn't have the right measurements or something,  then when they got them, something was wrong with the little box that measures your breathing!🙄

Today was better, they were only running 30 minutes late, and all the machines were ok! I didn't even have to wait for my driver, as he was waiting for me! So only 3 hours out of the house,  as opposed to 6 yesterday!😂😂

Felinefriendly
Member

Re: November 2020 Chemo Starters

Good to hear from you all

 

Finsided my radiotherapy and like u said Charlotte everythings much easier than the chemo, good that you have jaf operation for your ovaries

I had the gene test too mine came back negative but if it hafnt i would of done same as you 👍❤️

My boob is also harder and smaller keep putting avenno on mine

 

Radiotherapy said i should have follow up appointment but not heard anything yet

There is a phone call follow up with breast care nurse sometime

Feels strange not having to go to appointments

I hope everyone is doing good ❤️❤️

It really has been a journey like you said Charlotte this time last year we had no idea what we would all be about to go through xxxx

 

 

charlotte3112
Member

Re: November 2020 Chemo Starters

Hi All I agree with MayC radio can run over especially if they bring patients down from wards this can have a knock on effect through the  day so tried for morning slots! I’ve finished rads now, just had 5 high dose boosters on new programme instead of 15 so was over quick. I found over the past 6/7 weeks my breast skin has got tougher and the breast itself slightly smaller. I use E45 cream at least twice a day, I get this on prescription now on repeat not sure if you ladies use it but my GP prescribed for my slight lymphodema to protect the skin from cellulitis if you’ve had axillary clearance. I’m just waiting for bilateral MX with DIEP recon due to BrCa 2 which was found after lumpectomy but I’m cancer free which is great. Had my ovaries and F tubes out yesterday as BrCAa preventative and feeling good just taking plenty of pain meds. I see every procedure as a doddle compared to chemo. Hope everyone ids doing good and starting to feel a little bit more normal. This time last year some of us didn’t even know we had the C!! Amazing how far we’ve all come 🥰💕💕

MayC
Member

Re: November 2020 Chemo Starters

Hi Fiona

I finished 2 weeks of Radiotherapy at Mt Vernon on June 25th. A word of warning - they do seem to consistently run very late so def take a book/some form of entertainment! I think one of my 10 sessions was actually on time, and on one occasion, I was told there was 'catastrophic failure'! I did think that was a bit extreme, as the hospital hadn't imploded 🙄 but my appt did end up being 1.5 hours late. I'm thinking you've done rads before (?) but if you needed any info, there's a really good video on the Linda Jackson centre site about what to expect. Hope all goes well for you!!

fionafayker
Member

Re: November 2020 Chemo Starters

I'm starting radiotherapy tomorrow,  I've got hospital transport arranged,  as there'll be alot of hanging around. My husband couldn't get the time off work,  and I don't think I'd have been able to drive down to Mt Vernon,  a 40 minute drive when the traffic is good on the M1 & M25. I did it a couple of times last time, but not every day.  I've got books to read and will download some Netflix to my tablet. 

I have an video/phone appointment with my oncologist on 30th July to discuss what happens next. I'm not going to be discharged from her, and I'll be having 6 monthly pet  & ct scans, just had them in the past couple of weeks, so will get results then. I've started Letrozole, side effects haven't been too bad  the occasional hot flush, and joint pain, particularly in knees. I'll also be having Zometa/ zoledronic acid, an infusion, every 6 months. This treatment will continue indefinitely. 

Sugapiesan
Member

Re: November 2020 Chemo Starters

Hi Smilodon,

I am also a late starter to radiotherapy after having a second operation to remove all the lymph nodes on the affected side. 

Im having 15 whole breast and clavicle area and then 4 or 5 boosters to the lump area. 

Had one session on Friday as a starter, wasn’t too bad but was in there a bit longer than I expected, an hour rather than the 15 mins they said 😂 

Good luck with yours 

Sandra

aqua76
Member

Re: November 2020 Chemo Starters

I hope it all goes well for you. I had no real issues. Was knackered in week two but I also did 42 hrs work as well as two hrs driving back and forth each day and treatment! 
Use plenty of cream and just be super careful with the area. Let it breathe if possible. I went bra less while I was working from home

expecting a bit more tiredness next week, but saying that I didn’t really get any fatigue from chemo so this might be similar

Glad ur hair is coming back too! My niece tells me I look like a man and my little boy was screaming ‘ I don’t wAnt hair like yours’ when we tried to give him a haircut!

It’ll get longer!! Lol

 

Smilodon
Member

Re: November 2020 Chemo Starters

Hi Aqua

I'm starting radiotherapy next week after 5 weeks delay due to post-surgical issues. Hoping I won't have yet more issues as I seem to have been a bit prone to complications. 🙄

After that - the remaining 13 rounds of Kadcyla (had one to get started). Yes - it's a long old road!

My hair is looking very butch 😎

S

Shi
Community Champion
Community Champion

Re: November 2020 Chemo Starters

🥳🥳🥳👏👏👏👏well done aqua finishing rads 😎 keep slapping the cream on for few weeks take some out in handbag too if out and about, found drinking lots of water helped with fatigue after finishing rads ❤️👏👏👏well done ❤️💕💕Shi xx

aqua76
Member

Re: November 2020 Chemo Starters

Hello everyone!

all quiet since my last post, how are we all doing? 

I had my last radiotherapy today (hurrah!) all went fine. So glad to be finished (not least because it was an hour up the A1 to get to the treatment centre! My team were lovely though and made the three weeks pass very quickly. Have had some swelling and redness but generally doing ok. Expecting some tiredness in next week or so though. 
Another stage in my journey ticked off!

Onto Kadcyla x 14 next!! Never ending. Gojng to be having well over a year of treatment. Phew! Just trying to stay positive and keep getting through a day at a time

love to everyone xxx

aqua76
Member

Re: November 2020 Chemo Starters

Morning all

Nice to hear how people are doing. 
move recovered well from my surgery although my chest is still a bit lumpy, and still got some fluid inside as well

I started radiotherapy yesterday! Three weeks of treatments and I also have another 14 treatments/10 months of kadcyla. 
and will be starting on tamoxifen at some point! 
No idea when. Just going with the flow at the moment.

It’s nice thinking that all the cancer has gone (I hope!!) and everything from now on in is to prevent the little fecker coming back!

im probably going to get portacath soon. My veins lasted through 8 chemos but now they are struggling anytime they need to put a cannula in. I hate anyone other than oncology nurses trying!

 

 

marblecake22
Member

Re: November 2020 Chemo Starters

Hi Ladies

i hope everyone is doing ok? I’ve got my last radiotherapy tomorrow all being well.

I feel far from being at the end of things. At the start I thought ‘I’ll get through this, it will be over by summer and I’ll be normal again’ now I’ve got here I just feel a new era of constant fear and worry is starting. I’m high risk of reoccurrence so as soon as I get any symptoms I know that’s it. I’m struggling to live with this along side the expectation from family and friends that I’m cured and all is now fine. Maybe once I’m through this intense period of treatment I’ll feel differently, when life is a bit more ‘normal’. Friends who have had cancer tell me that there does come a time when you don’t think about it everyday - I just haven’t got there yet. I’ve still got some other treatments to have but the time between appointments will get longer. 

I thought I’d be cracking open the champagne at this stage but as I say I feel far from doing that - our lives have changed forever and there’s no going back 

Sorry to be doom and gloom - I sincerely hope you all are feeling more positive than me!

clare xx  

Smilodon
Member

Re: November 2020 Chemo Starters

Hi all

I've had some complications that mean radiotherapy keeps being delayed - hope to start in 2 weeks followed by 10 months of Kadcyla. So not feeling very done just yet!