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Starting chemo in June

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Lorna45
Member

Re: Starting chemo in June

Hello Everyone 🙂

Well i can say i have now had my first scare since treatment finished , thankfully ok .
I constantly have pain in my affected side shoulder which was getting worse instead of better , add extreme tiredness and i came up with secondaries obvously !!!!!After bloods and x rays it is calcification within the rotator cuff which expalins the pain , prob to get cortisone injections but i have opted for stronger anti inflamotories first as i believe these can be sore . lol .
Hopefully i will now really pick up and get a better sleep pain free. The relief is fantastic.

Its good to see we are all not posting but get online and give us all a happy apdate please

Love

Me xxxx

BerthaB
Member

Re: Starting chemo in June

Hello all,

How did you get on Sandytoes with your appointment. Hope all went well ?

I have only 2 Rads to go then finished.
V Tired but ok other than that.

Hope you are all doing well and getting back to your lives ..

Hugs
BB

funlady4
Member

Re: Starting chemo in June

hi everyone ....update from the last time i was on here..........well i have had my mx 31 january went home with one drainage had that in for few days then had it out. had drainage twice since, wearing a softie was awful i couldnt seem to let it stay in place. well my 6wks now had i just got my breast foam getting used to iit now at least i feel even. now im waiting on my radiothery.be back soon
one love to all xx

Sandytoes
Member

Re: Starting chemo in June

Hello,

Had an appointment with a cardiologist on Harley St yesterday who's given me some medication to protect and improve my heart so I can complete my Herceptin course. Hurrah!

Was also fun as Rexi was having her rads on Harley St so we met up for a couple of drinks and a naughty Danish and a good natter. Lovely to meet you Rexi!

Hope everyone's doing OK with work or rads etc.

x

BerthaB
Member

Re: Starting chemo in June

Hello All,

Started Rads on Thursday 8th March.12 sessions Mon, Wed, Fri.
Had second one today but had to get off the bed after 3 of the 4 fields. Cramp down one side of my back .. ouch...

Rexi - I realy wanted to finish rads before the easter school holidays so I have been calling regularly to start. Had to wait for Seroma to go down but was lucky re infection. Good to hear you have also started RADS

Work, I am already Part time 3 days a week. They have given me a few bits to do but not much.

Lorna - good to hear your are getting back to work. enjoy the next few months before the next appointment .. no one prodding and poking you for a while.

SuperT - finished Rads , congrads on the new job, 22hours a week sounds just perfect.

Sandytoes - Hope the Scan goes well and your heart is recovering. Must be a bit scary. Another holiday, great news, lots of relaxation and chilled times for you and your hubby.

Worthks - Trying to get back to my life but still so tired, lots to do that I have not done for a year, our paperwork is in a mess and most of my clothes I can no longer wear !

Thats my update done !
Hugs to all.
BerthaB

Lorna45
Member

Re: Starting chemo in June

Hello strangers

Isn't it great that we are all busy and getting back to normal , was a dream last year that I didn't think I would ever realise . Commented to my friend this week that i feel well physically and getting their in my head, ....I never was very normal to begin with.
Week 5 at work and working 4 full days and so far so good , built up to it and no pressure to go to full time at the moment , so all good.
No hospital appointments now till June , eeek, I asked onco how I would know if the tamoxifen was working , his reply was that if the cancer doesnt return it's working, so I am trying to just move on and forget , mmmm, and that's getting easier.

Hope ure rads are straight forward rexi, carry on lunching.x
Sandybtoes , u are a lucky lady
Katie , how are the kids doing , the wee one will be getting big
Super trouper , gret that u have a new job, I hope u like it

Everyone else, update please

Lorna xx
C'mon other guys , update please

supertrouper
Member

Re: Starting chemo in June

Sandytoes - how fantastic that you are getting to travel so much. We did San Francisco and Vegas two years ago for our 25th wedding anniversary. I take it you haven't had any problems getting travel insurance?

BB - good to read that you are healing now. The seroma thing is horrible isn't it. I felt like I had a hot water bottle attached to my chest. How many Rads do you have to have? I had 15 and had my last one 7 days ago. Apparently we continue to cook from the inside out for 14 days after the last zapping. I have to be careful what kind of top I wear as my neck nodes were done and the zapped area is quite a dark brown/red colour.

I started a phased return to work this week - to a new job! I was offered it out of the blue. I am only doing an hour a day this week and will gradually build up to the hours offered which is 22 per week spread over four days. Feels strange to be back behind a desk and trying to learn a new job too!

Sandytoes
Member

Re: Starting chemo in June

Hello!

Our thread has been very quiet!

I have another heart scan tomorrow to see if it's recovered at all as my Herceptin has been cancelled/put on hold. I hope it has, but don't hold out too much hope as get out of breath SO easily. Hoping they'll be able to give me something to help mend it though!

My boobs are now inflated to a C/D cup! So happy with that - but looking forward to when I can have my reconstruction and feel a bit more bosomy - at the moment they are really hard.

I've been doing bits and bobs working from home for a company I used to work for - just earning pocket money really. I quit my job before I was diagnosed and was meant to be finding a new job! So no phased return for me - I need to go to interviews and get a new job. I just don't quite feel in the right frame of mind for that yet...and don't know what I want to do. It's so hard as this is a wake up call to not do anything boring or that I hate (HATED my last job!) but am also worried about the future with no guarantees so it is hard to get motivated. I would hate to do some boring job and spend all my time there and then have this come back - but on the other hand I don't want to waste my life living as though the cancer's going to come back and bite me on the bum - then it would have won.

Have another holiday coming up (as long as my heart function is OK!). Another freebie to the Maldives - but this time with my husband - he was very grumpy to be left at home last time! Then next month I'm going out to the States to do some work contracting hotels for a tour operator - so have a great trip including San Francisco, Lake Tahoe and Vegas! Earning money too! Hooray! I still worry about looking forward to things though - in case something comes up...

Am hopefully going to meet Rexi for a drink near Harley Street if our appointments overlap...! 🙂

xx

worthks
Member

Re: Starting chemo in June

Hello lovely ladies, it's been a while, our lack of posts I hope means we are all busy getting back on with our normal lives!
Rexi - cant believe how long you've taken to heal- thank goodness you've started radiotherapy now. Your having it in Harley street aren't you? Hopefully you can have a nice bit of retail therapy afterwards! Fab news re holiday what a thing to have to look forward to.
I am back to my normal 3 days a week at work - wish I could do 2 but financially need to do 3! Hard to juggle baby, house and work but so good to be back to my old normal and boring life!!
still have the occasional wobble - like I had a routine smear test last week and the nurse was talking through what they are looking for...cancer cells blah blah blah and I just burst out crying convinced myself I had cervical cancer and she had to calm me down!
I can't believe It's been a year next month since I first found my lump- I have decided to try and give something back and together with some of my closest friends we are doing the "sun walk" half marathon in July for breast cancer in battersea park. Hope to raise lots of money and started to train for it now which is hard work !!
Anyway how's everyone else doing?
Be good to hear from you all
Katie xxx

Rexi
Member

Re: Starting chemo in June

Hi girls,

I have finally started RT last Wed, 29th Feb. The wound healed up the week before - so took about 8 weeks! In the end it was the Fucidin ointment that helped it along - seems like there were surface bacteria wouldn't allow it to close properly - or it was coincidence, but after weeks of no change, it started closing within days of using the ointment

BB - have you started RT yet? Back at work? Full time?are you all healed up?
I am amazed - you had 3 operations and you are back. I had one, the infection and for weeks after I just lazed about ;). I finally went to the office for the odd half days. Now on RT, the occupational health officer only 'allows' me to go in for a couple of hours, no more than twice per week. It's really not much and when I am in the office I am getting sucked right back in, thinking - ooh I should do this and that, but I will listen and I won't overdo it. I have to promise this to myself!

I asked ages ago - how are you all doing with the phased return - what's the average plan?

RT - it's a 3h return journey, it will tire me out after a while and it's tedious. At least it's not first thing in the morning, so I have an easy start most mornings. It's weird how one doesn't feel anything during the treatment, but it deffo affects the skins shortly after, I already noticed. Aloe Vera and aqueous creme - lots of it...

One nice side effect hanging out at home: we have now got a company booked to do our loft conversion, starting in a few weeks. And today another company is pulling out all the carpet on the ground floor, replacing it with an oak floor. It's easier to book and oversee work, when not working 40-50h weeks 🙂
And - I finally booked our flights for our dream holiday - it's in Dec, so a way to go yet, but it's going to be for four weeks, children are allowed of school for that time - the welfare officers at their school immediately signed off as soon as they read my accompanying letter. It must have been good - my hubby read it and had tears in his eyes 🙂 - I didn't even make a big drama, just wrote facts.

Hope you are all well - write something!
Rexi xxx

BerthaB
Member

Re: Starting chemo in June

Hello All,

Sandytoes, Glad sis is ok and you enjoyed your hols.

Sore joints .. mm sounds familiar.

Have my Rads planning on Wednesday AM.
Sloshing all stopped now and healed well so ready for it .

Rexi , how are you doing do you have your appt for Rads yet ?

Hugs,
j.

Sookie
Member

Re: Starting chemo in June

Have had the same conversation with my Onc this morning re. sore joints - he blames TAX!

pinkypam
Member

Re: Starting chemo in June

Hi girls
Not much to report but we were about to be relegated to page two so couldn't have that.Have appt with onc tomorrow just routine follow up I think so hopefully he can advise on sore joints.
Hope everyone is well
Pam

Lorna45
Member

Re: Starting chemo in June

Hi Sandytoes - So glad you enjoyed your holiday

Yes all work issues cleared up , managing so far to do 3 days a week , so all good.

As you say ure heart is important !!!

Lorna xxxxxx

Sandytoes
Member

Re: Starting chemo in June

Hello all!

I had a wonderful holiday thank you. Just what the doctor ordered and it is very upsetting to hear of all of the holiday cancelling going on but hopefully the hols will be even more wonderful by the time you get to go on them.

Rexi and BB - sending healing thoughts and hoping that you're able to get started on rads soon.

My sister's tests came back clear (phew) but my Herceptin's been cancelled due to my low heart function which worries me but my heart's pretty important too...!!

Lorna - did the work issues get sorted?

X

BerthaB
Member

Re: Starting chemo in June

Hi Lorna,

I don't use facebook but thanks anyway.

Also tired, don't think I can keep pace with everyone else. Going into the office tomorrow must wash wig.

Kind regs,
Julia.

Lorna45
Member

Re: Starting chemo in June

BB.....I can relate to the slow brain activity at work ....however we can only get better. I was really tired after first week as well , much more than I anticipated. I have been using a good Facebook site , good laugh but sad also at times....it's called breast cancer chatter. If you are all on Facebook you should have a look and join. pm me if you can't find it if interested .xxxxx

BerthaB
Member

Re: Starting chemo in June

Hello All,

Rexi, I think we were typing at the same time during my last post ! Sorry to see you still have an infection how frustrating. Hope it clears up soon.

I also canceled my holiday booked 2nd week in April for school holidays. When I booked it I was mistaken in thinking ... operation in December rads jan / Feb be perfectly well and ready to go in April ! ... oh no ...

Re Rads apt. I do not have a date for the planning appointment yet and even if it was next week I would have to delay as I still have fluid so could not go to it yet anyway !
I am also worried about not starting it yet.. wondering what is going on in the area where boob once was.

I have returned to work last Tuesday ... mmmmmm.. Thought I would have a slow introduction, but no.... ended up with a project Tuesday PM. I was part time and expect to remain so not full 100% back. It was good to be back but realised I have not done my job for a long long time, very slow and feel half my brain is missing...

Sandytoes hope your having a great holiday !

Hugs,
BB

pinkypam
Member

Re: Starting chemo in June

Hi girls
Just checking in not got much news really.My joints remain painful and according to my GP it is nerve damage from the chemo but have an appt with my onc in two weeks so will mention it to him as I'm fed up swallowing painkillers.My holiday seems like an age ago and am counting the weeks till my next one.Its my fiftieth birthday this year so have got quite a lot planned with both my family and my other two friends who are also fifty.Any excuse for parties !I have booked to go on a moving forward from breast cancer course at the end of the month which runs for four Thursday's so hoping to get lots of info and support.
Rexi really sorry you have had to cancel your holiday.Cant you rebook for after rads as I'm sure the school would understand if you kept the kids off for a week .My kids school were great about our holiday.
Re the alcohol thing I think I am the opposite and it effects me more.Obviously not getting enough practise.
Every one else keep well love to you all.
Pam

BerthaB
Member

Re: Starting chemo in June

Hi All,

Sandytoes, sorry to hear about your sister, hope all is well and she gets her results soon to relieve all the worry.
Relax and enjoy your holiday, you deserve a rest

My bone Scan for ostioperosis was ok some issues but don't think I will need any treatment.

pam glad you had a good holiday and managed to get away from it all !

Katie re alchohol, have not noticed but have not drank that much recently due to ops and antibiotics. I will look forward to testing this once I am off this course and let you know !!

Lorna Self adhesive boob ,, have not seen the options yet, just still using my softie after last op. My mum has found a knitting knockers knitting pattern.. yes she has made me one and posted it on Friday....

virtual hug to all,
BB

Rexi
Member

Re: Starting chemo in June

Ooh - sandytoes is living it large in the Maldives - I have been looking at resorts there over the last few days and I am just a little bit envious ... But I also hope you are having a great there!

I had to cancel my holiday last Monday, since my bl**dy wound from the infection at Xmas *still*!* hasn't closed up - boohoo - whinge - annoy - getting worried about delay - whinge more .... So I *still* have not started radiotherapy and since there is no way I can start next week either, I will not be finished by the first week of April = start of school hols - for which I had booked a really nice cottage in Cornwall. When I booked it in the first week of Jan, I wouldn't have dreamed I d be delayed by so many weeks. Luckily the cottage owner understood and is ok with moving my deposit to a week later this year, when we ll go instead.
I have had another course of antibiotics, as the district nurses said that probably some bacteria prevent it from closing - they didnt take a swab and those tablets didn't seem to make much difference either. After the course and a few days on, the hospital took a swab, discovered indeed some bacteria ( the antibiotics I took the week before have no impact on this strain - what a waste of 2 weeks that was) and now I am on an antibiotic ointment - which should affect this strain. I also had more liquid drained from my breast - from a new and different site than Xmas *great* ( it's still collecting 9 weeks after the op - it was only a small amount - but v uncomfortable)

I know i am whinging - I was just so looking forward to a nice break away, at the end of radiotherapy. 😞 end of treatment, coinciding with school holidays, great timing that was. And now I am just worrying about not having started it yet at all...

Right - looking further afield - regarding returning to work. Who has done a phased return to work and what did that look like? I want to get my head around it a bit - what to expect, how you dealt with it?

Lorna - I hope you are having a good time this week! Take it easy!!

Bertha - how are you doing after your final op? You will have radiotherapy, too, correct? Do you have a date to start that yet?

Lots of love to the Junies,
Rexi xxx

Lorna45
Member

Re: Starting chemo in June

Hi everyone......mastectomy buddies, I received my new boob, a self adhesive one. So far I would recommend that you consider this . It also means that we can wear ordinary bras and I keep pushing my boobs at folk to ask of they would know, lol......close friends etc, never tried it on strangers.........yet.
Going to drink wine and chill as this is my last weekend before returning to work.....eek. I hope I am not on moaning next week....

Luv to all

Xxxx

Sandytoes
Member

Re: Starting chemo in June

Thanks Katie!

I have got pissed a few times - but it's taken ALOT more than before (and there was me thinking I'd be a lightweight having not drunk for months!). The most amazing thing is that I haven't had a hangover and I used to get REALLY bad ones even after just a couple of glasses of wine. Was wondering if it was something to do with my liver laughing in the face of alcohol after all of the chemicals it's been processing over the past 6 months!

Am not complaining...!!

x

worthks
Member

Re: Starting chemo in June

Sandy toes have a fab holiday - I promise once your in the sun u will start to relax. I am sure the surgeon was just being over cautious with your sis - when will she get the results? Dont wear less than factor 30 and have the best time - u so deserve it! Hope hubby gets home safe too x
Pinky pam where did u go? So pleased you had a good time. I agree with you- holiday was the best medicine ever!
Anyone else found alcohol not affecting them anymore . So wierd I have found last few times I have had a few to drink I feel completely fine when before chemo I would have been very tipsy ??
Have a good day junies x

pinkypam
Member

Re: Starting chemo in June

Hi sandy
I did use a higher factor than normal but only a twenty five as I am lucky and never normally burn in the sun.I did get a fragrance free hypo allergenic lotion an was careful to make sure I applied it under my arm etc and put loads of cream on at night and I was fine.I did just lie in my swimsuit and it was only about twenty two degrees but if I had felt my skin burning I would have just pulled a top on.Have a brill time and once you are there you will probably find your anxieties will leave you as mines did in fact I am sure the sun had healing properties and I do feel much more chilled out and am at times struggling to remember all the bad times.
Much love pam

Sandytoes
Member

Re: Starting chemo in June

Aaaw Pam, so glad you had a lovely time. Hope you're not too depressed being home!

Can I ask how your skin was in the sun? My breast care nurse said to be really careful as it can be really sensitive after chemo and obviously to cover up the rads area. Did you find that was the case? Did you wear a higher factor than normal...?

Thanks! X

pinkypam
Member

Re: Starting chemo in June

Hi girls
Here I am back from hols and freezing my a** off.Had an absolutely brilliant time doing absolutely nothing exept lying in the sun eating and drinking too much re bonding with my family.Although at times I felt tired and my joints were sore I felt totally "normal" and didn't wear my wig once so have now decided not to wear it any
longer
Sandy toes must have been shocking to go through that with your sis but hopefully everything will be ok and I suppose it's best to have any thing checked out properly.When I was sitting at the airport I suddenly had this feeling of panic come over me and I thought omg what am I doing leaving the country,what if I become I'll and started to tell my husband all about what drugs I was on and what to tell docs if I became unwell.His reply to me was to go to the bar get me a glass of wine and said settle down you're going on holiday and everything will be fine and obviously it was and I never really thought about it again.So go and enjoy yourself and if you are anything like me it will do you the world of good.
Pam

Sandytoes
Member

Re: Starting chemo in June

BB - hope your scan was OK.

I've had a cr*p day and need to vent I'm afraid as home alone (husband is snowed in in a ski resort at the moment and missed his flight home to spend tonight with me before I jet off on hols tomorrow).

This morning I went with my sister (who is 28) to discuss preventative surgery. We thought it was just going to be a discussion about the options etc but the surgeon asked to examine her and found an area of concern and has booked her in for a scan and a biopsy!! WHAT? We can't be THAT unlucky. It HAS to come back negative.

And then I had my heart scan for my herceptin and it's fallen below 50% so they want to stop my herceptin now which really worries me... Also worried that I might have problems on holiday and the medical facilities are third world...

I just have to try and leave these worries at the airport tomorrow and enjoy my holiday - have waited for ages for some fun!

Hope all other Junies are doing well.

x

BerthaB
Member

Re: Starting chemo in June

Hello girls,

Sandy cleavage toes !! -- wow hope you have the best holiday . What a lovely friend re the air miles. I am sure you will find a quiet spot to relax and enjoy every min.

lorna,
I just ordered Bras from the John Lewis web site with pockets one black one white. They are realy compfy so far and my softie looks ok in them. there are also some on line companies which my BCN gave me some books for. But want to wait for my fakie first. will send you a pm with the web sites for them.

As for the brain .. Struggle to concentrate on anything and also struggle to make the simplest of decisions. Planning to go back to work in 2 weeks during Radiotheraphy. need the money too..

Spoke to onc Thursday about next steps-
going for a Dexa scan next thursday to check for ostioperosis (?) my Grandma has it and my mum has meds to try to prevent it so just to check.
rads will involve X boob area , armpit and neck but can not start till I am healed.
Start Tamoxifen mid Feb.
Then he sent me for a trip to the surgeon to be drained. Was a lot sloshy but trying to avoid the spikey thing. Felt better afterwards though and lost the A cup and underarm half tennis ball for a bit I hope.

Hugs,
BB

Lorna45
Member

Re: Starting chemo in June

S toes -luv ya.....i will be blagging it , but desperte to have a wee challenge, i am brain cell dead...

i wondered about ure hol on facebook, so jealous..please enjoy every minute for us all.....u go girl....again..lol.xxxx

had wine tonight , will suffer as i have really had very few drinks.....enjoy the no lorna tomorrow..xxxx

Sandytoes
Member

Re: Starting chemo in June

Lorna, I can't help with the mastectomy bras I'm afraid as I don't need to wear a bra at the moment. I know som BC places like Maggies, the Haven and BCC run lingerie evenings. Maybe you could see if there is one near you sometime soon? Do you know how long you'll have to wait for your recon? It must be very strange being lopsided - that was one of the reasons I wanted both done.

Had second pumping up yesterday eve. Have a slight cleavage now! Just in time for my hols! My best friend and my goddaughter live in the Maldives and her dad owns 5 of the holiday islands (including Kurumba, Rexi! That's where he lives) so I get free accommodation and board and then another friend, who travels lots with her work, stepped in and offered me some of her airmiles, so in 5 sleeps I'm going on an all-expenses trip to the Maldives! 🙂 Can't wait. Not feeling beach body confident in the slightest, but will just find a private section of beach and reeeeelax....

Katie - I asked my surgeon about weights in the gym and she says it's not a good idea. She did explain why...something about repetition and build up of something in the muscle which requires thee lymphatic system to get rid of it. I tried to concentrate but was feeling a bit wobbly on account of the 2 needles being stuck into me! I guess if you love going to the gym and use weights as part of your workout then it might be best to book a session with a physio who specialises in lymphoedema and ask them to show you some safe exercises. On the Young Women's Forum there was an exercise bit where we used those stretchy bands as resistance and a physio showed us some safe exercises to build up strength and tone the arms. Swimming is also meant to be good.

BTW Lorna, I think you're doing brilliantly going back to work and think it's normal to feel a bit 'blah'. I feel quite content at home and seeing family and friends etc but dreading work but have to find something soon as need money (did win a rennet on the lottery the other day - but unfortunately don't think that will tide me over). I'd quit my job a few weeks before I was diagnosed and was looking for a new one but I just don't have the confidence to find a new job at the moment and I don't really know what I want to do and I still don't feel as though my brain is working very well and my attention span is terrible - anyone else have that problem? I used to be such a switched on and efficient multitasker but now feel as though balls would be flying all over the place if asked to juggle....

Essay from me! Sorry!!

X

Lorna45
Member

Re: Starting chemo in June

Rexi- I'm laughing to myself as my occ health appointment is the day after I return to work, it' seems very much that my manager and service manager have already made decisions. Although to be fair it was me that said I would return3 days a week initially , the ball is in my court on that aspect.
My problem at the moment is that I can't get going , I still want to be in the house !!! I keep waiting on the rush of relief and new found enthusiasm for life to kick in. I feel really tired one day, not so bad the next etc..grrrr, it's really annoying me. No amount of self preaching is working so far.....tips please. I want to be me , actually a more motivated me than before...lol.
Waiting on a call to go and get a prothesis, at last as my boobs are lop sided , the reality of this 1 boob carry on is kicking in, I am mourning the days when bra shopping was a pleasure. The mastectomy bras are a trial, though I did get a couple of passable ones on marks and Spencer's website but they are underwired , so after a few hours I am ready to scream.... But I will find ones I'm sure.

Xxxxxx

Rexi
Member

Re: Starting chemo in June

Lorna, so glad you also thought gym (sandytoes - wowh) is a bit much :). I can walk, but that also is the extend of my energy and enthusiasm. Mind you I do feel hampered by still healing.

Katie, not sure about weights - maybe double-check with the breast care nurse? They seemed to be more with the real world.

Saw the occupational health officer ( doctor) yesterday. He wanted the whole history of my bc and it turned out he was supposed to have seen me last summer / a few weeks after diagnosis - but somehow I was missed by the HR department and they were not aware of me ... When I said that I was in regular contact with my assigned HR person throughout, he didn't want to comment. Mmmh, wonder what has been going on there.
Anyway, he says that my suggested 1-2 workshops per week of no more than 2h each is plenty during radiotherapy. I want to attend those workshops, the beginnings of a big project this year, and I want to be involved early.

The phased return will be discussed later during radiotherapy.
How were your phased returns structured?

Rexi xxx

Lorna45
Member

Re: Starting chemo in June

Supertrouper - ive got a westie...too cute, you too.lol.xxxxx

Sandytoes
Member

Re: Starting chemo in June

Long walks though Lorna! Didn't you do 4 miles the other day? I am desperate to shift this blubber and build up my fitness again. All part of feeling like "me" again...

I've never been told about my tumour markers...I still have bloods taken every month for my Herceptin so was assuming they were keeping an eye on my liver function and tumour markers...but will ask next time I see the onc.

x

Lorna45
Member

Re: Starting chemo in June

Whats this about tumour markings......oh we learn new stuff every day. See my onc in feb so will add that to my list....

Sandy T- GYM.....WTF, lol, walking is my limit at the mo.... go gal ..xxx

love to all

xxxxxx

Sandytoes
Member

Re: Starting chemo in June

Lorna, that is shocking. I'd be really upset too, in your shoes. Have you called the helpline for advice?

Rexi, sorry to hear you're still having problems with your wounds. Wishing you a speedy recovery so you can get the rads ball rolling.

Katie - I've been going to the gym or for a swim everyday. I'm not sure about weights, but I've been steering clear at the moment. I see my surgeon on Thursday and will ask her. Is your expander under your muscle? That's what I've been struggling with - everytime I do something that uses my chest muscles it feels really weird. I almost drowned when first went swimming. Feels great getting some fitness back though, isn't it? And I am currently having my Herceptin and they weighed me and I've lost 5lbs in 3 weeks since my last one so I'm pleased with that. Although a long way to go!! Need to lose about 2 and a half stone! Damn chemo munchies, good hospital food when in for my op and A gluttonous Christmas and New Year!!!

X

worthks
Member

Re: Starting chemo in June

Lorna, I just don't get how your work can be that insensitive. They clearly have absolutely no idea what u have been through. Maybe it will be fun to work with your friend in a different role?
rexi, my onc was also very vague about the tumour markings. I was just being nosy and looking through my blood test results a while ago and noticed tumour markers on one of the pathology reports and asked what this was. She explained they check this at the beginning of chemo and mine had increased which apparently is quite normal as the neulasta injection makes this result high. Therefore she just wanted to check it had come back down 3months after my last chemo. It should be between 0-25 and mine was 40 while I was having chemo and now came back down to 12 so I am classed as "normal" however she did stress not to read too much into it!!!
Let me know what yours is now.
On a separate note, I am back training in the gym to shift the stone I put on last year. Can I lift weights with my left arm that I had the lymph nodes removed from?
Katie xxx

Rexi
Member

Re: Starting chemo in June

Lorna, I totally understand your anger and frustration. Rant as much as you like, it hopefully help a little bit. If they are trying to move me off my team or my role, I d be very upset. 
I have been on regular contact with my line manger and so far we are still on the same page. Early Jan, my HR department suddenly has shown an interest in my wellbeing and how they can 'support me better'  - I was totally fine when they just let me get on with it - one of the things they wanted to help me with was re critical illness cover - jeez - they are months behind! The small print of that insurance says, to have to contact them within x number of weeks of diagnosis - I would have forfeited a claim months ago if I d waited for my hr department! Anyway, they arranged me to see the occupational health doc next week. For an hour.. I understand he is really there to figure out the phased return etc and write a report. I can think of advantages and disadvantages of this, let's see what happens. 

And re 'all clear' comment - it's so very tedious having to explain this over and over again. Television has so much to answer for. 

Katie - what did your onc explain re tumour marker? I asked my onc last week after you mentioned it and his answer was a bit fuzzy. It sounded like they can cause more heart ache with inconclusive results, bit like why they don't do regular mammograms on younger women. He said they have not checked them on me. As he was going to request some blood tests for me anyway (after the large amount of antibiotics over Xmas, during which a liver test went weird), he has also requested a marker result. What are the numbers that will come back and how should they be interpreted?

Sandytoes, I have read the blog. Couldn't believe it! So so sad 😞

Not started with radiotherapy yet. The wound is Still open. I have just been put back on antibiotics on fri coz it's seemed to take to long. Can't start with RT until it's proper skin, as it's near or even in the area they want to treat. Getting slightly anxious with the delay...

Rexi xxx

Lorna45
Member

Re: Starting chemo in June

It is what i have been focusing on ,i so want my "normality " back .I work in a great team and i am 1 of only 2 of us who have a permanent contract...local goverment at their best. It is simply convienent for them to move me for service continuity , kidding on that they are doing it in my best best interests!! THEY are telling me that i would struggle to cope with the responsibility grrr makes me so angry

supertrouper
Member

Re: Starting chemo in June

That's awful Lorna. I have to ring my supervisor every fortnight to let her know how I am. I am not even sure if I want to go back to work even though they have kept my job open for me. I had only been working for them for 3 months when I was diagnosed. At the moment I don't think I could tolerate the bitchyness again. I will see how I feel after Radiation treatments.

Lucy_BCC
Member

Re: Starting chemo in June

Hi Lorna

I am sorry to read that you are having a difficult time at work and wondered whether you had read the BCC EMPLOY charter which sets out your employers responsibilities regarding your breast cancer diagnosis, it is available to download or order so that you can give them a copy and you can read more here:

http://www2.breastcancercare.org.uk/publications/financial-practical-support/employ-charter-informat...

Our helpliners are also here to offer you further support and information on 0808 800 6000, lines are open Mon-Fri 9-5 and Sat 9-2

Best wishes
Lucy

Lorna45
Member

Re: Starting chemo in June

Hi -I feel the same except im waiting on the happy feeling to kick in. I have a cough that antibiotics did not clear, its ob nasty in my mind !

I went to discuss returning to work , was really optimistic and keen to get back in my team. I was flabbergasted as they are insisting that the best way to "support me" is to move me . Now, it is to work with my friend who they are struggling to get a body for to decrease her ever expanding workload. It is a stressful job that she is struggling with , as much as i want to be useful to her i feel that it may get inbetween our friendship. She has been a rock to me , stays in same street to boot.

Anyway , after a heated meeting it boiled down to the fact that my team need continuity , they are scared i will go back of sick. I feel so upset about it as that is obvously my demon !! She also asked me when i hoped to get the all clear. I explained to her the blah blah regarding my diagnosis and ongoing hormone therapy to which she replied that

"oh i hear folk saying all the time they have the all clear ".....stupid c**...

It is for a 12 week period so i will do it with my head held high as i am determined that such crap will not stress me this year , they should have a course where employers can go to teach them how to deal with people returning into the workplace after a serious illness .

Rant over...

xxxxx

worthks
Member

Re: Starting chemo in June

Please dont be sorry sandytoes, I would have read it anyway as I follow her on fb! Whats your facebook name?
I know exactly what you mean about feeling normal and happy now, and I guess every ache and pain we now get is going to bring us back down to reality with a big fat THUMP!
I did go back to my oncologist (thats who i meant when i said doc) she was so uninterested in it! I bet they get this all the time!
I am going to wait another week and if I still have got the pain insist on another appointment.
I used factor 50 in the sun and covered up apart from when I went swimming with the kids.
I was in no rush to get my body out in a bikini anyway!!!!
thanks for the reassurances once again
Katie xxx

Sandytoes
Member

Re: Starting chemo in June

PS Katie - did you completely cover up your rads area in the sun or just go with a high factor suncream?

Lorna - hope you're enjoying freedom from your daily hospital trips!! X

Sandytoes
Member

Re: Starting chemo in June

Hi Katie,

Sorry to have brought Lisa's bad news to your attention - it was only when Rexi was talking about the book, but I've stopped recommending it now for that reason. Her book really helped me when I was first diagnosed and I read the book in one sitting and bought copies for others. It's really sad.

I've been to my onc twice with worries now. I had a cough that lasted a couple of months - he said I was fine and it did go. And recently I found some weird red bumps by my mastectomy scar. It was the weekend. I was home alone, was naughty and googled and diagnosed myself with skin mets and got in a right old state! When my husband got home he also googled and got in a state too. So I know the worried feeling all too well and you can't reassure yourself with platitudes like 'it's probably nothing' as that's what we were all thinking/hoping prior to the initial diagnosis. Can you book an appointment with your oncologist or surgeon? I did and was seen 2 days later and he was SO disinterested in these alien lumps that I almost felt silly! He said it's tissue damage from rads and surgery. But I told him i'd be back if I had more worries!!

I think the thing that scared me the most was that I'm feeling 'normal' (with a few amendments) and happy again and after my scare I also felt scared of feeling happy as the more I build myself up, the bigger the fall. BUT I am determined NOT to let my breast cancer diagnosis ruin the rest of my life - which will hopefully be a bloody long time!

I really hope someone is able to check you out properly and put your mind at ease and stop the worry otherwise the worry will just take over. And I'm so sorry to have worried you by bringing that blog to your attention.

X

worthks
Member

Re: Starting chemo in June

Berthab - fantastic news over the moon for u
Lorna - yayyyyy well done on finishing honey
I am having a tough week. I think mainly because I have had a pain in my back, just below my shoulder blade for over a week now. It's not painful it just feels bruised when I touch it. I went to docs and they said I had pulled a muscle and made nothing of it. I was still concerned so called BCN and she thought it was from radiotherapy as its that same side. But I am still worried and scared and driving myself mad it's something bad. I had good tumour count results last week but don't know how reliable they are. I don't think it's helped reading that blog that sandy toes was talking about recently. I have also been following Lisa's story and am so sad at her news this month
I'm so sorry to moan to u all but feel like all my friends and family are so happy that my treatments finished but I feel the worry has only just started! Anyone else feeling like this or am I just being silly?
I am sure hopefully once back pain goes I will be ok. Do u think I should insist on a scan? Just interested to hear anyone's thoughts
Thanks junies, keep well Katie xxx

Lorna45
Member

Re: Starting chemo in June

Yee ha.... go girl .xxxx

Sandytoes
Member

Re: Starting chemo in June

PHEWEEEEE!! Great news!!

Rexi - have you started rads yet...?

x

BerthaB
Member

Re: Starting chemo in June

Hello All,

Good Results this morning, Clear margins no more surgery planned.

Start Rads when I am healed.
BB