Member
Posts: 141
Registered: ‎16-05-2014

Re: February Chemo Starters 2018

Thanks Wee Burd I shall investigate xx
Member
Posts: 92
Registered: ‎12-02-2018

Re: February Chemo Starters 2018

Miss Green the information about the Moving Forward Course wasn't from my care team it came from a random conversation with a lady in the Beatson cancer charity shop when I was buying a pen! I then searched on the Breast Cancer Care website for a course near me. I feel that the hospital/oncology team could do more by way of pointing patients in the right direction for follow on services although to be fair I am getting a home visit on Friday from someone on the Macmillan 1 to 1 support team to discuss any concerns that I have now that my treatment is mostly finished.
Member
Posts: 141
Registered: ‎16-05-2014

Re: February Chemo Starters 2018

Hi Wee Burd

Glad to hear you're back to work albeit on a phased return. I am lucky that my boss bypassed HR with my phased return and I cld work what I wanted. I have been working full time for the past few weeks but having a short lunch which means I can get a later train into work. I have used annual leave to cover quite a few hospital appointments as my company's policy is if you need more than 2 hrs away you need to take it as sick and I only have 3 days left of full sick pay hence using annual leave.

My BC / Onc team haven't mentioned anything about courses to help me. Maybe it's because I have not finished being poked and prodded yet.

Xx
Member
Posts: 92
Registered: ‎12-02-2018

Re: February Chemo Starters 2018

Hi everyone

 

hope you are all well.  I'm on week 2 of my phased return to work.  Doing alternate mornings again this week, and next week will be going Mon, Tue and Wed, but then am off from Thursday for a week's holiday!  Really looking forward to having a break away with my husband and the dog.  We're not going far - just an hour or so away. but it's to a lovely HPB property in the countryside, with a swimming pool and plenty of walking to be done.

 

Work is going fine so far - it's difficult to get up and leave at lunchtime, but I'm determined to be kind to myself and not get swept back into the full on pressure like before.  While I'm on my phased return I can either record the time out of the office as sick leave (in which case I only get half pay) or take it as annual leave or flexi leave (on full pay).  It doesn't seem right, especially as the policies published in the staff handbook don't say anything about that, this is just what I've been told by the business managers.  I've decided to let it be recorded as sick leave until the end of this month, as my doctor's line runs until then, and next week I'll start using the flexi credits and annual leave.

 

My boss has been really supportive and basically left me to decide what I thought would work for me and is willing to come and go with the plan. 

 

I recently discovered that the hospital has free complementary therapies available for cancer patients, so I went last week and today and have had lovely relaxing massages.  My boss has agreed that I can continue going on a Tuesday morning while I'm on the phased return (they only have appointments on Tuesday mornings) and just go into work later.  I'm feeling the benefit of giving myself a bit of extra TLC and would highly recommend it if you get the opportunity!

 

This week is the final session of the Moving Forward course - I would definitely recommend it if you have one near to you.  It's been really helpful meeting other women who've come through breast cancer treatment and sharing experiences.  The sessions have included talks giving advice on looking after yourself and getting to know your new shape, avoiding/reducing lymphoedema, exercise, nutrition, hormone therapies and side effects, and bras/prostheses. Not everything has been strictly relevant to my own situation, but it's all been of interest and the various speakers have been really helpful and answered loads of questions.  I'm really glad I got the chance to go on the course.

 

Good to hear that everyone is coming through the tunnel!

 

Member
Posts: 63
Registered: ‎09-11-2017

Re: February Chemo Starters 2018

Hi ladies

Well that will teach me to check this page a bit more regularly...thought that everyone was off to other things ! Have read through all that i missed - good to hear all your news.

I have finished chemo and RT now which is a relief. I was lucky enough to get in the Fast Forward trial for RT - 15 (usual treament)  v 5 sessions.. i had the 5 which i am grateful for - everyone was very nice but it was soo boring waiting ofr treatment and tedious having to drive every day. Quite red and stiff arm but all improving.

Mood a bit unpredictable. Have had a few tired days but generally ok - just the motivation to do anything is my problem. Night sweats are awful - fan on low all night. Started Tamoxifen so not sure if thats making it worse - was already having them prior to starting. Nails discoloured but no lifting which is a relief - were extremely tender for few weeks. 

Due 7th Herceptin next week - Healthcare at Home visiting at home....fab service, never knew it existed. They will give me the injection at work if i want to - just need to stay with me for 2 hrs to make sure no reactions. Anyone else get a drippy nose from it ? Hair is growing back at a rate of knots - quite a nice shade of grey...not sure if i'll stick with it though ! Eyebrows and lashes minimal  - dont feel i have much protection from dust etc, same with nasal hair...i sneeze far more than i used to !

Due to go back to work 17th sept on phased return over 6 weeks - worked it all out with my manager but he has said its entirely up to me if i want to slow it down or do more. They have been so supportive but then if a cancer services dept cant do that theres no hope ! 

Chrissy - Cant believe you have to use AL....thats disgusting. I get paid full time from the start - should be the same wherever you work in the NHS.

Take care all and enjoy the rest of the BH...peeing it down here so wont be doing much i feel ! xx

Member
Posts: 65
Registered: ‎21-01-2018

Re: February Chemo Starters 2018

Hi Chrissy - I too work for the NHS and in my case they have been supportive do far. I have been off since Jan and could have half pay until Dec I think.I have had one occupational health review where I more or less told them what my phased return would be.I have also been given 12 weeks free access to our staff swimming pool and gym which is a bonus.Strange how different trusts treat their staff so differently. 

Thank you for the advice 're rest breaks.

Bibi - glad to hear you are doing ok.I am trying to  gradually increase my stamina.Went back to my ballroom dancing class weds eve - got quite exhausted and very hot just doing the Tango!!

I rarely do any manual handling at work now so I hope I will be ok when I go back. It's my brs8n for I am worried about.Just about managed the Tango routine after a few repeats- my short term memory has disappeared! 

Xxx

Member
Posts: 148
Registered: ‎22-01-2018

Re: February Chemo Starters 2018

Hi Chrissy - yes agree the mood swings are just part of the journey. I had some counselling a few months ago and found it helpful so I hope you do too. I have already been through menopause so it’s not that - not impressed to hear that Letrozole which I started today could make those symptoms happen again! Was bad enough the first time. 

Meeting with oncologist was good, have to have CT scan for planning the radiotherapy and it will start 2-3 weeks after that- so most likely looking at late September by the time that starts.I will be having 3 weeks and the a week of boosters , so still a way to go. 

Herceptin injections will start now - just waiting for appointment for first one. 

Lots of waiting about again - makes it hard to plan stuff but am trying to get a few things sorted. Looking forward to another family wedding this weekend - hope my energy levels lift by then - so tired again today . 

Hope everyone is making progress towards the end - hugs to all xxx

Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Hi Bibi
You sound like you are doing really well and I agree this thread has been really supportive. I did join the radio one but returned to this as felt we have all been through this journey together and understand each other . I’m sure the low mood days may be because of what we have been through it’s normal and good to let it out . I’m starting counselling soon . Since I’ve been off it’s allowed me to think and reflect on lots of things even my childhood and it’s amazing how we sweep things away . So girl you cry when you want to we have been through so much . A friend texted me yesterday and said great you’ve finished treatment and feel normal again . Well I don’t feel normal I feel that I never asked for this to happen and now realise it will be a long process .
I’m not sure Bibi if this treatment has put you through the menopause or you already are but that can also cause mood swings x

Keep doing your arm exercises you will get there soon hope your onc appointment went well x
Member
Posts: 148
Registered: ‎22-01-2018

Re: February Chemo Starters 2018

Morning everyone - agree it’s good to keep in touch even though chemo over - feel a connection on this thread - have read the surgery ones and radiotherapy but haven’t commented on any - this one feels like home 😊

Im recovering from surgery well - breast scar is healed, lymph node one taking longer but getting there - got a little persistent scab that won’t go away.

Pain and movement has started improving rapidly just in last few days , been doing exercises religiously and yesterday noticed I moved without thinking about it so am hopeful Inwill be OK by time radiotherapy starts. 

I am seeing oncologist this afternoon so hopefully will find out time scale for radiotherapy and herceptin injections. 

Feeling good mostly , get tired - but I am guilty of having days when I do too much just trying to be normal again and then crash and burn for the day. Have been away for the weekend , did loads of walking, came home and went out to friends for dinner, today am on sofa in PJ’s till hospital appointment later 😂. Still having some down days - just randomly - seems to be no pattern but had a very weepy day last week - but felt better the next day- guess it’s just part of the process. 

I hope your return to work goes well McNeech and on your dissertation- my brain is still losing words don’t think I could hope with something academic - hope you manage to enjoy completing it. 

Chrissy hope you get the reflux sorted - I haven’t had any since finishing the chemo 🤞 it won’t come back- I was taking omeprazole and it worked well but have stopped it now.

I am fortunate in that I don’t work so don’t have those worries of reviews/ sick pay 

/ phased return to worry about, but hope you all manage to sort - it’s at the point you need these things you realise the value of good support - sending you all hugs x

I have heard mention of the Moving Forward course but not been given any specific details yet but will look at it. 

Take care and keep getting well all 

Bibi xxx

Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Morning everyone thanks for your posts spoke to gp yesterday advised to stop esomperazole and he is referring me for a scope ( another thing) ! 

Macneech - I rang radio unit re radio to neck area and was told it wouldn’t cause the problem that I have but you do get a very sore throat so get dispersible paracetamol or ask and they will sort for you. I hope you get started soon . I didn’t find it as bad as chemo but I am tired and extremely sore on the side of chest and can’t lie that side . Just take it easy as your body has already been through a lot .

glad you got away and well done for being wig less ! I haven’t worn mine in ages too warm I just wear a straw hat or Baker boy cap. Mine has started growing and it’s scarey how quick .

i agree with you flushes are a pain and interrupt sleep I’m taking sage leaf but told can take a while to work (if they do) !!

you are brave going back to work before radio hope it goes ok . I’m still off sick hit no pay December so hope to go back in new year .

 

Got another sick review Thursday they insist every 6 weeks although this one has been 8 I don’t find them helpful but stressful got the union rep with me this time. I have to use all my annual leave for phased return even if it’s a half day . I’m not impressed with the lack of support from the trust and I’m still waiting for counselling .

 

Hope you will be ok with work macneech remember if you are tired you are entitled to tiredness breaks under the discrimination and equality act . Macmillan do a good booklet called your rights at work worth looking at . I can’t remember what you do again but I work for NHS and they certainly haven’t been very caring sadly . ( not the staff I work with they have been fantastic ).

 

Also acupuncture may help peripheral neuropathy as I accessed this but only had a few sessions as wasn’t allowed any more. Good luck with the dissertation I admire you.

 

bibi- hope you are getting on ok post op. 

 

Weeburd- how did you find the course ?

 

miss green- have you applied for Pip if you’ve problems with dressing you might be entitled to it .

 

All the best to everyone one look after yourself xx 

Member
Posts: 65
Registered: ‎21-01-2018

Re: February Chemo Starters 2018

Hi all - it's good to still read your posts and stay in touch.

Like you Chrissy - I am waiting on radiotherapy and am planned to have some to my neck area.( supra clavicular)?I was told the chest wall radiotherapy can damage the lung lining slightly so I wonder if the neck radiotherapy has damaged the lining of your throat/ oesophagus causing your reflux?? I hope it will settle down in time. 

I am still trying to get enough movement in my arm to get it above my head for radio - it's getting there😕

I thought I had got away with chemo nails but I have large white lifted tips on most of mine.They look weird so I keep them painted as they look odd.I should be grateful they haven't come off completely. Toes nails seem ok.

Have my eyebrows back and eyelashes despite being a bit unruly😃Hair is coming slowly - I was brave enough to go wigless when we were in Spain - average temp 34°. I was dripping under My wig and couldn't stand it!! One continuous hot flush 😓

Have started Tamoxifen last couple of days - waiting to see what that throws at me. Have noticed really stiff back / sore joints but not sure if because only just back on Glucosamine and COD liver oil capsules ( took them before my diagnosis).Hope these don't interact- anyone know??

Back to work week after next 😣- phased return on part time hrs.Hoping I don't be too washed out.Going to try and do mornings then go to radio appt after before going home.Been told if fatigue kicks in it is usually 2nd- 3rd week or after- ??Expecting to start radio mid Sept.

Will try and look at booking ' moving forward " course - didn't appreciate it was over a few sessions.Also have access to complimentary therapies at our local "Haven't- similar to is it Maggie's centre? Acupuncture is supposed to be good for hot flushes??

Still getting interrupted nights - supposed to be getting my head around my studying ( dissertation) - hmmm😬

Thinking of you all out there soldiering on!! xxx

Member
Posts: 141
Registered: ‎16-05-2014

Re: February Chemo Starters 2018

I had reflux before my diagnosis and take Omeprozol for it but it doesn't really work. The chemo did make worse. Like WeeBurd I have struggled with opening cans, undoing laces and even getting dressed. Originally thought it was just because of dodgy nails but now think it might ne Neuropathy ( think I have that right ie. Loss of proper sensation in finger tips) . It's not constant though so that's weird x
Member
Posts: 92
Registered: ‎12-02-2018

Re: February Chemo Starters 2018

No problem with reflux for me since I finished chemo. I was avoiding any food and drink that was remotely acidic.
Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Hi weeburd and miss green

thanks for your reply’s . Yes I have applied to the moving forward course although it’s a 56 mile journey I’m looking forward to it . Have any of you still got reflux . Mine is so bad that I’m eliminating food and it’s not making a difference. Haven’t drunk tea for nearly a week only water and camomile tea (yuk) . My Gp has put me on esomperazole 40mg twice day but after 2 weeks it’s not working. I rang the chemo unit who said to ring gp and I also rang radio unit as I had radio to neck area to see if it’s related but was told yes but then told no . Just wondered if others having problems .?

Member
Posts: 92
Registered: ‎12-02-2018

Re: February Chemo Starters 2018

Hi Chrissy,
I don't have pain in my nails but they are quite discoloured and the thumbnails look as if they might break off so I'm trying to keep them moisturised and avoiding catching on anything. They also feel really weird if I try to do anything that I need to use them for - like opening a ring pull can or trying to undo a knot! I'm on tamoxifen now and getting some flushing but it's manageable so far.
Last week I started on the Breast Cancer Care Moving Forward Course. It runs over 4 weeks. I found the first session really helpful and am looking forward to the next one on Thursday. If you can go on one of these courses I would highly recommend it. It was good to meet and talk to other women going through the same experiences in the same way that it's been great to have you the support on the forum.
Member
Posts: 141
Registered: ‎16-05-2014

Re: February Chemo Starters 2018

Hi Chrissy

The nails I have left still look funny but have stopped hurting. I keep cutting them as short as I can. Since stopping chemo and starting letrozole my flushes got worse. Especially during the heatwave we had !

T

x
Member
Posts: 92
Registered: ‎17-12-2017

Re: February Chemo Starters 2018

Happy birthday Bibi and fantastic news.
Good luck with radio compared to horrible chemo you’ll find it so much easier . I finished mine last week no other treatment available for me now as I’m triple negative so just the road to recovery . Still got the most aweful reflux though medication doesn’t seem to be working so back to Gp Monday . Still got peripheral neuropathy in hands and feet and nail pain and dreaded flushed and sweats . Have others still got issues ? Hope everyone is ok xxx
Member
Posts: 141
Registered: ‎16-05-2014

Re: February Chemo Starters 2018

Excellent news Bibi and happy Birthday x

Teresa
Member
Posts: 92
Registered: ‎12-02-2018

Re: February Chemo Starters 2018

Happy birthday Bibi! Good news !- hope you're recovering well from the surgery.
Member
Posts: 148
Registered: ‎22-01-2018

Re: February Chemo Starters 2018

Hi everyone - really happy to report that I had WLE and node clearance a fortnight ago and today I got results that there were clear margins so it is all out!  It’s my birthday today as well so it feels like the best birthday present ever 😁 Still have radiotherapy, herceptin injections and some other drugs for 7-10 years but today feels like a huge step in my journey. 

Hope you are all keeping well , and wishing you all good luck for the future and thank you all for the support over the last 6 months. Xxx