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February Chemo Starters 2018

Chrissy68
Member

Re: February Chemo Starters 2018

Hi miss green omg you have been mucked about I hope you get it done soon let me know if you get a date.

I had occ health doctor last week who was brilliant and so understanding she did a report to management and expressed I shouldn’t work full time when I go back for at least 4-6 moths which is totally appropriate as I felt my manager doesn’t get it . I actually said to her are you trying to kill me !!

yesterday I had my sick review which for the first time went well and my return date is beginning jan to use all my AL for phased return then the rest of AL TIL end of financial year so the maximum I’ll be working is a 2 or 3 day week then I’ll do flexi working 3 day week for 6 maths then reevaluate. I feel much happier with this.

 

have you still got many symptoms? My hair is ever so thick and on top curly I want to put a wash in hair dye but worried if too soon ? Going to a living beyond course day Monday at local hospital and I’ve been using rehab gym at hosp it’s really making me stronger and helping fatigue.

hope you are getting on ok .

hello to everyone else keep strong 💪 xx

 

MissGreen
Member

Re: February Chemo Starters 2018

Hi Chrissy

No the op has not been cancelled but my normal BC Consultant isn't doing it as he's now off this week due to a family emergency. Yesterday I haf a hospital apt for me to meet the new consultant. He seems nice and I am back to feeling okay. Bit of a melt down when I first heard. So fingers crossed for tomorrow xx
Chrissy68
Member

Re: February Chemo Starters 2018

Hello macneech
Lovely to hear from you . I would say it’s the nerves causing the pain I have the same thing and it hurts so much I can’t wear bras or lie on that side . Time will help . Great news you back at work I will return new year tbh you sound like your trust are supportive I’ve found I’ve had to battle all the way with mine. But saw a lovely occupational health doctor who documented recommendations so fingers crossed.
I agree with you the year has flown and I’ll be due my yearly mam soon too !!

Just wanted to say good luck miss green for your operation I hope it hasn’t been cancelled again .

Good luck to everyone else hope you starting to feel a little more normal although I do feel life has changed a lot for us all . I think moving forward is the next stage of this rollercoaster ride xxx thinking of you all .
Macneech
Member

Re: February Chemo Starters 2018

Hello Ladies, it's good to hear how we are all still soldiering on.

Jude - I hope all is ok with your tender spot.I think we all have a right to be paranoid!

I have healed up following my radiotherapy burns but am still tender under my armpit.Not sure if it is to do with the nerves tuning back in.My implant is very "squidgy" - hoping for a permanent implant next Spring.Didnt you have an implant Wee Burd? How are you getting on?

I am back to work 30hrs instead of full time for a while to use up some accrued annual leave ( something good about working for the NHS).

Don't think I have suffered fatigue from the rads however I have had some afternoons when my eyes are sooo tired.I have been surrounded by family with colds and touch wood so far I haven't caught anything.I have probably spoken too soon - my immunity must be at it's lowest in years😞.I have had my flu jab ( another bonus from the NHS) - so 🤞.

I can't believe how quickly this horrible year has gone - it will be time for my yearly repeat mammogram come Jan/Feb!! But like you Jude - I am more worried about recurrent problems on the right side than the left😔

I have been told the paranoia does settle the further along we go.

Big hugs to you all.xx

 

Wee Burd
Member

Re: February Chemo Starters 2018

Miss Green you were right to rant about the uncertainty. It's the last thing you need from your doctors. Hope the treatment is now back on track.
Chrissy I hope that the OH assessment goes well. I found my phased return worked well. I was surprised how tired I got at the start but was able to build up the hours over 6 weeks. So much depends on having a supportive and understanding employer. I was lucky with that and hope you are too.
Flora my hair is coming in curly too! I have never had curls before and don't quite know how to deal with them! Sadly it's also mostly grey. It's growing much more slowly than it used to. I'm hoping when I finish the herceptin treatment it will grow a bit more quickly.
My husband and I have just had a lovely holiday - a week in the Trossachs with clear cold weather and lots of fresh air. It has given me a boost as I was beginning to feel as if my energy levels were dropping again and now I feel quite refreshed and ready to be a bit more active.
Flora29
Member

Re: February Chemo Starters 2018

Hope today’s appointment with OH goes well today, Chrissy. Are you expecting to be put on a phased return? Does that worry you?

I’m currently waiting for an appointment back with my surgeon’s clinic, as I have a tender spot on my collarbone that is worrying me. Could just be a rads hangover, or maybe the dog did stand on me and bruise me (but I don’t remember it and it’s been sore for a few weeks), or maybe just paranoia, but as soon as I called the BC nurses, they said they’d put me in for clinic. So glad they take it seriously. I’ve told my husband but no-one else. Not sure when the appointment will be for yet.

Ovary removal looks like it will be in January.

How is everyone’s hair growth? Mine has done the typical and come back curly. My natural colour has caught everyone by surprise - we’d forgotten how dark it is naturally! I now have white wings at my temples though!!!

Chrissy68
Member

Re: February Chemo Starters 2018

Oh miss green that is terrible you rant to them they have messed you about xx fingers crossed for 8th . I haven’t got occ health til 1st Nov so know more then x good luck xx
MissGreen
Member

Re: February Chemo Starters 2018

Hi all

Hope you're all feeling okay?

Maccneech - I hope your skin is getting better.
Chrissy - hope Occupational Health were helpful and understanding.


My WLE operation has been moved to the 8th and my BC Consultant put me on the wrong list, someone elses, and he wants to do the surgery himself.

Lost my emotional cool at my Oncology appointment last week which resulted in the BC Nurse booking me in to see her to go over my concerns it really helped.

Just want to get off this cancer treadmill now.

Hugs to all

X
Chrissy68
Member

Re: February Chemo Starters 2018

Hello everyone hope you are all keeping well.

i just wanted to say to miss green good luck with your WLE I hope everything goes well and you have a speedy recovery.

Im finally feeling stronger and due to see occupational health soon to return to work as I go onto no pay soon .

i wish everyone the best of health and good luck with everything xxx

Bibi
Member

Re: February Chemo Starters 2018

Hi everyone- oh macneech sorry to hear your skin has reacted so badly - hope you recover soon.

I finish my rads tomorrow- had a slight delay as machine broke one day - you are right Chrissy it has been a long hard year - I’m feeling worn out and can’t wait to ditch these long daily drives to hospital. 

I haven’t had any big skin reaction to rads but am getting nervous now that it might still happen.

I still have the 3 weekly Herceptin injections for a while yet (12 more) so will be having associated heart scans and meetings with oncologist so won’t feel like I’m at the end till that is completed but obviously a lot less active treatment going on. In a way going through treatment has felt secure because you know they are doing something and monitoring you closely, finishing it and then not getting monitored will be a big step and I feel I will need to build my confidence up to feel ‘normal’ again. I’m wondering if other people will appreciate that and not just think my treatment is finished and everything is the same again. 

Take care all xxx

Chrissy68
Member

Re: February Chemo Starters 2018

Hi macneech

im sorry to hear what has happened to your skin despite all your hard work using creams etc that doesn’t seem fair. I think you are right about paranoia it is really hard and I too find it hard switching off . It makes you wonder if it is a cost cutting exercises to not offer scans. I hope work goes ok for you try not to do to much. Hello to everyone else hope you are all coping ok and that you are starting to feel a little better it’s been such a long year ! Xx

Macneech
Member

Re: February Chemo Starters 2018

Hi everyone - sorry to hear that some of us are still struggling.I have felt a bit sorry for myself too with my skin coming off following rads.Finished mine Mon week ago and all was going fine until last weekend.Red,blistered and sooo itchy all over my boob and into my armpit.My armpit has completely de - skinned,is weepy and really sore.l have been given non stick sponge dressings which are difficult to keep in place.

I creamed routinely and used Sanex in my bathwater so wasn't expecting such damaged skin - happy days!

I am on Tamoxifen - very stiff in the mornings and still getting hot flushes but not as bad.I have read a lot about ladies suffering different side effects with different brands so maybe a different brand of Letrozole Bibi is worth a try.

I am back to work - gradually increasing my hours trying to be distracted from the paranoia of reoccurence😚😣.I haven't been reassured by the doctors when they say they won't do routine scans unless I am symptomatic. It will be too late then! I didn't feel my lump the first time round.

Hey ho - I have been told it gets easier with time.

Thinking of everyone.xx

Bibi
Member

Re: February Chemo Starters 2018

Thanks for your replies everyone - I feel so much better today - think Im just going to keep a diary of what’s happening and see if it I can spot any patterns. Only 6 more rads to go now so hopefully can soon eliminate that from possibilities. The Herceptin injections are every 3 weeks and I have 12 more to go so hoping it’s not that , but also hoping it’s not the Letrozole as I’ll be taking that for years ! But if it is that Inwill try a different brand like you suggested Wee Burd. Sorry to hear you are not feeling so good Christie - hope you can sort it out. 

Nearly the weekend - looking forward to not having to go to hospital for 2 days . Have a good weekend everyone x

MissGreen
Member

Re: February Chemo Starters 2018

Hi Chrissy68

Sorry for the late response. I have been on a well deserved holiday.

Glad your hats been getting some use. Yes in 2014 and 2017 my recurrances were both in my reconstruction. Just unlucky I guess or maybe lucky as I found it.

I agree with you they should teach it in school.

I worked a few days in between each chemo cycle and since my last cycle in June I have been in work everyday with the exception of hospital appointments and annual leave. I started working around 4 to 5 hrs each day and then built it up to full time by having shortened lunches. I am meant to be at work for 8.30 but don't get there until 8.45 as it means I can get a later train. Getting there on time means getting a train 50 min earlier. I do like my sleep.

Xx



Wee Burd
Member

Re: February Chemo Starters 2018

Hi Bibi you're right to rant and where better than to people facing the same sort of worries! Sending hugs and hoping you get to the bottom of what's causing the nausea. I was okay on radiotherapy other than feeling tired and then had the burning about 10 days after the end which was really uncomfortable for about a week.

Have you checked what the filler/binders are in the letrozole tablets? If there's something like lactose in them that could affect your tummy. Maybe a different brand would be better for your insides? Fingers crossed that things improve soon.
jude51
Member

Re: February Chemo Starters 2018

Hi all

Bibi - i've had 8 herceptin injections so far but no tummy troubles. Looking at the side effects it sounds very much like the herceptin might be causing it but so difficult to know sometimes. I have a constant runny nose and  joint pain especially knees and fingers. Started on Ramapril as BP too high and that causes an irritating cough  which combined with the runny nose makes me sneeze - feels like a never ending cold ! 

Also on Tamoxifen so just the hot flushes and night sweats although i have noticed they arent so intense if i eat well and not too much sweet stuff. I only had 5 days of RT (reduced as in a trial ) but can sympathise with the boob redness - it became quite sore and tight after i finished. Pilates is helping to stretch it all out though.

Chrissy - sorry to hear you are feeling rough. Do you need to go back to work for financial reasons ? I couldnt decide how long to stay off but decided just to throw myself back into it and see what happens. They have been fab and just let me do whatever but actually i feel pretty good. The herceptin injections are 3 weekly and pretty thick so can be a bit stingy but they give them over a few minutes so not to bad.

Looking back on everything i feel the chemo was pretty easy - just feel like all these side effects albeit minor are just never ending. Have been looking into taking Turmeric/Curcumin - anyone had any experience of it or taking any other supplements ?

Chrissy68
Member

Re: February Chemo Starters 2018

Hi everyone bibi you are  allowed to rant I finished my rads 2nd aug but past few weeks been getting bad side and chest pain that it’s keeping me awake at night . Bibi everyone is different so don’t give yourself a hard time. After radio I had bad reflux and had to have a gastroscopy which was vile . I still feel so tired and have such aches in my legs since treatment . It’s 8 weeks since I finished treatment and don’t feel much better and worry that I need to get back to work . How often are the herceptin injections? Is it painful ?

Bibi
Member

Re: February Chemo Starters 2018

Thanks for your replies Flora and Wee Burd - I’ve had the 4 Herceptin with chemo and 2 injections so far - still 12 to do. The radiologists are adamant rads don’t cause nausea so I’m at a loss -nausea is listed for Letrozole and Herceptin so who knows🤷🏻‍♀️ I suspect it’s the Letrozole as I have it fairly regularly in the morning but it has been worse since the Herceptin jab last Friday. Just having a feeling sorry for myself day as I felt so bad - loads of people say how easy rads is compared to chemo and yet I’m feeling rubbish and tired. And my boob is starting to cook - very pink. Cant wait for it to finish - sorry for rambling moan - hope you are all OK .

Flora29
Member

Re: February Chemo Starters 2018

Hi Bibi

I have had about 12 herceptin injections now, and am on letrozole, but don't ever get nauseous.  I'm also on zoladex to make sure i am post-menopausal.  I suspect it is more likely to be the rads making you feel unwell. How far through are you?    I finished my rads at the start of June.  I didn't get any side effects apart from skin peel as though i'd been sunburned.  I was more tired from driving from home, to work, to hospital and home again, as I did all driving for all but 3 or 4 of the 20 sessions and live 40 miles from work and 50 from hospital.    

 

Best wishes to everyone.  I haven't posted much as I have felt pretty much fine and well throughout, and finished chemo before most of you, because I was having only 4 sessions.  The herceptin was more important for my treatment plan.   Just waiting for an appointment for ovary removal now.

xxx

Wee Burd
Member

Re: February Chemo Starters 2018

Hi Bibi I'm on herceptin injections. Had my first 3 along with the docetaxel and also had tummy issues however they cleared up when the chemo stopped. I've had another 5 since then and haven't had any noticeable side effects after the injections. I'm on tamoxifen just now and will be changed over to letrozole after 2 years. Mainly I get hot flushes and can't seem to shift any weight off but nothing else that seems to be from the treatment. Hope you get to the bottom of it.
Bibi
Member

Re: February Chemo Starters 2018

Thanks Chrissy - I’ve had 4 with my chemo and had horrible tummy troubles afterwards but wasn’t never sure whether it was the Herceptin or the Docetaxol . I am just curious if anyone having the injections is having any side effects like that with the injections. I am having rads as well as Herceptin and Letrozole and something is making me nauseous and since injection last Friday I have been feeling a bit yuk - been quite bad today - trying to pin down what it is.

Hope you are keeping well Chrissy x

Chrissy68
Member

Re: February Chemo Starters 2018

Hi bibi

as I am triple negative nothing else will work for me but I hope you are getting through it ok have you got many sessions booked x good luck x

Bibi
Member

Re: February Chemo Starters 2018

Hi everyone - anyone having Herceptin injections? 

Chrissy68
Member

Re: February Chemo Starters 2018

Hi miss green

well that hats been out again today. It’s such a lovely day but I think I’ve over done it today and have walked to far. You have been through so much. Where did your cancer come back in 2014. My reason for asking is that you had DIEP reconstruction so this is tissue from your stomach. So this year has the cancer come back in the chest area again?

you are right about self examination and I think they should teach it in school . I found my lump by chance so I was lucky. I expect you aren’t going back to work are you?

anyway I’ve got to get my 12 yr old from school she’s hurt her ankle ! Hope you feeling a little better xxx

 

MissGreen
Member

Re: February Chemo Starters 2018

Hi Chrissy

I am chuffed to hear you went and bought yourself a straw hat. I have worn mine so much this year it's getting a little battered.

Yes my recurrances are on the same side as my original diagnosis. Back in 2003 I had a mastectomy and immediate reconstruction (fat taken from my stomach which I think is a DIEP). I lost my nipple too but have a beautiful flower tattoo in it's place. Because of tumour locations and my lymphnodes were involved they gave me chemo and radio. I had a WLE in 2014 on the same boob but just put back on Tamoxifen and then at the end of Dec 17 I found out in was back. This time it also spread so it's now called Metastatic BC. The chemo seemed to work on the areas it spread to.

I think anyone who's had a serious illness get really anxious. It's normal. Checking your boob is a good thing so never beat yourself up for doing that xx
Chrissy68
Member

Re: February Chemo Starters 2018

Hi miss green thankyou for your reply I scanned back in the blog and always remember the pic you put on with your straw hat and hubby having a little drinky. In fact in liked it that much I went and bought a straw hat too !,

i cant believe you’ve been going through this since 2003 ! It’s a good job you found them . I found mine by chance it was small 1cm but it didn’t make a difference as it had spread to my lymph glands and I do worry as they didn’t do a clearance and recommended just radio for it . When I wake at night my anxiety creeps in and I am examining myself . I can’t remember what surgery you have had already ? I had full mastectomy and nipple removed and SNB and implant . It sounds like you found the cancer again on the same side as you mention scar tissue. Has the cancer spread else where ?

I hope you are ok I bet you can’t wait for the end of Oct . I shall be thinking of you ❤️

MissGreen
Member

Re: February Chemo Starters 2018

Hi Chrissy

Yes that is secondaries. Well they think they were which is why I had chemo. I found my both recurrances by self checking my boob. Each time I thought I felt small lumps. Must admit I am not gentle like the professionals when I check. The BC Consultant even struggled to feel them but luckily they didn't just dismiss me and did an ultrasound. We honestly thought the areas I felt were scar tissue or fatty lumps but there again on my initial diagnosis back in 2003 the consultant thought it was fatty lumps. Seems to be a theme. Yes the WLE is a Wide Excision. I don't ever want to scare anyone with my experiences but cannot say enough to ladies "check check and check again" xx
Bibi
Member

Re: February Chemo Starters 2018

Morning ladies - good to hear from you all

Wee burd your skin reaction to rads sounded painful - hope you are fully recovered from it now. 

My hair is thickening up- didn’t lose it is as I used cold cap but it definitely went thinner. It’s greyer and courser than it used to be - although I used to colour it so it could have been like this for ages lol. I’m hoping it will grow quickly but have read Herceptin can slow growth down - my daughter is getting married next May so I’m hoping for a longer style by then. Can’t decide whether to colour again or just accept the grey - going to wait till at least after rads and see how I feel.

Chrissy - luckily don’t have the lead legs but finding it hard to move them at any kind of pace when out walking - stamina is not up to much. I have a Fitbit and have had steps set at 5000 just to get me moving but have decided to up target in a bid to restore fitness. Some days I do a lot more than 5000 but if I’m too active for a few days - like last week went away and did loads of walking and cycling, I then need a few days rest and feel really tired.  It will keep plodding on - have just downloaded an audio book - Sapiens- and am aiming to walk and listen each morning to reach my target.

Miss Green can totally understand why you would want yearly scans - living with secondaries must be very hard. Think I am down for yearly mammograms for 5 years and 🤞will have no reoccurrence.

OK - off on my walk now - have a good day everyone x

Chrissy68
Member

Re: February Chemo Starters 2018

Hi weeburd

lovely to hear from you your hair looks quite thick in your picture. I describe mine as looking like action man and it seems to be growing fast and is straight how I was before but grey 😭.

 

miss green omg I can’t believe what you have been through once is enough for anyone. Excuse me for my ignorance so is this secondaries that you have? How did you know it came back what symptoms did you have? Will you have more chemo after WLE (is this wide lobe excision?) I hope you are coping ok it’s really hard when treatment finishes as the emotional part seems to then kick in. 

 

I wanted to ask everyone have any of you still have lead legs I call it . When I sit down it is difficult to stand for a few moments and they ache . I used to be really fit when I do anything now they ache I feel like an old granny !! Sorry to any old granny’s out there ! It’s the top of my legs !

 

 

 

 

Chrissy68
Member

Re: February Chemo Starters 2018

Hi weeburd

lovely to hear from you your hair looks quite thick in your picture. I describe mine as looking like action man and it seems to be growing fast and is straight how I was before but grey 😭.

 

miss green omg I can’t believe what you have been through once is enough for anyone. Excuse me for my ignorance so is this secondaries that you have? How did you know it came back what symptoms did you have? Will you have more chemo after WLE (is this wide lobe excision?) I hope you are coping ok it’s really hard when treatment finishes as the emotional part seems to then kick in. 

 

I wanted to ask everyone have any of you still have lead legs I call it . When I sit down it is difficult to stand for a few moments and they ache . I used to be really fit when I do anything now they ache I feel like an old granny !! Sorry to any old granny’s out there ! It’s the top of my legs !

 

 

MissGreen
Member

Re: February Chemo Starters 2018

Wee Burd - it's 12 weeks since I had my last chemo and my hair coverage has become more dense over the last 2 weeks. It now looks like I have chosen the skin head look rather than looking like a cancer patient.

Chrissy - I can imagine being triple negative and hearing about Rachel Bland must have knocked you for 6. I followed her on twitter and I can honestly say I was emotional over her death. My 2nd recurrance was 3.5 years after my 1st recurrance. It all stems from my original cancer that reared it's ugly head in 2003. This time around they also think it spread to my chest lymphnodes and right lung. Chemo seems to have sorted that out for now but wasn't completely successful on the boob area. I will be having another WLE on my recon at the end of Oct.

Xx

Wee Burd
Member

Re: February Chemo Starters 2018

Hi All!
Macneech I had radiotherapy in July. The first few treatments took longer while they took extra images but after that it was just once a week that they took an extra picture. Once things got going the treatment didn't take so long. I had good mobility in my arm after surgery which helped but I also found that stretching exercises helped.
I found it much less tiring than chemo but was still quite tired and had a nap every afternoon.
During the treatment I didn't really have anything more than reddening around the breast but it looked much more burnt over the 2 weeks following treatment especially in the crease under my breast. The skin actually went almost black (I am ordinarily very fair skinned and don't tan easily). I couldn't wear a bra or even the soft crop tops that I had and the skin was very broken. Moisturising didn't help very much but the women on my Moving Forward Course had been given something called hydrogel (I think that's what it's called) and one of them gave me what she had left over and it gave instant relief. It's designed for burns victims. It's worth asking for.
Miss Green as far as I know I will be called in annually now for a mammogram but not a CT scan.
Chrissy my nails are still breaking although they aren't as sore as they were last month. My toenails are now starting to look as if they are going to start breaking.
How is everyone's hair? Mine is thickening up although it's growing much more slowly than it used to and it's now going weirdly curly which it has never been before!
Chrissy68
Member

Re: February Chemo Starters 2018

Hi macneech, miss green and bibi

Macneech - I finished radio last month . Found it a bit uncomfortable and tiring but not as bad as chemo .i had radio to neck chest and axilla, by week 2 I had a terrible razor blade throat and used dissolvable paracetamol. The worse thing I had was reflux issues I had this during chemo. I rang the radio unit was told by one person it was connected as had radio to the neck area but then told by another it is not connected . Last week I had a gastroscopy which thankfully wasn’t sinister and if I watch what I eat ie not rich or greasy food it helps . The other prob I had and still have is pain on my side that I couldn’t wear a bra for 4 weeks and it still hurts. It Has affected my sleeping and goes along my ribs to chest bone and then across chest . Make sure you cream all your body religiously during radio and cover up although it will be easier now the sun doesn’t come out so much. I Went to moving forward course yesterday was great saw lymphodema nurse who said to moisturise affected arm every day and do exercises for life .

Also macneech I totally agree with you re CT I asked the same question and was told only if I have symptoms to which my reply was ‘it could be too late then’ as I am triple negative I feel even more paranoid as there is a higher risk of return in the next 3 years and Seeing what happened to the beautiful  Rachel bland radio presenter recently I have turned into an anxious paranoid blob . 

Has anyone still got nail issues and peripheral neuropathy ( still bad in hands and feet). Pins and needles wakes me at night.

miss green- why they can’t do an u/ sound is crazy as it wouldn’t even be a radiation risk to you. I believe it is cost issues. Was your 2nd occurrence far apart and was it a new cancer?

bibi- I wish you luck and that time goes quick for your radio. X

lovely to hear from you all good luck in your journeys x 

Bibi
Member

Re: February Chemo Starters 2018

Morning - sorry to hear the radiotherapy is uncomfortable for you Macneech - I am starting Monday and have the usual apprehension waiting to start a new treatment- hope you can get through it without too much discomfort. I need to read through stuff again - I had forgotten people say to take paracetamol beforehand- thanks for the reminder. 

It would seem sensible to have yearly scans - I guess it all comes down to cost and also balancing effect of scans on body v finding something. 

Have a good weekend x

MissGreen
Member

Re: February Chemo Starters 2018

Hi Macneech

Sorry to hear you're finding Radiotherapy a pain. I have had it but it was back in 2003 and cannot remember what it was like. I couldn't have found it too bad as I went straight into work after each session but there again maybe time as dulled the memory lol.

I agree with you on wanting regular scans. I wish they did ultra sounds on reconstructed boobs. I asked my BC consultant if I will have an annual one now due to having 2 recurrances and neither of them showing on a CT. He said no it will be still down to manual checks. Xx
Macneech
Member

Re: February Chemo Starters 2018

Anyone of you lovely ladies going through radiotherapy now?. I have had 4 sessions so far and it hasn't been as comfortable as I"d hoped. Having to keep my arms up above my head for what seemed for ages on the first couple sessions was really sore. Taken Brufen and paracetamol before now which has made it a bit easier.Treatment today was done much quicker as they were ' happy with the imagery" thank God! Not sure if it is just me being s big pathetic or whether the Tamoxifen I have not long started is playing with my joints! It takes me half an hour to get my body moving in the morning and I considered myself quite fit!!

Last leg of treatment for me so now the paranoia about recurrence and secondaries is kicking in😔.I asked my consultant why we don t get offered a yearly CT/ bone scan.He says they would only re- scan if I became symptomatic - surely it might be too late then. 

Any thoughts ?? Hope everyone is doing ok and have waved chemo goodbye! 😙

Anna_BCC
Member

Re: February Chemo Starters 2018

Hi MissGreen

 

There is an information page on the Breast Cancer Care website about all our Moving Forward courses.  There is also a Moving Forward resource pack which you may find interesting or helpful.

 

Many people find our new app, BECCA very helpful for them to turn to after they have finished active treatment.

 

Best wishes
Anna
Digital Community Officer

 

 

MissGreen
Member

Re: February Chemo Starters 2018

Thanks Wee Burd I shall investigate xx
Wee Burd
Member

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.
MissGreen
Member

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
Wee Burd
Member

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!

 

jude51
Member

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

Macneech
Member

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

Bibi
Member

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

Chrissy68
Member

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
Bibi
Member

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

Chrissy68
Member

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 

Macneech
Member

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

MissGreen
Member

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
Wee Burd
Member

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.