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May 2017 chemo starters

Community Champion

Re: May 2017 chemo starters

Well done Treehouse on your rehab sessions. Do you have to be careful with regard to lymphodema and weights?

How does the bike exercise feel - it's something I want to get back to but at the moment I'm not quite ready. I'm not a keen cyclist by any means but I do like the exercise it provides.

Generally, I believe there should be more funding in the exercise part of this treatment - my authority don't provide any exercise as a matter of course. I'm going to speak to my GP when I see him in a couple of weeks to ask if there's anywhere I can go without having to fund it myself.

Make sure that treehouse is tidy for your visitors to explore! You're going to have a blast! xx
Community Champion

Re: May 2017 chemo starters

Treehouse - I see you're on a low dose of beta blockers - do they have any side effects?
Community Champion

Re: May 2017 chemo starters

Err - had blood test yesterday - only needed one file thankfully - as once my arm had given about half a tube it decided to stop flowing!  Nurse took off and put back on and gained a little more - enough she said for what they needed!  Ergh never been keen on having blood tests and like them even less now - I think it's the worry that if they can't use my good arm - where are they going to try next....!

 

Anyway to comfort myself and replace the sugar I'd burnt off panicking - I ate a whole easter egg when I got home but then I did take dog out for a walk after!

 

Today's another lovely sunny one here - going to catch up on my laundry whilst it's like this - towels today - bedding tomorrow.... oh the joys!

 

Mind you it is lovely sitting here on the sofa, bathed in the sunshine, wearing my dressing gown and listening to the lovely robin singing in the garden - oh it's the small things in life now that mean so much x

Member

Re: May 2017 chemo starters

Mishy, would it be better if you took it before bed? I used to have amytriptyline, an antidepressant but prescribed in low dose to me for pain from severed nerves. I took it at bedtime, it definitely made me sleepy.
Member

Re: May 2017 chemo starters

Trisha its sertraline they give me 50mg i only took half but feel off my head maybe it just doesn't suit me im glad what you have is helping you out x
How was your massage bet it was lovely 😊
Member

Re: May 2017 chemo starters

I take 1 Mirtazapine. 30mg at bed time. Is for anxiety and depression. Seems to help me x
Member

Re: May 2017 chemo starters

I know treehouse that is what i was thinking i kind of wish i hadn't taken it now!!!
Its definitely something i don't want to get caught up in, my mood fluctuates if that makes sense I was offered propranolol when my dad eas poorly before he died but didn't take it because i was worried about taking stuff with chemo maybe i think i will ring my GP in morning before taking pill number 2 good luck with benefits its a mind field but should be helpful till you get back to work x
Member

Re: May 2017 chemo starters

Thanks Mishy I am so confused about all these benefits.
Sorry to hear you are struggling at the moment. The only time I have been offered any help was when I got told I had 4-6 weeks in hospital over Christmas and I had a meltdown. Sobbed for 24hours and blood pressure set the alarm off. They decided giving me my own room would help ( I refused pills)
I have nothing against them just didn’t think they would help my situation.
I am on very low dose beta blockers for my heart ( but also which help with symptoms of anxiety)
Member

Re: May 2017 chemo starters

Treehouse im not really sure what that us it could be for new style contributions based ESA which is what i currently get till i get back to work my SSP ran out in Dec i never got another other pay from work straight onto SSP so i claimed ESA to help tide me over till returning to work its not means tested either i will be takung a massive drop in pay as cutting my hours back to part time from full-time the nature if my job is very stressful so feel it would not be good to go back to my full time hours
Has anyone been prescribed anti depression pills, my GP prescribed a low dose to help me short term ( my anxiety levels have been pretty bad) i am having some sessions with physcotherapist which do help alot but GP agreed tge physical symptoms i was getting warrant a little help, i have had pills in drawer for over 2 weeks now decided to take one this morning as still feeling a bit 😨 and want to get back to work soon incase they run out of patience and finish me! im not sure i like the feeling since taking it feel a bit spaced out i will persevere for a few weeks but if this is it i think I will go it alone!!!
Member

Re: May 2017 chemo starters

I just received a pack from work. It says my sap ended in Nov and they have enclosed a SSP1 form for me to make a backdated claim for benefits. Does anyone know what that is?
Member

Re: May 2017 chemo starters

That’s frustrating about bone scan . Glad they have been able to give you something for the boob and have a plan to help with pains. I am imagining strange bra inserts now , bet that feels odd.
I really hope you get that massage you deserve it after this morning.

I hav now done rehab 7. Have gone from 0.5 kg weights to 2 kg and bike setting from 4 up to 10. Nurses are really pleased with my progress and so am I.
Only got another week so will have to join another group ( I will have to pay tho)

Now time for house work as I have some special visitors this Saturday πŸ˜€
Member

Re: May 2017 chemo starters

Well... all geared up for the bone infusion treatment alongside Herceptin. Couldnt do it because need bloods day before. So postponed for 3 weeks. Has Herceptin and saw Breast care nurse. Dec lymphodema in my breast has given me a foam type thing witj square bumps to insert in my bra. Looks like something y would make on Blue Peter. 're the aches and pains is going speak to my Oncologist who will probably suggest stopping Anastrazole for couple weeks see if any change and then put me on a different drug. Just waiting.for.massage.now x
Member

Re: May 2017 chemo starters

At Oncology waiting for Herceptin no 16 and first bone infusion drug. Meet with B Care nurse too.
Hoping she can explain the swelling and skin change on my breast. Then if all.goes to plan have a complimentary massage at 1030 x
Community Champion

Re: May 2017 chemo starters

Ergh I'm off for a blood test today - what was once a routine, every 3 weeks at least occurrence, suddenly becomes a major entry in my diary!  

 

At least the weather is still looking good and I'm catching up on laundry again!  

 

Return to work for me today - having had 11 days of doing just what I please - this is suddenly going to be difficult!

 

Have a great day all x

 

Member

Re: May 2017 chemo starters

Hi Jay no targeted therapies for me as TN so just looking after myself as best as possible physically and mentally im thinking of just going back part time xx
Community Champion

Re: May 2017 chemo starters

Mishy are you on any kind of targetted therapy following active treatment? Good luck with the endoscopy and I hope it proves conclusive and they find a remedy for you.

Yes it is indeed the comradeship that I missed when not at work and also the routine funnily enough - having been back since January though I am now appreciating and enjoying the non-routine days just a little bit more if I'm honest....!!!! x
Member

Re: May 2017 chemo starters

Oh yed and weather is lovely i will def take heed re work too i find im easily tired without work!!! I am missing the comradeship of it all though!!!!
Member

Re: May 2017 chemo starters

Hi Jay im not entirely sure what they are checking for i know its because the stomach tablets prescribed by onc didn't work i have persistent refux bloating and feeling of food getting stuck when eating along with bouts of heartburn so my onc wrote to GP to ask him to refer for endoscopy i don't think they are that concerned just need to find cause i suppose!!!
Community Champion

Re: May 2017 chemo starters

Hi Mishy - again, go slow and steady with your phased return to work. I'm fortunate in that I go to work 5 days a week - work for 2 hours (but literally don't stop in that 2 hours both physically and mentally) - and I still come home both physically and mentally exhausted! So take lots of care.

Is your endoscopy the 1st May? What are they checking for?

Hope the sun is shining where you are and you have a lovely day too xx
Community Champion

Re: May 2017 chemo starters

Hi Treehouse - I have to do the same!

 

I've got a definiate mark of where my herceptin went this time - I've never had it all before - very strange!  I'm getting pleased and relieved that I've only 3 more to go.  After this last one (for the first time ever - I may add), I've felt "different" - the area of my mx and lymph removal have felt so tight - I've got general acheyness all over together with fatigue not helped by disturbed sleep and hot/cold flushes (which again have only re-appeared since injection!).  It's all "manageable" with exercise and gentle walking - but still not pleasant (and again I'm not really moaning about it as I'm pleased we have it).

 

Happy Birthday for yesterday - that was kept very quiet(!) - I'll go onto facebook right now and make sure that rectifies itself...!!!!  Any excuse to celebrate and eat sounds perfect to me too!

 

Good luck for the slow and gradual phased return to work - don't go overdoing it - take it extremely steady and most importantly enjoy it!

 

Hope the smear goes OK - they are indeed yuk but over so quickly.  Another life saver.

 

I've got an inset day today - my Son's school have returned - which he wasn't happy about!

 

I'm off to lunch with a very dear friend today - we're both celebrating - her because she's the one who fell downstairs and badly injured her back and now repaired and me - because I'm nearing completion of treatment and purely because I can!!  Off to Pizza Express......

 

and yes Yippeee the sun is shining here too....... x

 

Member

Re: May 2017 chemo starters

Happy belated birthday for yesterday treehouse i will be returning to work on my phased return as soon as i have my endoscopy which is 1st didn't seem worth going back incase i needed to have any time off because of that, work is on my mind alot which to me means im missing it now!!! Like you say Treehouse im as good as I am ever going to be can't live in this bubble forever
Jay yes i know what you mean!!!! Morning everyone else hope you are well x
Member

Re: May 2017 chemo starters

Hi Jay. I keep having to log back in to post a message which is odd?!
My herceptin went ahead and again has left a large red patch on my thigh ( doesn’t hurt) I feel ok.
It was my birthday yesterday and I ate out most of the weekend ( any excuse to celebrate πŸŽ‰)
I emailed my big boss for a meeting about returning to work last night expecting him to reply today. He emailed straight back so we were communicating last night. I will go in on 27th to discuss phases return. I am mixed but I think as ready as I’m going to get.

After some nagging 😜I am off ( for a very late) smear test this morning. Yuk.

Kids are off for one more day we have homework and tidying etc hopefully there won’t be any casualties.

Sun 🌞 is shining.
Community Champion

Re: May 2017 chemo starters

Hey ladies - we're slipping further down the page!  x

Member

Re: May 2017 chemo starters

Daffodil I’ve sent you a private message xx
Member

Re: May 2017 chemo starters

Hi WolfEE. Please add me to the Facebook group

Thanks.

Do you need more info?

Community Champion

Re: May 2017 chemo starters

I too have herceptin this afternoon - in fact my Dad's just text me - he's got the lovely job of escorting me today! - my injection should be 3.30 I wonder how late they're running.....!

Well done on the advanced workout today Treehouse - you're going to be so fit! I've just been for a good 40 minute walk with the dog, tomorrow might not be so far after today's injection! 

 

I think Andi is due her herceptin today too?  If so, hope yours goes well too my lovely 

 

xxx

Community Champion

Re: May 2017 chemo starters

Trisha and Daffodil - if you send a personal message to WolfEE on here - I'm sure she'll give you details of how to join the Facebook Group.  

 

I highly recommend it - we can all see each other now and share photos etc on there - it feels a step closer to meeting you all!  It's also very private - so no worries about outsiders seeing our conversations!!

 

Hope you both come and join us soon! xx

Member

Re: May 2017 chemo starters

What's the FB page? x
Member

Re: May 2017 chemo starters

Hi daffodil 🌼
Glad you had a lovely holiday. I feel we deserve them more than most now 😜.
Sorry to hear about your sore patch and I hope they put your mind at rest soon.
Wolfee is in charge of FB for the group send her a message on here and she will sort I am sure.

I have herceptin this afternoon ( provided heart scan yesterday was ok) 🀞
Went to the advanced rehab group today ( all men in 50s who had heart attack)
It was definitely a workout I’m knackered.
Will be going twice a week from now on πŸ’ͺ🏻
X x x
Member

Re: May 2017 chemo starters

Who is the fb admin? I didn't join before but would be keen now.

 

Community Champion

Re: May 2017 chemo starters

Hi Mishy - yes I'm quite sure after all the research I've been doing and the meeting with my breast consultant confirming - the rads really do unsettle everything and effects can continue for some considerable time - however, if you are paricularly concerned it's best to speak to your bcn - they can always refer you to physio (who deal with lympodema) who will provide exercises and advice.

It's lovely to be able to go out and enjoy meals out - back in the chemo days you can almost never imagine doing all that ever again! As I quite often think, it's the small almost insignificant things in life now that bring me the most joy!

My hair is so curly and thick and although lots of grey the rest is very much darker than it's ever been!

All the other ladies are doing well - we tend to communicate on our fb page nowadays - although I guess everyone pops on here every now and again just to see what's going on!

Take care lovely and keep up informed of your swelling. x
Member

Re: May 2017 chemo starters

Mishy, let us know how your genetic counselling goes. And what the bc nurse says too. 

About the hair, I am finding my hair very difficult to deal with right now too. Bed head, curly, no real style! I even got the scissors to some of the back curls myself as I looked like a mallard. There isn't really enough for a hairdresser yet, but maybe soon. At least I have hair, so I shouldn't complain. 

Member

Re: May 2017 chemo starters

Oh got my app for genetic counselling on 8th May the have decided to do it now because of my dad being diagnosed with cancer and TN status just hope i haven't got it as i was hoping the bc journey was kinda over for me if you know what I mean x
Member

Re: May 2017 chemo starters

Daffodil Jay i have sone mild swelling in lower breast and armpit been getting breast and armpit pain too im thinking i should ring my bc nurse just to see what she thinks? I was told i had some fluid on breast a month back so wondered if it was lympodema starting as i also had axilla rads on top of breast as some of the nodes were left after surgery
Been out for a meal for sons 21st waa lovely hairstyling is a but of a challenge for me atm now waking up with bad bed hair my hair is now very tbick and going curly πŸ€”. Treehouse mai Heather wolfee Trisha hope you are all well xxx
Community Champion

Re: May 2017 chemo starters

Hi Daffodil - pleased to hear you've met with the surgeon and are looking ahead at reconstruction. Several ladies on our thread have had recon - it may be worth asking their views on the type you're thinking of having. You'll have to keep us informed of your appointment with the breast surgeon - it's quite common to get a small amount of lymphoedema in the chest area after a MX.

All is good with me - number 15/18 herceptin injection for me tomorrow - my goodness time flies!

I'm enjoying this holiday from work so much - it's really lovely - be even better if the weather was to be sunny and warm but hey no doubt we'll have a fab summer instead!!

Apart from the swelling, is everything else OK? I do still get a very stiff arm and discomfort in the ribs where rads were done - exercising daily helps no end - but it's still there!
Member

Re: May 2017 chemo starters

Thanks Jay. I saw the surgeon about reconstruction, which I now have time to think about, with my next appointment in 6 months time. I have to consider all the options available.

He agreed that someone should look at the swelling, bringing my breast surgeon appointment early, end of April, for assessment. He thinks it may be a bit of lymphoedema, so we will see.

I hope all is well with you and all the other lovely ladies. Have a great week. Hopefully the weather improves.

Community Champion

Re: May 2017 chemo starters

Hi Daffodil - glad to hear your week away in Spain was enjoyable.  Sorry to hear about the swelling which has appeared - has it just appeared or was it smaller and has got larger?  I have an area between armpit and mx, ie where lymphs were removed - it is slightly swollen and tight but always has been but it's not red. I had it when I saw the breast consultant on 29th March, he didn't comment on it at all although he did examine the whole area and did lots of prodding all around.  Is the area soft or hard and is it painful to touch?

 

If you're like me, we're just paranoid about anything slightly different - we're going to be now - before all this I used to get weird things crop up and never thought anything much about them - weird how we've changed!

 

Anyhow, I would certainly mention it when you have your appointment this week just to ease your worries and concerns.

Member

Re: May 2017 chemo starters

I have had a great week away in Spain. I also have a concern as I have a red swelling between my armpit and mastectomy area. Not sure if this is normal post radiotherapy. I was seen a few weeks back and oncologist was happy all was fine but the swelling wasn't obvious then. I am being seen this week to discuss reconstruction so may mention it. Anyone else have this?

The reason I am a bit paranoid about the redness is that was how my cancer first presented, a red swollen breast.

Community Champion

Re: May 2017 chemo starters

Whilst I was away my appointment for first anniversary mammo to mono-boob came through - it's 26th April!  Also my next follow up appointment with breast consultant - 18 March 2019 (hooray next year's date is appearing on the letters....!).

Community Champion

Re: May 2017 chemo starters

Trisha - you're at the same stage of Herceptin as I am - I've got one this Thursday - then just 3 more to go!  I don't have the brittle bone infusion but the friend I made during chemo does.  I get the hip pain, thigh muscle pain and also a pain in my left heel which gets worse after each injection!  Whenever I speak to the onc about side effects - she always blames the chemo (still......)!  I have the same problem with my arm movement and the feeling that it's bigger due to node removal - when the consultant checked me over week before last he said all was good and it was just the healing process which can last some time.  I also get a burning pain in my ribs when I lie on them for any length of time (mx side) - been told that's the rads effects and that can last for some considerable time too.....  still shouldn't grumble, I'm still here!

 

I don't think our energy levels will ever be the same as they were - I get days where I seem to have endless energy and can use it - other days where I have the energy but can't be bothered to use it and other days where I have absolutely no energy at all - unfortunately there is no set pattern so I can't point the finger at anything which causes it - I just think.... Oh well this must be the new ME!!  

 

Hope your visit to the BCN eases your worries and concerns and let us know what she says.

 

Keep smiling lovely - we're all doing great!   Lots of love xx

Member

Re: May 2017 chemo starters

How lovely you have been thinking of me x
Have 3 Herceptin to go and 2 infusions of stuff to help prevent brittle bones. Can't have the 1st one till seen Dentist. Then it's 2 infusions a year I think for 5 years. Am struggling with terrible hip pain and don't know if that's the Anastrazole or just all the Chemo radiotherapy etc. Seeing B care nurse next week. The area they removed lymph nodes is suddenly restricting my arm movement and my breast has became lumpy and swollen. (It was all good at check up, so bit worried) Also my arm feels bigger but I burnt my arm badly on a hot water bottle and it's very deep sore and painful.
Avoiding calling work.... energy levels still poor.
Love to all x
Community Champion

Re: May 2017 chemo starters

Treehouse, well done on finding a more comfy bra - there's nothing worse than an uncomfortable one at all.

Eeeks for tomorrow - hope the hair cut goes OK - do you have a style in mind or are you going to be influenced by your hairdresser? Looking forward to seeing the photos xx
Community Champion

Re: May 2017 chemo starters

Hi Trisha - how strange - I was only thinking about you today.  I hope you're doing ok.  How are the herceptin injections going with you and how are you doing generally? xx

Member

Re: May 2017 chemo starters

Hi Trish how have you been doing? How many herceptin have you got left? Hope you are ok
X x
Member

Re: May 2017 chemo starters

Hi ladies. Been offline a while. Still thinking of you all. Trisha x
Member

Re: May 2017 chemo starters

Hi Mai, Jay and Shi. The bra is not a special mastectomy one just a cheap non wired one from matalan Β£9. Not my favourite colour but doesn’t ride up and make my implants sore.
So glad everyone has been having breaks away.
Tomorrow is hair cut day!!!
Will post before and after photos on FB.
Community Champion

Re: May 2017 chemo starters

Hi Ladies, hope you all had a lovely Easter break.  Im feeling quite refreshed after a week off work.  Treehouse, sorry you have been down but glad you are back up again AND have found a good bra (I thought the fringe was the holy grail? now its a fringe and a bra - next thing it'll be fringe, bra and matching handbag!)Smiley LOL

 

Community Champion

Re: May 2017 chemo starters

That's good news Treehouse - I've got the one from the hospital which came with the prosthetic fitting - it's fairly comfortable but I still have days where I don't wear one at all and just enjoy the strange freedom of being lop-sided!!  Although I'm sure it makes me walk strangely!!! haha - at least I can laugh about it!! x

 

Where did you get this comfy one from? x

 

Shi Community Champion
Community Champion

Re: May 2017 chemo starters

Treehouse πŸ‘πŸ‘πŸ‘that’s brilliant news, hope you’ve got a couple at least, really pleased for you 😘😘mishy, got my ysl glitter mascara this week now my lashes are back πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»Hope you are having a fantastic holiday πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨shi xx
Member

Re: May 2017 chemo starters

I may have finally found the holy grail!!!

A comfortable bra πŸ‘™

πŸ˜‚πŸ€£πŸ˜‚πŸ€£πŸ˜‚