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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

Hi guys xx so so down this week. Because my bestie is locked up work are looking at him/me and when I go back to work it’s highly likely I’ll have to sign something to say I won’t be in contact again. I told him that things are being assessed and he said I’d never choose him (how can I? I’ve got months of cancer treatment ahead I need my job) so he’s told me not to write anymore and he won’t be in contact. So upset. I hope he calms down but it’s almost inevitable. I know I just need to deal with it but on top of everything else it’s unbearable. I have ok movement in my arm for a week after surgery but the whole thing is half numb half sore and I have a huge cord in my armpit 😞 I’m sure the stretches will help and it might have been like this last time as I took ages to remove the dressings but I’m so fed up. Oh, and I got stung by a wasp when I did venture out earlier. I’ve spent the last two days pretty much in bed crying. I’m so apprehensive about going back to work because of D, because I’m meant to start my new role with barely any prep, because of the travel. Oh, and it’s my birthday next week and I hate anything that puts me at the centre of attention especially when I’m feeling so awful. Next Wednesday is 7 months since I was diagnosed and I’m not even halfway through treatment. Sorry for the rant but everything is a total mess right now 😢 

Member

Re: February starters 2019 - yes, we rule!

Hi Nettinoo,

there is a lovely park bang in the middle of TW. The pantiles are lovely, Fenwicks at the top of the hill. 

Glad you are enjoying your break 👍

Member

Re: February starters 2019 - yes, we rule!

SusieB if it had been my choice, I’d have gone for the bull and completely hidden myself behind it but you are obviously a very brave lady. I applaud you honey. I can’t wait to hear the next Calendar Girls update.

sarah, I’ve copied and saved all you Bristol info for when I visit my youngest there. So many great suggestions. Daisydi, I am so happy that the rads aren’t causing you too much grief after all the skin problems. 

Spent the morning walking around Tunbridge Wells and had lunch in the sun sat outside a lovely restaurant in The Pantiles (if any of you are familiar with TW). The dogs were fairly well behaved and spent all afternoon crashed out snoozing. I joined them! 😂 xx

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Re: February starters 2019 - yes, we rule!

Susie I had a very sore tongue most of the time and during T it was really white.  I got relief from sucking ice lollies.  Not sure about corsodyl mouthwash as it has alcohol in it I think and it would really irritate.  Also the pharamacist told me anything with lemon was good so I had a lot of sherbet lemons and fresh lemons in water.  Apparently frozen pineapple is also soothing but I didnt try it.  Bought a tin but it never reached the freezer. Also frozen grapes.  

Hope you feel better very soon and that everyone else is ok.  Re: the lymphodema risk I dont think it ever goes away so have to be really careful with lifting, gardening, saunas, hot tubs, jacuzzis, insect bites and radiotherapy can bring it on too.  I always sit with my arm raised on cushions and sleep with it raised too, when I can sleep!  Not sure about the underwired bras as I couldnt imagine putting one on for a very long time.  Also my underarm is still numb a bit and that op was in January.  Takes ages for the nerves to repair.  You are very brave on the calendar girls front.  Well done x

Member

Re: February starters 2019 - yes, we rule!

Thanks for replying Sarah

There’s some pretty awesome suggestions there, really appreciate you taking the time 😊 

We go on the 25th so can’t wait now. Just hope I’m less tired from rads by then (finished yesterday).

Cheers, Di 😘

Member

Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Sun is finally shining here in Somerset🌞 and I'm more awake than I was on Tuesday😊.  Hopefully I'll be able to drive myself to hospital tomorrow for PICC care otherwise hubby will have to take me in then return to Yeovil for another dental appt - root canal treatment😝☹.

As far as TC side effects go I've now got a rather sore tongue and foods tastes bland to say the least. Fortunately no sign of oral thrush. Did any of you have this problem and if so was there anything that helped? It was quite painful overnight and kept me awake during the early hours. I'm currently using corsodyl mouthwash and sesame oil as recommended by Rosina. 

Right, Calendar Girl update, eeeeeeeeek😲. So it's definitely happening and photo sessions are starting next week. They're being held at various locations each with different themes so it should be fun. We each choose which shots we're interested in participating in. I've declined the one with a bull🐂😆. And yes, it's a real one. I'll let you know how it goes next week. 

 

Implausible, I'd forgotten how much there is to do in and around Brizzle. Believe or not I've never been since we moved here. Hubby goes sometimes to do with work and he did travel up to Abbey Wood to work for 4 years, so perhaps that's why we've never really been as tourists when Chris got older. We did more of the fun stuff in Dorset and Devon. Balloon Festival would be good to go too, weather permitting.

 

Daisydi you're definitely on the rads home straight now. Well done😊.  Fingers tightly crossed that your skin continues to remain in fairly good condition🤞🤞🤞🤞.  

 

Trixielady, all this stuff about what we can and can't do after ANC doesn't always seem that clear. I didn't think I could carry anything heavy at all on my operated side. As for bras I read something the other day that seemed to indicate I could never wear a wired bra. I think I'll check with the medics to get clarification. As for numbness I had hubby poking at me the other day so that he could get an idea of what I was having to deal with. He couldn't believe I could barely feel him touching me in some places.  

 

Hope everyone is ok. I've truly lost the plot now on what many of you are doing. Edinbird and Deano I fine with as you've both just had surgery the same as me. Hopefully me and my chemo brain😩🤤 will catch up sometime😃😃🤣. xxx

 

  

Member

Re: February starters 2019 - yes, we rule!

Hi everybody, hope you are all well

 

I'm still trying to find time to do one of my usual giant posts, but in the meantime, let me cover off my Bristol tourist board duties for DiKat, before I leave it so long that her trip has been and gone!

 

Bath-wise I think the others have covered it well - I definitely second Rosina's recommendation of the Fashion Museum. I really didn't expect to find it that interesting, as my idea of high fashion is jeans and a t-shirt, maybe a hoody if it is chilly out, but it really is a great museum.

 

And yes, the actual baths are a tourist trap, but worth a visit. Just don't go swimming in there Smiley Happy

https://www.mirror.co.uk/news/uk-news/hippy-went-three-hour-dip-18798122

 

Just outside Bath you have Dyrham Park which is worth a visit if you like a good stately home and deer park.... https://www.nationaltrust.org.uk/dyrham-park

 

OK - enough of the fancy stuff - back to Bristol Smiley Happy

 

I know I'm biased, but I'd definitely recommend going on the Where The Wall street art tour - I think it got voted best thing to do in Brizzle last year, and your teens would love it. Try to book one of the tours hosted by John Nation, he is a fascinating dude - he was Banksy's youth worker back in the day, so he has a LOT of interesting anecdotes to tell.

http://www.wherethewall.com/tours/

 

My second favourite thing to do in Bristol is a visit to the observatory in Clifton. It' an amazing place with the most wonderful views:

clifton_obs.jpg

 

There is a Camera Obscura inside which makes even the most cynical teenager utter a little "wow", and a really cool passageway through the caves which emerges at this little balcony carved into the side of the Clifton Gorge. It is quite the experience!! Honestly, it's hard to explain how cool the whole place is, just trust me.

 

Also - just near there is the rock slide - if your teens want to go down it, make sure they aren't wearing their favourite/most expensive clothes, as I've seen a lot of ripped trousers Smiley Happy It is so much fun though - you don't half go down fast!!!

clifton_slide.jpg

 

And of course you can take a walk over the suspension bridge.

 

More traditional things to do, but well worth your time - the SS Great Britain, Bristol Zoo, We The Curious (an interactive museum with a really good planetarium). There are also lots of other great museums and art galleries.

 

For independent shops and quirky stuff - including great street food - go to St Nicholas Market (open Mon-Sat)

 

As for places to eat/drink - the best people-watching spots are down at the harbourside....set your google maps for Za Za's Bazaar (giant, good quality buffet restaurant, highly recommended if your kids have good appetites) which will take you to the heart of it - most of the restaurants and bars down there have places where you can sit outside. And while you are there you can have a go on the ferris wheel or take a family photo in the reflection of the big silver disco ball (which houses the aforementioned planetarium) :

Millenium-Square-Bristol.jpg

 

If you want a more traditional pub with a warm welcome, great food, and some awesome street art and graffiti all around the courtyard, I'd recommend the Rope Walk pub in Bedminster. If you are there on a Tuesday night, you could do the Blood and Butchery tour, which sets off from the Rope Walk, it's a lot of fun:

https://visitbristol.co.uk/whats-on/blood-and-butchery-in-bedminster-p2390003

 

There are also a few good theatres - the Hippodrome has the big blockbuster musicals etc - the Bristol Old Vic is a little more "cultured", and the Tobacco Factory Theatre is a bit more hipster Smiley Happy In fact the whole area around the tobacco factory, up and down North Street in Bedminster, is another cool place to hang out. Lots of really trendy eateries and bars. And interesting shops and pop up galleries. And yet more GREAT street art.

 

Hopefully that's enough to give you a taster. I'm sure that you will have a great time in the South West.

Sarah

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Hi Marlyn 

It showed up on Facebook and I thought why not saying I'd been diagnosed last year but they only advised no paracetamol and to watch my diet, apparently they carry out a fibroscan and  bloods, clinical trials held by Synexus 1565823145718955877792787317704.jpg

 

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Re: February starters 2019 - yes, we rule!

Well 15 down and just 5 boosters to go.  Whoop whoop!  Skin not too bad just a bit of a prickly heat rash and a sore bit but not broken down yet.  Fingers crossed x

Member

Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Just found a video on YouTube filmed by CancerResearch UK demonstrating excercises for lymphodeama. Think it's only beem released recently. Sorry I don't know how to put a link in but it's easy to find. xx.  

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Re: February starters 2019 - yes, we rule!

Susi,

mine was picked up on a scan years ago, I was totally gobsmacked, I'm completely teetotal....I was told I store more fat in my liver than normal, and must try and keep to a sensible weight....chemo had other ideas! Xx

Member

Re: February starters 2019 - yes, we rule!

Trixielady, I will be starting Anastrazole and possible a bone med but possibly need an updated bone scan and dental check first. So that will be sorted at a later date. 

SuzieB I’m so happy to hear you only have 2 more to go but I know that will seem2 too many. 

Deano, I feel for you, so much going on to affect you emotionally. Sending hugs. Xx

Member

Re: February starters 2019 - yes, we rule!

Susie B and Rosina

Thank you so much, some fab suggestions there xx

Member

Re: February starters 2019 - yes, we rule!

Hi Dikat ,

if you like nature and walking I highly recommend this place 

prior-park-landscape-garden

It is National Trust.

It is sign posted from Bath Town Center as you can walk it  as I have done  about 35 - 40 minutes ( all up hill to get there and all down hill to get back) or catch the local bus.

Also the canal walks are pretty and tranquil ( and a good escape from busy town streets) actually a hidden gem IMO.

The Assembly rooms and the Fashion Museum ( the same ticket got you into both places- or at least it did 4 years ago).  Daughter and I visited the fashion museum and it was definitely worth the effort. 

The Roman Baths were interesting but  heaving with Tourists when I was there.

 I also recommend this place to stay 

http://www.paradise-house.co.uk/

I got a good deal via Booking.com and I would go back in a flash.

Gorgeous garden, excellent breakfast and fab location.

This place is famous 

.thermaebathspa.com

but I didn’t visit as we had gorgeous sunny weather and I preferred being outside.

Have a great time,

Rosina

Member

Re: February starters 2019 - yes, we rule!

Hi DiKat

 

Just jumping in on what to do in Bath and Bristol. If your hubby likes aircraft Filton Air Museum may be worth a go. For you and your daughter definitely Bath for the shops. Don't forget the Royal Crescent. 

Susie B xx

Member

Re: February starters 2019 - yes, we rule!

I'm intrigued🤔. What's a non-achohol fatty liver?

Member

Re: February starters 2019 - yes, we rule!

Trixelady,

glad you got your scans sorted....tell me more about the liver trial? I have non alcohol fatty liver...have you??? Xxx

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Re: February starters 2019 - yes, we rule!

Hi Deano

 

Good to hear from you☺. I was getting a little concerned. You seem to be going through it at the moment with your son going away plus the seemingly never ending treatment. I'm not surprised you were reduced to tears when talking through the rads side effects. I'm sure your son will cope well with his career in the army. An aircraft technician is an excellent choice as that is a  skill that will transfer well to a civilian career if and when he leaves the army. Not that I'm biased in any way but my hubby joined the RAF as an electical/mechanical aircraft technician and has never been unemployed. As for the rads I'll be having the same as you, I think, but don't know how many sessions I'll need. My onco is a man of few words but I'm seeing a different one next time, I've seen her before, so I will probably fire all my questions at her. The hot tub sounds lovely and at least you can set the temperature to suit your needs with regard to the lymphodeama risk. Susie B xxxx. 

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Re: February starters 2019 - yes, we rule!

Thanks SusieB, I'll certainly have a look. 

Edinbird what's this about hot tubs and so on? My mam also keeps telling me off for lifting heavy things and over using but I thought it was only whlist healing saying that my arm is still numb underneath its been 8 months!

Nettienoo what medication are you going to start on?

Hopefully everyone is doing the best they can. 

Well got a bone scan later today and a heart scan on Monday also taking part in a non alcohol fatty liver trial on Friday xx

Member

Re: February starters 2019 - yes, we rule!

Hi Implausible 

We like architecture, sculptures, art, nice food/bars to watch the world go by! 

Hubby likes aeroplanes & sci-Fi. I like independent shops, daughter likes vintage. 

Also like nature, pretty gardens, water etc. Most things between us really. Thank you 😊 really appreciate it x

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Re: February starters 2019 - yes, we rule!

Hi Rosina 

 

Horse tranquiliser, you're not kidding. I felt as though I'd had a bucket load of the stuff yestrday😪😪😴😴😩😩. Poor hubby had to do everything when he got home from work. 2 more sessions to go.xx 

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Re: February starters 2019 - yes, we rule!

Hi Trixielady 

 

Sunflower Lanyards, not Daffodil as I described them a few days ago. Chemo brain🤤🤤😩. I was told about them a while back at a 'Do' by the wife of one of my husband's work colleagues who also has cancer. I think there has been quite a roll-out these past few months. If you Google 'hidden disability lanyard' then airports and other places come up. Hopefully the airport you're flying from will be displayed. It seems that the lanyard can be picked up at any assistance desk within the airport. Heathrow will post one to you, which is what I did. If you are wearing a lanyard then staff are discreetly made aware that you may need help. They may direct you to a shorter queue at security,  perhaps make sure are are seated in the waiting area at the gate, or be made aware that yiu may need a little more time, that sort of thing. I'm planning to use mine on my next flight so that if I start to flay my arms around cabin staff may realise that I'm not trying to attract anyone's attention I'm doing my arm stretches💪🙌☺. Also if we can't check-in on line and chose our seats I want to ask for a window seat on the left hand side so if I need to stretch I'm not going to hit anyone in the process. Hope you find this helpful. xx    

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Re: February starters 2019 - yes, we rule!

Evening Ladies,

SusieB thinking of you with the nasty side-effects of Horse Tranquiliser T. 

I don’t ever want to have to experience that again. The good thing is it does go, even though at the time it feels permanent!

Nettinoo enjoy your break . I started the Tamoxifen tablet almost 4 and a 1/2 weeks after last chemotherapy because,  I didn’t realise it should have been 3 weeks ( in my head I was sure that I had been told to start once radiotherapy had finished, I am sure that’s what the oncologist said ) but the radiotherapist said it wasn’t a problem when I had my review . So hey ho.

I have had a 2 hour mid day nap today! Walked to town, had my hair cropped (smartened up) the whole family said it looked better : H1 “it’s better than the crow’s nest you had before”, K2 “Mum did you ask for a skin fade with a wave? “K1 “it looks good “.

Anyway, when I got back home I was pooped. 

All of us went for a walk this afternoon ( lovely weather).

Today’s steps: D48991A1-3187-4E4B-85F7-8C8AC41EA52D.png

Back to bed now after a shower.

Edinbird keep doing the shoulder shrugs and arm exercises,

Hugs to all,

Rosina

MBJ
Member

Re: February starters 2019 - yes, we rule!

Hi Edinbird and Implausible

I asked my physio in Lymphoma clinic last week about going in a jacuzzi she told me yes it was fine. Mind you my cardiologist my have other ideas. Week two of the cardiac monitor, fitted with a different one today and it has three leads this time and needs to be attached to a belt. Not great if I want to wear a dress.

I have a jacuzzi bath here at home and I have used it since my surgery. But not a great deal as I prefer to shower really. 

Going to try to catch my sister in now she was engaged   a minute ago we need to look at shore excursions for the cruise 😃.

Member

Re: February starters 2019 - yes, we rule!

Sarah lucky people with a reasonable number of lymph nodes can take a bit of heat. Those is us lymph node lacking cannot. So no more hot tubs jacuzzi steam room sauna or even a hot bath! Well we can risk it for short periods if we want but really need to avoid anything that puts too much strain on the lymphatic system as we could end up with fat arms 😬

 

Missy doesn’t want to go on a diet she’s happy with the size she is so I’m wanting to avoid where I can. Although I’d like to do more about the lymphatic drainage self massage and brushing and things like that, left a message for the physio as she’s still not called me 😕

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Re: February starters 2019 - yes, we rule!

Nettie I don't think there can be any grand harm in delaying the start of the hormone tabs and giving yourself a little break to recover from the non stop medication, before launching into the next lot, as my docs don't seem to be in any hurry to give them to me.... I don't even have my appointment with my onco to *start* discussing onward treatment (zoledronic acid, hormone tabs) until end September....

 

and what's this about not being able to go in hot tubs???  I've been in the hot tub at the gym at least 3 times this week!

Member

Re: February starters 2019 - yes, we rule!

Hi everyone 

sorry ive not been on my lad joined Army last week as an aircraft technician and been helping him get his stuff costs a small fortune and emotional goodbye as he was a Little Rock to me...

I am still waiting for my appt to start my rads for 3 wks gotta have it on my boob armpit and neck and having some booster in my boob - I cried when onc went through the risks regarding my lung and having rads if you don’t go through enough.

my lump in armpit has finally gone gown this week I told myself I wasn’t having it drained again after the nurse was not very nice the last time. My nails are still shocking and ends are numb still

Also bought a hot tub and it’s bloody marvellous I think this helped my armpit to be honest by water massage

i have read through loads of your posts and although we are near the end we still suffer- hopefully we are through the worst and now recovering- tamoxifen hadn’t yet caused me any issues other than waking in the night but once said I’ll be on it over 10 years and small risk of ovarian cancer (ffs really) well I’m still here taking each day as it comes 

Hope you all have a good couple of weeks 

Deano xxx

 

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Re: February starters 2019 - yes, we rule!

Nettienoo, totally understand your delay with anastrozole, I delayed mine until I knew I had a "clear run" I started mine on July 4th and like our daisy have been absolutely fine, so I'm confident you will be too....have a lovely time x

Member

Re: February starters 2019 - yes, we rule!

Sounds lovely Nettienoo.  Have a great time.  I have been on the Anastrazole a week now and dont think I have any side effects so far so dont worry too much x

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Re: February starters 2019 - yes, we rule!

Hi lovelies, I’ve just managed to catch up with your posts. Sorry to see that you are suffering Susie. I wish I could press a fast forward button for you. It must seem never ending. Special hugs. Also for you too Daisydi, Sonia and Edinbird. Marlyn, the constant styles sound a right pain in the butt. I’ve never had one (yet) but imagine they are flipping painful. Hope they stop when the Herceptin does. Sarah, the results of your tidying look amazing. It must feel quite therapeutic having all your supplies so neat and accessible. We arrived in Kent yesterday after a pretty horrendous 5 hr drive. We came through torrential rain and lightening on M25. Did lots of crawling along on various roads but the doggies were really good. Luca is very laid back in the car and Callie has diazepam from the vets for travel so she was in happyland. It was pouring down when we got here but lovely and sunny today. Just lazing about recovering from yesterday. I still haven’t started my Anastrazole yet. Will do it when holiday finished. I hope I’m not causing problems by leaving it for a bit but I just didn’t want new side effects whilst away. I’ve noticed the nerves are repairing on the surgery line under both boobs. It was numb before but now I have feeling and they feel rather sore. They look alright thought so may be just a change of bra needed now.its nearly 10 months since diagnosis for me. I’m sure everyone will know the feeling of life having been on hold. I’m hoping a change of scenery and peace and quiet will help me to start feeling more normal. I appear to have capsular constriction (I think that’s right name) going on in my reconstructed boob. I am due to see the breast surgeon sometime soon and think she will tell me it needs correcting so I don’t think my bc experience is finished in any way. I’m just making the most of a little break in the barryness. My foggy brain seems to be improving a bit now at 5 weeks since last chemo but I’m still having a real problem with names. Anyone else having this problem? It’s making me look really stupid sometimes. 

I hope Seaside’s flight went ok and she is now in Orlando loving every minute. 

There is no WiFi on this campsite. We are right out in the countryside surrounded by oast houses and pretty villages. 4g is very intermittent so will just jump on forum when I can. Love you all. Xxx

 

Ps will try and post pic. X

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Re: February starters 2019 - yes, we rule!

Hi Trixielady 

 

Re lanyards at the airport I'll update you later when I'm a bit more 'with it'. When are you going away? You can either have one posted to you or collect at the airport. You don't need medical evidence.

Susie B xxxx   

Member

Re: February starters 2019 - yes, we rule!

Hi everyone 

 

Well TC is making me absolutely knackered😪😪😪😴😴😴 and aching. Didn't realise how much I was aching until I took some paracetamol. Rosina, I'm not quite at the suit of armour stage but not too far off. Despite the tiredness yesterday I did manage to get outside yesterday afternoon and dead head all the geraniums that had got battered by the wind and rain. No chance of doing it today as it's currently pouring down with rain🌨🌨🌨🌨🌨.  

 

Shame Boardmasters was canelled sonia28. Who'd have thought the weather could be so bad at this time of the year. I hope your skin continues to improve. I'm beginning wonder how mine will react to radiotherapy as I am prone to eczema and not sure how my skin will cope with creams I've never used before. Guess I'll just have to wait and see.   

 

Implausible, I'm impressed with your craft area☺. 

 

Edinbird, I hope the hotel comes up trumps and let your husband use the facilities instead of you. The risk of lymphodeama is a pain. When I was booking for Iceland I found myself looking to see if the hotels I was looking at had outdoor hot tubs with the romantic idea of being sat in one watching the Northern Lights.  Then I remembered☹☹☹😩😩. I may ask and see if a 5 to 10 min dip might be possible. Fortunately I've done the Blue Lagoon a few times so wasn't bothered this time. Hope you continue to recover well from your surgery. Just keep an eye out for any growing tennis balls and ensure you get the area drained if necessary. It doesn't hurt at all.

 

DiKat, good to hear from you. A meet up within your group sounds lovely. A chance to meet all those that have helped you throughout. And you're quite right, 9 months since diagnosis is a long, hard slog. I'm the same as Marlyn 8 months since diagnosis and finding it particularly hard at the moment. Doing a trial and having 8 rounds of chemo doesn't help.  

 

Noticed some chat about visitors. I'm sure my Mum wants to see me and I'm wondering how I can delay any visits until Christmas. Going through chemo and avoiding relatives I don't particularly want to see, as I can use side effects as a reason is easy, tired, low immune system etc.  Between chemo and rads isn't going to be so easy to avoid seeing her or my brother for that matter. I just want to get on and go through my treatment and not be told how well I look, how it's nearly finished, you know what I mean.  

 

Anyway must love you and leave you for now as I am going brain dead. Not sure if what I have posted makes much sense. Forgive me if it doesn't. Only 2 more sessions of chemo brain to look forward to😆😆😆😅. xxxxxx  

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Re: February starters 2019 - yes, we rule!

Morning lovely ladies 

Nice to hear hear from you Dikat 

Whats this about lanyards at the airport??

I was supposed to be getting assigned support at the airport but they want another letter  last one is apparently out of date, so hopefully can pick that up tomorrow.

Happy birthday or belated Sar xx

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Re: February starters 2019 - yes, we rule!

Sonia, yes...that's the stuff! Flamazine....I only used The hydrogel they gave me until the skin healed over....anything else stung like hell....it's mind boggling isn't it? If rads can do that to the surface, what's it doing/look like inside?? The underneath of my other boob was affected too but not so bad....it must have been in the line of fire! Xxx

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Re: February starters 2019 - yes, we rule!


@Marlyn wrote:

Sonia,

i never stopped slapping on the cream, I just made sure I didn't slap it on before I got blasted...my skin took an awful long time to get get better and heal....what you using? Mine only got better when I used the stuff they gave me....xx


I’ve got Flamazine to use on the site area which is almost all of it now, it was doing so well until nearly a week after radio finished and I was still using aveeno and aloe Vera gel. The Flamazine has silver in it to help the healing. The two areas that were a little red have all but cleared up, my scar line and under my arm pit are still red, the good thing as I don’t have a lot of feeling along the scar line that doesn’t hurt, and I think it’s just the movement in my arm that causes the discomfort now. They said not to use moisture when using  the cream and area sore, but unsure when to start up

moisturising again.   

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Re: February starters 2019 - yes, we rule!

Hi DiKat - let me know the types of things you like to see and do - Bristol has so much, I'd need to narrow it down.  It's a great city to take teens to.  Bath is also lovely, but in a posher way Smiley Happy

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Re: February starters 2019 - yes, we rule!

Hi Marlyn

The hycosan are the blue ones, just to put moisture back in the eyes so readily available.

I’ve had 8 Herceptin now so 10 more to go. I have mine with Pertuzumab IV due to latest research saying it ups the odds, only very slightly I think. I’m different to you though because I’m completely Her2, tested neg for Oestrogen and Progesterone, and was stage 3. Fingers crossed 🤞 you get to finish after 9. At least that would be 1 less drug in your system xx

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Re: February starters 2019 - yes, we rule!

Morning dikat,

lovely to hear from you. I'm defo putting my styes down to herceptin, I have just got rid of one and now have two coming on on the other eye(!) they get so sore and itchy....I shall enquiry about the hycosan eye drops in the chemist....unless they are POM? I'm hoping I can cease herceptin after number 9, the onco did mention the  trial at the very beginning....fingers crossed!

 

 

I agree, it's certainly a long hard slog, it's been 8 months since my diagnosis.....xxx

Member

Re: February starters 2019 - yes, we rule!

Good morning ladies 

Thought I would pop by and say hi to you all. Good to see that most of you are doing well and sending hugs to those of you that are still going through it with treatment and medication side effects. 

I’m just coming to the end of my Radiotherapy. Have 2 more left out of 20. Although it’s nowhere  near as bad, physically, as chemo I have been surprised by the effect it has had mentally. I think it’s a mixture of the travel, tiredness and being around other people in a far worse state. It’s been 9 months since diagnosis so also feels like a long hard slog! I just wanted to comment on your post re the Herceptin and sty’s Marilyn. I’ve never suffered with them before but have had a couple of small ones and I am on Herceptin so wonder if there is a link?? I do seem to suffer with my eyes now. I went to the opticians last week and she said they were very dry. She recommended that I use hycosan eyedrops indefinitely. Asked her if it was due to chemo and she said medication and hormonal changes are both factors so double whammy there then!! You may have noticed our Dec forum has gone a little quiet. We have set up a Facebook messenger group as we have been arranging our meet up so really excited about that 😁

Sarah, I hope you don’t mind me asking but me, hubby and kids age 17 & 15 are going to Bristol/Bath at the end of the month for a few days. Never been before so wondered if you have any recommendations for ‘must do’s’. Loved all your pics of the street art.

Sending you all love and 🤗🤗🤗 xx

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Re: February starters 2019 - yes, we rule!

Thanks Rosina I suppose I could... I might need to!

 

Had a shower and took off the drain dressing that area looks fine. Went for a walk for about 45 mins gentle pace and left hand in my pocket to keep it comfortable but now I’m home I’m tired and cold. Hopefully I can sleep, I’d rather be cold so I can warm myself up with the flushes! My eyelashes look so much better than last week although I have a few mutant really long ones!

 

Had some good news from the hotel who said husband can come to the spa day too but then they backtracked and said they’d need to check... might have to pay too. Will hear tomorrow. I’m not using stuff so he might as well, don’t mind paying for extra lunch but don’t really want to pay for him to swim. Hoping they’re nice given the situation.

 

Not got hold of the physio so hopefully I’m doing everything right!

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Re: February starters 2019 - yes, we rule!

Hi Edinbird,

this bit made me grin :


“@@Edinbird wrote:

I know it’s my birthday but I’m going to be so fed up of having people around me constantly by then. Can’t exactly say no.”

 

A friend of mine asked me what I am doing for my birthday and I said I am going off camping to walk in silence with 6 other strangers 🤪

 

Daisydi , I enjoy my own company and my own space too.  Any ‘sane ‘ adult , human being should .

 

Edinbird you could always excuse yourself for a nap and disappear to your bedroom couldn’t you???

 

 I had a friend/colleague  over for lunch today. It was good to catch up , but 3 and 1/2 hours later I wanted to flop. It’s not anti social it is self  care 👍

 

The R1/R2 is working very well. No burning or itching.

 

Safe journey Seasidesar.

 

Hugs to everyone,

Rosina

 




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Re: February starters 2019 - yes, we rule!

Sonia,

i never stopped slapping on the cream, I just made sure I didn't slap it on before I got blasted...my skin took an awful long time to get get better and heal....what you using? Mine only got better when I used the stuff they gave me....xx

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Re: February starters 2019 - yes, we rule!

Afternoon ladies, 

I'm still here too, just lacking in internet and kids keeping me busy. 

Wow 8 hours sleep Marilyn, that sound lovely. I wake several times in the night with hot sweats, and struggling at the moment with my sore arm pit, but hopefully that wont last much longer. I needed to ask you, when your area stopped being sore when did you begin to moisture again, as the all the areas are beginning to dry out where I'm using the cream.

 

Daisy, its just keeps giving I know you've suffered lots of side effects, hope the eyes settle soon. it must be so hard with all that driving too.

 

Sarah, I love your craft room, I love a good sort out.

 

Seaside Sar, enjoy your holiday xx

Susie, I hope the side effect don't last much longer, boy I hated them.

Edinbird, take is easy on yourself, and try and relax as much as you can.

MJB, how did the french toast go? 

Better go can here the fisher boys coming back from the beach wonder if I have any tea? Smiley Happy

 

Take care all xx

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Re: February starters 2019 - yes, we rule!

Maryln 8 hours wow Im so jealous!  I too have been suffering with my eyes.  So sore, swollen, red and itchy but no styes yet. I'm putting it down to my eyelashes trying to grow back and the follicles being irritated.  My friend who had bc last year kept getting styes and she isnt on Herceptin.  She only had 3 rounds of CT and is on Anastrazole.  Hard to understand  what causes what side effects.

Speak later have got to go out and put petrol in the car.   It is costing me a fortune travelling up and down to Norwich every day. x

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Re: February starters 2019 - yes, we rule!

Daisy, 

since the menopause I've struggled enormously with sleep, it's very much hit and miss with me now, the other night I lay awake until 3am.....last night I got off in about an hour, and awake around 7am...so about 8 hrs....result!!! So I can't blame the anastrozole. What I am getting now though are loads of styes, I asked the onco and he said unlikely to be herceptin but the chemo nurse said likely to be herceptin (?) will be interesting to see what happens when it finishes beginning Nov....xx

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Re: February starters 2019 - yes, we rule!

Edinbird good to hear from you.  Its sunny here in Norfolk but I cant go out without a hat and scarf so I'm sort of stuck in too!  Know what you mean about visitors.  A friend and her daughter want to come to stay at the beginning of September but I would rather they didnt.  I'm finding I am a lot less tolerant of people, even if they are nice, but I need a lot of space and the thought of two other people living here fills me with dread.  Also I have only just started on a major clean up and this then puts pressure on me to get everything done and I cant cope with pressure at the moment.  Its good you are not in too much pain.  I think I eventually just took painkillers at bed time so I could get some sleep.  On that note I cant sleep again.  I am waking up every couple of hours so never feel like I have had a proper sleep.  Wondering if it might be the hormone tablets.   Did they affect your sleep Maryln.  Wouldn't be normal for me not to have any side effects!

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Re: February starters 2019 - yes, we rule!

Morning lovely ladies,

 

Didn't think I was going to get a chance to pop in and say hi before I leave for Orlando but since my flight is delayed it gives me a chance for a quick natter.

 

I have had a busy weekend what with Newmarket on Saturday (didn't win a thing!) and packing yesterday. Then headed to the airport last night as we're flying from Manchester. Got my lanyard, thanks for the tip Susie, and here it's a sunflower one. Has been very helpful as I am struggling with the standing up and walking. So I've got my seat in the priority section and I'm feeling a bit calmer now.

 

I'm sorry to hear some of you are suffering SEs, Sonia, Daisy and Susie,.hope it all settles soon.

 

Sarah,.your art stuff looks fab! As a teacher I particularly appreciate that as I love things looking organised. My classrooms always have the tidy look about them.

 

Edinbird, sounds like your starting to recover. Hope you get your full range of movement back soon. It's depressing not being able to go in saunas and hot tubs isn't it? Hope you have a nice weekend with your parents.

 

Right, should be boarding soon so better get ready.

 

Have a great week everyone.

 

Sar xxx

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Re: February starters 2019 - yes, we rule!

Thank god you're all still here , I get so used to dipping in and out of everyone's lives, I'd wondered where you'd all gone! 

Daisy, ouchy...the itching drove me nuts too...hope the rest of it goes off smoothly...

 

edinbird, good to hear from you love, totally understand about the " too peoply " situation...a week? Oh boy....keep strong and pray for patience..

 

implausible, very neat arty corner...I do love straight lines and order....

 

susie, thinking of you getting through the chemo fog, you're well drilled now love, just do what you gotta do to get through it, how many more now? 2? 

 

im hoping everyone else is doing ok....and yes, it is a good sign that we're getting quieter, hopefully it means we cracking on with life...

 

love you all xxxxx

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Re: February starters 2019 - yes, we rule!

Hi everyone 

 

I'm here☺. Will catch up later. Chemo side effects are making me sooooooo tired😴😴😴😴😴😪😪 at the moment. xxxxx

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Re: February starters 2019 - yes, we rule!

I’m here! Managed to grab a dressing gown chuck it on run down the stairs and find a key whilst the postman waited so that’s progress! I feel very much like a did last time but just with a smaller range of movement and more numbness. The arm doesn’t hurt really although certain movements (like walking) can bring some discomfort. So I’m back in the why do I need painkillers for no pain position.

 

The weather here is just on off heavy rain and sometimes some sun (seems bright now) so not sure whether I’d want to be going anywhere. I have emailed the spa for next week telling them I can come but I can’t use most of the facilities (ever!! Seems I’m to avoid hot baths and saunas from now on as it’s a lymphedema risk) and they may have to modify the treatment too (not sure any massage onto my chest would be good and again, nothing on my left arm or hand) - so I’ve asked if maybe my husband can use the facilities instead since he’s got to drive me and then wait about for hours or drive home again. Fingers crossed for some nice compassionate people.

 

My parents have decided they are coming next weekend. That’s ok but it means because I can’t get myself to the spa that I won’t have a single moment to myself from Friday evening this week right the way through until the following Sunday evening. I know it’s my birthday but I’m going to be so fed up of having people around me constantly by then. Can’t exactly say no.

 

I know Susie and I are on the drag with our treatment compared with everyone else but it really feels like most people are moving on a little bit. And quite rightly so if you can. I know that actually some of you will be taking things for years and of course it never really goes away but when I still don’t know if the surgery phase is over and I’ve still got so much active treatment to come, it’s pretty depressing.

 

Anyway the physio I missed on Friday when I was in the shower called and wanted to go over the leaflet with me (which the nurse already did but good that she’s following up) so I’d better give her a call. If there is fun to be had let’s see please! Sar I think you win once you get to America! 🇺🇸