I have just caught up reading all your posts.
Seasidesar , glad to hear that you have had a great time in Florida.
I like that ‘Tree of Life’ photo, do you know what tree it is ? Looks like a Buddha tree.
I hope puss cat gets better soon too.
Implausible, Birmingham looks like a good day out. The guest street artist from Dubai is really talented. Love the colours.
The big earrings suit you too. Get some more! Have a collection of them.
MBJ , enjoy your singing and choir. Keep your energy for doing what you love.
Nettinoo hope this acid reflux business sorts itself out. Nasty.
Marlyn, styes are nasty too. Is there anything you can use to clear them ? Eyewash?
Yes, you are correct I have thoroughly enjoyed my 3 days away hiking.
The train going down to Totnes was packed on Saturday (I had reserved my seat and I had to politely point this out to the person sitting in it and they kindly got up). On the way back it was just as packed and I ended up giving my reserved seat to a very elderly old man who needed it more than I did so I ended up standing for the last hour to Reading , but I ended up chatting to 2 lovely young ladies.
I was in such a good mood after my hike that GWR and it’s shoddy service didn’t get to me.
The Hike was brill and I would do it all over again ( probably go for a Spring one just to see the moor in another season ) , I swam ( absolute delight) in a lake and the scenery was breathtaking. I did make sure that my arms and neckline were covered though to protect against sunburn.
Now to add some pics
I haven't been too bad today. Thank you for asking. Hubby had a day off work so we went for a pub lunch, walked around a local garden centre then came home and generally chilled out. No sure yet if my low mood is down to T, coming to terms with my TNBC diagnosis after several months of not knowing and high number of lymph nodes being positive for signs of cancer, just being fed up with months of treatment or a mix of everything. I'm seeing an onco (not my usual one) tomorrow together with my trials nurse so I'll be having a chat with them. My trials nurse needs to know EVERYTHING whether it's physical or mental.
On the hair front I'm sure it won't be long before you lose the US marine look. As for me I'm going to hang on to the teenage orangutang look😨 for a little while yet as it's protecting my scalp whilst cold capping. I might just be brave enough to post a photo before I rock the pixie look. xxx
Marlyn, in answer to your question, thankfully I have only suffered with bad reflux since final FEC. I’m sure my gp will sort me out with something when i can get an appt!!!! I can’t be bothered to travel all the way back to the Oncology assessment unit at the moment. I’ve had enough of the place. X
Welcome home SeasideSar, amazing photos and you look great. I think a holiday has done you a world of good.
Also great photos (and vid, I was singing along) from MBJ and Imp too. Your hair has grown so much already. I am living in hope that I am out of my “US marine” stage soon now I have seen your hair growth speed.
Susie how are you doing today? 😘😘😘
Welcome back Seaside!
Glad you had a fantastic holiday, and especially happy to hear that you got to go to MNSSHP, always used to be the highlight of our Florida holidays, it was the main reason we almost always went in October. I didn't realise it was on as early as August! Does everyone still dress up and trick or treat?
I'd really like to get back out there one day even though the kids are all grown up now, but my other half is not keen.
Sorry you came home to a poorly cat though glad she's feeling a little better.
I'm torn on the airport lanyard thing.... I'll be flying out from Heathrow when I go to New York at the start of October, and I'd be lying if I didn't say I liked the sound of the extra legroom upgrade and biscuits!! But I flew in the middle of chemo and survived without any extra help so I figure that I can probably manage this time given that I'm feeling a lot stronger now than I was then....? I guess I don't want to be made a fuss of when I am pretty sure I can manage without.
On the other hand, I might need a hand getting my suitcase off the baggage carousel on my return home, as I'll, as ever, have a case full of books and they weigh a ton! But I was just going to do what I usually do and ask the nearest strong looking dude for help (putting the feminist cause back 40 years in the process!).
My other half thinks I should definitely get one (having read him your account, Sar!).... I'll continue to ponder it.
I would definitely recommend the lanyard for your trip to Abu Dhabi if you get to go there. It made such a massive difference for me.
Enjoy the Greates Showman and the flash mob. Sounds great! Hope the weather behaves.
Hi Susie B,
It certainly was a pleasant surprise to feel the warmth when we landed on Friday. Usually it's bloomin freezing! Our hotel was the Hilton Parc Soleil. It's about 15 to 20 mins from the Disney parks and we found it nice and peaceful.
My cat seems a little better today thank you. She has eaten a small amount of food and has been cuddling us a bit too so hopefully she's on the way to recovery.
Hope you get to book your break in December.
Seaside Sa your holiday looks fantastic I am so glad you were well and able to cope with it all. I think I will get one of those Sunflower Lanyards if I am well enough to visit our daughter in Abu Dhabi in November. It seems to have worked well for you.
Implausable I love your posts it's like reading a lovely story, the street art is so clever. Yes I would have cried in Dumbo too. We are going to see an outside viewing of The Greatest Showman in the Botanical gardens of Wales, the Rock Choir are doing a flash mob of This is Me before the start of the film. So should be fun. But weather looks a bit wet 😟.
Susie B I have included a photo of us smiling Rockies yesterday on Mumbles Pier.
Hi Seaside Sar and welcome back. I'm glad the lanyard worked so well for you which helped to get your time away off to a good start. The photos are brilliant and now I want to make a return visit myself. The hotel grounds look pretty good too and slightly familiar. Which hotel was it if you don't mind me asking? It must have been great to have a bit of family time in the States too. I'm with you on how a holiday can give you a break from all this Barrying bc. I'm going to ask my onco if my rads will be over in time for us to have a couple of days away in London in Dec, then we're off to Iceland in March. I hope your cat recovers from her ordeal too.
Enjoy the welcome sunshine🌞🌞🌞🌞. Bet you weren't expecting such beautiful weather on your return!!!! Take care. Susie B xx
Good morning everybody,
I'm back! Well I actually got back on Friday morning but have had a combination of jet lag, poorly cat and various social gatherings to contend with so haven't had time to post anything to you lovely ladies. Read all your posts from last week at 5am today (bloomin jet lag!) and now sitting down to share what I've been up to since taking off from Manchester.
You may recall I had great success with the sunflower lanyard. I am happy to report that the priority/kind treatment continued on the plane, where we got moved to extra legroom seats and given the upgraded entertainment package as well as extra drinks and biscuits, right through to when we landed in Orlando and got moved to the front of the queue at passport control. I was nearly in tears at one point as I couldn't believe how nice everyone was. It really made a massive difference to what could have been a difficult journey.
Once we settled in our hotel, we organised to pick up our lovely daughter from work, so we had to wait several hours until what would have been 1am for us. It was hard but totally worth it as she was delighted to see us and we had a good old catch up before dropping her back off to her accommodation. Over the next few days, we chilled by the pool and made the most of free park entry which my daughter and her friends had accumulated between them. So we spent an entire day at the Animal Kingdom, a day at Epcot and we went to Mickey's not so scary Halloween party, which was great fun. At the parks we set up disability access service which acts like a fast pass for the rides so I didn't have to queue up. It really helped as the walking around tired me out quickly.
At the weekend we drove all the way to Jacksonville to see my husband's brother and his wife and children. It was lovely to see them and spend some time in their house. They have a lake at the back of their house which has an alligator in it apparently so I was a bit freaked out by that! There was also a chorus of frogs making themselves heard at sunset.
Time just went too quickly but I was ready to come home for a rest! Sadly that wasn't on the cards as my cat has developed an infection after all that dental work she had recently. So we were at the vet on Friday afternoon and have spent the weekend cleaning up the muck which is oozing from the lump under her chin. Sorry for the graphic detail. I think the lump has drained but she is still quite poorly and off her food so we will be returning to the vet tomorrow.
So here we are, back to reality. It was great to forget bc (to a point) although I was having to be extra careful in the sun and swimming pool. I would thoroughly recommend a getaway if you get the chance. It has helped me a lot.
I'll leave you with a few pics from the holiday.
Lots of love
Morning ladies, happy glorious bank holiday sunshine to you all!
So, where was I?
Sonia, really glad that you are feeling a little more upbeat after a good old cry, sometimes there is nothing better to let it all out than a solid weep. I am rubbish at letting tears come through for good, personal reasons (I think that's down to all the years I was married to a man who got very angry at me if I dared to cry, so I learnt to bottle it up), so that's why I like to go on my own to see a nice emotional movie. I do all my crying in the cinema, the new Lion King was the last film I sobbed through, very cathartic!
Here's hoping that the lovely weather this weekend has maintained your happy mood, hope it wasn't too hot in the caravan, or that you have a good fan.
Susie great weather for your son at Reading. Hope he took some sun screen!
As for the T side effects of doom and gloom, it is rotten feeling so down but maybe it is helpful in the long run that you are acknowledging and researching some of these fears and worries about the future rather than just pushing it all under. Hope your mood lifts soon x
Edinbird I'm super chuffed that you had fun at the spa day, you were definitely overdue a nice day! And great news that you made a new pal, of course I approve of the purple wig Really hope you can stay in touch and maybe meet back up with her if she is local to you. I must say I really enjoy my weekly walks with t'other Sarah, my chemo buddy. It is really good to have someone to chat with in person who understands what you've been through/are still going through.
Also glad you had a good birthday, tons of fab pressies there! How was the Fringe on Saturday?
Good luck with the doc and physio on Wednesday, and don't worry about that hairy armpit! Quite sure they have seen worse
Oh and is the ear all better now?
Rosina, you are making me laugh, now I'm imagining an outdoor bound course full of suicidally depressed people, and the instructor rushing around trying to stop them all flinging themselves off cliffs like lemmings
Sonia (again), glad that your sister sounds like she is all clear, must have been a relief for you both. And glad to hear that your surgeon is keen to get you back up on the table sooner rather than later! Nice to get things done and dusted.
Susie (again) you are making me fancy an ice cream for breakfast. Trouble is, I know if I go to the freezer there will be none left. Blooming teenagers are like locusts.
Nettie and MBJ, good to hear from you both, you've been missed.
MBJ, I'm glad you had the sense to chase them up at your cardio clinic when they had forgotten you. I am such a meek twit when it comes to stuff like that, I'd have been sat there for 6 hours silently grumbling but not daring to say a word!
And then there was the emotional hit of returning to the chemo ward and then the time mix up on your bone infusion thing. Triple whammy. You must be really fed up of the medical system right now!
Oh, make that a quadruple whammy with the wrong date for the next appt... sigh!
At least you got to go and sing out all that stress in the sunshine with your choir. Love the videos you shared on facebook.
Nettie, really glad you had a lovely break. Apart from the obvious less fun moment. Oh my lord! What an experience. Think I might have ignored the "wees only" notice and thrown up in the chemical loo, and hoped it was liquid enough to flush! you poor thing. Hope you can get the reflux under control, you don't want to get caught short like that again any time soon!
As for the bra flashing, you hussy you no doubt put a few smiles on a few faces, even if it wasn't the sexiest bra on the planet
Marlyn.... your "some dodgy twitching geezer on a street corner" comment had me in stitches
Sorry to hear you are feeling a tad glum, but from what the breast cancer nurse told me when I had my post treatment check up on Monday, that's really normal at this stage, when most of the major active treatment is done. In fact she as good as told me that I'm weird because I was feeling pretty upbeat! I'm sure my glum time will come.
Do let us know if the CBD oil helps. Although anything called "oil" puts me right off. I remember my mum making me have spoonfuls of cod liver oil as a kid. Yuck!!!
And good luck sorting out those styes, must be horrid
So, what has everyone been up to in the lovely hot weather?
I didn't have any particular plans, which is very unusual for a bank holiday weekend, so on Saturday morning I phoned the other half, said "I'm booooored, let's go somewhere". He suggested Birmingham as we haven't been there for a while and he had a tip off of some new graffiti locations by the canal near Smethwick (we go to the most glam locations )
So I jumped in the car, picked him up on the way, drove to Brum, where we proceeded to completely misinterpret the directions he had been given and walked about 8 miles down the canals and back and never found any street art at all
Never mind, it was a lovely walk. And we did spot a cool statue to commemorate the miners who used to be working away underfoot....
After the walk we drove into the centre, and went looking for an open shop that could sell us a drink or an ice lolly, it was surprisingly hard to find one. It was gone 6pm to be fair but there were still plenty of people milling around.
Then we turned a corner and there was an open air cinema set up, with astroturf and deckchairs, right in the middle of the street and there was also an ice cream van, yay! So we each got a lemonade lolly and sat and watched Dumbo for 45 minutes or so. It was lovely and relaxing.
Talk about a sad movie! I had to hold back the tears when little Dumbo was born and everyone was so mean about his big ears!!
Then we walked down to the Digbeth area and finally found some cool street art to make up for drawing a blank earlier by the canal...
Got home about 11pm with over 20,000 steps on my Fitbit. It is wonderful finally having the energy to do either of those things (late nights, long walks), as I definitely wouldn't have earlier in the year.
Then yesterday I went to Cheltenham, hung out with other half for a while as he was doing some painting down in the tunnels there (they have 2 railway underpasses where anyone is allowed to do graffiti legally without prior permission), and then I walked across town (in the blazing heat) to the library as they had a little mini comic con on there in the afternoon and a few of my pals were tabling there. It wasn't much of an event really, nobody was selling much, but it was nice to catch up with my friends and have a chat. And another ice lolly (the building was SO hot inside that the organisers were giving everyone free ice pops!).
Saw yet more nice street art on my walk, and also got a "death roulette" portrait done for my son (you spin the roulette wheel and the artist will draw you dying by the manner of whatever death method corresponds to that number on his list. Morbid but fun )
Another good fitbit day.
Today I plan to rest up a bit and do some arty stuff.
Long weekends are the best
Take care all
PS one more thing. I got new earrings! I've never been a big earring person but feel like I need to balance out the short hair:
What a muck up with your appointments. As for your emotions after returning to the chemo unit it's probably natural that you should feel that way. After the terrible experience you endured together with the uncertain future some of us face I'd say your feelings were totally normal.
Looking forward to the singing group photos. I find all your happy faces uplifting☺☺😊.
Take care, Susie xx
You really know how to live it up with a trip to Tesco😃😃🥂🍾. Sorry about your glum mood. I'm much the same at the moment and I don't think it's the TC now. Came out of that a few days ago and this feels different. As you say things are bound to build up after what we've been through. I looked into cbd oil a while back, it was mentioned in one of the forums on here, as it's reported to be of benefit against bc recurrence. I think the jury is out with regard to the claims. As for helping with low mood I'd be interested to find out it's effectiveness. I do anxiety/stress but not low mood or depression. I hope the styes clear up for you soon. I'm keeping the fluids up, wine, cider, cocktails🍾🍾🍾🍷🍷🍷🍸🍸🍹🍹🍹🥂🥂🥂😆😆😅😅🤣. I wish. Water for me it is then☹🚰🚰🚰 xx
Sorry but you've made me laugh so much re your acid reflux😆😆😃😃😃 incident I've got tears running down my face😂😂😂😂😂. On a more serious note I have got a similar problem with TC where I've thought I was going to chuck. I got through so much Gavisgon with FEC but never felt sick, that I haven't been able to face taking it since. My onco has given me something that is helping and I've found I can take fruit flavoured indigestion tablets. A couple of times, rightly or wrongly, I've taken one of my 'just incase' anti-sickness tablets. I'll make sure I've got plenty to get me through several weeks post TC chemo. As for the wardrobe malfunction ooooooops😫😫😲😲, how embarrassing. Happy to know the rest of your trip away proved therapeutic. xxxx
Oh our nettienoo, the acid thing sounds awful, have you had this all the way through? Yes, an you imagine if you'd been out? I bet you didn't know what was coming next!
Im hopeful the anastrozole will be fine for you. The only "thing" iv noticed since taking it is an ever so slightly glum mood ( and I'm never glum) but it's really difficult to pin it on anastrozole, I can't help feeling it's build up......you can't go through what we've been through and it not affect you in anyway shape or form. I had a telephone consultation with my gp on Friday, I wanted to know if it was safe to take cbd oil ( holland and Barrett....not some dodgy twitching geezer on a street corner) with all my meds....she gave me the green light so my first dose was Friday evening....I know it can boost mood so fingers crossed. I was actually taking it when chemotherapy ended but my bone nurse told me to stop as there was no proof it worked....well...in your face bone nurse if it does...lol
Im also completely plagued with styes, I now have 3 in one eye and 2 in tother.....I can't help feeling this is herceptin, thank god im due to finish in November.....
Well, it's a hot one for sure, I won't be surprised if our Rosina is out hiking this very morning, me? Tesco.....cause that's the way I roll!! Lol
love you all....keep your fluids up girls....xxx
MBJ, sorting appointment dates/times should be easy but there are so many errors occurring. So frustrating. It’s happened to me plenty of times. The worst one was when I had a phone call out of the blue asking me to attend for a heart scan the following day. To cut a long story short, after a few calls (by me) it turned out they’d got the wrong patients details from the Oncologist!!!! 😬.
I hope everyone is having a good bank holiday weekend. Daisydi, I see you finished rads. Great news. 😘
I’ve finally got round to starting on the Anastrazole this morning. I think it was Marlyn who took the first one and waited for the side effects. That’s how Im feeling at the moment. I really hope there isn’t any.
My break away in the caravan was very therapeutic. Lots of peace and fresh air and a chance to try and forget about all the bc barryness for a bit. I got to visit the river in Kent where I scattered my mum’s ashes 2 years ago and feel close to her. I also went to Pembury, (just outside Tunbridge Wells)my birthplace. First time I’ve been back there in 60 years.
Two incidents I have to tell you about whilst away. I can laugh about both now but didn’t at the time.
No. 1 was walking through Stourport on Severn town centre without realising the front of my shirt dress had undone and my matronly, beige, post surgery bra was on full display to the public for quite some time probably. I thought everyone was staring as I had my US marine head on display (too hot for headwear). Blushing now as I remember. My husband noticed eventually. If I’d been on my own, I could have walked around all day like it. 🙈.
No.2 was post chemo related as I’ve been suffering from awful acid reflux since the final one. I was sat reading quietly in the caravan one afternoon and my stomach had been feeling really acidic. I suddenly felt really sick and rushed to caravan loo. Then realised I couldn’t vomit in it ( only wees allowed lol). I then rushed back through the caravan and out into the awning, grabbing the rubbish bag that was waiting to be taken to the bin. Sat on a camping chair and spent a good 5 mins puking violently into the smelly bag of rubbish. During this time my violent puking made me wet myself and the camping chair......
my lovely husband took it all in his stride but just when you think things are going well eh? I’ve been ok since, so hopefully it won’t happen again. Can you imagine the embarrassment if I’d been out somewhere? I’m going to see my gp ASAP about the reflux. Xxxxx
Well I have been locked out, but now I am back. Not sure what went wrong but technology is a wonderful thing. Edinbird sorry I missed out on wishing you happy birthday. I see your spa day went well. Some ups and downs for you all this week as usual. I have had a hectic week.
Monday cardiology clinic to get the batteries changed and the recording downloaded. They forgot about me and I was there for nearly two hours. My name was hidden under a line from the patient before so they told me! I think if I had not asked I would be still there.
Tuesday dentist for checkup and scale and polish. Then later we went to Cardiff airport with my daughter and family as they had too much luggage to get into their hire car as they took all their skiing clothes back for December.
Wednesday bloods in chemotherapy. I had not really thought much about it but I was really emotional coming out, it really reminded me of how bloody sick I have the potential to be. When you have not been there for six months it sort of gets pushed a bit to one side. But I really felt it on Wednesday seeing others there some looking ok others not so good.
Today Saturday my appointment for the Zoledronic bone infusion was at 2.45 in the Tenovus mobile unit in the car park of the council offices. We get there at 2.15 in plenty of time. Two nurses are walking down the steps and ask if they can help me. So I told them. One said oh you should have been here at 12.45, so I showed my letter. They did do it for me but the whole unit had been packed up and was ready to leave. Lucky we went early for my appointment or I would have missed it. It could only happen to me. They gave me an appointment for six months with a blood form. You guessed it the date 11/2/19??? even if it was the 11Feb next year that's a Tuesday and the unit is only ever there on a Saturday. The nurse said shall I sort it for you and let you know. Me no thank you I will do it myself. Probably never get seen again otherwise.
Tomorrow I am hoping for a more enjoyable day singing with my Rock Choir in Mumbles festival we have two slots 12.30 and 2.30. I really hope the side effects I was told about today keep away as I really want to go. I think I will crawl there if I need to.
I hope you are all enjoying the nice weather it's been really hot here today. Hopefully have some pictures of our singing tomorrow. X
Hi my darlings, I’m back home and have WiFi! Yaaaaaay! 4G has been pretty rubbish at both sites and had used my data allowance up a couple of days ago. I’ll update on holiday a bit more over the weekend but have just seen our beautiful Edinbird has turned 40. Happy birthday. What lovely pressies. I’m so glad you managed to use some of the spa facilities and best of all made a new friend. What a bonus. Till tomorrow.....I have a few tales to tell. Night night. Xxx
Happy birthday Edinbird, Looks like you got some lovely presents, Hope you have a wonderful weekend xx🎉🎂
Aar happy very special birthday Za. Looks like you have some lovely pressies. Have a fantastic weekend. Lots of love xx
Happy Birthday Edinbird,
hope you had a good one.
Now lets see if this works:
Thank you 💙 keeping fairly quiet today going out for fringe part two tomorrow.
Being 40 has its benefits 😁 Za is my nickname, my sister couldn’t say Lisa when she was little so I was Zaza 😂 and my nephew calls me Auntie Za 😊
There are big-ending-in-zero birthdays all over the shop this week....
Happy birthday Edinbird!!!!!
Eat all the:
Hot and sunny here in Somerset🌡☀️🌞🌞 and I've got PICC line care this afternoon☹☹☹. Still perhaps I'll have an icecream🍦 when I return home🏡☺.
Chemo T doooooom seems to have finally lifted😊, until the next time🙁😩☹.
Will catch up later. Enjoy the sun while it shines🌝. Love to everyone xxx
Edinbird, glad your spar day was a success.
Susie, I’m glad the weather is starting to look up for you, it always helps my mood.
Rosina, hope you made your walk, another 3 hours planning people don’t realise how much goes into it all.
My sister only had to have mammogram and told results in 2 weeks so looks like she’s in the clear, while sat in the waiting room waiting for her, I heard someone calling Sonia, I didn’t look as I didn’t have an appointment, but it turned out that my breast surgeon had seen my sister and wanted to check in on me, asking when I was coming back for surgery, she’s been waiting for my name to come in the referrals. It was really nice to see her, she is much more approachable than my oncologist, I like her fiery spirit. So hopefully when I’m finished with oncology I might get reconstruction earlier but I won’t bank on it too much.
Edinbird, I am glad you were able to enjoy your spa day.
I certainly wouldn’t go into a jacuzzi during chemotherapy!!!
Implausible , yes I agree I am in a very good place mentally so if the outdoor course is for those who are struggling then I am not in that category. Maybe they need booster/motivator/my glass is half full bods to enthuse the more depressed individuals ( ????) just guessing here but it would be hard work for a team leader to engage a group with outdoor surprise activities if they were all suicidal 😂 ( why is this making me giggle - sounds like a great script for a Gervais TV series).
I have completed another 3 hours of school planning. Currently in bed , stretching my back out.
Plan to walk this afternoon.
Hello xx spa day was ok actually, was able to go in the jacuzzi pool up to my waist and the facial was fine the lady missed out around my jaw and was still able to give me a scalp massage and foot massage. Met two lovely women, one was a bit older and disappeared quite quickly after the treatments but the other was only 18 months older than me and is about a third of the way through her chemo (no way would you have got me in a jacuzzi during chemo!!). She had a fab purple wig on Sarah!! She had had a double mastectomy as she’d had three lumps in one breast and was positive for BRCA. I’ve got her on Facebook now so hoping I can meet up with her again as we seemed to get on well.
My ear is still sore today, I got fed up with my arm not being straight and hurting so I called the physio and have an appointment next Wednesday after I see the surgeon. The physio agreed I need some treatment for the cording so I’m glad I didn’t leave it until next week. And I’m not to put any heat on it! I knew it!! So many people kept telling me to. I don’t know how many sessions I’ll need. I’m more embarrassed about my hairy armpit since I can’t straighten it with the cord in the way to shave it 😝
Going to just leave the ear for now and see if it settles, I scratched it so I know why it hurts. And I’m taking the paracetamol anyway.
Daisy and Rosina so glad you’re finished your rads, I hope you don’t have any lingering issues you’ve had enough skin traumas Daisy! Yes it’s a little depressing at times seeing everyone else progress but actually I’m glad we are all getting through it. At the moment I’m more frustrated that I’m not getting any treatment, I know that more dodgy cells have been removed so it’s not like nothing has been happening but if all had been well I would be starting rads very soon. So it is a little concerning that there could be tiny cells in there that aren’t being treated right now. I guess that’s what the oral chemo is for. I’m not good at being patient! After the spa day I was exhausted and all I had done was had lunch, sit in a pool, have a facial and talk to people! I keep being told I need to take it easy but part of me thinks sitting about is making me worse. At least I have appointments next week to occupy me.
So currently just sat about! Husband is off today but he’s cooking and I always get in the way. So trying not to irritate my ear, probably time for more painkillers soon.
Well it's finally beginning to warm up here in Somerset so maybe a chance of a BBQ on Sat. Our son is off to the Reading Festival on Sunday so with the promise of fine weather it should be good. Just hope the better weather lifts my T chemo mood☹☹😩. The thought of recurrence or mets was playing on my mind yesterday and I found myself reading the forum posts on here under the section 'Living with Secondary Cancer' this morning. Whilst it was reassuring to read that women were living with the condition for years it's something I've never checked out before. Until now I've just concentrated on my current situation and taken each stage as it comes knowing that the bc will be gone after rads. Anything after that would have to wait until 2020. I'm starting to call the docetaxol the chemo of doooooom for obvious reasons. And I've still got 2 more rounds of the stuff☹☹😭😭.
Sonia, there's nothing like a good cry to let it all out. I shed lots of tears between diagnosis and the start of chemo. I keep telling hubby that when the main treatment, chemo and rads come to an end I think that's when I'll crack again. We were thinking of having a little break for our wedding anniversary but I'm minded to see if we can go up to London for a couple of nights during December, maybe Monday (9th) to Wednesday (11th) so we can do the Hyde Park Xmas market when it won't be too busy. Also I want to avoid going on my Birthday (5th) or the anniversary of my diagnosis (7th). I'll see if the onco thinks I'll be done and dusted by then. It might just give us a bit of breathing space before things start to hit us. I hope your sister's scan results come back ok.
Implausible, you are so right, going through chemo it's very difficult to keep busy or occupied all the time. I just don't have the energy at the moment. Even Tuesday's event was too much for me. Don't worry though, I'll get there, wherever there is.
Daisydi, thanks for thinking of me and Edinbird bringing up the rear. For me it's a little easier as there was always going to be the risk of having 4 rounds of TC if the 4 rounds of FEC prior to surgery didn't do a proper job as a result of randomization. If it had worked then I would have had just 2 further rounds of FEC. For Edinbird, and I hope she doesn't mind me saying this, it's been an absolute mare☹. On the plus side for me, at least, I've got plenty of people to pester about what to do to get me through rads, and not forgetting my current woes with TC.
Rosina, happy to know your trip to Eastbourne went well. Sicilian wine is pretty good, we enjoy it anyway🍷🍷☺ and you can't go wrong with Italian food. It always seems good wherever you go🍝🍝🍕🍕🍕. Not so sure about your green juice but with T tastebuds I think I would have drunk it, no problem😅😆😆😄😃.
Hope you're all ok Deano, Trixielady and Ocean21. Love to all you wonderful ladies in this February group. I will be rid of these perishing T side effects soon, promise🤞🤞🤞🤞🤞
Well yesterday seemed to do me good, a day of crying on and off all day gave me a goods nights sleep, which has put me in a much better frame of mind and mood today.Caught up with some friends this morning. Looking forward to a weekend up the caravan. The only down side is sat back in Breast care unit waiting for my sister to be scanned( just precautionary due to me and mum) but hey it’s not for me so that’s a bonus.
Back at the van tonight so signal but great but will check in on you guys xx
hope the sun shines for all at the weekend or at least stays dry xx
Rosina - I had a look into that Odyssey thing last night - it sounds brilliant! I love the fact that they have kept the actual content of the "experience" a secret for 20 years, the idea of spending a week being constantly surprised and challenged appeals to me so much. I wonder if I can find anyone in my practitioner team who could refer me, I'd love to take part. Although it does say it's for people who are "struggling to cope", which to be fair I don't really think I am, although neither are you from what I can tell!
Mind you, if one of the things they challenge you with is juice like that one you made, maybe not - that sounded rather less than delicious Think I'm with your son on that one
Glad you enjoyed your trip to the beach and your singular glass of red I actually had 2 whole cans of cider in the same night a week ago - I got proper tipsy! It is so long since I've had alcohol that I've totally lost my tolerance to it, am now a very cheap date
Susie - glad I made you laugh - in case you were wondering how on earth "painkillers" managed to autocorrect to "paramedics" - it is because I actually started with a particularly bad mis-spelling of paracetamol
Distraction is as ever the key to avoiding - or outrunning - a low mood - keeping yourself mentally and physically busy really works. I guess that's why it hits us so hard during chemo as we are simply too exhausted to keep busy :/
Daisydi - glad you are enjoying your
as for getting my house in order - the art room was the start - now I need to filter that through the whole rest of the house - eventually, I'll have a model home!
Re fingers and toes still "not being right", I lost another fingernail yesterday That's 11.5 weeks after finishing chemo. The gift that keeps on giving etc etc.....
I'm sat at work today with very little to do (which is nice really as it gives me time to catch up with you lot) - but it is frustrating knowing that my lovely new clear art space is at home and I'm here with nowt to do when I could be there making pretty things!
By the time I get home tonight I'll be too tired to take advantage of it :/ But thankfully I have a day off tomorrow, and I can't go out as I'm waiting in all day for delivery of my new phone, so that will give me the excuse and time to create. Yay!
Take care all
Morning, well my first day of freedom. Feels good! Sarah so pleased you feel well. I cant really imagine going downhill emotionally. As you say just to thought of getting my time back and not having to battle through holiday traffic into Norwich is a big big bonus. Your art room is so impressive. Well done for being so organised. Must try to get my house in order.
Sonia glad that you are finding counselling helpful. The counsellor I was speaking to over the phone has gone off sick but to be honest I wasnt really saying anything to her that I didnt say to anyone else. Will see how it goes.
Susie and Edinbird hope you are both ok. Must be horrible for you seeing everyone else finishing and you are still going through it. Lots of love to you. If it makes you feel any better I am still getting throwbacks from chemo. My fingers and toes are still not right and some of my nails have reverted back to the being stamped on scenario. I also still have the so called ezcema tracking around my ankle, foot and leg.
Hope Seaside Sar has had a lovely time in Florida and Nettie hope you are enjoying your time away in your caravan. I really miss my campervan.
Rosina well done on finishing rads too. Glad you had a good time away.
Love to everyone else xx
Good to hear from you and thank you for making me laugh😆😆😅. Going to bed with a couple of paramedics has to be the best autocorrect I've seen so far, and believe me it can come up with some weird ones. Your work space looks really impressive. Everything in it's own place, well done😊. Japan photos look fab. If I ever went it would have to be when all the cherry blossom was out.
As for the T the low mood, morbid may be a better description, lasts for around 5 days at most although yesterday was fine but I had something to distract me. xx
Edinbird, oh boy, you’re are being tested to the limit. Hope you feel better soon.
Daisydi , rads done . Hooray 😀
Implausible amazing job with your art and craft materials.
Also, I second what you have said about no more daily trips to the hospital 😀😀😀😀 I feel like I am getting my life back.
Escaping to the seaside was fab, lots of walking and a lovely evening meal in a cozy Italian restaurant. H1 encouraged me to have that small glass of Sicilian red which was delicious ( not touched alcohol since last November) with my meal.
Sleeping well ( even though I wake up because of the hot flush at around 3 .30 am).
I made myself a green juice of 1 dark cabbage leaf, 1 whole cucumber, 1 banana, ginger and turmeric. It had an interesting flavour. My son tried it and wanted to spit it out. The look on his face was priceless 😂
Actually it wasn’t that bad. Everything is an acquired taste really.
Sonia28, anything that will help you pull through is worth doing.
I told the radiotherapist ( during my last session) about how I like walking and hiking and she has gone ahead and referred me for an outdoor residential experience which is solely for cancer patients/survivors.
The outdoor experience is called ‘Odyssey ‘ and you have to be referred by an Odyssey Referrer (this is a Health Professional- who knows about the work of Odyssey).
Anyway I said I would be interested so watch this space. The course runs a couple of times a year in Kent and in Wales.
SusieB , hope you are doing well.
Well done with your fundraising efforts.
Seasidesar and Ocean21, Deano sending you positive thoughts too.
Time for a little catch up - been AWOL again.
Rosina first off, glad you had a nice birthday even if it did involve a double visit to the radiology place! They are such incredibly fussy machines. I had one double blast day too during my rads because the machine broke down mid-zap on the Thursday, so I had to be there twice on the Friday with 6 hours in between. Just slightly too long for me to want to wander around Oxford on my own (especially as it was pouring with rain and I was tired as it was the end of the week), so I ended up going all the way home then all the way back again. It was a pain in the butt but at least it wasn't my 50th birthday! Poor you.
I'd rather they put them out of order at the slightest thing, though, than keep using them when they are on the blink, as it is such a precise treatment. A couple of mm out and it could zap your internal organs!
I've had those Waitrose spinach pancakes before, and I agree they are lush.
Cool deer pic!
Edinbird - I'm assuming that your parents have now gone back home? Hope you enjoyed at least parts of their visit? Fingers crossed that Morrisons cafe wasn't the highlight
Sonia - oh my goodness!!!! that's not a "little" bleed! You look like you've been stabbed! Well, I suppose in a way you had Hope you managed to get the blood out of that t shirt - not a day for wearing white .... what a shock to the system! So you reckon it was due to asprin thinning your blood/making it less able to clot? Really hope that doesn't happen to you again next time Maybe wear a black t shirt just in case....
Susie - sorry to hear that the T-gloom has hit again - but glad I helped you recognise it as such. It was really obvious to me as I am a pretty upbeat person (irritatingly so!) usually, and hardly ever feel down or sad for no obvious reason, so it stuck out like a sore thumb for me. I found that I was proper glum from about day 6 to day 15 or so of each T cycle. I can distinctly remember sitting in tears saying to my other half that if the docs had told me how horrid chemo would be, I'd have refused it, and taken my chances. And that if the cancer came back no way would I have chemo again as I'd rather just dieeeeee. Really helpful! And probably not what my poor chap wanted to hear. I've snapped out of it since I don't remember ever getting snappy or irritable with it, just tearful and a bit morbid.
It does pass though, hang on in there x
Rosina (again), well done on ring-a-dinging the radiotherapy bell (I forgot to do that, not that I think they had one), and I hope you had a lovely trip down to Eastbourne. It's lovely being by the sea isn't it? A rare treat for those of us not lucky enough to live right by the coast.
Nettie - hope you are having fun in your caravan now you have found the light switch (or would you have even more fun in the dark? )
Sonia (again) - it is shocking what difference a year makes, isn't it. Or even less than a year. When I meet new people now I desperately want to show them a photo of me from January and say "this is what I REALLY look like, this is the real me!". It upsets me that this is what they think I look like all the time.... And as you say, the physical/visual effects of chemo are one thing, but the mental effects are another. I can barely string a sentence together. I am feeling a teeny bit better every day though, and I'm sure that in 6 months or a year or so we will all feel much more like our old selves....
Definitely ask for some support if you need it, it's there for the asking, and we've all been through a LOT.
Susie (again) - that Calendar Girls shoot sounds brilliant! You are SO much braver than me! I'm pretty adventurous and there's not much I won't try or do, but I think that's something I might not have the guts for Can't wait to see the pictures!
As for PTSD, it definitely isn't just for soldiers. I was diagnosed with/treated for PTSD after my marriage, and still (although rarely) have occasional flashbacks and sense memory triggers etc etc, and cancer nonsense definitely counts as trauma. Especially if there have been unexpected things or things that went wrong along the way during treatment (like hospital stays in a cupboard etc!)
Edinbird (again) - you really can't catch a break at the moment Fingers crossed the earache eased up and you managed to enjoy your spa day today.
Daisydi - yeehaw!! Well done for finishing up on the rads. Don't take the "low mood dip" thing as an absolute given, it may not hit you. I finished rads 3 weeks ago and have had really great levels of energy and mood ever since. I'm lucky I know, and when I saw the BCN on Monday she did say I was unusual in being so damn cheerful! But I'm living proof that the post treatment slump isn't 100% inevitable (or maybe it just hasn't hit me yet!)
Just having all that time back and not having to traipse miles to the hospital and back every darned day is such a blessing.
Sonia (again) I'm glad you have got yourself on the waiting list for some counselling. I know I've said it before but I am a huge fan of talking therapy. It has - no exaggeration - saved my life in the past. I am definitely going to treat myself to 6 weeks or so in the new year - I'm in no rush to do it sooner as I did have three sessions for free at my radiotherapy place, plus I have a 6 week "where now" course coming up at Maggies in September and October, which is kind of counselling-y. And, as I said above, my mood is good right now, but I know myself well enough to know that I will eventually need some help processing 2019, it has been a tough old year!
Only thing I would say is that not all counsellors are as good as others. And the bad ones I swear do more harm than good. I've had GREAT therapists and also quickly rejected a couple of not-at-all-on-my-wavelength ones. So if the one you are first assigned doesn't resonate with you, and doesn't immediately feel like someone who understands and can help you, ask for another one.
Jencat - totally get where you are coming from with the loss of confidence thing. I am fiercely independent and have always travelled on my own and thoroughly enjoyed my own company. I have found myself noticeably a little wary since diagnosis of being out in unfamiliar places alone. Not wary enough to stop me wanting to go places, but enough to feel a little anxious and uncomfortable. That's not like me at ALL. I think it was because, during chemo especially, I felt not only physically very weak and feeble, but also mentally not as sharp. Usually I figure I have the quick wit to talk myself out of most situations, but now I'm not so sure. I am definitely starting to get my confidence back though, and am off to New York on my own for a week in October, so that should fix me
That's me all caught up I think
We haven't heard from Seaside yet have we? I hope she had / is having (I'm losing track of time!) a phenomenal time in Florida!
As for me - those of you on Twitter or Facebook might have seen the end result of my art room clear out which has kept me busy for WEEKS. I'm so so pleased with it! For those of you not on the social medias, here are the photos of my gorgeous new stu-stu-studio
Recovery-wise, I’m fine after my little op on Monday. The wound where she stitched me back up stings a bit, but not enough to stop me getting around. The first night I was tired so went up to bed early with a couple of painkillers, but I’ve not needed any since then.
(That just tried to autocorrect to “I went up to bed early with a couple of paramedics” 😃 That would have been a VERY different evening!!)
I came home from the hospital on Monday to find my house covered in scaffolding, which was a bit of a surprise! I had completely forgotten that the roof chaps were coming to replace my guttering. I would blame chemo brain but to be honest they have messed me around so much and changed the start date for the work so many times, it’s no wonder I forgot. They should hopefully be finishing that up this afternoon while I’m at work. Guess I probably ought to pay them….
My only other news is that my middle son has just got back from a holiday in Japan with his girlfriend, and he has sent me some great photos. It looks so amazing, I’d love to go there.
I think that’s all from me for today
Love to all
Hi Sonia and everyone, I can recommend having counselling after treatment finishes. I had counselling with Macmillan and found it very useful .We talked about my breast cancer, but other things came up as well. I think when we're diagnosed we deal with what needs to be done and there's a routine with hospital appointments and tbh, whilst I was having chemo I was often too tired to think! Then all of a sudden radiotherapy finishes and you're more or less off on your own apart from a few appointments! I found it was then I started to process a bit more what had happened in that year (I was diagnosed June'17 and finished treatment June '18) and I also found that I'd lost confidence as I hadn't had to do much on my own during that time and became anxious quite easily x
Edinbird, hope you manage to enjoy your day.
Daisy, well done on finishing. Keep an eye on that skin, mine got sore 8-10 days later. I should have contacted them straight away, for the cream but left it a few days. I'm nearly cleared up now. The good side is where my skin had changed colour and got more freckly, that has all peeled off and my skin looks like it use to be.
"My review radiographer said that I might now take a dip emotionally "
That where I am now, I think Susie hit on the head yesterday with
"We talked about it after a while and he said that if you really think about we've had a huge shock in the same way that someone in the military sustains life changing injuries. Within a matter of seconds we're given this diagnosis followed by all sorts of treatment and procedures and chucked out the other end and are probably suffering from PTSD at the end of it all. So it's no wonder some of us need some kind of counselling or other support."
I went to our local support center the mustard tree and spoke to a support adviser. I did a bit of crying and a bit of talking, she has put me down for some counselling, there is a 3 month waiting list, but I can access the support center anytime I want. I have also signed up for some of the therapies, trying a massage again this time without an appointment following after, so I have time to enjoy and relax. As Sarah said its just not all the cancer bit that affect us, we spoke about loosing my mum at the same age I was when I got diagnosed to cancer, and I think that maybe that's what worries me, I never want my kids to deal with that as children. I hadn't thought too deeply about it since I got my diagnoses, but I do think it weighs heavily on my thoughts without realising.
On a good note, I have more energy and have started to sort through the house., finally.
Hope everyone else is doing okay.
So that's it. End of active treatment apart from the hormones. My review radiographer said that I might now take a dip emotionally. Something to look forward to! Apparently I will see oncologist in 3 months time and if I am tolerating Anastrazole ok then he will request DEXA scan. Just hoping my skin doesn't erupt. It is very red and sore. Tomorrow I have a normal day, whatever that might be! At least I can use sunscreen now treatment has finished so I can venture outside a bit more.
Hope you've had a nice day at the spa Edinbird and that everyone else is ok.
Another huge treatment ticked off daisy, it takes over your life doesn't it! Now try and relax......what on earth will you do with your day tomorrow??? Lol xxx
Edinbird, I feel so sorry for you. Might be worth getting it checked in case you've picked up an infection. I know you said you're not a huggy person but hope you're ok with virtual ones ❤❤❤❤❤❤. Susie B xxxx
So sorry you've got earache Edinburd and hope you feel better soon. Do you think you need to get it checked? It's understandable that you're feeling fed up. I hope you manage to have a nice spa day xx
Just about to go to the spa day - but had a really bad night because of earache 😞 so I have no idea what I’m going to be able to have done as I can’t touch my jaw area without it hurting 😣
So sick of everything right now, even when I have something nice to do I can’t! 😢
Well this morning's photo shoot went really well with lots of laughter😅😆😆😃🤣. I don't think any of us cared about being topless outside, which is where one of our shots was. 5 of us were sat around a table in a wood and glass round pod. Tea cups and cakes were the strategically placed to maintain our modesty in the photos. The other photo was inside based around a craft theme, knitting, sewing and painting using various props again. We were all very open about our surgeries, lumpectomy, single/ double mastectomy, no reconstruction and reconstruction. It was good to see others comfortable in their own bodies. Implausible I was talking to one lady who'd had the same operation in January as you're having next month. She was sporting 2 very evenly matched pert boobs which she was happy to show off. There's another session tomorrow but I'm going to give that one a miss as I'm really tired after this morning😴😴😴. One thing I forgot to tell you was what all this is in aid of. Yeovil hospital is aiming to raise £2m to build a dedicated breast cancer care unit. At the moment we have some appointments in the Macmillan unit, oncologist, PICC line insertion, chemo, Radiology for scans, Women's hospital for surgeons appt, ANC drainage, arm measurements to check for possible lymphodeama. You get the general idea. Also when we have appointments in the women's hospital we're in the same vacinity as pregnant women which isn't ideal. So the aim is to have literally everything under the same roof. Over £1m has been raised so far☺ thanks very much to a substantial sum being left in a will.
Sonia, I bet like me your reply to the assistant was totally out of character. I must admit there are times when I feel as though I've returned to the menopause☹ especially when I can't remember the name of everyday items or words. Sometimes my brain is thinking one word and my mouth comes out with something completely different. I know you've mentioned a few times recently that you're struggling a bit. My husband hit the nail on the head after what I said Sunday night. We talked about it after a while and he said that if you really think about we've had a huge shock in the same way that someone in the military sustains life changing injuries. Within a matter of seconds we're given this diagnosis followed by all sorts of treatment and proceedures and chucked out the other end and are probably suffering from PTSD at the end of it all. So it's no wonder some of us need some kind of counselling or other support. I know I'll be looking at what's available and give it a go when my main treatment ends.
Nettienoo, glad you got the light💡 problem sorted. My hubby's first rule of electricity - if you put b u g g e r in you'll get b u g g e r all out. Enjoy the rest of your break.
Hope everyone is ok. xxx
Hope your ok after yesterday bloody problem! Hope it wasn't your best T-shirt!
Mmm not good when they didn't keep you in long enough for observation but I bet you were probably pleased the less time we can spend in hospital the better xx
Susie, I can totally understand where your coming from. The lady in the co op was looking at my student ID photo which is only 1 year old. She said wow haven't you changed, is that really you. So my reply was "well that's what chemo does for you!" She didn't say anything after that.I defiantly struggle with post chemo/ hormone/menopause brain. Half the time I don't even finish my sentences.
I was all geared up for going to the mustard tree to ask for some support as struggling at little atm, but the whole bleeding thing threw me off, so will try and build myself up to go there this week sometime.
Can't wait to hear about your calendar girls shoot. I saw the calendar girls at the theatre last months.
Rosina, the hormone injection is a pellet that goes into the stomach, so needs a large needle, so the combination of that and asprin caused the bleed. I'm glad you had a nice birthday.Enjoy your time away.
Nettinoo, I know all about lack of wifi and caravans, enough to read most times but unable to reply. Enjoy your last few days on holiday.
Sarah, hope your still pain free, and get a good nights sleep.
night all xx
Sonia, bless you. Just seen the photo. You poor thing, you must have been scared and yes they should have kept you longer to make sure all ok. . Xxx
Sorry it’s late Rosina but I hope you’ve had a good birthday lovely lady. Spent a lot of today crawling round the M25 relocating our caravan from our last beautiful campsite in Kent to one nearer home in Stourport on Severn for the next four nights. No WiFi yet again and even worse 4g bit am managing to keep up to date with posts .
Spent a while trying to get the internal lights of the caravan working earlier. We couldn’t work out the problem and things were getting a bit frantic as getting dark. I then spotted we hadn’t turned the “lights” switch on on the main control panel. Doh! Think we maybe a bit tired. 😂.
Normal service resumed on Friday when we get home as far as posting.
Love you all. Xxxx
I'd forgotten your menopausal outburst😆. A trip down to Eastbourne seems the perfect to way to wind down. I'm trying to think of something we can do for our wedding anniverary on 16th Sept. It can only be a short break as I will have PICC care the Friday before, bloods and onco on the Weds and chemo on the Friday. Hope your final session goes without a hitch tomorrow. xx