Hi Ladies, hope you're all as well as you can be xx
Thanks Sonia28 for asking, I'm actually on holiday in Cala Bona (Majorca) I'm doing well but on constant pains relief for aches and pains to muscle and joints due to the letrozole. So emotional at times that the holiday actually happened, my sister & niece came for the first week. Happiness is really the best medicine my mind isn't troubled at the moment it really did feel good having their company and having the company of my hubby 24/7 be it only for another week it lifed my spirits to continue fighting but still found the need to check in here xxx
Hi everyone, so relieved that the forum is up and running again so I can check how you are all doing. I’ll post properly later on everyone’s news, good and not so good, as from yesterday I am staying at my daughter’s place looking after my grandsons 10 & 3 and Murphy the puss cat. Here until Tuesday while my Vicky and husband have a long weekend in Ibiza partying. Not the best timing as still feeling a bit weak and tired but it was all arranged last year and I didn’t feel I could let them down. I’ll certainly be sleeping well. The boys have been behaving very well so far, bless them. Xx
Daisy, you sound like your having a tough time. Have you been given anything for your skin. The stuff they gave me with silver in was brilliant, stained everything but was worth it. Hope your mums okay xx
Implausible, well you definitely had an eventful day, I'm glad both your sons are okay.
Edinbird, great news from onco.
Susie, hope you get a hair cut your happy with, Mine has gone all thick and curly underneath the thin longer layer I managed to keep. It will be interesting to see if it stays curly, never had any curls.
Rosina, I think you were due a nap.
Marilyn, I was the same missing all the updates.
MJB, Glad you didnt get any side effects, the nurse said to me the second one is usually less than the first, I only had one day of feeling slightly off, so hopefully that will mean nothing next time.
Trixielady, hope your okay, haven't heard from you in a while.
Is it bad of me to wish the kids back to school, I have loved being off with them, but I am so looking forward to having some time to myself next week. I'll miss them after a few days I'm sure 🙂
Hi all, I was getting into a bit of a tizz not being able to speak to you all. Glad everything went well Edinbird. I tried to type a big long post the other day but couldnt sign in and now I've completely lost the plot of what everyones been doing. As per usual I am suffering with some skin burns from my radiotherapy and it has been a complete nightmare in this heat. My neck started bleeding and is pussy but it has been very hard as whenever I move my head my skin splits again so it is so so sore and I cant put anything on it. Anyway some of it is healing and the pharmacist said it doesnt look infected so I just cant wait for it all to heal. Im babbling but I cant think straight at the moment as we are having a lot of problems with my mum. I hope you are all well xxx
Soooo much happening here and I didn't get my usual email notifications....feels like you were all having a get together and I was Billy no mates...anyhoo...you can't get rid of me that easy! Lol...
wow...implausible....living the gangster life! Swindon has changed....I used to live in shrivenham and Swindon was always a pretty quiet place...
edinbird, yay!!! High five girlie, about time you had some good positive news...
im dashing off now, got to secure the place for the night, Rubi likes to come with me and she pops in to say goodnight to a couple of my residents...... good to be back girls...take care xxxx
thanks for the info on the Disney tree.
Re. The man , he had to be cropped out of the photo (size reduction) so that the picture could be uploaded 😀
Edinbird, I have just had a 2 hour nap.
No walking today, but yesterday was 12 miles with all the family along the South Downs . I could tell I had done it at the end. Knackered.
Picture for some reason attached itself above!
it's good to be back, isn't it
I didn't realise quite how attached I was to this little haven until it went away for a day and a half!
Nettie - I think we all have names for our new hairdos! You are a US marine, I've been telling people I'm going through my GI Jane phase. But now it has got a tad longer, I feel like I look more like a football terraces casual from the mid to late 80s - I just need a Hackett polo shirt and a Pringle jumper 🙂
How is that nasty acid reflux going - getting better I hope?
Susie B - I hope the meeting with the onco and trials nurse went well - I expect that they reassured you that your low moods are normal at this stage, and more importantly, hopefully temporary! Like I said, my own BCN basically said I was a weirdo for NOT feeling down at this stage, so it is clearly something they see a lot of. Hope that you come through it soon, it'll help when you've put the rest of the chemo to bed, I'm sure.
Ah - you've just replied again - tiredness certainly doesn't help our moods! Rest up, missus! And good luck with your haircut. As for wigs off - I never did really get into wig wearing, but was very much wearing a hat at all times. For the last 2 weeks though I haven't bothered with any head covering at all. My hair isn't exactly the most flattering look right now, but it'll do, and I haven't had a single funny look (that I've noticed at least 🙂 ) so it must at least vaguely pass muster....
Rosina - I love your photos, so glad you had a fantastic time hiking on the moor! I like the look of all of it except that tiny little tent 😄 I'm definitely more of a creature of comfort as I've got older, at least when it comes to sleeping and washing arrangements.
Also - forgive me - but I cracked up laughing at your last photo because it totally looks like you've murdered that poor man and stolen his shoes 😄
Oh - and re the Disney Tree of Life - I'm afraid it isn't a real tree - in fact you can go inside it and watch a movie! It is gorgeous though, it is modelled after an African Baobab tree and it has carvings on it of hundreds of different animals:
Sonia - your holiday photos were also fantastic - what a good looking family you all are! So glad you were able to get back into the water now that you are all healed up from rads. I bet it did you the world of good in every respect.
Edinbird - fantastic news all round! Really happy for you that your surgeon was able to give you such positive results, and that you also had a good response from the physio. If that Evening Primrose Oil can get your hot flushes sorted and you adopt the "exercise till you drop" approach that has been suggested, I reckon you'll be sleeping like a baby in no time 🙂 Quite possibly on the pavement half way through a jog! 🙂
MBJ - glad to hear that you aren't getting any trouble from the Zoledronic Acid infusions - very encouraging to hear for those of us who haven't got to that bit yet. and also that you have a few more gigs lined up - you rock star you 🙂
As for me - well - it was an eventful day yesterday to say the least. And the forum was down so I couldn't come on here to tell you all!
First of all my youngest son rang me at work a bit shook up, as he had been out on his driving lesson (only his 5th or 6th one), had stalled the car and got rear ended by a white van man. The instructor has only just got a brand new car, and now it is a tad crumpled! Poor Connor was blaming himself but we've all told him that it wasn't his fault. He's learning with BSM and the car is VERY clearly a learner car, it has the big L plate crest on top and is plastered all over with their livery, so the van driver should have given him a bit more distance, not been so close that he rammed him when he stalled.
Luckily he had his fortnightly counselling session yesterday afternoon, so was able to talk it through with the lovely Liz-the-therapist, who also assured him it wasn't his fault, so that helped him get over it. At least now he has had experience of having a little bump on the road, pulling off to a safe place, swapping insurance details (well his instructor did that bit but he got to see the process), etc.
The big drama came last night though. There I am, sat having my dinner at bout 8ish, and my oldest son bounds into the house, soaking wet as it was pouring with rain out, blabbering something incoherent about a shooter.....
Turns out there is someone about 5 doors down from his house (just a few streets away from mine) shooting a gun into the street from an upstairs window, armed police everywhere, he wasn't allowed back to his house (had been out shopping), so he was worried sick about his housemate Daisy. He didn't have his phone on him and couldn't remember her mobile number (I'm just as bad, I don't know anyone's number any more!). Luckily I'm facebook friends with her so he was able to contact her via my facebook and she was fine, staying well away from the windows, and worrying about their cat who was out and about.
While he was talking to her I counted around 6 or 7 further gun shots. Overall, the shooting lasted about an hour, off and on. It was scary stuff!
Here's the news link about it, you can actually see my son's house near the top of that first photo:
The bloke must have been having some kind of mad moment, sounds like he was trying to commit suicide-by-police as they call it on the telly 😞 He didn't succeed, they took him into custody in one piece. It's usually such a quiet part of town!
After all that adrenaline I couldn't get to sleep. I ended up with 4 teen boys staying the night (well, 2 plus the 2 who live with me 🙂 ) as they didn't want to walk home, and I think the lads stayed up all night talking about how we live in the Bronx now ....
So - yes - that's my news!
Oh and something more mundane, but more relevant to why we are actually here - I just got a call from my onco's secretary to set up an appt for next Thursday, so I expect this is where he will prescribe me hormone tabs and zoledronic acid and the like.....
take care all
Great news Edinbird😊😊😊. Seems as though things are looking up for you finally and you can move onto other elements of treatment. I've read about the C-TRAK but I don't think Yeovil is taking part in the trial.
As for chemo my bloods were ok yesterday so session number 3 of will go ahead tomorrow. I had a lovely chat with the onco yesterday, not my usual one, and she's pretty sure my low mood is down to tiredness😪😪😪😪😪😪😪, which makes sense as I was knackered the day after the photo shoot and tired after driving to the hospital yesterday. She's also completed the referral form for rads which should start around 4 weeks after chemo stops. Going to work on hubby to see if we can go to London for a few days in December now I know it's feasible. Also came back from hospital with a bag if goodies🛍, mouth wash and more stuff for my indigestion and embarrassing belching/burping😶😶😶😲😲.
Just had a walk to my hairdresser to make an appointment to get my hair cut to the same length. Not sure about a short, wavey, 50 shades of grey pixie cut I'm going for but it's got to be better than my current teenage orangutang look😃😃😅😆. At least I might be brave and leave the wigs off when I'm at home.
Lovely photos Implausible, Rosina, Sonia28 and MBJ.
Hope everyone is ok and drop in soon with your news. Take care xxxxx
Horray so nice to be back!
So glad you have had good news Edinbird. You just need to get some good sleep now. As a health visitor if you were a baby I would recommend the pick up put down method 😴. But it probably won't work on you😄. Seriously sleep is something we take for granted until our rhythm is out of sync.
Lovely family and holiday photos girls. I had my second Zoledronic bone infusion on Saturday and have felt fine since. Another gig tonight with the Rockies and one tomorrow. Looking forward to hearing everyone's news. X
Woo hoo! So now I can share my news 😊
Second op was a success it’s all gone yay! 🙌🏻 They only removed four more lymph nodes so I clearly didn’t have many! Although I was told that chemo can shrink them to nothing. One more was cancerous so 3 out of 7. So worth having the operation. And clear margins on the lump too 😁 so I have an appointment with radiotherapy next Thursday.
Had physio too they were pleased I’d referred myself as my armpit is pretty scarred. Been given some more stretches to do which are mostly sitting or lying down! But the oncologist said that the cure for my sleeplessness is more exercise so I need to turn into a mini Rosina and be really active! I’ve delayed going back to work until the end of next week so I can have a few days of exercise and see if I can get some sleep. He finally suggested to me to take Evening Primrose oil so I have that, the capsule is huge 😝 but he also said if my periods aren’t back by next appointment in six weeks he was going to look at the zoledronic acid for me. Seems awfully quick since it’s only four months since I had a period. But if he thinks it’s worth having sign me up. I also signed for the C-TRAK trial, they have changed the criteria but it’s 6 weeks from surgery to sign up. It wasn’t clear if that’s any relevant surgery or the first though. They did get cancerous cells out of me 3 weeks ago so I’m hoping that it counts.
So all very positive and I just need to get to the point where I can fall asleep on my feet!
Hope everyone is ok, Susie you must be ploughing through that chemo now. I don’t know if the criteria for C-TRAK includes still having chemo but you could ask if your hospital is taking part.
Looking forward to seeing how everyone else is doing 😘
Yeah we are up and running 👍
Lovely photos Sonia28.
Goodness knows why I didn’t think to stay an extra night in Totnes, would have avoided that packed train!!!
Currently completed another bit of school planning 🤗 so I am on my laptop and saw that the forum has come back to life ⭐️⭐️⭐️⭐️⭐️
Sooooooo glad we're back. Hated not being able to chat for a while. Will catch up later. xx
Hi ladies, back in the land of signal again for a few days away 😊
I’ve had a lovely time away, beach, kayaking now skin has healed 🎉🎉bbq’s, partying with friends and family and boat time.
Rosina, glad you had a nice time down my end of the country, you were about 1/2 hour from me at Totnes.
Seaside, your holiday looked fab, you look very relaxed.
Nettinoo, hope the gp can sort you out with something, I was given tablets during chemo.
Susie, the nurse I spoke to last week said it was perfectly normal to feel low at this stage, you are dealing with so much and it feels like it’s never ending. I’m sure when you talk to your nurses they might help you out. X
sarah, your weekend sounded good, after not being planned.
Hope the rest of you are all keeping well xx
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.