no hair loss on T for me. It actually started to grow back.
I wore a scarf tied as a wide headband for my trip to London today. I also wore a lovely navy suit bought in the sale last summer specifically for travel. Wore it for the first time today with my dark glasses ( no eyelashes still). Was quite pleased with my ‘look’ Which lasted all day ....until I decided to walk back from Tate Britain to Victoria Train Station where the wind wipped my scarf off my head and I had to chase it along the pavement. It ended up around the ankle of a woman who was about to cross the road at the traffic lights.
This is my silk crinkle scarf 😬 which I love. Anyway, I managed to tie it back on and acted as if nothing had happened 😂.
Kids are back tomorrow.
Next exhibition at Tate Britain is ‘William Blake ‘, plan to get there in September.
Hi Susie B
Left Bundle Branch Block is where there is a blockage in the left ventricle of the heart to do with the electrical impulse that makes our heart beat regularly. So that's probably why I have been having palpitations. May be nothing to worry about but they have to investigate for any possible underlying cause. One thing after another.
Thanks for making me laugh, again🤣🤣🤣. I must admit I did a second take at 'Left bundle branch block'. Makes you wonder what this chemo does to our brains. Sorry the blood they managed to squeeze out of you was no good. Mind you all can think of now is clotted cream☺.
As for hospital appts my hospital have just rung to see if I was ok as I hadn't turned up for my PICC care. It comes to something when I have to inform that that it's tomorrow along with my bloods and onco appt. Shouldn't complain as the unit is fantastic. .
MBJ, you certainly are going through it at the moment. What on earth is Left Bundle Branch Block, if you mind me asking? How Is the monitor attached to you? It all seems never ending. Sending you hugs❤❤❤❤ and hope they can establish what's going on soonest.
Oh Marlyn how awful for you to be treated in such a way especially when your sudden movement was totally involuntary. It's times like that when I'm grateful that my onco insisted on me having a PICC line.
Rosina and Implausible how I miss just being able to pop up to London for the day. Growing up just outside Southampton a family day out there was easy and it my late teens it was easy for me and Paul to meet up when he joined the RAF. We lived in Basingstoke during the 90's but couldn't really go then due to the very welcome but unexpected arrival of our son. Now it's a 2 1/2hr, stop at nearly every station, journey🚄🚄🚉. So when we go to London we stop over for a couple of nights.
Trixielady, looked up Cal Bona as I recognised the name but couldn't remember where from. Now I know, it's the next resort from where we went many years ago on our first really short notice holiday which we booked less than a week before departure. It still seems like a relaxing resort to visit🏖🏖.
Edinbird, I know your surgery is still a couple of days away but I just wanted you to know that I'll be thinking of you. I'm at the hospital tomorrow for bloods, PICC care and oncologist appointment so a busy day ahead. I'm sure Missy will be looking over you. Take care xxx
Sonia28, I hope those teenagers aren't running you ragged during the school holidays.
Before I go can I ask those if you who cold-capped did you continue to lose hair when having T? I was going to leave my '3 different lengths' until after chemo has finished but thinking about getting the short, pixie look before then. My original hair is sticking out all over the place because of the short hair growing beneath it, if you get what I mean.
Hope you're ok Ocean21 and Deano. I think I've mentioned everyone in my recent posts. Apologies if I haven't. Blame chemo brain. Talking of I which turned on the gas ring to heat the water for pasta last night. After a while hubby pointed a ring and asked why it was on. I'd lit the front one on, not the back one with the pan on it. Doh😩😩🤤☹
Sometimes things are so frustrating. Yesterday when I called in to chemotherapy to ask about my bone infusion they told me it was for Tomorrow. Well since I have not had a letter about it I had no idea also I will need bloods done before anyway. So now waiting for a new appointment! We are juggling so many balls at the moment just to make sure we get what we need. Why am I not surprised to read how did the phlebotomist was to you after my hospital experience nothing surprises me. But I have to say today everyone was very good and pleasant.
Oh mbj, I do remember the palpitations on the cruise now, there always seem to be something doesn't there....when you said left bundle branch block ...I actually thought you were talking about physically leaving a block ( in the hospital,...called bundle branch...thought you'd gone all American on us) ...just goes to show how mashed my brain is right now...good job I'm not a brain surgeon!!!
honeslty, you really couldn't make this up...after my traumatic experience with the vampires this morning, I've just this minute had a call from the chemo ward saying my bloods are no good as its clotted....got to have them done again on Thursday.....oh eck!!!!!
Marilyn, I had an awful nurse tale my blood the last time, I was the. Sent to outpatients for them to try, covered on plaster from her attempts, for them to do it first time without stinging and pain.
MJB, hopefully they will get to the bottom of it when you use the monitor. X
Diasy, I have one eyebrow growing back better than the other, we were just talking about it this morning.
I have a slight sore patch under my arm from radiotherapy so no swimming atm, big hat for the beach as my umbrella kept blowing away.
Ill catch up properly as read up now As we are out and about but getting car sick writing 🤢
Yes I had palpitations when I was on the cruise so went to surgery when I got back my ECG showed some issues so I was referred to Cardiology clinic where I was seen this morning. My ECG shows Left Bundle Branch Block, and because of my symptoms he wants to check me out for Atrial fibrillation too. I have to wear it for a month and go back every week to change the battery and get checked out. I am really getting my money's worth out of the NHS this year that's for sure. I also have to have an Echo which I was told is more difficult to do with an implant, something about the sound waves not getting through.
I would love to know what being normal feels like!
heart monitor? I'm sorry if you've already mentioned it ( hopelessly lost in everyone's matters) but do you have heart issues? I'm due an echo soon ( apparently before herceptin nos 7) x
daisy, lol, well done on taking your first anastrozole, when I took my first one I literally sat through coronation street waiting for something to happen! ( not on Corrie...me) my only noticeable side effect ( but of course it may be herceptin) is really achy lower back, hips, elbows and hands...the elbows and hand aches wear off as the day goes by but the hips and lower back pretty much ache the whole time, the onco suggested stopping the anastrozole to see if it got better and if it did to go on another pill ( letrozole) but iv decided to stick with it as its manageable ( for now) will be interesting to see how you get on x
iv had a horrible time getting bloods done today, I went yesterday but they couldn't get any and was told to come back today....so in I go....but when she put the needle in she hit a nerve and my arm did an involuntary tic...she went nuts at me...telling me i mustn't jerk my hand away as it's very dangerous!!! I tried telling her she hit a nerve and it was totally involuntary..i didn't have a choice in the matter but she wasn't having it! She went all school teacher on me ( sorry Rosina) and told me I must never do this when having bloods done, to which I replied...I know! Iv been getting bloods done on a regular basis since Feb and this is the first time anyone has hit a nerve....a supervisor had to come in...she failed too ( twice) in the end she got a wee scrap out of my hand...just hope it's enough...
before i I sign off, implausible...your family sound a bit like mine...when I was 14 my sister casually mentioned our half brothers....I did a cartoon double take...say what?? So off I run downstairs to ask mum and all she said was....oh it's all water under the bridge.....turned out my dad was married before , with two sons....totally blew me away that did....can only imagine there's some dark secrets lurking there somewhere but it's too late to go digging now...
love you all.....now going to nurse my wounds from those horrible vampires....Barry eck....xxxxx
Well the saga continues. Just been seen in cardiology I have been diagnosed with Left Bundle Branch Block! I have to wear a monitor for a month just had it fitted to rule out any Atrial fibrillation as well. Gosh things just keep on getting more and more complicated. Hopefully it will all be ok, I also have to have an Echo scan on my heart.
Hope the Anastrazole doesn't result in too many side affects, although none would be great. 2 rollercoaster rides🎢🎢😲, one's enough for me. Good news on the eyebrow front. Unfortunately I'll be losing mine soon🤤☹. They got thin after FEC but have since grown back only to be lost again. Thank goodness for the LGFB session. xxxx
Morning! Just thought I'd share that I have just taken my first Anastrazole so I am on 2 rollercoasters at the moment! Hope everyone has a good day x
PS my eyebrows are growing back really bushy, or at least one of them is
“And I thoroughly recommend the "jump on a train to London on your own" thing. I've had a great day today (even if I am now utterly shattered “)
Thanks for this Implausible,got back from early morning radiotherapy (8.30 strike 11 , 9 to go) and could have pootled around. Instead I am typing this from the train going to London to see the Van Gogh exhibition at the Tate ( Making use of my membership, it is very good value what with the magazine that comes out every season, have recouped my joining fee with this visit).
Decided to go into my classroom yesterday- the place is being redecorated and is like a bomb site). Did a bit of a cupboard sort and discovered all sorts of bizarre items in the class cupboard ( 3 boxes of Lego trading cards anyone?). Also fake money that had fallen out of containers, so there I was counting plastic 🤪 enough. Went home boss eyed. The good thing was I found my waterproof trousers ( need them for my camping trip).
Re. My current reading it’s excellent. I wanted to read it in my classroom yesterday and stuff the sorting 😬
Now to read other posts. 🌸
Wow wow Implausible your definitely fabulous wish i was even a titchy bit like you, what a wonderful day you had. I hate going anywhere by myself although i have done but at the moment I think my get up and go has gone!! Loved the photos.
We're off to Majorca Cal Bona in a couple of weeks ( fingers crossed)
Its so sad how your parents didn't tell you about your brother they obviously had there reasons. I've always been very lucky our family have always been very open with each other and thats hopefully the way it will continue. xx
Evening, just popping in to say "Hello". Had 8 rads now, 12 to go! Just had my dinner so not got the energy to reply to everyone but nice to see people getting back to their lives, holidays etc. Will try to reply properly when I can. Speak to you all later xxxx Think I might start the Anastrazole tomorrow. EEEEEK!
My nap turned out to be a 2 hour long sleep!
In the meantime you lovelies have done your best to reassure me about the holiday and I really appreciate it. 💕 What would I do without you?
I am going to email my new boss (who I haven't met yet) and let her know my intentions. That way I can go away without worrying.
The pictures are amazing you are really lucky to be able to get to London and back in a day.
Yes the Lymphodema service has been very good here, I have been seen and measured at least four times now. She was really happy with my measurements today so I think the exercises must be doing me good. As for the Mico surgery there is a consultant in Neath Port Talbot hospital doing clinical research on lymphodema. The surgery joins the lymph system to the venous system there by allowing the lymph to drain into the blood supply. As I have not had cellulitis I do not fit the criteria for referal. But to be honest since doing more exercise I do feel a lot more comfortable anyway, a few weeks ago I was worried about it. So hopefully I can keep it under control.
Yes we are looking forward to our train journey I am sure there will be lots of photos.
Have a restful night you need it I am sure.
Right ladies, repeat after me, 'After the c**p year we've all had and indeed still enduring we all deserve a holiday whether it's just for a few days or a couple of weeks. We will not feel guilty for going and we will have a Barrying good time'.
As an aside my husband isn't as keen on Iceland as I am and he hates the food, but he knows I've wanted to see the Northern Lights for years, that's why he suggested it. I've always put off going in case we go but don't see the show🌌🌌🌌🌌. This time I thought b*****r it forget the 'what if?' This break is for me and I'm not going to feel guilty in the least. I love my husband to bits💞💕💘💘 honest.
Love you all xxxxx
Hi you lot, I'm now on the train back home. Going to bore you witn lots of photos from the Kubrick exhibition which you probably have minimal interest in. Sorry!
Quick catch up first though,
Rosina, I am definitely going to read that book. My brother spent 1965 and 66 in Great Ormond Street undergoing - unfortunately unsuccessful - treatment for leukaemia- he was only 6 when he died (before I was born). So that section would be particularly interesting to me.
Nettie... looking forward to hearing your "cracker" of a story. Must have been such a shock to you to discover something so important so late!
In a similar ish vein, the brother I mentioned above? I had no idea he had ever existed until I was about 12 when my sister told me about him in a whisper. I wasn't allowed to let my parents know that I knew, and there wasn't a single photo of him in the house and he was never mentioned. Isn't that weird!! British stuff upper lip gone mad
And I thoroughly recommend the "jump on a train to London on your own" thing. I've had a great day today (even if I am now utterly shattered )
Edinbird, that is a pain about the trial :/ hopefully the docs will be monitoring you a little more than standard anyway though because of your triple negative thing? It is in their interest as well as ours to keep a close eye on us because if anything does come back it is a lot easier (ie cheaper!!) for them to sort it if they catch it early....
Sleepy Seaside, hope you enjoyed your nap and as I said earlier, and everyone seems to agree wholeheartedly, get yourself to Florida, missus it will do you the world of good! And as you said, you couldn't be at work at the moment even if you desperately wanted to be, given it is the summer hols....
The Oskar spraypaint thing was just a coincidence, but it did make me smile. Even spelt with a k.
Susie ... I still don't have a will, and to be honest I'm not planning on writing one. I sorted out both my mum's inheritance (with will) and my dad's (no will). My dad's was SO much easier! And cheaper, as I didn't need a solicitor. As I'm leaving everything to my 3 sons anyway, who would be the default inheritors, it will actually be more straightforward for them if I don't have a will. Daft isn't it.
You need one though if you want to do anything different to the default....
Glad to hear that Iceland is booked. Woohoo!!!
MBJ what is micro surgery?
You seem to be being monitored well at your hospital, even if they aren't very good at telling you when your appts are I still haven't had any scans, and nobody has measured my arm either....
I must have missed that you are going for a trip on the Northern Belle. How exciting! I've seen photos from when a friend went on ot not long back. It is super fancy Where are you travelling to on it?
Trixielady, glad to hear you have a holiday to look forward to aswell. Where are you going?
Right then, time for London pics:
Good news about the lymphodeama measurements. Shame about the micro surgery, as you say prevention would be better and possibly cheaper in the long run. Hope the cardiology appt goes ok. The Northern Belle train trip sounds interesting and something brilliant to do after the tests you'll have had by then. xxx
Seaside try and not get upset and anxious. You are obviously a lovely, very conscientious person. As others have said a trip to convalesce and get over the trauma of the last few months is how you need to be looking at this. Not a holiday at all in the usual sense of the word. You need to do this to aid recovery and it is very different to working which you will definitely not be up to yet. It would have to be a very hard hearted employer who wouldn’t understand that. Xx
Hope your appointment goes OK tomorrow and you also enjoy your Northern Belle train trip xx
I've got a heart scan and bone scan but haven't heard about another mammogram yet but it will probably be in September, October as i was actually diagnosed 9 October xx so keeping fingers crossed because I'm not missing another holiday. Xx
Hi Seaside sar
Holidays, well i was feeling actually the same but after having to cancel our December holiday last year it was the only thing keeping me going looking forward to having a relaxing holiday this year, I stressed and stressed about it but I know I'm not really fit enough to return to work this year anyway plus still to have surgery later in the year, it just felt so wrong going on holiday whilst on the sick!! but I rang macmilllam, spoke to my oncologist and also had a meeting with my Boss and my mam told her i needed a holiday and she totally agreed but i still feel really uncomfortable about it but we've booked and decided not to fly to far just in case, I got my insurance with the post office, so my case is down but unfortunately energy levels are low but i have 2 weeks to pack. We've had a terrible time so why barry not life is for living go and enjoy girl because we don't know what is around the corner xx
Just popping on quickly to reassure our lovely Seaside Sar.... there was a lady at my work who had 2 YEARS off sick with vertigo (on full pay, hence my big sulk when they would only give me 8 weeks!!)
I am friends with her on facebook and in that 2 year period she had at LEAST 8 overseas holidays. Might even have been more. Work didn't seem to care a jot.
(In other words.....go to Florida!!!!)
Well my lymphodema apt went well she was happy with my measurements, so that's good. I asked about micro surgery as we have one of the only centres here in the UK that perform it. Although I fit the criteria (all research based for funding) e.g. healthy??, normal BMI etc etc as I have not had an episode of cellulitis I can not be referred. Talk about prevention better than cure!.
She also suggested I follow up my mamogram and my bone watsit.
My mamogram will be in October. When I went to the chemo department and asked about the bone infusion I was told mine was for this Wednesday? I have not had a letter about this and also I would need bloods done before anyway. I said I did not want it on Wednesday as on Friday we are off on our Northern Belle train trip and I do not want any sideffects to ruin that. So I will have an apt in about two weeks. We need eyes in the back of our heads.
Tomorrow it's cardiology clinic at 11am, let's hope that goes ok.
Also Sar, years ago people would have gone somewhere to convalesce after having a serious illness and nobody would have thought anything of it, it would have been expected. I'm pretty sure some of the ladies from my Oct'17 group had holidays before they returned to work.
I can understand your anxiety though and you don't want to go away and worry all the time you're there. Is there someone at work you could talk this through with and explain that your husband wants to take you away to recover a bit more before your fit to return to work? xx
Thanks Marlyn and Susie. I totally agree life's too short and I shouldn't be hesitating. I'm actually almost in tears here - didn't realise how much it's been upsetting me. I've just got it into my head that it might cause me trouble at work. It doesn't take a lot to bring out my anxiety at the moment.
Thank you for your thoughts and advice xxxx
Susie and Edinburd, as you say the stats are now at least 10 years out of date and treatment has improved during that time and they also don't take into account other things such as a person's health before they got bc xx
Seaside Sar, get that flight booked NOW✈! Being well enough to travel and well enough to work are completely different . When I was working on Sickness Benefits many claimants would go away to help them get well again, often on doctors' orders. So pack your bags and go. When we flew to Florida there was plenty of room to walk around the plane. If you're flying from Heathrow get a Daffodil lanyard which is what I did when we went to France and intend to use again. More on that in a bit. It'll show you have an unseen disability and I'm sure the cabin crew will be happy ensure you have the opportunity to exercise. I think other airports may run this scheme. As Marlyn says 'Life's too short. so start packing.
Edinbird, beautiful photo of you prior to your evening out. Sorry the Frank Skinner thing brought home our situation. As you say it's Barrying💩💩💩. I'm trying to be positive and look at things the same way as Jencat in that 70% of people don't get a recurrence. To be honest I'm not there yet and still being more negative than positive but I've only had a few weeks to get my head around the fact that I'm tnbc. Perhaps that will change as time goes by. I also try to remember that these stats are based on people who received treatment over 10 years ago and many things have changed during that time. As for your trial check with your oncologist as he will have all the relevant criteria/ information.
Implausible loving the artwork. As for doing things we keep putting off my husband did mention yet again that we should really sort out our wills. We've put it off for 40 years. He did have a basic one years ago through the forces as he was going somewhere dodgy but that was only a temporary thing. We need to sort it as we go away a lot now and you never know what could happen. We both need to know our son will get everything.
Nettienoo, I'm continuing with chemo CT since my surgery and having my 2nd of 4 rounds this Friday so long as my bloods are ok when I see my onco on Wednesday. Bloods and appointment are within an hour of each other.
MBJ, I've also forgotten what it's like to just get on with life the same as before all this c**p. Making plans for years ahead went out the window the day of diagnosis.
Anyway, as for future planning, and we're back to the Daffodil lanyard, I've booked a 4 night trip in March to Iceland. Fingers crossed🤞🤞🤞 we'll see the Northern Lights🌌🌌🌌. Since we couldn't go to Greece this year I've used that money to go to Iceland instead.
Right must go now. Will catch up with more of you later. Loads of chat as normal. xxxx
Nettienoo, you won't believe this, but until I got married I lived in Highfield Road in Dartford and Summerhill Road is the road behind it! About a minute walk away! My friend lived there for many years.
I know Shepherds Lane very well! My Dad's maisonette is a few minutes away in the car.
The girls grammar school is in Shepherds Lane and the boys is around the corner-I assume they're the ones your parents went to? The girls school looks a bit like a castle and I doubt if it's changed much during the years-next time I'm in Dartford I will try and remember to ask my daughter to take some photos of the schools and put them on here for you to see
The boys school has had an extension built called the Mick Jagger Centre because him and I think it might have been Keith Richards, went to school there!
I've know of Powdermill Lane, but can't place where it is, but would probably recognise it if I see it. As you say, what a small world! xx
Right, seaside....this is how I look at it...feelings of guilt shouldn't be coming into play whatsoever, ponder back on everything you have been through.....it's been pretty brutal right? One great big statement that keeps coming to mind is " life is too short" and it Barry well is! We more than most have had this lesson slapping us in the face....
And another great big thing is we're talking your daughter here....seeing her....catching up on her life..reconnecting with your family...work doesn't and shouldn't even be having a factor in this....
Soooooo, as long as your feeling well, and your health care peeps are giving you the green light I say ( for what it's worth ) blimmin go for it!!! What the actual Barry are you waiting for??? Xxx
Quick catch up as I'm feeling very sleepy!
Marlyn, you need to surround yourself with nice people and ignore those who bring you down. Shame it has to be a family member but sounds like you'll get more comfort from your friends right now. Families hey?
Edinbird, lovely photo of you and glad you had a good night. Pity about the trial, another worry you don't need. Hope you have a good last day at work.
Sarah, your nails are similar to mine. Hubby commented on my 'nicotine' fingers yesterday when I took the polish off. All freshly repainted now to hide the dirty stains. Enjoy your day out today. Good to see Oskar's name in print already!
Rosina, I think you've hit the nail on the head about booking in lots of treats. This treatment has affected us physically as well as emotionally so we deserve some nice things to help us with our recovery.
Nettie, I know what you mean about being anxious to be away from home. I guess it's because we have now got a built in fear 'what if something goes wrong?' Hopefully you'll enjoy your time away and wonder why you were nervous. This barry bc does its best to throw all sorts of spanners in the works.
Well I've got a little dilemna of my own. My other half is very keen to take me to Florida next week to see our daughter before she finishes her summer placement in Disney. My radiologist has given his approval as long as I wear factor 50, cover up and keep moving around on the long plane journey. Trouble is, I feel bad because I'm signed off work so I don't feel I can justify a trip to Florida. As it happens, I couldn't return to work properly at the moment as it's the summer holiday but I still have this overwhelming sense of guilt. Any advice?
Off to take a nap.
Edinbird, wanted to swing by to give you a big hug...you got a bit on your plate this week.....and to find out you may not meeting that criteria.....disappointed must be an understatement! I'm hoping your onco can put your mind at rest.
Thanks for the compliments guys 😊 it’s not red lipstick at all though! It’s the coral/peachy colour I got at my Look Good session. I don’t tend to wear red I normally wear bright pink or light pink.
Just heard on one of my groups that the criteria is changing for the main trial I want to go on and you won’t be accepted if you’ve finished chemo? So that might be out for me and I was really relying on it as a means to keep being monitored 😬
Jencat ps....my mum and dad went to Grammar schools in Dartford. Do you know if they still exist? X
Wow! Small world I used to have lots of family in the Dartford area but most have either passed away or moved elsewhere now. My older brother was born at the Livingstone hospital in 1953. My dad’s family lived on Summerhill Road in Dartford. I had relations living in Shepherds Lane. My mum was born in a house on Powdermill Lane, I think. (Just in case you know any of these places. In later years my Nanna lived in Common Lane, Wilmington. I used to love staying there. Lots of children around to play with, the common at the bottom of the road and a sweetshop at the top. Lots of lovely memories. My mum never lost her Dartford accent even though she left there in the 1950’s. Xx
Nettienoo, I was born in Dartford! At the Livingstone Hospital-it's for elderly people now though. I lived in Dartford until I got married, but my mum and dad lived there all their lives and a lot of my family still do x
Implausible, the news about how old the stats are makes perfect sense and is very welcome! 🙌🏻. If there are good pubs around my son’s place, he will be very happy. Although he won’t have as much spare cash to spend on alcohol when he has a mortgage to pay will he? I can’t wait until I can jump in a train to London on my own like I used to. I’m trying to remember what the last thing I went to was. Possibly the Amy Winehouse exhibition that her family put on at the Jewish Museum. I’ve missed out on some good things so far this year but I will be making up for lost time. My mum, dad (although not biological father as I found out at 21, I’ll save that story for another time, it’s a cracker!!!) and older brother were all born in Dartford, very near Orpington. I was born near Tonbridge though.
Which lovely ladies in our group are still having chemo? Daisydi? SusieB? I’m wracking my brains here but there aren’t many functioning brain cells left at the moment. I do hope that situation improves when the FEC finally Barrys off or I won’t be safe to be out. X
you do rock a red lip 😀
If I had your thinking I may not even step outside the house, correction get out of bed !!!
Flip the thinking, did you see Implausible’s graffiti motto ‘ Worrying is a waste of imagination ‘ ?
I highly recommend meditation.
Book in lots of nice treats for yourself.
On Saturday evening after my gardening stint, I enjoyed a bath and put a face mask on x2 just for the hell of it .
Marlyn , rant all you want. I also thought it would be nice to have a sister, so there you go.
I used to have a colleague at work who introduced me to a great phrase ( we have lots of crazy directives that want us to ‘ jump through hoops ‘ )
it was ‘ another one for your Fxxxit bucket ‘. So I mentally dump things there 🤪
Nettinoo hope you are feeling stronger. Yes, I can empathise with the anxiety bit . I was worrying about driving long distances until recently I got lost driving back home ( sort of as a test chose to go another way for the he’ll of it , confused the satnav - ) got back home eventually but an hour later. Wasn’t that bad and now I don’t care about that either.
I am now in the early 60s with early chemotherapy trials for children with leukaemia see quotes in photo 1 .
Chin up everyone 🤩
I'm sat on a train to big London town, giving myself a day off the craft room makeover and going to see the Stanley Kubrick exhibition at the Design Centre. I've been excited about this one ever since they first announced it.
There are lots of VERY LOUD and ANNOYING children on the train seeing as it is the summer hols. When did I get so intolerant of kiddie noise? I used to be quite happy to hear them and able to tune them out enough to read a book. I guess that was when I had kids that age myself, I'm out of practice!
Going to try to catch up with you all before I hit Paddington, if I can concentrate above all the screeching
MBJ, your doggo is absolutely gorgeous! I can't wait till I retire as then I'll be able to get a dog. Not fair for me to have one now as I'm out of the house too much.
Marlyn.... well you know you'll get sympathy from me on the unhelpful sister front!!! The old adage is true, you can choose your friends, but not your family....
I'm so used to my family dynamic with my sister being a little odd though, that I guess it hasn't seemed any more so since the breast cancer hit.
My disappointment has been more with my two oldest sons (both in their late 20s). Neither is contacting me any more than they used to (and the baseline is pretty much hardly ever). And neither has asked me how I'm getting on with treatment etc, and when I mention it first they seem fairly disinterested! Maybe they are trying to pretend it isn't happening, I do get that, but it comes across to me like they don't care.... even though I know they do. Ah well.
I suspect it is a similar thing with your sister, she is scared for you (and possibly for herself!! Family history and all that) and it is easier to brush it under the carpet....
Different people react to the whole cancer thing in different ways. I noticed that my facebook friend count went down overnight by 15 or so the day I came clean about my diagnosis. I think people still find the very thought so scary that they just don't want any reminder that it even exists.... which is ironic really as BC overall has a better "cure" rate than some other illnesses that people don't get quite so hysterical about...it is that whole emotional response....
Edinbird, looking very glam at the Fringe last night!
Susie- I wonder if the lack of empathy thing is more common with blokes (your brother, my sons), as they see it as a "ladies" disease maybe? Although that doesn't explain Marlyn's sis!
And yes I know we still have a lot of treatment still to come, plus worries about it coming back etc, but I still reckon we will all have a much better 2020 than we have in 2019! This has been/ still is a tough old year!!! I already feel a hundred times better now that the chemo is (largely) out of my system. Although I did notice when I finally took off my black nail varnish this morning, that my nails are all discoloured, as a few of you have mentioned before. It is kind of manky looking, like I'm a chain smoker! Must redo the nail varnish tomorrow
Trixielady good to hear that the tick bite and wasp sting (double whammy!!) are on the mend. Hope Trixie wasn't too scared by the storm.
Edinbird glad to hear that the Frank Skinner show was good, albeit sweaty, and a few jokes hitting a little close to home. It is weird how things suddenly make you stop and think like a bolt to the head.
I am not so much *worried* about recurrence, as I'm a statistician by trade and I respect the odds. If they are in my favour then I won't worry about something till it happens. But I have definitely found that I'm much more aware of my mortality than I used to be. I have started to plan my funeral and make notes about the best places to sell off my books and other stuff if I die... daft stuff like that. Not something I ever thought about doing before. And hopefully still a bit premature! Oddly the thought doesn't upset me as such (probably because those odds still are in my favour!), I'm just in kind of practical mode with it all.
Maybe that's just my own way of dealing with the worries.... address them practically rather than letting them upset me? The human brain is very good at compartmentalising.
Enjoy your last day at work. It is odd isn't it being in and out of work. I'll be glad when I'm finally back for good after my October op, and can get back into the office routine properly.
Jencat glad that you have found counselling useful since coming to the end of active treatment. I am a huge fan of talking therapy, and am planning to treat myself to a few sessions next year. In the meantime I'm booked on a 6 week course at Maggies starting in September that is all about coming to terms with the "new normal" and moving forward after treatment.... should hopefully be helpful.
Nettienoo - even more so than the stats being based on recurrence rates "now", my onco reminded me that actually they are even older. The 10 year recurrence stats are based on women who had their treatment at least 11 years ago, and they are improving that treatment all the time..... so all the stats really need to be viewed as a "worst case scenario"....
Oooh I know the street where your son's flat is, in the Old Market area. Very nice!!! Well nice from my point of view as there are some great pubs there and good street art too
I get where you are coming from with travel nerves. I was like that for a few months but I seem to have got past that now. I think because I was feeling so feeble I didn't want to go anywhere on my own as if anything bad happened I wouldn't be up to running away! The brain is daft sometimes.
I'll leave you with some photos from yesterday, went for a nice long walk along the river near Reading and also saw some new street art in the open air gallery under the M32.... it was cool to see that someone has spray painted baby Oskar's name at the top of a couple of the walls!
Take care all
PS I am an Essex girl, but my aunties were in Kent, in Petts Wood (near Orpington)
Edinbird, you looked gorgeous on your night out. I wish I could wear a red lip without looking like “mutton dressed as lamb”😂 . You’ve got a lot happening in the next few weeks so you are bound to be feeling worried/anxious/bit down but you are doing amazingly well considering all the sh*t going down. What you must remember is that every single week new discoveries are being made in the cancer field. What you are looking at are percentages for likely reoccurrence now but these change and improve all the time with new discoveries for treatment etc. All these trials going on just show how much time and effort is being put into the research. I think we all have a tendency to google stuff and take it as gospel too and a lot of the info is already out of date due to research going on.
Marlyn, your sister sounds very like my mother in law. To be honest, we have never got on in the 38 years I’ve known her. She is one of these people who wants to be centre of attention ALL the time and hates anyone taking attention off her. This has been evident so many times over the years. She has zero empathy herself but expects it from others. Some of the little comments she has made in the very few times (I avoid her as much as possible even though she lives locally) I have been in her company during the whole bc treatment time have floored me completely. I’m a great believer in Karma though. Her attitude will come back and bite her on the bum one day. Do you reckon your sister may be a bit jealous of the extra attention you have had recently?
Trixielady, was Trixie ok after the thunder and lightening? Poor love. I dread storms coming with my two.
MBJ loved the photos what a good looking lot and little Alfie....what a beaut.
Imp, how lovely to welcome a new little man into the family, we need to see a pic of you with him soon though. Huge pat on the back for getting back to swimming etc and the weight loss. 🙌🏻. My son is buying a duplex apt in a converted old brewery. I think the address is Lawford Street? It looks lovely. He is currently surveying in the Gulf of Mexico and won’t be back in UK until the end of August but will hopefully get the keys soon after he returns.
What has everyone else got going on this week? I know there are still rads, ops etc but not exactly sure where everyone is up to at the moment.
Nick and I (and doggies) are taking the caravan to Kent next Monday for a week. We might go somewhere else for a few days after that but not sure where. I was actually born in Kent although grew up in Cheshire. I scattered my mum’s ashes in a river running through the village of Eynsford two years ago and I feel the need to go and see her! We are staying on a site near Tonbridge which is fairly central so hope to do a bit of sightseeing (if I can get some strength back in my legs). It will be the first time away from Staffordshire since treatment so feel a tad nervous. Not sure why really. Anyone else felt like that?
Love you all my dear friends. Thanks for getting me through so far. Xxxx
I haven't got a sister Marlyn and had often thought it must be nice to have one, but I've come to realise that even if you have, friends can be more supportive sometimes xxx
Morning Edinburd, just wanted to let you know I'm thinking of you. It is horrible having this fear of recurrence looming over us. I'm TN like you. When I was having radiotherapy I was told it gave me a two-thirds chance of the cancer not returning, which are the same stats as you really, but put that way it sounded a lot better! I finished my radiotherapy last June and have had some counselling since, which has helped.
I hope your last day of work goes well and also your op on Wednesday x
Good luck today for your last day for a while. Take it day by day, just cope with what you have to get through next. I know dealing and living with it all is c..p and I look at other women and wonder what it was like to live without the pit of fear all the time as I can't remember. But we are all here together in this so on to your next stage of treatment and no looking back or too far forward. Blimey I am the worst person to give advice on living in the moment little Miss Worrier that's me.xx
Morning all xx just about to get up for my last day of work for however long... quite tired from last night but when am I not?! A sleeping pill and a Nytol together seems to be the way to go but I can’t take any more after tonight so I’m clear for the anaesthetic. Boo.
The show was good but absolutely roasting inside I was dripping with sweat. Frank Skinner told a few jokes about his age and I just sat there feeling a bit sick thinking I’m not going to get to 62 - I can’t even think beyond 45 with the stats the way they are and my crap response to chemo 😢 I know percentage wise more survive than don’t but a 30% chance of recurrence is Barry. Extremely Barry.
Anyway, last chance to actually influence my new job today then going to our friend’s gig this evening. Gonna be busy so speak to you all later xx big hugs for any rads or pills or infusions going on this week 🤗