Breast Cancer Now Forum

Yep, I'm back. Hope your trip is OK.. camping???? Brave woman! Hope you get better weather than we have Been a week of hospitals. Bloods Monday,  treatment Tuesday,  onc Wednesday.  We changed chemo 5 weeks ago. Scan result yesterday from 6 weeks ago showed that previous chemo was not only toxic, but not working. Have progression in liver and lungs. 🤨🤦‍ ♀️ not huge, but is there a sweary bench in here somewhere?  Then to end my perfect day by the time I went to bed I had cellulitis in lymph arm! Just as well I had emergency antibiotics in the cupboard... Having lunch with an old colleague today, so that'll be good.   Enjoy your jaunts...white gloves are great, and cheap online. Avoid Boots ones, they're really short  ... View more

So the receptionist qualified to give out results like that????  WTF? Well done with the shower! Definitely celebrate! I'm on holibobs in Northumberland, and met Janice for coffee who was travelling with us 11 years ago... Weather sunny one day, cold the next! Today it's 🌞   GD and her parents joined us for the weekend.  Inthe last 10 days they've seen a house they like, put theirs on the market,  sold their house and had offer accepted on the one they wanted!! Apparently without chains either side too....amazing! GD was in floods of tears a couple of days ago, missing us, so we'll pop down on Friday with a bottle of bubbly. Hair came out in handfuls last week till I looked like a mangy cat/rabbit. OH did a no2 on what was left and I got the wig and scarves out.,.. Hope you haven't melted in the heat. The fridge in the caravan wasn't working,  but it's been repaired now. I got one for the shed,  it's full of assorted ice creams... ... View more

Hooray for the house!  And the fine refund! and the passports! I'm doing well on the new chemo, less exhausted and no pain, just the usual mouth issues one can get (including the rotting taste from thrush!) However,  move over on the grumpy bench.  There's a Liam Gallagher concert in the village tonight and a group up have parked/camped in the station car park (behind our fence) and are having a blast! loudly, drunkenly, hysterically and sundry other adjectives!  I have asked them to keep it down... they apologised and it got worse!  Peaceful afternoon reading just flown out of the window!!!!  I hope they go to the actual concert and we get some peace, but it'll be noisy when they stagger back!!!! Some towns near us provide free blue badge parking and others don't.  Guess which I prefer?!?!?!! ... View more

Oh thank you!  Merkin was definitely in the name - I had to look it up all those years ago!!!!  Broadened my education! I wonder if there are any sleep fairies still lurking?  I saw Tom Cruise on the Jubilee programme and couldn't believe that he's 59.  He seemed so nice too, I'll have him as my personal waiter!  Maybe you and Katy could rehearse a bit more before we invite you to perform??? Such a pain ab out the Blue Badge, but so good you could save him the diminishment of answering all those questions.  Hope you do OK Grumpy! I've abandoned notions of the cold cap, and just going to put my big girl knickers on and go bald again.  I really hated it last time, but I'm going to have to "get my head round it"! (sorry) Just to give me a sense of perspective, we have a friend staying for a couple of nights.  He and his wife were in Heathrow last month to fly to America to see son and family when his wife dropped to the floor, and that was that!  Her heart stopped.  She had been so concerned about me, but... So, hair or no hair, I am alive and still doing stuff.....   And planning to run Tom Cruise ragged!  Thanks for the comfy seat!   ... View more

Grand children are great, but SO exhausting!!!  Our GD arrives in about 10 days time, but just for 3 night.. The chat with the trial dr was good.  I've given permission for my existing biopsy samples to be genetically profiled.  It is POSSIBLE that the information will provide guidance as to the best chemo options for me now.  It will also give them information if a trial drug comes up that might be beneficial.  BUT, as they only want you on the trial drug (not both) that would not be a realistic line of action until I'm out of options and basically palliative - then I've nothing to lose (except energy, but they'll do taxi door to door).  So, on the shelf for now... Scan this week.  New chemo next week.  I've been stressing about cold cap and hair loss but had a very useful conversation this morning with other secondary ladies, where one gave me a good reason NOT to use the cold cap... and I felt a huge sense of relief, so I think that's a decision.  Wig/bandanas etc here we come again.  Not sure what to tell GD though....!!!! Enjoying the warm weather and the garden... my OH would like me to get off the CBA bench and help though!   ... View more

Hurrah for the blue tits!  Pleased Sooty is still OK (and you survived the adventure too!) Cars are SO expensive (and roofs!) Hope your new meds work Grumpy.  I generally don't read the list of side effects unless I get one.... chemo being the exception! SO... been a fun week! Went in to hospital Tuesday morning (having self isolated for 3 days and nil by mouth that morning) to be told by the consultant that the ultrasound he did showed there wasn't enough fluid in my lung to do the procedure safely.  The small amount of fluid shouldn't be making me breathless (I am ) or giving me a cough (it does). 🤦‍ ♀️   So I came home.... Got my SBC nurse to chase CT scan date, so that's next week.  It sounded like new chemo will be whenever... so I pointed out that I was more symptomatic (I am actually aware of a rib and my good boob) so treatment starts a week on Monday... This was all the same day.... will lose my hair unless cold cap works (know nothing about how that all fits in) and discovered that I can't continue to dye my hair whilst receiving cooling treatment... Then, in the afternoon, I got a call from London asking if I would be willing to have a conversation about a trial drug on Friday (today).  It's a video call, and at this stage it just involves getting a sample of the lump (presumably breast) and doing molecular profiling!  ie see if my DNA has the markers this particular drug targets.  It's part of a new series of drugs trying to boost the body's natural immune system (a friend who is a research scientist tells me)...  The first stage is fine.  If I then have to go to London for ALL my treatment (regular chemo etc) then that could be too onerous....  we'll see what they say...  hope you all have a good weekend - forecast is reasonable here... grateful for the cakes in the shed.... ... View more

Oh yuckety yuk yuk!  What a mess!  Hope Pij survives..  (he IS called Pij isn't he?) Just had a call from the oncologist changing the time of my appointment tomorrow, but very clear he needed to see me about the side effects, and consider changing treatments.  As far as I can gather, all the others are infusions not tablets and the hair is likely to wander again.  I minded that so much last time, but as my toes are going purple, I guess it's hair or feet.... not much of a choice! ... View more

Got home in one piece...yukky toe still yucky and possibly still infected,  so I sent an e-consult request to be seen.  Got a text to say Dr would contact me Thursday next week!!!!  Had to go to hospital for bloods, so I asked BCN to look at it. She cleaned it, arranged antibiotics and agreed with me that it needed seeing today...bless her.  Not impressed with GP who keeps saying to me just to contact them if I need anything.... Anyway, I've restocked the shed with yummy Stroop waffles.....and put bunches of tulips in there if you want some. Hope birthday goes well and so pleased the CBD oil works.....there is cannabis chocolate from Amsterdam in the shed too...   ... View more

I replied to the meeses....but the gremlins stole it! We walked from 10-4 yesterday,  slowly with sits on Rolo. I probably inhaled at least one dose of cannabis smoke just walking along, and found you cn buy it in bars of chocolate!!!!  None in the shed I'm afraid. But there are poffertjes,  Dutch mini pancakes, which are delicious.   Tulips duly planted.  Did too much yesterday really and my body is protesting today...duvet day I think.... Hope trips go well.  We're travelling home tomorrow  ... View more

We lost! To a 5 Yr old!!! Shopping trolley sounds great...eyes positive news.. t'achemo affects mine. My feet are falling apart  - t'achemo burns its way out of hands and feet, looking for scar tissue as an easy option.  I have scars inside of both heels, and one of them has split.  Toe is better but still oozing, so we put a dressing back on.   OH pushed me round a massive garden full of tulips and other bulbs and shrubs. The sun was shining and the tulips iridescent.  Fabulous.  A gentle trundle round the town centre this morning...funeral of a dear friend this afternoon which we will join by zoom...amazing parade of flowers tomorrow. Holland is great!  Mayo comes with the chips!  Sticky spare ribs in shed.... ... View more

Mind that biiiiiikkke!!!!!!!!  Oops!  Too late! Latest adventure was A&E last night...toe nail was lifting, having gone purple at the base,,,,yesterday it was sore so I took my sock off to check...it was wet... toe wet... abscess in nail bed, which had fortunately burst.  Antibiotics and padded toe...shoes are optional,  aren't they??? Sitting on the comfy bench with my foot up... Hope you had a good weekend 😊   ... View more

Your sewing machine sounds ds as if it's in safe hands! I compromised and bought a rollator I can sit on when I get tired. My own, portable CBA bench!  He's called Rolo, my 4b4! Superb weather today... and we went for an unplanned curry tonight,  which was great,  even if the dish I ordered was too hot for me! Oh and I swapped.  YD was due for lunch Sunday,  but her partner has gone down with a stinking cold,  and as we're going away they thought they ought not to come. We're disappointed,  but it's the right decision... Curry and trimmings in the shed...I've got my feet up now.... Have a great Easter xx ... View more

thanks for the pasta! Yummy... I am struggling.  My feet are so painful for the last couple of days (earlier in the chemo cycle than usual) and OH is going on about buying a wheelchair to take to Holland for me!!!! NOOOOOO!  I'll hobble.... NOOOO! I don't mind for the odd day round big things, but NOOOOO! ... View more

holidays...books... chips... what's not to like? The breathlessness has taken no time at all to come back this time - 24 hours!  I do need that op.....  Still, it's not as bad as it was before I went, so 🤞 Beautiful day here, but cold.  The heron has had 5 of our 8 fish from the pond! Pub Sunday lunch today - last minute decision last night.... I'll get some for the shed.... I put up a little prayer station or two in church for Holy Week.  One was about guilt.  OH made me take out the reference to alligators!!!! take care, and enjoy the rest of the weekend... ... View more

Just back from the hair dressers - brown hair again!!!!  The first lot of chemo made my hair curl, so with the grey too I kept seeing my mother in the mirror!  It took me 9 years to embrace the curls, now this chemo is making it go straighter again and I want to keep the curls!  What are we like?? flat roofs being replaced.... windy and dark grey clouds amongst the blue skies! had my lung drained this morning - took longer than usual because they needed two goes, and  wanted a post procedure Xray to make sure.  They don't want to drain it again, so that'll mean sticking the pleura together with a kind of talcum powder!  Overnight stay at least.  Still, very kind and lovely consultant who would have got that going today, to happen in a couple of weeks, but when I explained we were going to Holland in a couple of weeks, and I'd like to be able to walk easily, agreed to another drain today - see me when we get back!  Yippee! YD is coming for the day tomorrow, so that's something to look forward to....   have a good weekend xxxx ... View more

Gosh, I'd forgotten about Hump and Dink!! My BCN friend I'd back at work after 7 months recovery from surgery. Suddenly I have a date for chat with onc about neuropathy.....I've lost the feeling in my fingertips as well as feet. The breathlessness is getting worse, so they referred me to respiratory and I'm having the fluid drained next week.  Woo hoo!!! I've been holding off, but it's nearly 6 months since the last drainage... Bara brith in the shed, along with scones,  jam and clotted cream.   11ses... Cold but bright here.  Singing all morning....the rest of the community choir are singing all day....I'll go back for the sing through at 4pm... Can OH cope with a meal deal from somewhere to save you cooking once a week? The bit I always hated wasn't the cooking, but the choosing all the time. Ttfn. Time to.leave the warmth of my bed.... ... View more

Stocking up the shed as we speak.....  all sounds good,      togetherness, no vomitting.... We had  fab time.  GD's little jig when she saw us outside the school gate was brilliant to see.  doingo bedtime on Saturday, we were reading about Gordon the Big Engine (who had a grumpy face) and I said "grandad gets grumpy sometimes too" and SHE (age 5) said "with you, I think" !!!!!  Observant little one! Fish and hips on the beach in the sunshine Saturday... good to be home, but I left my every day coat up there... that'll be a challenge.  I have others, but....  men here re-roofing the garage.... another one due to finish off some wall-building in the garden...  I'm off out!! Supermarket first (great joy of life, having once visited Romania when you bought whichever toothpaste they had, if they had it) ttfn - be good xx ... View more

It's easily done.  Throw the guilt to the alligators,  they are looking hungry...  after OH mistake, it isn't unreasonable that the bank phone, which of course the scammers know.  At least payments have been stopped. Medicinal fish and chips in the shed... My assemblies went well, and I wasn't as worn out as I expected.  It was great fun getting the children cheering and booing....it was a series of assemblies for world women's day,  looking at people in jobs that only men used to do.  That would be me as a CofE vicar sort of person!!! Lovely time sitting in the sunshine when I got home. We used to have 8 fish in the pond...only got 3 now.  I've seen the pesky heron perched.... Off up north crack of dawn tomorrow. 5am alarm.. 😱 ... View more

I have the same mental image!  The comments are usually less encouraging though!  Thanks for the roast in the shed.  Hugely grateful for the knitted blankets with sleeves too!       Real bonus!! We had a busy weekend and I'm tired.  Just been prescribed something to stop the feet burning (which will also help me sleep) only they never told me I couldn't drink alcohol with it!!!! 😲 Still, a meeting tonight has gone on the *uck it list, so that's a bonus! This week there's a man relaying the patio outside the front door.  Next week roofers arrive.  In between we'll go and have a quiet weekend with the grand daughter!! Chicken Fricasse in the shed tonight, with mashed potatoes and veg.... marmalade B&B pudding too... ... View more

I think I missed something on the journey - what is the Lido all about? Having felt rubbish on Friday, yesterday was great.  No rhyme nor reason. Today seems to call for a wee sit, well wrapped up, so make space on the CBA bench... Croissants in the shed, along with good coffee... ... View more