Breast Cancer Now Forum

  Hi Guys,   Long time no speak.  No excuses for being off radar.  I hope you are all as well as can be expected, hopefully much better.   I know I have missed loads and loads,  Big hugs ( three months worth )   Gilly   xxx       ... View more

@Gelbel    Pm suits with me.   See you virtually.  Excellent idea, looking forward to it.   Big hugs    Gilly XXX     ... View more

Hi all.  Not been around, not a happy bunny.   Any way major rant.....   Hubby been home since I have been diagnosed. ( October )...  more at a later date.  That is not for now.. I have been told week in week out don't do that...  I will.   I look around the house kept calm, no idea how.  The place is a complete disgrace.  Hoover still upstairs where it has been for two weeks, have asked for it to be brought downstairs....  no I will hoover your arm won't take it.   I ,managed somehow to hold down full time job, do the school runs, only finished two years ago when youngest got wheels ( thirty years plus ), laundry, cordon bleu cooking, housework to the point of rubbing paint of the skirting boards, cleaning x no of loos....the ironing, sorting the dog with all his needs, and that is before we get to docs apps for the kids and vets.  All with a smile on my face, forgetting writing all the darned Christmas cards required for business, remembering every fracking member of his family's birthday, Christmas shopping on behalf of of everyone with love from who ever I decided in his family had  "bought " said gift, cooking for twenty....  all his flaming family from pre christmas eve to the day after new years eve, suppling wine, aperitives etc plus breakfast lunch dinner and snacks in between.   And breathe....    He might do the dishwasher and some of HIS own laundry these days.  The cooking ....mostly edible but I very little appetite.   It must be me !!!!!  I am apparently asking -  ney .....nagging.  The spiders are getting very well fed in our house at the moment.   Any way off to bed, drugged up   Take care you lovely ladies    I hope next week is a good one   Biggest hugs   Gilly   XXX ... View more

@donkeywoman    Hey, I know where you are at, and you didn't rant, you rightly stood up fo your NHS colleagues  The problem arose because it was the chief tonto pharmacist that had to pass the drugs to John.  It was the big boss that sadly made herself seem a complete ass.  I agree whole heartedly re the NHS and staff.  From a purely personal view, the team and crew around me are absolutely second to non.  The pharmacist was trying to point score.  It had already been sanctioned from the Hospice to the pharmacy dept as they anticipated problems.  Luckily as you say it was John who was doing the collecting and not just a friend doing both of us a huge favour, several had offered as they were going to Morrison's next door,  the script was simplistically plain, no big words self explanatory and signed by the boss of the study at UCL.  As always the dept was very busy and she had an audience.  I doubt she rarely ventures to meet the patients.....  There is always the odd one, who cannot abide patient contact and or consider themselves above that.  I rarely saw it when I worked years ago at the hospital but just very occasionally.  There was one consultant who I had actually seen privately and the nose he looked down from re the low life of  office crew and nurses and NHS patients when he had to engage was unbelievable.  Three piece suit, bar and chain with fob watch and bowtie.  When being paid in his " Consultancy rooms " he was a gentleman personified.  I saw him once and very quickly changed to another with the same speciality.   Actually the same thing happened when I was diagnosed with " NON cancer ", he told me to go home and enjoy the rest of my life.  Had I listened I would;d have been dead twenty years ago.  Five weeks later I had a biopsy and the rest is history.....  Because of the very short time between the two and the diagnosis I would have challenged him and taken it as far as I could to prevent others being in the same position and hearing what they want to hear .....  go home and no second opinion.  Plus the  internet was very very new and exclusive.  What a difference that has made Apologies this isn't a rant but I have yet to learn how to write a few words when a lot can do....   big hugs   Gilly   XXXXX ... View more

@donkeywoman    obviously the white coats matter more than we ever will, and know more than any Consultant.   I find it terrifying.  To think that our super care people can be so undermined.  Luckily it was John that went and not my junior son.  John demanded to see someone in charge, junior would have returned home without drugs because he being 19 would assume the white coat knew better.  Until of course he crossed the threshold of the house when he would have been escorted back by John ( hubby ) who raised the question of the qualifications of the person in white coat.   sadly there are many out there who just succumb to the first hurdle, thinking they have misunderstood and the white coat knows more....   I know that no one on this forum would just walk away after being challenged by someone who knows nothing, having been given a prescription and strict " rules " but one only has to read the press  to  find the so called " muppets " who believe anything a traffic warden says is valid.   I was gob smacked....  But then again the yes sir no sir do exist sadly   All they need to do is join and read this forum, whatever comment thread and their eyes might be opened but not necessarily the brain.   can do will can't do won't the can't do's constantly moan and achieve nothing.  Not even if you believe he press an appointment to see someone.   I have ranted apologies for that but sometimes the press gets all the headlines and not the good news.....   whilst typing I was watching the covid idiots attack the police and the amount of grief and attitude not to mention downright intent to maime if not kill those that are preventing the virus spreading and allow us to regain normal life   Hugs   Gilly xxxx ... View more

@Shi    Sounds amazing, and brilliant you are still in touch. From your response, maybe I can hope it is more than tongue in cheek and will most definitely take your advice.   Thank you   Gilly xxx ... View more

@Shi    It was said more tongue in cheek, though it would be a lovely thing to do    xx   Gilly ... View more

Good afternoon all you lovely lovely ladies.   Normal service is resumed.  I could blame power cuts, internet problems, weak signal etc.  But for once I will be honest.   I couldn't be bothered to post.  Please don't take this personally.  It has been a hell of a week.   Tuesday - two hour interview with multiple multiple questions about 8 pages at my local Hospice following my Denusab injection at KMH.  Saw chief tonto  Consultant clinical physiologist re the drugs trial.  Lucky for me it was on Tues morning and he and the two senior nurses were absolutely delightful, though afterwards I felt knack.... as a horse.  My brain really had to dig deep re questions on my health over the last month, week and day.  I say lucky because it kept me occupied and I wasn't thinking of the scan on brain to be done  shortly after lunch.   Had said scan with contrast at another local hospital and the staff were fabulous.  I was in and back in the car after about half an hour, most of that was checking no adverse reaction to the darned contrast.  Scan about three minutes, over before it started really.   Started drug trial on Wednesday, John had to go to KMH pharmacy to collect.  Aren't there some stupid professional people.....  He had the official prescription from U C L the ones undertaking the study, and was asked was he aware of the interaction  with my other drugs ( Eventually, someone had to be found who knew about the trial and took quiet some time ), by the senior white coat person.  He explained no one knew what was in the packets not even most down in London apart from computers  and certainly not the Hospice as it is an official double blind trial.  She was not happy with the answer and took some persuading to hand over bag. Because it took John so long on Wednesday morning to collect I only took one tablet.  I started two on Thursday, and have been making notes as well aware of the questions coming week by week and chemo brain cannot remember much.  I take the first at 09:00 am and the second at around midday.   Several things so far have changed though it might all be in my "HEAD ".....My fatigue levels which the trial is measuring and reducing  have almost disappeared though I still get tired....  a difference between the two. My constant dripping nose is not there until much later on the afternoon, and yesterday even managed to walk out to our local Abbey with hubby for about half an hour.  V tired afterwards but it was the first time since I started my chemo I have walked for more than 5 to ten minutes.  Was going again today but decided I do not want to push it too far so weather permitting I will be out again tomorrow, hopefully for a little longer.  baby steps....   Friday, saw my Consultant in person to discuss scan...... have to have an MRI within the next few days.  More as I keep telling myself as a precaution as there was not much to note on scan apart from a " fold " whatever that means.   So onwards and upwards, I keep taking all the tablets and am slowly uncrossing my knees, toes and fingers.   I send huge hugs to  you all for your thoughts and lovely comments re last week.  It was quiet a week !!!!!   Love to all and hope treatments etc are all going to plan.     Ladies we need to prepare diaries for a central meeting point for lunch when we are officially allowed out again.  OK I have an appalling appetite.....  just drinks will do.....   The biggest and warmest of all hugs    Gilly   xxx   It was impossible to shorten so hope no one has fallen asleep if you could even be bothered to read it all   XXXXX             ... View more

To all you lovely ladies.   I hope I do not upset any one by wishing you a very peaceful and restful Mother's day.   Gilly   XXXX ... View more

"evening all "   @Erin 35    Sorry to hear about your headaches, another thing to contend with. and weight....   @donkeywoman    Also very down, now up.  My Mc nurse has given me the open menu method.  I can eat what I like when I like, stuff the five a day...  That I make up with my liquid Juniper -  G and anything else, and a very pleasant way of imbibing  dietary requirements.     How can one supposedly loose weight and ones jeans don't darn fit ?   Any way some excellent personal news.   Middle son has just secured a job down south again and is coming home from Scotland so we will be able to see him going forward.  He is moving in, with fiancee temporarily in two weeks.  I am cheering today, give me three weeks after last night !!!!!   Big hugs.   Happy saturday all   Gilly   XXXX ... View more

@Belinda_F    does that mean you have won the lottery ?   Hugs   Gilly   XXX ... View more

@donkeywoman   The TMS....   This will you hopefully make you all laugh.   Really just put the phone down.  MORI..  Yes MORI, never before been asked anything  It started by do you know what an antibiotic is ? I thought a stupid question so answered yes a pessary..  can you please spell it.. so I did.   When was the last time you took antibiotics, I said well over a year ago.  Not good enough...  have you been investigated by your GP for  a chest infection...  yes -  so where you prescribed antibiotics ...  no sent straight to hospital for...  so have you in the last 12 months  had the following infections...  urine.. yes, chest  yes throat... yes... and it continued.  I said I have answered your question and no antibiotics prescribed.   She continued....  and continued and continued....  so how many antibiotics have you been prescribed   She ended the call as I said I am waiting for the antibiotics for gangrene, she asked what was that, I said infection that could see my....  she went, call ended   I kid you not, true as true.....  I realise they have a job to do but when the first answer is no, the rest is no.  I told them the outcome of the GP visit...  terminal cancer but still she had to tick a box.   At the end I was up to 750 antibiotics for something...   Huge fun, probably very important info just was the wrong questions when one had been given.  Hubbyy was in stitches when I finished.   It was as good as being asked about car insurance and an accident.....  I told them my Bentley fell off a ferry,  off the Isle of White gave them a reg number and they hung up too.   There is still fun to be had ladies    Big hugs   restful night.  I have a smile on my face goodness why   We might live in reality, many don't in fact millions don't.  Chin up you lovelys     Gilly   XXX     ... View more

Hi all   Glad your day has gone as well as can be. @Gelbel Never heard  whortleberries, must be a diiffernt borough of Rochdale.....   Just blown up with Son D in law to be...  son down from Edinburgh or an interview.  I can't take in desisiveness   Cel a vie   Hugs all   Gilly   XXX    I was supposed to post this hours ago, I forgot to click post ! DOH ... View more

Morning all   @Gelbel    Gosh, you know how to live.  Brilliant idea.  I many centuries  ago used to live in your neck of the woods...near Holcombe Hill.  Went to  infant school in Tups Bottom  Some wonderful Countryside around.  Do you ever eat Winberries, all my family and buddies think I am potty and making up a new fruit ?   I have passed the compliment to John regarding his surf board, keep them coming and he may bake lots more.   @donkeywoman How are they, the weather has been rather rough round here over the last two days, hope they managed to keep warm and dry.   @ Everyone else i have missed or forgotten, thank you with huge hugs for all your help yesterday.  Took a sleeping tablet, had an extra Gin and watched Thunderbirds.  Night was little better, sleep a little longer but in spells.  But I feel so much less anxious, off to have my bloods.  Not at my local docs where they come and get you from your car, you have to queue outside - normally a long queue.  So cavewoman hat and flip flops as my feet are still too swollen to get shoes on.  No coat either as they are not allowed to help, and my useless right arm at the moment is not behaving.  If I have to wait outside for more than five minutes they will certainly know I am there.  Set your clocks...  11 :30 to 12 : 00 it will be pouring cats and dogs   Big hugs and thank you all again lovely ladies   Gilly   XXX     ... View more

A cake !!!   Girls, fill your boots.   Big hugs   All done solo by " can't " bake hubby.  Well so he keeps telling me   Gilly   XXX  ... View more

Thanks guys for being here.  You are all so sensible.  With my chemo brain I should have known or thought about your wonderful advice, instead of being a muppet.  It is what I would suggest to any of you  DOH !   Lots of love   Hope all chemo has gone well today.  I told hubby at lunch i have enough and really can't take any more cr*p. Only another two weeks and five days left of the current regime one a day.  Hubby as you guys have said....  almost the same.  I told him very easy to say hard to do.  Three hours later have calmed down, hubby baked a cake for my diner, don't fancy much more, So when he has finished it I will send you all a huge slice as thanks.   Nearly gin time....  hurrah !   Gilly   XXX     ... View more

@donkeywoman    Thank you, I did say to John though when he brought up my glass of water I was burning up before I fell asleep.  Mist drink more gin to put me in  happy place.   Just pit in a call to my Mcmillan team re the dreams sets, they think as I realised after I had posted, my GP withdrew my citalopram for the depression a locus had prescribed on Friday.  Apparently that could be part of the problem apart form not having a good sleep hygiene as you so clearly suggest.  It could last for up to a fortnight.  deep joy.If it continues beyond that they will start investigating.   Brain scan with contrast on Tuesday isn't helping either !!!!!!!   Big hugs   GIlly   XXX ... View more

Morning....   Good luck to all you brave ladies having treatment today.   Re nose.....  yes yes yes mine needs more than a horses's nose bag.   had the most awful night with very vivid dreams of a horrible physical nature.  My past life with my ex ( he was horrible ) and the people we used to know alongside trains with ladders, running every where, my bets fried throwing water on me and me darling John losing me at  a train station because I couldn't run anymore terrified me.  I couldn't wake my self up.  They my ex's lot corralled me with cars in the pouring rain.  I can accept we did have quite a rough night with the wind and the rain...   But can anyone help, suggest stop.  I really am frightened to close my eyes and tonight at bed time really really frightened.   Big hugs all   Gilly   XXXX  ... View more

High all   Back on the lovely chemo  sweeties.   Both feet suddenly swollen, left unusually more than the right.  So strict regime.....  feet up, cuddle blanket with sunflowers, for at least tomorrow, have to have bloods so out on Friday morning.   Mothering Sunday plan....  unless feet go down I will not be able to wear my heels so am thinking of a way I can use them as earings or a necklace, non of them have laces so challenge on   Big hugs   Gilly   XXXX  ... View more

@Woodybird    You poor thing, did you not explain you too are very well at the moment and could have managed to see him / her.....  Lol  These people eh ! complete whimps.  No backbone.......   Sorry you day has not gone to plan but love the positivity re a change of scenery.   Big hugs   Gilly   XXXX ... View more