Joanne - I also agree with everyone who has made a comment. You have the right to refuse treatment if it doesnāt suit you. I know their professionals, but you know your body better than anyone else. I had a very bad experience on the Xeloda tablets. They have took me off them, but if they had said i should stay on them i would refuse.
Lily - Sounds like you in hyper mode. If you need to get rid of more energy, i have a ironing basket looking like Mount Everest!!
Julia - I know exactly what you mean about a sweet tooth. I have never had one until strating Chemo treatment. Canāt get enough Fruit Pastilles, Jelly Babies etcā¦
The big day is tomorrow when they decide what to do with me and the treatment, they are going to give me. Going camping for the weekendā¦hoping the rain stays awayā¦ hoping, preying,wishing!!!
Hi Kirsty - just re-read your previous post - good luck tomorrow, make sure they treat you like you want to be treated. Join the awkward squad.
Someone brought some Gordon Ramsay chocs into office this morning - glad to say they are so sweet they made my teeth hurt - didnāt stop my eating two, the chaps have finished off the rest!!
Letās hope the weather is OK this weekend - forecast looks good but who knows.
Kirsty, hope you get some treatment that suits you this time.
Just thought Iād share a sweet sentiment with you. A friend in the village who supplies wood dropped of the autumn supply yesterday and apparently said to Tommy that he really respected how well I was battling through this lot. He said heād heard of this Trisha person (that presenter whoās doing BC treatment at the moment) and also said that if you really want to see someone just getting on with it you should talk to Angieā¦ or something to that effect. I wasnāt there.
Sweet though isnāt it. Made me smile. More important than a celebrityā¦ youāll have to watch out Nicky LOL
Well, Iām not sure about THAT Angie My moment will come Iām sure. Weāre all stars anyway - look how weāre soldiering on with all our ups and downs. Not much fun at all but we will get through it all and come out smiling. Iām sure of that having read and posted all the weird and wonderful things on this long thread. I look at the number of posts on it and weāre doing very well! One of the reasons I felt I had to post tonight was, having logged on, I realised we were at No 666! Better the devil you know
Kirsty - hope all goes well tomorrow and you get some good advice, forward treatment and time to let off steam at the onc if you need to. Plus I hope camping is fun and dry! Weāre off to London with my girls this weekend for a short break and visiting the King Tutankamen Exhib, one of itās last days. Add to that a little retail therapy and a cocktail or 2 and Bobās your uncle!
Lily - put that iron down - itās not good for you! Guess the steroids are kicking in and at least youāre feeling OK which is great as I feel like cr@p each time. Hope you feel OK and get through Monday, not an easy time for you and the family, but Iām sure you will support each other.
Bevy - hope youāre OK after chemo. I donāt even like to think about veins any more. I had the same as you last time, difficult to find and then blood everywhere. This was just before the Sky cameraman came in so we thought weād better change the pillow that my arm was supported on - didnāt look very professional and would have scared anyone due to start chemo if it was shown!
Julia, Joanne, Lisa and Lorraine - hope you are all well. Lorraine - you must be over the worst of FEC No 6 - Wow, havenāt you done well! Hope all goes well for appt on Monday.
Iām hoping to get my last FEC next Thursday but I think 2 things stand in my way. Possibly low neuts and more frustratingly a lack of an appointment! When Iād finished my last one 2 weeks ago I went to book the next one only to be told all the appointment slots had gone! I wasnāt the only one, there are 4 of us in the same boat. I was due a call to give me a time but hadnāt heard so chased up today. No appointment still and no time slots available. Then I had to chase oncās secretary whoās meant to be dealing with this only to get voicemail. Arrrrrgh! Left message, no reply yet, now have to chase tomorrow. As if I havenāt enough to do, I know itās not their fault as appointments get moved if you miss a week but Iād rather not be sorting it out myself.
Oh well, best relieve my stress levels with a nice glass of wine, or 2, with 2 good friends who Iām meeting up with tonight for a good old gossip.
Have a good evening and letās hope the weekend is good as well.
Hi,
It took me until 2 a.m to get to sleep last night and was so disappointed to be wide awake at 5!! I have taken the last batch of steroids this morning and I am still bouncy bouncy again, Thank goodness I feel ok because it would be doubling the misery time if not. So the ups and downs of the new treatments are becoming clear - feel normal, mild tummy condition which I can control if I eat carefully, unable to drive as my focus and spacial ability has gone. Have lost the drippy eye, fog/bubble sensation, hair is a bit safer, mega energy now but picked up annoying insomnia, bowels have come back into the normal zone, no nausea at all. So a mixed bunch of pluses and minuses. Overall much better for me. Joanne I wish I could say the same for you, you moan all you like sweet, you know I did on epi. Hope the next one improves. I get lots of practice writing in Maths books trying to persuade the local youth to do some work and pass their exams! Thank you for the compliment though. I need you beside me on this, lets keep trucking! Julia the tablets often do that you need to ask to have it iv and it should go. I have to have a drip to slow it even further as I could not tolerate the hand injections of it as they are not smooth enough. Interesting that you want sweet things, I am usually but right off them except ribena by the bucketload. Had not realised how much more expensive it is and the cheap one just wonāt hit the right spot.It will nice to treck along beside you too, a real convoy developing! I want some sun too but did you read that the 5FU makes you very prone to bad sunburn and you should avpid exposure, no danger of that this year!! is it making you really hot at times? Bevy thanks I needed a name for my style of āwhat can be seen houseworkā. I always use the excuse that it is dangerous for children not to come in contact with germs. Will have to change that as youngest is 16 now and huge! Annoying about your unit being a bit scatty. I would go mad if they did not put gloves on but never ever had my blood pressure taken and notes are attached to each personās drip for quick access so no boards. You sound like they might suggest a line or port to help if the veins continue to play up, it must add to your anxiety. Discinfect the old man while he is asleep just in case!! Kirsty you just know I would volunteer for Mount Everest if you lived nearer. LOL! I will be thinking of you and let us know what they decide please. Hope your son is now able to look forward to his new course next week enthusiastically and really enjoys it. Two superstars now, Nicky and Angie!! Angie what a lovely thing to say to help you battle on.
Nicky can you jot down the day, time and channel so I can watch the lot and play you back in slow motion!! 666 eh! The exhibition sounds great wish I could travel without getting vertigo.Cocktails, now it is def going to your head!! Just joking have a great time and get those neuts up, would you like to buy some from one of the boffs on here and cheat? I canāt believe that about the appointmnets. Dreadful. My research nurse runs around and puts all my blood counts in my chemo diary and appointments and all the drugs given. I am supposed to have it with me when out of the area so could be treated instantly if in an accident.
Latest news on āthe tubeā in my neck. I was nagged by my BC local pal to ring up and surprise surprise I have to go in first thing in the morning to have the port flushed, bled back and tested. So another stabbing only 3 days after the last boo hoo.
I have moaned at her all evening on the phone but know she is right. Someone in our unit had chemo escape and had to be injected all round with steroids and ended up in hospital in alot of pain apparently. If they donāt like it. I am being referred back to the vascular surgeon tomorrow!!! More surgery and I am on a plane anywhere I can afford! I also heard that a poor poor lady that two of my daughters know died of BC yesterday at only 30, which has been very upsetting. So thinking very much of her little girl and partner and very unsettled by its very rapid end. She was in the unit when I had epi 3 such a short time ago. It made me feel guilty for even worrying and making a fuss about tomorrow.
On that sad note I will finish and hope to hear some happier news soon. Take care
Lily x
heya tigerā¦ girl with heartburn here. Really knackered but steroids keeping me up too. I think Flouroracil does make you hot actually. Certainly makes me flush. but could also ve the epi or the Cyclo. Who knows.
Lily, my god times are challenging you through this arenāt they. Hope the neck thing goes smoothly ie not so much a stabbing this time, wouldnāt blame you getting on the planeā¦ Iād consider coming to resuce in the campervan if it werenāt out of MOT right now.
Sorry about your daughtersā friend. Itās amazing how often we find ourselves saying sorry to people here isnāt it. How things change so quickly in all ways. So sad. Being 33 they do seem to close to home. I honestly didnāt worry about my tests before I was diagnosed because I was so blissfully ignorant and everyone said yeah itāll be a cyst etc, no way someone so young would have bresat cancer. And then to find a tumour in each breastā¦ .what, you canāt make it up can you. Sorry I digress. Did you or your daughters know her well?
Iām starting to feel like saying congrats for just holding your head up and carrying on to a lot of the people here, not out of pity but sheer admiration, that of course includes everyone here.
Right stomach settling, steroids letting up a bit, must at least try to rest. Back to the cookbook me thinks.
Angie,
I needed a giggle, am now imagining you roaring to the rescue in the campervan, brilliant. Can we go to the secret picnic spot and you make me one of your specail neuts boosters?
The lady was not a close friend but one worked with one daughter in the past and both saw her and chatted frequently so my two girlies of 24 and 22 with a Mum with it are naturally affected by the shock and sadness. One had to come away as met the little girl there. I believe she has a move to another area now to cope with too. Heartbreaking and feel uselessly unable to help.
Sleeping will be tough tonight.
Lily x
Lily I think I must have been on antisleep with you last night. Managed to get to bed around 1 but wide awake from nightmares followed by self pity by 5 am. OH woke up at 7 and talked me back to sleep but it was one of the worst night Iāve had to date, I guess eventually having had such a radical change in image and th chemo now making me look strange I was eventually going to crack, but at least today is another day, Hope it is for you too Lil. Youāve had such a tough time of late and what with the funeral on Monday I could understand if you just curled up into a little ball. Iād love to loan you my cap, not necessarily for the funeral. Itās black and says f**k cancer in chinese, so no one around me knows what statement Iām making but it cheers me up.
I honestly wouldnāt worry about what you wear on your head on Monday, really, They all know how much youāve been through and helping with the pressies for BIL etc (I think it was BIL, brain getting flappy on the dex already)
I can understand the shock for your girls, itās hard to have to face these things. I think itās really starting to get to people around me. Iām not mentioning how many young ladies arenāt being the lucky statistic to my family anymore as I donāt think they could take it. I worked out yesterday that if everyone who suffered BC in the UK was on here then weād be saying goodbye to over 30 people a day. Urgh thatās just no where near good enough is it. But it is why weāre all going through this. Those numbers are old and I for one am determined that they get a hell of a lot better than that. Too much for the sould to bear.
Sorry if that puts anyone on a downer but if it helps weāre here today with each other, live today. Live it like you mean it, I say.
Especially you Lily, You donāt have to put on a brave face or anything but take in the air and breathe deep. If youāre ever up this way Iāll tell you where the secret spot is and Iāll pack up some home made minestrone with chicken stock for you (god knows I have enough courgettes at hand
Hi all: Have just run off some pages of this thread so I can catch up with you all - so difficult to remember everything!
Nicky: Canāt believe your lot are so inefficient, they could book your appointments weeks in advance and then only change if you are ill, no excuse really.
Angie: re your mouth cracks, pre chemo I used Vit B12 to cure any I had, worked a treat, not sure we can use that but it might be worth checking.
Lily: think I have got the pill regime under control now, so will see how it goes for the last few days. Chance of getting suburn would be a fine thing, but will bear that in mind. My other problem with the chemo is that I have supraventrical tachycardia which gives me palpitations - have had it for about 25 years but it is not bad enough to require medication. I have noticed that over the last few weeks my palpitations are getting more frequent, so will add that to the list for the next onc visit. That may preclude me from having Herceptin - but Iām not sure that worries me. Also, yes I do get the hots - bit like the bloody menopause (I am 61 and 7 years post meno). Really sorry about your tube problem, letās hope it is all OK.
Have just received e-mail from friend which is a video of Australian politician doing interview following tanker dumping 20,000 tonnes of crude oil in the bay because āthe front fell offā. Havenāt laughed so much in years, wiped off every last vestige of eye make up. Not sure youāre alllowed to give e-mail addresses on here but if anyone wants to try will send on.
Hope everyone else is OK and we all have a good weekend. Will catch up with you all again next week.
Hi,
pleased to report that the tube malfunction is infact normal and so it was a false alarm!! Pheww run into some good luck at last. They donāt know why it has suddenly appeared but seems to have wriggled down the vein a bit and popped up where it goes up my neck. What fun that will be when it comes out and I have to be awake. Putting that thought on hold for now. So my youngest daughter and I then overspent on clothes to celebrate. Very enjoyable morning and found a nice dress and jacket for the funeral. Was not so happy about the size I needed so that it did not stick to more podgy bits than I used to have to work around! I can see a new wardrobe coming when I go back into work in suits - LARGE!!
Angie I am really empathising with you because I have been booing a lot today. It is because we are on the same weeks now. I accidentally smashed a glass and cut my arm and cried and cried. I think I have handled worse pain than that!! I found most people I spoke to today to be flippant, snappy or rude. So I guess that was me in a mood and being ultra sensitive. I am just losing the plot with being told (before going this morning) that its a bit like going to the dentist. The worst comment ever, days after my dx has to be āwell hopefully it will go well for you, but if it goes the other way then you Mother will know how it feelsā. The end part not said was āto lose a childā. I am really glad that most people donāt know what we go through both physically and mentally and how our dreams have been snatched but I am totally pā¦d off with people who think they know what it is like!!
OK I am back to mad rather than sad, so will change the subject or I will depress all of you, just when you might be on the up.
On Sunday we are going to Brands Hatch to watch the Indy racing and Lewis Hamilton is appearing to do demonstration laps. We have tickets to go down the pit lanes and see his cars. It was supposed to be to meet him and get his autograph but they changed it after we booked but they all seem happy about it. It is a thank you and birthday treat for my hubby for being such a rock despite being really phobic about anything slightly medical. I plan to snooze all the way there and back so I have enough energy to enjoy it. It will be good to get out before Monday as he is looking very stressed trying to get his eulogy and the orders of service done as perfectly as he wants. I spotted an error- wish I hadnāt!! Our eldest daughter is a graphic designer and designed a floral picture for the front so it is a very home made event.
Julia I am really glad to hear you are getting on better with the C tablets,long may that last and hope they are able to help sort out the palpatations. Lisa how are you, good sign that you are busy, I worry it might mean you are poorly!!
Hugs to everyone and hope you can enjoy the weekend. Hoping to hear some news on your appointments this week and that they had some good news for you.
Lily x
feel complete empathy will lots of your statements as I too feel like c##p! I am so fed up with each chemo session giving me a different problem this time my breast underarm and down to my elbow (surgery side) became very painful and red so guess what I am back on antibiotics just for a change and then to top it all my other arm that receives the chemo hurts like hell too I think the chemo nurse pushed the nasty stuff into me too quickly as the vien really feels damaged now hope that will pass. Like you Lily I too have had a crying session doesnāt seem to take much to set me off. Our son is moving out this weekend to live with his girlfiend (well he is 26!) but I found it so hard that I couldnāt help him and be part of it and it has severley hacked me off. Still I keep thinking about less washing, ironing, cooking and no more smelly football boots left around the house! See I did manage a positive donāt feel very positive though.
Chin up to all of you and at least the sun is out! not that we can go out in it.
Hi,
Bev so sorry to hear you have more trouble. Is it an infection from your surgery wounds or something else? I would knock someoneās block off if they asked me to take more tablets right now.
Can you believe there is apparently a shortage of iv steroids so when I went for my chemo I had to take 4 tablets instead and then wait half an hour for them to work. i was really annoyed as it made me feel sick before I started and everyone watched me taking them.
get better soon
lily x
hiya all
Lily sooo glad the tube thing was normal, phew! Im okay ta, just tired and fed up as normal. Ive got myself into panic mode, on my one remaining boob thereās a very small, bout 5mm red splodge, its not raised not a spot and not sore and no lump, normally wouldnt think anything but then red somewhere on here about someone having a spot and it was secondaries - totally freaked me, half the time I cant even see it but praying its nothing especially when Im so near the finish line and keep thinking maybe I can do all this and get through it, next second thinking what if I am not going to survive to see other birthdays etc. Anyhow, hope you all enjoy rest of your weekend, lily enjoy tomorrow
xx
Hi Lisa,
Thanks. Well you are talking to an expert on panicking about anything so I totally understand where you are coming from. Not sure really what it is from what you are saying. But you will of course have to go and get it checked, sorry, not least of all to stop the panic. I have small red blobs that look like it had bled under the skin like a red blister, is it the same? These happen naturally at any time, probably getting older. I am sure it will be fine but remember that IF you were ever unlucky enough to get something in the other side, it would be a new primary not a secondary, so different.
I really know how this will have done your head in. Stay calm, nothing will change between now and when you can talk to someone. You are still on chemo so it would be stopping anything. I think we are going to be in a terrible panic after chemo too you know, it does feel like a bit of an insurance policy at times, doesnāt it.
Big hug for you, wish I could come and get plastered with you.
Lily x
Thanks lily, merrily tipsy myself! I have one of those red things that had for ages, its more like a mark you get when you have been tossing and turning in sleep buthasnt gone. hopefully nothing but red on here somewhere that it was an indication for someone of secondaries spec when on chemp. I know what you mean though, everyone says should be celebrating last chemo but least I know when on it what to expect and that hopefully its killing things off wether when havent got it worried its going to grow back - who would have ever thought I would be cheering from rafters about last one!! Well done the dead yesterday, no nothing exciting, got weighed, put on 2stone, 2lb and if another person says dont worry it will all come of afterwards Iāll scream. Im the same I was at my fatest before w.watchers many times, but yet feel fatter, its all round my chin, have a new tyre in middle and stomach nearly down to my knees!!! I could be an advert for one of those funny cards!!!
My friend is having a sex and the city party next weekend, typicall, its on my not lively cheery dates but will try it. got a family bbq tomorrow (taking waxing photos which are sooo funny), nieces 4th birthday on thursday and party sat (holding it together as know when I go to things like this get the old, hope Im here next year feelings), 3 hospital appointments next week, then week after planning with onc for the future, appointment re ovaries, bil wedding, week after rugby final, its all go and least I get a night away, yipppeee!!!
xxxxx
P.s. we will have to have a virtual plastering!!!
We are all a bit of a mess at the moment arenāt weā¦ chemo perhaps. I think so. Oh and this cancer malarky.
First the grim stuff. Donāt panic Lisa, just get it checked out. I reckon it will be nothing because logically all the side effects of chemo are harsh enough to cause all sorts of reactions. As such I decided about 2 rounds ago that nothing physical is real and it all has to be checked, so I begrudgingly tell them about every little thing, and they say keep an eye on it, and it goes away by the next round. Donāt forget just what your poor little bod is having to put up with, bound to complain and make bumps and rashes. Hope you have a great week with the fun stuff.
I suppose weāll all have a couple of years of wandering whether weāll still be here for the next brithday, xmas etc. Itās naturaly Iām sure and after a few years of still being around maybe weāll get used to it. I hope so, I know exactly what you mean.
Lily: What a day youāve got eh, you know how to do this roller coaster donāt you! Hope the cars are brill and hubby loves it and I hope you both have a restful night, I know it wonāt be easy (understatement) but try and talk about the good times and maybe have a nice warm bath with lavender in the air before bed or something that relaxes you. You and hubby will get through these days and be stronger for it Iām sure. Some things are meant to make us strongā¦ this is one of them.
OH went up in a microlight yesterday. He won the trip as part of the cancer research auction at the pub a month or so back and the weather was OK so up he went. Journey got cut short due to weather being OK but not brill and a slightly flapping wing (not something you risk in a microlight
He really enjoyed it and discussions have turned to just how much these things donāt cost. About a grand for a basic trike microlight and 2k to get lessons and me and OH could be flying down to see friends at other end of country. Now thatās something to save up for I reckon. So if you see a mad woman in a cow buff headscarf laughing like a loony flying over the lakesā¦ thatās me
Bevyā¦ the veins will heal in time apparently. Mine already are apart from the last one they used for some reason Iāve got lovely bruising this time, body is really putting up a fight.
Lily: Did you ever see the angry as a bag of weasels thread. I was like that for the first 4 rounds of FEC. I think itās a combo of the F and the dex. This time Iām a lot calmerā¦ OH said Iām now as angry as a box of hamsters, ie not really angry at all and quite cuteā¦ aaahhh
Still got the bowling ball belly though. Throw me down the lane and youāre sure to get a strike
Anyway hope the weatherās good where you are, thereās a serious thunderstorm coming here I think and the humidity is relentless. That and I left the freezer door open overnight so weāre having to work out whatās rescuable and whatās not. Still itās got rid of all the ice pops I bought for chemo that I am never going to eat. Itās not chemo aversion, theyāre just sickly sweet.
iam sorry to have winged all week but things have been getting to me a lot and lying about in bed feeling sorry for myself hasnt helped much,
I think its because I feel lost being a control freak and having no control over this its like having to retrain myself to trust people which comes difficult to me. Long story.
I really dont know what iam trying to say here all I know is I cant deal with the fact that in 2 days time Iam going to be ill again and yes I keep telling myself its for the greater good but still hard all the same as Iām sure you all know by now.
I love learning new things and thats how Ive been keeping my mind off this by taking Iq test keeping my mind active stupid things like I heard something about newtons laws and I had to go online and find out all about them for some reason I want to learn dont ask mw if its out of boredom or the d=fact that iām natually curious about everything. Just now its scottish history. Oh god im ranting the biggest loads of cr0p here lol.
Anyway had a couple of not bad days and I hope everyone has had a good weekend. Ill shut up now and go and hide in my corner again lol
Hi,
Lisa sorry I hung on last night but was tired and missed your post to reply. I just lost this post maybe because Joanne and I hit post at the same second, so will send it again and then reply to Jo. I had the most exciting day for ages including being manhandled by Lewis Hamiltonās security who in my chemo fog I did not see approaching in large numbers at speed!! LOL. Will do a long post on it next week.
Lisa I am so excited for you. You have done it, finished the course, how brilliant.
BUT YOU FORGOT YOUR TWIN YOU B>>>>Y NIT !!!
Just joking I am naturally as green as green with envy and dead jealous as we have travelled along together for so long but I am so so pleased for you. It has really made me happy to think of you not having an appointment for 3 weeks. You have been so brave coping with much more than I have and I know you have lots more things to do next. I hope you will stay on her with us and let us help you through the next stages of your treatment and cheer us all through chemo.
So so pleased now I really want o come and have a bottle of champagne with you
Big hugs
Lily x x x
