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Bone mets - please join in

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Moijan, My blind stories were real! Nice to hear from you. Hope you are enjoying some fun days!!

 

Ladies, I feel like we need to go back and be a little more old fashion. I think our children are exposed to too much to early! 

 

FF

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Moijan..........thanks for saying hello! I visit here every day, reading. This is a busy and friendly thread, with plenty to laugh about!  I don't usually have anything useful to add but today I thought I would give Renee a nudge over getting registered for the private group as ff mentioned it, but I think I might have made it a bit complicated! I think this is the busiest and livliest thread and it's good to have a daily giggle! I also learn a lot. There are so many regular visitors here, all sharing and supporting. Wonderful. I'm off to bed.....not so hot tonight.....but first out into the garden where I sometimes have a hedgehog visitor. He puffs and snuffles, and waddles past me and round me quite happily, and eating all my slugs I hope! Then bed.........goodnight everyone,

 

mo                   x

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Hi Suze,

 

do you think we are overdoing the politically correctness with kids these days...? I know gay is absolutely fine and have gay friends etc, also they need to know that adding bits to someone elses jigsaw produces an extra peice ( if you are unlucky) but kids have a right to be kids, enjoy being kids...and there...ive said it...and I havent any!

 

And I know that teachers have to do what they are told teaching wise......same as doctors have to ply us with the standard treatment/chemo but for my money..,the world has spun slightly off its axis xx

 

and the thing is....all the different factions feel they are right!

 

yes, the world is on an unforseeable journey. Thats for sure!

 

mx

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Hi Mo, where have you been?

 

nice to see your red cape xx

 

Mx

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Babsy, yes! Good for you go girl...and enjoy. Just make sure you ar fully covered insurance wise...chat to Macmillan....they know exactly who and where...tho they only list some good companies.

 

love Moijanxx

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Ff. Was just reading that tale, was funny, then hought...IS It a joke? Hope your mets are behaving a bit better these days? And that your joy is brimming..realised i havent bern responding yo you much lately!

 Was also wondering if USA ducks eggs are same as UK ducks eggs and if different breeds of Ducks produce different types of eggs..,then everything go a bit too much.

 

i know we arent supposed to discuss the C word on here but noted that C is becoming legalised in some states and feelng realky envious as warched some seminars on C this week and realise how beneficial it is for lots of things..,not just cancer...as it reduces inflammation.

 

moijanxx😎 (Note my disguise)

 

am desperately trying to sleep nowxx

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Jellytot. You definitely sound more positive and your onc is doing a fantastic job. Those nine more rads will fly by. Did you get given a trendy little tunic number? At the Christie, they give you a fancy top with press studs to keep for the four weeks. It was much nicer than some of the hospital robes I've endured. It's hard to keep dignity intact when the back of your gown is gaping open! 

FF. The nurse didn't show up in the end so has been rescheduled. We've had some very strong views from some parents. We're trying to make their kids gay and teenage pregnancy is a government conspiracy. It's all good fun being a teacher.

Didn't get my biopsy. Got to see the scan pictures and specialist said it will be a struggle to get a biopsy but referring me to another department to have a try. My pain can be treated three ways. I can have a new drug that has side effects of making you tired and loopy (doctors word). So not having them. I can have an op with six weeks recovery, which would mess up my holiday and first ever music festival. So I plumped for steroid injection and if that doesn't work, ill have the op. Should be about three weeks as a day patient. 

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Hello Girls,

Just been to the ballet with my mummy, Alice in Wonderland, weird but great!

Meeting with oncologist about the ribociclib went well. Got to finish rads first (9 left), then an oophorectomy and complete 28 days (from now) of trial assessment. So scans and blood work starting with a PET scan on Saturday and as long as I satisfy the trial criteria then I'll be starting it in July sometime.

All overwhelming but good! xx

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Renee.........I agree with ff that it would be a good idea for you to access the private group. You will see it in the list on this first Living with Secondary Breast Cancer page: https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/ct-p/secondary_breast_cancer  

 

Until you are accepted it will show as zero threads, and if you click on it you won't be able to get in! If you know how to login/sign in......there is a button at the top right........ then login. Then when  you click on the private group in the list you should get to a page with a question 'Ask to join the group'.

 

If that doesn't work then you can contact the moderators direct by email: Moderator@breastcancercare.org.uk. Tell them you want to join the group. They will ask a few questions in reply like your password etc. Then once accepted.....they will tell you when that has happened.......you will find you can enter the private threads, after logging in. Magic!

 

There are a lot of different threads in the private group to try out. I think ff will be checking the gardening thread!

 

Take care. I hope the above doesn't sound too complicated! It is simple really, and once you are accepted you can go into the private threads any time, after logging top right. I think you will then be able to send private messages too, to individuals, that don't go on the public thread, using a little envelope that should appear at top right. I can do it, and I think it began when I was accepted for the private group.

 

Take care and I'm glad you gave the bone threads a go! It's a friendly, chatty and supportive group. And knowledgeable too!

 

mo               xx

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Hi everyone had a lovely day out with husband, girls, their babies and one son in law today. We went to a beach that we've taken our daughters to since they were tiny. Got a bit emotional at one point, but it was brilliant. We've decided that, unless I deteriorate, which I won't, that we will fly to Majorca. It's not a long flight so fingers crossed. I love gardening too and always make my own hanging baskets and tubs etc.  I also grow veggies which I get a kick out of growing and then eating. It's great looking out in a pretty garden, lifts my spirits. My hubby also has diabetes and it can be a bit frustrating as he can't necessarily now do what I can't, which sometimes does mean I push myself too far but I have got a lot more sensible. We also have a blow up hot tub in the garden which is great when the weather is hot. Bubbles ha ha. 

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Renee, I wish I had your flower expertise here! I live out in the woods on the North side of a hill. We get some sun, but not in the areas I need it! I would love to have someone knowledgeable guide me. I have a lot of natural ferns. Hosta love it here. Unfortunately I can't put hosta in the front of my house bc the deer think it's their gourmet salad and invite friends over too. I had a bank that I wanted to cover in hosta, I bought some planted them and in the spring when they came up my husband said wow, did you sed how big your host a got in just a couple days. I went out to look and they were completely gone. They ate all of my neighbors the same night. The next spring they came back up and I moved them behind my house. They are gigantic. They weren't supposed to be but they are. They share about 7 ft  across and 3 ft high. One buck found them at the end of last summer, but that was the first time. I hope he can read bc I'm putting out a warning sign. I have one perennial bed that I'm working on. It's a constant mess. I think I'm going to pull the plants this weekend . Hit the weeds with the weed eater, put down black plastic, put plants back and mulch. My daughter thinks that would be easier than pulling the weeds. I'm going to plant two bushes too. In other areas, I've decided I'm going to start to do pot gardening!  Lol,  that's flower pots! I'm going to relocate some ferns and try to encourage them to spread. My property has a lot of rock. Just when you think your planting this nice evenly spaced row you hit a huge rock. One rock took my husband and both my boys with pry bars. Then we had to go buy dirt to fill it. I love our property but it is getting to be a bit much for us. Unfortunately, paying for help isn't in the budget. Hubby isn't able to do as much either. He has lost 4 toes on one foot, and has what they call charcot foot. Its when diabetes does nerve damage, it then effects the muscles and his arch dropped. This then makes your ankle turn over wear you are walking almost in the side if our foot, plus the bottom of your foot curves the wrong way like the rockers on a rocking chair. He is at great jeopardy of ulcers and losing it, and has come close many times. Last year he had an ulcer on his good foot and it took 14 skin graphs to fix it ! I don't want him doing gardening!! I know you understand all this. If you have any wonderful planter ideas, please share them. If you ask our moderators, you can join our private forum .  There is a gardening thread. By the way, I live across the pond in the US. I live in Pennsylvania about an hour west (30) miles of Philadelphia. Enjoy your day. FF

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hi carolyn

thanks for reply ,i have always done hanging baskets ,one year i did 48 but not as clever these days and must admit it took me some days to deecide as never know from one day to next how i am feeling ,the same as all ladies on here ,but we take every day as it comes and try to stay cheerful and positive which is the main thing,

going for my treatment to day so will mention breast leaking to my nurse ,and see oncologist next week after ct scan so should get some answers from one or the other

must admit i feel lots more positive since being on this site so thanks again

take care everyone

renee

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Long day today at work. Our boss was fired a few weeks ago and we got a new one on Monday. A lot of adjusting to do and for some reason the seniors are quite needy, nasty and entitled!! Exhausted, cranky, and very impatient after today. 

 

Babsy, I'm sorry for this bad news. Hoping your onc has some plans up his sleeves. I don't know why f l y ing might be a problem, but will the ferry ride be too much for you? You need this family time to relax, but need to be strong to come back and ready to fight! Hugs!

 

Jellytot, I hope you got through everything today without being too exhausted. Keep us updated when you can. 

 

Carolyn, I had duck eggs once, but didn't notice any difference. I know nothing about the allergy part. If your chicken egg allergy is life threatening then I would be checking out allergy facts on duck eggs before I ate them. Just eat chocolate it's easier.

 

 

Renee, Your story cracked me up. Our son had a friend who was blind and oh the stories he has. 

#1 Someone in the laundry room at his apartment complex asked him how he did wash? He told them like any other man! Stuff it in and pray it comes out.

#2 He went to the barber shop with his white red tipped cane. Sat down when barber was finished he held the mirror up and asked Shane how he liked it. Shane said I don't kniw I can't see it. Barber said I have you perfectly lined up to see, but adjusted the mirror. Then asked Shane if he could now see and how did he like it. Shane finally said I'm blind!

#3 Shane and his wife were swimming she is blind too. A lady came running out screaming blind people, blind people that's the deep end. Shane responded with blind people can swim!

 

OK, I'm falling asleep. I know I wanted to say something to someone else, but can't remember who. I will take another look tomorrow. Night ladies! FF

 

Quickly editing! 

Suze, It was you I missed. In our public schools in our town the boys and girls aren't separated for sex-ed. Wow was there a lot if opposition when this first came about!!

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Yes, Carolyn...I had some without realising till afterwards..they are quite nice xx

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Silly that I am these days but son gave me some duck eggs as i!m allergic to chicken ones  but I keep looking at them and can't get interested ...think its because they have come out of a ducks b u m ....its putting me off.

 

Has anyone found them OK if they are allergic to normal ones? Apparently twice as much omega oils etc so a lot more healthy.

Xxx

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Silly that I am these days but son gave me some duck eggs as i!m allergic to chicken ones  but I keep looking at them and can't get interested ...think its because they have come out of a ducks b u m ....its putting me off.

 

Has anyone found them OK if they are allergic to normal ones? Apparently twice as much omega oils etc so a lot more healthy.

Xxx🌝🌝

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Renee
What an inspiration you are ..I couldn't do one basket even as I would ruin my nails!
Maybe you should ask Monty Don for a job as his assistant !!
Xxx
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Suze
Don't envy your job at all ..my grandchildren are 12 and 13 ..between mobile phones and kindles etc the only conversion is "don't know" or "fine" at best !!
Well countdown to end of term so it's about 40 sleeps !!!!
Hugs
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Carolyn. Our babies were found under a mulberry Bush when I was growing up, which is a little confusing in inner city Manchester in the early 69s. There weren't many bushes and trees! The sex ed is delivered by the school nurse but I have to keep the boys occupied whilst the nurse talks to the girls. My bit starts next week in science. These boys are the worst we've seen, so much so that the head says we're all going to Manchester to celebrate next year when we pass them on to high school. 

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hi all,

its been a lovely day and have had my son grandson and granddaughter,it gave me a boost ,plus the sunshine so managed to sit in my chair with a small card table beside me ,plus compost ,plants and baskets and believe it or not i have managed to make up 25 hanging baskets,i am so pleased with myself and feel great for managing the same.

i have always done them but last year because of the situation i was in ,i didnt even manage one,i do 6 each  for both sons ,9 for myself ,and one each for the four grandchildren,given me a boost before my treatment tomorrow.

to the rest of the lovely people on this site ,i wish you all well and the best you can feel,we all have ups and downs yet you ladies appear to bring yourselves out of each others pain,which is great and so pleased i found this site and will always thank you as i know i am going to be able to talk to you ladies where sometimes can not talk to family.

love Reneexxxxxxxxxxx

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Babsy, sorry to your results weren't too good, hopefully your onc will get you on the right treatment plan soon and blast the little blitters away! Please try to not let it spoil your much looked forward to trip away with your family, family time is so precious!
Hugs Janette xxx
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Oh suze
Hope u get some answers with your appointment ..wow sex education ..bet they could give you a few tips ..they know everything these days ...well they know babies don't arrive from a stork in a basket !!
Let us know how u get on.
Xxx
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Babsy, sorry to hear your news. Chin up and look forward to your holiday. I've never smoked but was quite ill once from just being in a room full of wacky bacci smokers so probably not for me. I'll stick to G and T. Hugs x

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Just got home from work so leg being rested on settee. Hope all went well today Jellytot, though I expect you'll be too tired to let us know yet. That's a long day and its very hot. 

I've looked at appointment letter for neurologist and I get the feeling the biopsy won't be done tomorrow because there's no suggestion of it on the letter. No number to ring. Waited four weeks now for this and want to know what we're dealing with. I did have bloods done for tumour markers on Monday so I suppose that might show something. Feeling hot, pained and grumpy and tomorrow morning, I've got the year 5 boys for sex education. Think I drew the short straw. 

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Babsy
So sorry to hear of your latest results ..I don't know what to say really but you just have to trust your oncologist to prescribe the best treatment plan.
Hopefully you will be able to enjoy your holiday by travelling by ferry but its a long trip for you ...could you not switch to maybe Cornwall or something that wouldn't include such a stressful trip and of course you have to think travel insurance etc etc.
Xxx
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Hi all

Just want to add my welcome to you Renee and best of luck to you jellytot and babsy. About to head off home now and looking forward to the sweaty train as our office air con is appalling. Sad thing is I have to walk via London Bridge which makes me tearful but makes me realise how lucky I am to be here .

Wendy
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Hope it all went well JT.  

I've had the results from my brain CT and MRI scans showing that the lining of my brain has cancer which has pressed on my frontal lobe hence the stroke like symptoms.  Whole brain radiation was initially suggested but now my oncologist is saying to continue with one more round of Cape and if that's not working there's another possible chemo. I'm also going to try some of the " sacred" plant. Throwing everything at it. She initially said  I couldn't fly, we booked a luxury villa in Majorca for all of our family to have a week's holiday to celebrate my 60 th but she's now said that I can but there will be a small risk. We had already decided we would drive and ferry if we had to because it's important to all of us to have this special time together. Hugs to you all xx 

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Good luck JT, you may have already been now though, been working today so only just looking at the posts!
Hugs Janette xx
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Hello JT, good luck! You certainly do have a busy day today. I hope it doesn't take too much out of you, but rest when you get home if you can - sometimes the fatigue can hit you afterwards. I hope the trial meeting goes OK.

 

Renee, loved your story about your Onc! Poor chap! It's a shame they all seem to move on though, isn't it? You spend time getting to know one, then sometimes never see them again. It can be distressing, to constantly explain things again and again to new Registrars - some of whom never read your notes properly. I think consistency in treatment would go a long way towards helping us.

 

Hugs. Barton.x

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Hi Jellytot, have cancer - see the world.Hope your meeting goes the way you want it to.
Bon xx

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Jellytot
Best of luck today ..hottest day of the year too but its zapping the unwelcome visitors .
Xx
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Wish me luck girls, tiring day today. First have rads at one hospital 50 mins drive away, then have my meeting with my trial team about the ribociclib at a different hospital an hours' drive from the rads hospital! Luckily I'm being driven but still... Today's rads is number 10 which is halfway through zapping. Bit nervous about the trial meeting but I know I always feel better once I'm more informed, so am trying to turn the nerves into positive thoughts. Hugs to all, JT xx

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Hi Bon,

thanks for reply ,i do try to keep a positive attitude ,if i didn't i would sit down and cry,but since diagnosis i have had some good  laughs ,one in particular

the first time i met my oncologist in january ,i went into his room with my son and daughter in law and we sat down ,myself right opposite him and in my wheelchair,he introduced himself as  ASH not his name of course but what he liked ,chatted away and he then said to me ,could you now stand up for me please??i answered no,and he asked WHY ,my son answered him and said ,mum only has one leg,,,poor man he was absolutely devastated and could not apologise enough ,me i sat giggling and he then said ,i am honestly terribly sorry but why are you laughing,i found it funny Bon ,but felt so sorry for him as well ,i have never seen anyone so upset and since then we have had a laugh about it every time i see him,even when i was admitted for a reaction to the chemo he introduced me to his registrar by saying ,this is renee walton and renee still has only one leg,,such a lovely gent but he has left now so i have a new oncologist next week to meet and hope he is just as nice ,but i look up on it by thinking maybbe a new face will have new ideas.

once again thank you all for writing to me ,it is appreciated .

Renee

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Hallo Renee, lovely to meet you and your dog, glad you have joined us, your positive attitude is catching. Hope the news is good from all your appointments 
Bon xx

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Renee, Yellow almost 12 year old lab here. It's going to kill me when we lose her bc we have decided she will be our last dog.  Maggie is the typical laid back lab. Like Carolyn we provide alot of doggie day care. Daughter has two dogs and oldest son has one. Our other son has 3 but we never get to watch them. His next door neighbor does it. They help each other. Got quite a giggle picturing you draped over your dog. Good luck with all the appointments. FF

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Renee
Glad u are the owner of a German shepherd ..we have had three over our 44 years married, beautiful clever dogs ...not so popular these days ...it's all about the small handbag dogs now isn't it ? Some so small you want to pop them in a sandwich with mustard !!!!
We don't have our own dog these days as do doggy day care for our son's dogs ...a huge boxer and a black lab ..bless them and we don't have to pay vets bills either.
Well the hospital visits are going to keep you busy ..but at least as you say ..it gets you out and about .
Hugs xx
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hi funny face

i just want to thank you all for the kind replys and advice ,what a wonderful site i have found ,so pleased to be part of it .

i have been for heart scan today and everything appears ok although the lady did say the oncologist goes into the finer points before deciding if i carry on the herceptin or not ,but also have bloods on monday ,c t scan wednesday and visit oncologist friday ,all next week, this week i have my three weekly treatment so in all visit three different hospitals in less than two weeks ,but hey always a change of scenery and also lots of people worse off than me ,so just take it all as days out for me and keep the ambulance service busy ,mind most times my family can escort me and take me there but one part are away on holiday and the others are on wrong shifts,i suppose i could ride on my german shepherds back ,as she is big enough and would certainly let me haha.

willl keep posting and once again thank you all for replying .

Renee

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Carolyn, I'm with you prefer squirts, runs and trots even though I can spell diarrhoea. Still easier and I like those words better! FF

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Welcome Renee, Don't worry we all have long rants every now and then. We just have to get it out! Most of us have lovely families, but they just don't get it! We talk about any subject too. It's the way to help! We also have a private forum that you can request to be part of, after posting for a bit. The moderators will approve you after you post for a bit and they feel you aren't a scam artist or robot! On the private forum it's safer to feel more comfortable and you can spill it all out! Like others have already said you need to talk to your oncologist. The one thing about being diagnosed from the beginning with secondaries is keeping your breast and using the reactions of the breast tumor to guide you on how treatment is going. With that being said sometimes this doesn't work bc our tumors can be different compositions from each other. You are one strong woman going through all this at 76 and taking care of yourself. My goodness you don't need all those trips to the loo! That is a lot of Imodium. Don't worry about the dust in high places. Nobody can see it!! The windows, only have to be clean enough for you to see out, so you can watch your neighbors! Ha ha ha! Just kidding! Take care and best wishes! FF

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Oh Barton
Thank goodness for you and sensible logic of a difficult word to type ...I think I will stick with ..trots, squirts and runny bum though ...glad I was never a medical Secretary !!
Newbies ..we are not usually so graphic ..it's me again lowering the tone of a respectable thread !!!
Xxx
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A quick mnemonic for you all (heard on the Ch5 programme, "GP's: Behind Closed Doors"). The way to remember how to spell diarrhoea is the phrase D,I,A,Run,Run,Hurry,Or,Exploding,Arse! (if I can use the word Arse here!). I love it, and have never forgotten how to spell what is probably the most difficult word in the English language!

 

Hugs and best wishes to all (especially the newbies). Barton.x

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Hello Renee
So glad you joined us .we have all age ranges here ..ladies in their 30s up to 70s so regardless of age ..we are all dealing with the same little unwelcome visitors.
We share advice, kindness and a bit of banter but this forum is a welcome support on the bad days .
Hugs xxx
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Hiya suze
Well "nurse carolyn"checking in ..that's a joke as I'm the most useless person ever with medical things !!
It's sort of good and bad results ..a slipped disc is painful but the Mets are small ...maybe they can send u to a chiropractioner to help with that ..too much bungee jumping

You must be ticking off end of term now ..4/5 weeks and u will be able to rest a bit more.
Nurse Carolyn highly recomends a McDonalds and a magnum ...
Hugs xxx
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Good evening ladies and welcome to Renee - sorry to hear you've been having such a hard time. There's a lot of support on here. So keep in touch.
Positive meeting with oncologist today. Still not had biopsy but she says mets on spine are so small that my slipped disc is the bigger problem. She thinks I may have had them a while and my previous cancer drugs have made them smaller. Not told my family til I have more information but we're looking at long term so I'm still aiming for 91. Hugs to everyone. And as a bonus pain not too bad today because I listened to nurse Carolyn x
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Renee,

 

Just to say welcome to the 'bone' thread. You may not have bone mets, but the ladies here are all very well versed in this business and will have lots of good advice and suggestions, often based on their own experience, but also based on what they have learnt from others or from their oncs. Many people have more than bone mets only. So don't feel you don't belong here. Also you will find everyone very chatty and friendly. We all have this strange condition to share, so it gives understanding. As carolyn said do feel happy to moan and groan as well as asking questions. We all need to moan and we all understand.

 

Well done giving this thread a 'go'. Do drop in daily, and post whenever  you feel like it, or at least just read. My own little bit of advice at this point would be to jot down notes as  you build up to your appointment on the 23rd, and then take the notes with you! Try and bring a friend as well. I do. It is very easy to forget things during an appointment. Ask everything. And if you have ideas do mention them. i think we all learn to fight our little corners. It makes sense.

 

Take care for now, and welcome!

 

mo                x

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hi janette ,

thank you so much for reply ,i just felt so down and needed someone to explain myself to ,and can not always feel i want to talk to family about these things ,they are a brilliant family but i tend to keep personal things to myself ,so this is why i am gratful to have contact with you.

i will certainly tell my oncologist when i see him on the 23rd of the month ,i have told my breast cancer nurse so she is aware and i manage to dress it myself ,although the district nurses pop in to make sure i am ok,i'm just worried as it dried up completely just to return so hope it is not a bad sign ,but i will know after the 23rd and it is also a new oncologist as mine has gone off to work at derby ,so maybe he will have a complete new outlook on it ,although mine that has left was brilliant.

never thought i would get to 76 and all this happen to me in the past 16 months when never ever been in hospital before,or been ill really but guess we have to be ill at some point in our lives.

thanks again and take care 

Renee.

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Hi Renee, welcome to the forum, sorry you have had to join us though.
You have had a really tough time of it haven't you, having diarrhoea is horrible at the best of times but having to deal with it with limited mobility must be especially hard. I would definitely be making sure your onc was informed about the bleeding and discharge that has come back!
Take care and feel free to ask any questions or to just off load to us at any time.
Hugs Janette xxxx
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Congratulations Nicky on the news of becoming a grandparent! It must be so exciting especially the first grandchild, I can't wait for the day our daughter comes home with the news that she's expecting!
Hugs Janette xxx
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thanks so much caroline ,i will tell oncologist ,i have rung my breast nurse but she just said these things do happen and if its only a small amount ,not to worry too much,thanks again
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Re: Bone mets - please join in

Hello Renee

A very big welcome to the forum and a busy thread where there is so many kind and helpful ladies that can hopefully help with your query.
Well you are having the very best treatment with the h and p regime but the "trots" ( sorry can't spell the proper name for it) is awkward for you and everyone.
The bleeding I think you must tell the oncologist when you go for your next treatment.
I am sorry that you are having such a rough time with everything but stay with the forum and you will find help here from real people.
Feel free to rant and rave ..24/7 ..that's what we are here for.!!
Xxxxx