Thanks for the info on scars Jean. I think I probably need to massage more often and for longer to make a difference, I’m always too impatient!
I’m sure going foob-less will become more natural the more often you do it.
Tai chi sounds good, especially the natter afterwards! X
Thanks for the info re scars Feenix. I must massage a bit more i think. I too have a bit more tissue keft then i imagined j woukd so almost a cleavage on that side but i have quite prominant ribs so i think its those which cause the shape?
Breast cancer on paternal side ?? I wondered that to as k had an aunt on both paternal and maternal side with bc but Onc didnt seem to want to know just said if it had been my mum and her sister with bc then it could be inherited but as mum hasnt it isnt and discounted dads side. I think im going to ask again. I havent been offered testing? When do they offer that?
Thanks cdc thats really interesting, i am going to ask at my appt on Wednesday. Sorry to hear the fatigue is hitting you badly, hopefully after a week or so youll pick up. Has the nausea been better?
Oh yes CDC T totally wipes you out. But the second dose has definately been better on all fronts, still feel tired though, never wake up feeling refreshed these days. I was wiped out by the coffee morning on Saturday and had to have a sleep later. Biggest thing from this cycle has been the painful nails and numb thumb. I am still trying to get hold of somebody at the hospital to discuss this. My ONC wanted to know before next chemo so that they could reduce the dose, but I can’t get hold of her/ her secretary, i have left another message today, and my ONC nurse has disappared of the face of the earth and her voicemail still just says “due to unforseen circumstances Rachel is not available”. If I can’t get hold of anyone I will have to ask at the breast clinic on Wednesday and I know they’ll say “its a oncology isssue” so I’ll be running around in circles again. I just don’t want permanent numb hands!
I had a good read of the information you supplied regarding the genetics. I think I have worked out that I have an aunt on mothers side (so thats a level 2) and an aunt on fathers side (another level 2) so it doesn’t seem I fall into any of the categories in the NICE guidelines, but I am still going to ask for clarification.
I hope you feel better soon with the T side effects, have you lost your taste yet? Hopefully you won’t, mine is back now! Yayyyy…
Kip
x
Finally somebody from the hospital rang back. The secretary was away on Friday, the ONC is away today, so no answers but they are aware and will ring me later this week! Still don’t know whats happened to the nurse? She was lovely too. Typical.
Feenix - I get out of the washing up by telling my family I’m not allowed… gloves or otherwise!! Hee hee. Got to be a positive in all this hasn’t there.
<li-spoiler>:smileyvery-happy:</li-spoiler>
Kip x
I didn’t know about feta either, just had it for lunch! Oops, i just got told to follow a “pregnancy style diet” no specific s really, . Oh well lkke you say nothjng has happened ?
Hello all!
I’m at the airport waiting for our flight home after what has been an absolutely wonderful break from it all. The best part was swimming in the sea it felt so liberating and good to be alive that I even started to cry! Although I seem to be doing this a lot lately, the tears come from nowhere. The added bonus of the sea was how my am felt afterwards, even though I only did a few strokes the tightness disappeared. I will have to start swimming when I get back!
Kip your nieces coffee morning sounds great and worthwhile with the money raised. Everyone does seem to have a cancer story, you just don’t know what people have been through. When I returned to choir after summer break one of the alto’s came up and showed me a picture of her in a cold cap. She is younger than me and told me she had BC 3 years ago, her children were 2 and 4 at the time. Also at my daughters prize giving I went to say goodbye and thank you to a favourite teacher who told me she had BC 14 years previously. My daughter got quite emotional hearing this.
I would never have known what either of these wonderful woman had been through if it hadn’t happened to me. We never really know what is going on in other people’s lives do we.
CDC thanks for the heredity guide. I have 2 aunties so they are second therefore not relevant, but interesting it doesn’t say maternal/paternal side. I think I will try to contact my aunt just to try and find out if there is anything else I should know. Sorry to hear you have been struggling so much with your fist dose of T, hopefully the next cycle will be kinder. It’s a shame you didn’t hear your daughter sing, a 400 strong choir must be amazing! Hopefully you will have another opportunity when this is over.
Re feta and chemo I think it is mostly pasteurised in this country so ok, I had the same dilemma!
Re numbness my toes are still numb now, It’s worse in the morning but hopefully will get better!
Jean my hip is still intermittently playing me up, but still walking ok. I have physio booked for Friday so might attempt a run or two soon. I feel a bit annoyed that after all my body has been through the last few months it is something unrelated that is preventing me from running!
I think it is good for us mentally to keep busy and productive but physically our bodies seem behind at the moment don’t they?! X
Swimming sounds fab Michelle i definately want to start once this is over, i have a post op swimming costume ready and waiting. You are right we dont know what people are./have beexn through do we, ive just been out shopping and saw a lady with a very short haircut, almost skinhead short and i kept wonderinf are you post chemo? I would probably never noticed before.
Feenix i am goingto try coconut oil, sounds good. How was the radio programme?
Kip x
Sounds interesting I will have a listen! Thanks Feenix… now off to hospital…
Hi,
Yes turned out didn’t have much option regarding the surgery, I’m havinjg level 1 lymphs removed on 23rd Oct, day surgery hopefully. I could have had them blasted with rads but the surgeon recommended having them removed as it then leaves radio to the armpit as a weapon should I require in the future. She said its easier to blast with rads in the future than operate after rads. Unfortuntaely my original surgeon has left so I’m not sure who will perform the op, but the surgeon I saw today said she isn’t expecrting to find anything in them… but its belts and braces.
My appointment was running so late (should have been 10.30 didnt get seen until 12) so I didn’t have chance to ask everything I wanted as they were rushing, so haven’t found about genes or future mammograms v MRIs. I’ll have to add that to a list again! Felt very rushed through today!
CDC - how did you find the high schools? I remember looking round them and it seemed such a big step but now my son is at college! Still haven’t had any contact re my thumbs… have to chase that again this afternoon…grrrr
Kip
x
That is frustrating when you have to wait so long for your turn but then feel rushed but like you say Kip add it to the list for next time. I found out I had Level 1 and 2 out for lymph nodes. Although I think I was surprised how much discomfort here was post op and that it took a couple of weeks to start feeling more myself again I think this was just because I wasn’t prepared for what an op felt like! Now it all feels pretty good apart from tightness on the arm if not stretched and it still feels numb on my arm. I find it odd that no one has actually looked at my breast or arm since the op apart from the district nurses the first couple of days when I had a drain.
Good to hear you are taking it easy CDC, traipsing around high schools does sound very tiring. We take our youngest daysghter to her new uni on Saturday and our older daughter goes back on Sunday. Ahhh empty nest!
I was checking my daughters were ok about what was going on with me and treatment and the younger one asked if it could come back? It was horrible saying yes it might but hopefully it won’t. It’s horrible to think of them worrying about us isn’t it? It’s our job to worry about them!
I think I have some coconut oil in the cupboard I might also give it a go. I love the thought of us all smelling like a tropical island! X
Hi Feenix, I have 4 weeks after last chemo before surgery and then probably another 3-4 weeks before radiotherapy starts. Sp a little break between and hopefully time to celebrate end of chemo before the next surgery.
Sounds like you are still as busy, enjoy the Tai Chi… I’m sure you’ll be very graceful not like a windmill at all.
Kip
x
It must have been very upsetting reading your daughters note. It is difficult to explain, finding the balance of honesty and not scaring them. It sounds like you said the right thing. I remember reading someone’s post here saying they had BC a year or two ago and she mentioned it to her teenage son and he said “oh yes I’d forgotten you had that!” I look forward to my girls forgetting this ever happened.
I hope the fatigue eases off for you a bit.
I hope Monday goes well Kip, it will be a relief to have chemo done. My surgery was 4 weeks after chemo but I think rads is usually at least 6 weeks but I guess it varies between health boards.
Jean Tai Chii again? You are going to be an expert before too long! Well done for doing all your exercise and massage, I’m not surprised to hear it was too much I feel like I have to spend so much time on myself at the moment. What with massaging my arm and three scars and doing arm exercises, it’s all so time consuming and today I went for physio on my hip and she’s given me some exercises to do! On a plus side she thinks it is a soft tissue injury so should get better and hopefully not stop me running.
I feel like I’m lurching from one hospital appt to another since I’ve been back from Spain. I had a heart scan yesterday. I have to have it every 4 months whilst on herceptin and should know results on Monday. The scan itself is fine but I have to have a radioactive injection beforehand which just can’t be healthy can it?! I couldn’t go to choir either CDC as I’m not allowed in enclosed spaces with children or pregnant women for 24 hours and didn’t think I could ask if anyone was pregnant!
Today I had my rads planning appt. on a plus side the appt was quicker and easier than I thought and they said rads will start in about 3 weeks. On the down side I found out I have 4 weeks of rads because I have to have a booster week. Oh well I’ve done chemo, how hard can this be? I did come out feeling quite optimistic, as if treatment is nearing an end and that I’m going to be ok.
Busy weekend ahead driving to Southampton tomorrow to drop off our youngest daughter, older daughter goes back on Sunday so our house will be very empty. Although I’m looking forward to less washing, ironing and hormones! I will really miss the girls being around, especially if I’m feeling down. With the girls around I have to keep positive but it will be easier to mope with them here. I will have to keep myself as busy as poss.
I hope everyone has a restful weekend with a bit of fun thrown in xx
Hi Michelle, sounds like you are very busy with children leaving home, i hate it when the house is quiet gives me too much thinking time.
Cdc, j can understand how your daughter’s letter made you feel, my son was upset last night as his girlfriend was “feeling down for no reason” and he was letting off steam to me and said “whats she got to be sad about my mum has cancer” and just hearing him say it made me feel terribly guilty and really brought it home all over again. I see him carrying on as normal and thinks hes copjng and then realise they must be worrying underneath. I hope for a day when they can forget about it all.
Still no joy with onc re my thumb apparently just have to wait til chemo to see what they gave decided!!!
Kip
Xx
Thinking of you today Kip. X
I’m with you Jean on giving out personal details, I’m the same. Much to lots of my friends annoyance I don’t ‘even’ do Facebook! I often think I could do exercise dvd’s at home but I never do. I enjoy having other people around and at home there are always distractions like ironing, dinner etc. I do enjoy running on my own but that’s different because if you run somewhere you have to keep going to get home again! I ran 3.1 miles today and feel over the moon about it! It was so much easier than the couple of runs I did post chemo. My muscles ached and I struggled for breath then, it felt like I was running through cement that was setting! Not that today was easy but it just felt like I hadn’t ran in a while.
We don’t have a Haven centre here either, there is a Maggie opening in January but I’m hoping not to need them by then. We’ll see!
i hope you get your shoulder sorted Jean, physio is good but you have to do the exercises at home which again I can never be bothered to! Having said that I have been good with the arm ones. I’m going swimming tomorrow to give it a good stretch. Have you really never swam in the sea? Not even as a child? Is that because you learnt to swim when you were older?
I had my herceptin injection today. I go to a mobile unit for it and they had just changed to a new one and the computers weren’t set up so they didn’t have my heart results. I’m not anticipating there being a problem but I wasn’t anticipating getting cancer. You lose your faith in your body and health don’t you?
So day one without my girls around. Youngest seems to have settled well and is having fun, oldest does struggle being away from home and FaceTimes us everyday until she gets in routine! Running this morning has been a great start to the day so I’m sticking with positive thoughts and I’m off to write a list…
Hope everyone is feeling good xx
Good your appointment went well Jean. Will you just have yearly appts from now? That must feel strange but also a relief not to be running life around appts.
I have drawn up a list of things to do and am keeping very busy. I went swimming today, I only did about 12 lengths but I really recommend it for the tightness of the arm.
I’m going to run tomorrow. My aim is to use these 3 weeks before rads start to try and get some fitness back and to get the house a bit ship shape!
Hope everyone else is doing ok xx
Hi All,
Just remembered (well actually remembered during the middle of a steroid induced sleepness night) but meant to pass this one on… at my appointment with surgeon the other day, she was talking about helping with scarring under arm and inflamation and scars etc and she recommended that you roll up a clean pair of socks and pop them under your arm pit and keep them tucked under there applying pressure to the area. This apparently helps with drainage and flattening of scars etc. She also said if you have a little 
shaped pillow you can use that, just keep it under there as much as you can. I know most of you have already had your surgery and this may be a little late, but I do have the heart pillows and usually sleep with one tucked under my armpit even now but will definately be trying it more after the Node clearance in October, anything to avoid swelling etc.
Kipxxx
Cdc My op is at the Marsden in Sutton on Wednesday on NHS.x
Wow CDC - that sounds eventful but an amazing outing! I’m so tired too, just want to sleep for 24hours and wake up refreshed but thats not going to happen. Now the steroids are done and I’m winding down the other meds hopefully the tiredness will start to get better. At the moment if I felt like this when I have my operation in 3 weeks time, I don’t know how I will have the strength to recover, but am remaining positive that this is my low neuts week and by the weekend I’ll be fighting back!
Feenix - hello, how are you doing?
Kip
xx
Hi,
CDC - that sounds a lovely place to go, even if just down the road, a change of scene is so welcome isn’t it. I am just so exhausted at the moment, this last T has really hit me hard, think they may have doubled the dose not cut it!!! The steroid downer seemed to have been delayed too, last night I lay awake crying into the darkness, not sure why, just so fed up with it all. My OH keeps saying, oh well you don’t have to have anymore chemo, and I know he’s right but it still doesn’t stop you feeling rubbish at the present moment does it. I look in the mirror and don’t recognise myself anymore, and I know thats vanity but its just another reminder of whats happening… OMG I am on a downer aren’t I…must buck up and do some work, and make a lemon drizzle cake (as ordered by the kids)… enjoy the break and hope the pre-chemo goes well and you get your first P (is that what its called?).
Feenix - you sound like you are doing fantastically well. Keep up with the hooping, I am intermittently doing it, I need some help in all areas too… clothes are getting tight!! Hopefully my rads will be done by Xmas, all depends on appointments, so not holding my breath, also have to have full movement back after ANC before they can book the planning. 3 weeks today I will be having the op… gulp!
Kip
xx