Anyone starting chemo in July 2013? We are now the July Junkies!

[NetteW]

Hi All the 2013 July Junkies,

I am just ending my first hospital free year for four years.  It has been great.  I hope all the 2013 July Junkies have also had a good year. Love and beat wishes to everyone. Wishing all of you a happy and healthy 2016. If you are still not recovered I always light a candle for us all. Nette x 

[bumblebee63]

Hi Nette, great to see your post! I do keep looking on here, seems so long ago now since the dreaded 2013! Glad you are doing well, I am well also, Ian is still only managing reduced hours at work, but is off again at the moment following some nerve block injections. Nothing much to report, which I suppose is a good thing! Life is plodding along nicely which suits me fine! Ive put on weight unfortunately which I cannot shift, still on steroids though! Hoping everyone else from our july junkie days is doing well, nice if we all checked in on here now and then but I know some probably may not want to be reminded of the bad times.  anyway time to watch the new bake off on tv, so hello to everyone and enjoy every day! Xxxxx

[NetteW]

Just in case anyone else checks in with the forum up grade.  I hope everyone is doing well. I suppose we all have to live with our diagnosis but I hope everyone is having a great time.

I am well and continue to fit in as much excersis as time allows. We feel that after 4 years of retirement this is our first cancer free Year and we are getting loads done in the house and garden. Next year, hopefully, we will have caught up all the jobs and we will be able to play.

Love and best wishes to you all but particularly to my Cottingham buddies, Bumblebee and Julie hope all is well with you both and your families. 

Nette 

[orangecat]

Hi Nette, Bumble and all,

It is really good to hear you are both doing so well. Nette your energy is amazing.  Bumble so pleased your 

hub is recovering from that nasty accident. 

My first check is dragging on,  as I had to have a few scans, get results on Tuesday. Then I dont have to see them for 6 whole months, bliss.

Had the last of my curls cut off last week and really like my new style.  Need to shed some weight but that isn't going to happen when im worried about my job, oh the joys of working for a London borough.

Take care JJ's love Kat xxx

[NetteW]

Hi Bumblebee and all the rest of the July Junkies,

I have had my annual check as I was getting so worked up I rang the BC and got an early appointment. I started the journey in March 2012 so I always think of the years against the first cancer not the second. As I have no boobs the check up is pretty rountine. I am sure that I would have to present with a problem before I got a CT scan. As it is I saw my lovely breast nurse and she is organising an ultrasound on my armpit as I have some upper arm puffiness. I just haven't been doing my excercises and am paying the price. I get a new compression sleeve tomorrow and hope that with massage and excercise I can knock it back into shape. 

I hope and pray you all sail through your annual check and you are all getting back to normal. I have had my third haircut and am still counting them and excited. Eyebrows are still sparce but so is leg and underarm hair so I am not complaining. 

We are in the throws of organising a narrowboat trip before Easter to celebrate my 65 birthday that sounds so old so we are also planning another cycle tour in Holland.  This year it will be 9 days straight cycling without the two day break in the middle which we had last year and an extra day. Packing for 9 days in two panniers will be a challenge in its self. But shows what we can do.

I am still on Letrozole and getting manageable hot flushes. Trying to loose weight. It would be nice to drop a couple of stone but just to get down to post chemo would be nice. 

My very best news is I was given a stick on protheses. It is a game changer. It feels normal to me and to hubby and grandchildren. If you are offered one grab it they are all on three months trial so you have nothing to loose and lots to gain if you like it as much as me.

Good luck to everyone on your annual check.

Bumble great news about hubby. You have been on my mind to ring. Yes we must meet up this summer. Julie if you read this I hope you are well and hope to hear from you.

Best wishes to all the July 2013 we are survivors. 

Nette x

[bumblebee63]

Longtime since any of our wonderful group has posted so I thought I would post a brief hello to everyone! Got my 2nd year mammogram appointment through for 2nd April 2015 so just starting to feel a little apprehensive.  As we all started our chemo together I wonder if  any of you are also approaching check up time? I recently had a ct scan on my lungs at the request of my rheumatologist for my dermatomyositis as I had been getting a bit breathless, and it showed some lung scarring, however the consultant told me it is a result of the radiotherapy so nothing to worry about. Phew, got a weeny bit worried for a while!

Well the husband has just about recovered from the fractured back, he has gone back to work but only part time for now, but its progress. Cant believe ive been back at work fulltime for almost a year now, how time flies. I feel pretty good, still on the steroids so the weight has crept up and I detest my wobbly belly and chubby face.....but cant be helped! Now having to blow dry and straighten my hair every morning, its almost back to the pre cancer length, I find myself almost wishing it was still cropped short so I didnt have to look after it...but then I look at the photos and realise I look better with more hair!

I hope all the july junkies are also doing well and getting on with their lives, people seem to think we are all back to normal and fully mended but im sure you all agree that the fear and uncertainty is still lurking .......

Nette, hope you and Chris are well, we will try and see you this year in sunny scarborough! Xx

Love and best wishes from bumblebeexxx

[NetteW]

Hi Ladies,

It must be a sign that we are all at last moving on that there have been so few posts this year. It is now a year post chemo and radiotherapy. I have been on Letrozole for just over a year with few side effects. I still have a few problems from my 2012 bc and recon but on the whole that is all behind me. From the 2013 bc I still get a burning pain in my armpit and have a fear of lymphadema. 

I have completed my training to be a Duke of Edinburgh Award expedition assessor, starting next summer. At the training I feel I past another mile stone. I didn't mention cancer at all. 

Gosh I hope everyone else is feeling as good as me.

Piggys I do hope that you get your boobs sorted. If it is any comfort. My operation to remove the 2012 seroma with recon reduction this summer was a great success. When they make a mistake I felt they took extra care to try to sort once the mistake was admitted.

Kat and all the heciptin girls I think you should all be finished now but no doubt it will take a bit of getting used to all this extra freedom. I was given a very interesting stat on HER2 by my BN from my oncologist. Most recurrence in her2 are in the first 2 years. That might be worth checking out for peace of mind.

Julie, I do hope you and you family are now settled and the girls are ok. I hope you also got a brilliant job by now. We wish you every happiness.

Bumblebee, I hope Ian's back is now healed and you are both free from hospitals.

Would you believe that I am making the trip to Cottingham again. I have to have root channel on a tooth but my dentist could not see the root so he has sent me to a consultant who uses a microscope to have it removed. It was weird driving past Castle Hill.

Finally if anyone uses a prothesis I got a stick on from my BN in October. It is wonderful it feels normal. It is reliable in that I can walk around without a bra, I can wear normal bras, it is great when excersising as it moves with the body. Basically it is brilliant. The biggest and only down is you have to wash it every night to keep the sticky but a small price to pay. Ask you BN for a trial.

To all the July Junkies I hope we are all part of the current amazingly good survival stats.

Have a wonderful Christmas and a Happy and Healthy New Year.

Nette 

[piggsytrotter]

Good afternoon one and all

I haven't been on this site for ages, but having checked our thread thought, for completeness sake, I probably should update you all.So war and peace follows!

I had the 2nd mastectomy and double silicone implants on 23 July and as the weeks went by became more and more disappointed. The original (left) side not only looks like a deflated balloon, such that you can see wrinkles in the implant, but the right is much bigger. Consequently, right side fits into bras, left doesn't. It feels like I'm back at school having to stuff socks down my bra, although no point in buying any new ones until this is resolved.

Had appointment with PS at beginning of month. Working on the basis that he wouldn't want to leave me looking like I do, decided I would let him tell me what he thought first. He agreed it wasn't very satisfactory and so he's going to some lipofilling on the smaller left side and a bit of an uplift and reduction on the right. There is another problem in that left side's implant has stuck to my skin which is why I am constantly aware of the implant. He's hopeful he can do something about that, and so am I because it's quite uncomfortable. Not going to happen before Christmas, but that's OK. In clothes it's not so obvious I'm quite lopsided. But that means more scars, including two either side of my midriff which is where he'll suck the fat from to fill out the grapefruit! Nice.

I've also changed hormone therapy. I'm 64 and so was on Anastrazole. But the SEs were getting more difficult to live with. The joint pain was increasing and spreading from my hands and shoulders to my back, hips, knees and ankles such that walking Daisy was starting to become more of a chore than a joy. The mood swings and constant irritability were dreadful. Finally, in August I rang my BCN for the first time since this all began and asked for help. I've been on Tamoxifen for nearly 6 weeks and already feel so much better. Joint pain is receding and moods are stabilising, so fingers crossed. I expect you all know the difference between the two therapies but I had to look them up. Hopefully I can stay on Tamoxifen.

To sum up then, I'm waiting for another round of surgery, albeit on a much smaller scale, but generally am feeling not too bad. I'm not sure energy levels will ever recover so I do have to pace myself, but that's a small price to pay.

My stepkids are now launched on an unsuspecting world, daughter working in a spa on a cruise ship in the carribbean until next June(!) and son is nearly four weeks into his first job as a civil engineer. I have a lot to be thankful for.

NetteW glad to hear about your ongoing recovery and haircut. Brilliant. We had a week's holiday in Menorca in September. It was fabulous, and very hot. Am planning to go back next year.

Orangecat I'm sure it feels very strange not to be going back to the hospital, especially after more than a year. You'll soon get used to it! I found the 5:2 fasting diet amazingly effective and once I got into the swing of it, very easy. In fact OH and I still do it once a week to maintain, and it really works for us.

I hope all is well with Julie, Bumble and the rest of the July Junkies. You all made what was a horrible scary time more bearable.

Lots of love xxx

[NetteW]

Hi All

Well another recovery milestone now achieved. I had my hair cut last Monday. First cut since July 2013. I still have baby hair on top but the sides are stronger. Rock on.

[NetteW]

Hi Kat

jsut been on the knitted knockers web site what a great site.  i still like to wear a softy in the evening and have thought of wearing something in bed to balance myself when lying on my side.  I may try to knit one from the pattern provided.  i have never knitted anything to size yet so watch this space.

Nette

[NetteW]

Hi All

Well we are now back from a great holiday in Menorca. The weather was wonderful and so hot, we swam in the sea until the day before we left when i got stung by a jelly fish on my bad arm.  I was swimming next to OH and he missed the dam thing.  Anyway a visit to the doctor a 3 bad drip and a blood test plus a gell like cream on the actual sting and i left approx an hour later £65 lighter and as good as new.  So i don't begruge StaySure their premium. 

I have now got my stick on boob.  it is brilliant and feels just like my recon side, i can wear it all day and it never feels heavy.  if any of you with MX are able to try one I can highly recommend them.

Julie how are you and how is your cousin.

I seem to be surrounded with 2nd round of cancers it looks like my neighbour has secondary with marks on her spine but as she had heart problems she never had chemo.

A friend in Ripon has told me she was told on Friday hers is back.

Bumble how is Ian?  I do hope you are coping.

I don't know about everyone else i find i want to do everything today.  i have lost 3 years to doctors and hospitals and just want to make up that time. it is driving OH mad and a lot of it revolves round things i need help with like decorating or gardening.  Eh Eh

best wishes to you all

Nette

[orangecat]

Well done Nette and you jump up and down, which I presume you are doing at 3 in the morning looking at the time of your post. Have you tried http://www.knittedknockersuk.com/ some of the ladies on here swear by them.

Bumble I hope you and Ian are managing, please don't over do it and ask for help if you need it. 

Julie I hope all is well with you and your cousin. Like Nette I am part of a cluster family, do have a chat with a geneticist.

Piggsy I hope you have bounced back from your surgery.

Well I had my last Herceptin on Monday, 14 months of treatment since July '13 (not including surgery) Strange but I will miss the chemo suite and the wonderful team. Hopefully I can start climbing the ladders and feeling well, and losing weight now the steroids have stopped (I wish!!??) .

Sending lots of love to all the JJs out there, Kat xxxxxxxxxxx

[NetteW]

Well everyone, 3 years post reconstruction surgery I have been pronounced as good as new and discharged by my plastic surgeon.
It has still cost me nearly £37.00 to notify my travel ins, stay sure, that I have had successful corrective surgery that has got me to this point. Ha ho what is money. Without treatment I couldn't have taken it with me. So to celebrate we are going to Menorca for 14 days. Someone to cook meals, sea, sand and walking.
I am feeling uforic, amazing, I think it will take a bit to sink in.
I am sorry that some of you are still struggling and my thoughts are with you but today I just want to jump up and down.
Love to all
Nette

[NetteW]

Hi Julie and Bummblebee
Sorry to hear about your cousin. If it is any consultation I have 3 sisters 1 had bile cancer, other had bc, other one is ok. My mum had leukemia. But we don't have the genic gene so are called a cluster family but all the daughters can be mammogramed from 40 and are offered counselling. I was also reading about a new gel form of Tamoxifen that is rubbed onto the breast and has much fewer if any side effects. Both my daughters at 40 and 42 have been offered elective surgery and or tamoxifen so the gel may be a good option for them. My sisters both got cancer in their early 50s and I was 60 so they are taking some thinking time. I would definitely go for the genetics test so far I have had 3 intwrviews and am on a study. Fingers x your cousin is ok and the rest of your family stay clear. It is a bit of a lottery.
Wonderful news about Iam. Shame you are not getting any help. Do take care of yourself.
I think a visit to Scarborough would be lovely and we have 2 spare double rooms so you could all come for the weekend.
I am fine post op and very pleased with my new breast size. My fingers x that there is no fluid lurking round my tummy button but if there is it is a lot less obvious than the bulge I had under my ribs. So all in all a good result.
I am actually wondering if I need a haircut round the back. Do you know I am quite nervous of visiting the hairdresser. It is well over a year now since I have my grade 2 shave.
The breast nurse has offer me a stick on boob has any one had any experience with them?
Thinking of you
Nette

[bumblebee63]

Hi nette and julie, thank you, ian says thank you both too. I brought him home last night, took a bit of effort getting him into my little fiesta as he cant bend with the brace on! Anyway survived the first night and day, took me about an hour to get him braced up, down to the loo, back on bed to help wash and dress him etc! Then needed rest b4 I got myself sorted! We are going to manage without any outside care, it would hav taken too long to get sorted and he didnt want to stay in hosp plus they wanted him out! But they did deliver and fit a bed rail thing, a frame round the loo and raised seat. ive took a week off work, hopefully get into a routine by time I go back.  He is a little emotional at the moment bless him, worried about my health and finances. 

Anyway, as we know, life goes on,... sorry about your news julie, hope it all turns out ok, and hope you ok. Are you growing your hair long again?

Nette, im sure you dont need to lose weight, you are fine as you are! One day, when we are all well, we will have to come to scarborough and see you... a date for next year?.

Got to go now, the patient needs a drink.. lol.

Love bumble x

[juliemb]

Sorry, love to you all. Bumblebee I hope you are ok get well soon Ian. Nette I hope you're doing well too. I also hope that her op brings good results like mine, no spread xxx

[juliemb]

Hi ladies, not posting with good news I'm afraid. My younger cousin (42) is in hospital today for a lumpectomy. Her dx is only 15 months after mine and is identical. This has scared me in case there is a genetic thing going on as I have 2 daughters as you know. My cousin has no children but her sister has and my brother also has 2 girls. We are now going to push for genetic testing and I hope to god it's good news. It never ends does it. xxxx

[NetteW]

Hi Bumble,
At least you seem to be getting some support. Hang in there and make sure you have help before OH is allowed home. Please give him a big hug from us. I am still baking but slowed down a bit as my next battle is going to be to loose at least 2 st.
For cancer I don't smoke or drink. I eat loads of fresh food, veggies and fruit. I am fit and get quite a bit of excersis. My biggy was that I have been 2 to 3 st over weight for years. So that is going to be my next challenge. I don't want cancer again the last 3 years have been hard enough I don't want to fight this fight again.
We have been away at daughter's for the weekend in small very bouncy bed with a quilt that doesn't cover us both so bed now I have 3 days sleep to catch up on. I may even get 6 hours.
Bumble let us know if we can do anything we are not so far away.
Hope everyone else is now heciptin free with pic lines removed and moving on.
Nette

[bumblebee63]

Hi Nette

No he is still in hosp, cant come home till some equipment is delivered which the occupational therapist has ordered...bed rail, zimmer frame, commode for bedroom as we only have downstairs bathroom/loo. Plus she is trying to get social services to sort a carer to come in a morning to help get him washed dressed etc as I will have to get to work after an initial week off when he gets home. Needless to say I am shattered, been leaving home for work at 7.30, going through to hull from work to visit straight from work and not getting home till 9 pm. no time or energy to cook or anything! He is worrying about my health more than his own! He has had the brace fitted,,,, v uncomfy but he has to keep it on for 8 weeks apart from to sleep. He hates not being able to do his own personal hygeine stuff ( toilet issues and inability to wash himself !!). He is slowly walking with a zimmer or crutches so at least this is progress.  

Glad you are doing well, hope everyone is doing well too. 

No time to write anymore, bed is calling me but like you nette, I will be wide awake in the middle of the night still!,

Love bumble. Xxx

[NetteW]

Hi All, hope everyone has enjoyed a bit of the summer sunshine. It really feels like Autumn here but I am hoping that we will get an Indian summer with more sun in September. We haven't managed to take the caravan out this year at all. But are thinking of going in it to Northumberland in Sept so some more sun would be nice. Bubble I do hope OH is on the mend, home now and you got the help you need.
I am very interested in how and what after care is being offered in other areas.
I have had bilateral bc with double mastectomy and one recon. I still get an annual appointment in the breast unit and see a surgeon but no tests, scans or screening unless I have any symptoms. In fact I wouldn't get even that if there wasn't funding implications for the hospital. So I am wondering in these days of postcode care what you were all being offered.
Protheses
I have been offered a stick on prothesis as an alternative to the silicone one I have. I understand that with stick ons you use a normal bra. Has anyone had any experience with them? Following my recent operation for the removal of the large abdominal seroma and recon breast reduction I have gone from a prothesis size 10 to an 8. I feel so much lighter.
I am now just over 3 weeks post op and if this post gets a time attached you will see I am still waking in the middle of the night Luckerly I don't have to work in the morning.
Love to you all. Julie I hope you are ok and hugs and more hugs to bubblebee.
Nette

[bumblebee63]

Hi all, sorry been absent from here, glad your op went well Nette. 

More bad news from bumblebee land, hubby broke his back at work and was air ambulanced to hull royal infirmary. So I am at the moment exhausted from working full time, then going to hosp which is 20 miles away, getting back late etc. Then when he is allowed home, in a body brace, I have to roll him on the bed into it on a morning, fasten it etc, get him up, wash him as he cant shower etc and then go to work! I still am weak due to the dermatomyositis and bc, he is a hefty man, going be a struggle! Plus the housework, garden, shopping and one wage...mm bad luck follows us around it seems. 

Hope everyone else is having a relaxing summer, nice to see posts appearing occasionally! Xx

[orangecat]

Bonjour all, I'm back and seems you have been busy. I do hope Nette and Piggsy are on the mend after surgery and great news Piggsy that those abnormal cells where removed before they started to change. Sending a hug to Julie and good news that your Herceptin is nearing the finish line.

Deb how was your op and CT?? 

We have been to France again, it is so easy from here. lots of yummy food, great weather and endless sandy beaches. Would you believe I am still photosensitive courtesy of the chemo, get a very attractive rash!! 

Have a date for the port removal, fingers crossed they won't cancel it. Only 2 more Herceptins to go, which also means no more steroids and antihistamies yipee. mammo ok and u/sound booked for mastectomy side in Jan. Work is OK but running out of annual leave. So the reality of full time will hit me soon.

Hope all the JJs out there are Ok and senning love to you all, Kat xxxxxxxxxxx

[NetteW]

Great and wonderful news Piggys. You may have a bit of post operative pain in you arm now, but that will go and your arm will be perfect in a bit. My two node removed arm is fine and was used for chemo and pb and intravenous drips. So rejoice.
That side will also be regarded as cured.
For the rest of us and Piggys other side did you hear on the news that there is now a 95% chance of beating breast cancer. They spoke of heceptin as being a wonder drug responsible for the increased stats. But I know that when they say a 95% suvival rate they will be referring to all bc not just her2.
So take heart we may all still live to 100.
I had my hip drains out last Wednesday and also the stiches round my tummy button. So I don't need to return to Leeds untill my 6 week check up.
Seem to be healing well except for leakage from drain sites. Ugh! Got dressings and advise from practice nurse and told it should have stopped by Monday. Fingers crossed. Otherwise feeling ok but wilt quickly. Seem to have visitors all the time mainly kids and grandchildren but will be pleased tomorrow when they go and we are on our own for the next week.
After two tummy tucks I now need to loose a couple of stones so I don't put on loads of tummy fat again. Anyone got a solution that doesn't involve not eating. Since chemo I really appreciate nice food with plenty of taste.
Best wishes to all
Nette x

[piggsytrotter]

Good evening my fellow JJs

Saw consultant yesterday who told me they'd analysed the breast tissue and it was more of the same. It wasn't pre-cancer or cancer there were more abnormal cells. However, she felt that even though it wasn't anything this time eventually it would be and that I'd made the right decision. No lymph node investigation necessary, hurrah.

I now realise that if you have your armpit surgically interfered with i.e. lymph node clearance, you will have little nor no feeling after a mastectomy as the armpit surgery severs the nerves. This time, having a mastectomy but no armpit surgery I have still have feeling. So I suppose that an unexpected bonus.

Hopefully that's this detour on my life's road now over, although there will be more plastic surgery required. Unfortunately one of the silicone implants looks a bit like a slightly deflated grapefruit. But that's a battle for another day.

Hope everyone else is well, Nette hope you're recovering well from your surgery. Do keep us updated.

Have a good weekend xxxx

[NetteW]

Hi Everyone
Anesthetic brain I posted this on the wrong thread.
Piggys, I was also takened directly into theatre. Asked if I wanted pain killers I asked what I could have. Answer tramadol. I asked about side effects and if it worked well with paracetamol and ibuprofen told she would get me the sheet in the box. No sheet available so she brought me mims to read up. Then I was asked if a wanted them. Where are the doctors who used to prescribe for us the drug their experience and training said was best? Madness. Piggys I hope everything settles down for you and the biopsy results are good. Fingers x. Nette

My previous post.

How are you all doing?
I am home again after my double op. After a horrid meeting with my surgeon's senior registrar who spent ages telling me about everything that could go wrong and the %odds then saying that the odds don't matter if you are the one. I was in tears and decided not to sign the consent form until after my CT scan that was meant to show how compromised my tummy area was. Then my surgeon saw me and said I was not to worry and that it had to be done. So into the theatre I went. Because I have had shoulder problems since my previous mx with recon they took me into the main theatre and put me on the table made sure my arms were comfortable before putting me under. They also gave my anesthetic in my foot to avoid my node cleared arm. All went well and I feel great.
I have come home with two hip and drains but they seem to be reducing output well and the reduced bust looks good and looks like it might be a 'b' cup down from a big 'd'. I will be able to tell better in a few weeks when the swelling has gone down.
So after months of worry and fears I am feeling so light. 6 weeks recovery and I am going to get my life back.
I will need all new breast gear. Swim suit, protheses, bras. I am going to ring a couple of suppliers and see if they will give me a discount.
I think others have been in hospital this week I hope you have all got on as well as me. Those on heceptin I think you are all getting to your last dose.
Go girls we are EPIC.
A very buoyant NETTE

[piggsytrotter]

Evening all

Well I'm home and glad to be here. Surgery went ok, although having to hop up on the actual operating table in the operating theatre and let them strap me in was a bit unnerving to say the least. Even more so was the extra time (over 2 hours) spent in recovery because my heart rate was so low (37 bpm). Still, home now and although I realise it's very early days I'm not overly impressed with how the expander replacement looks. The other side is quite swollen so looks marvellous!

Plastics registrar said it's early days (I know!) but there's lots they can do if it doesn't settle down well enough in a few months time. More surgery - really?

Both drains still in but got appointments at hospital next friday to have them removed and also get the results of the surgery. Hopefully nothing worse, but as I'm discovering with this disease, you never know.

Nette, hope your surgery also went well and hope the rest of you are relaxing and enjoying this fabulous summer. Lottsalove xxxxx

[NetteW]

Sakura, sorry I missed your post, I think I missed a chunk as I missed orangecat as well.
I think everyone should have a will and whatever the trigger it brings peace of mind. I made my 1st one when the kids were little so go girl.
I would not wish cancer on anyone and definitely not bilateral but if that is what we are dealt we just have to fight on.
Tomorrow I have my op to sort out my recon from 2012. They have had 8 weeks to sort a CT scan which in my opinion is in fact 2 years late as if the I had been scanned not just mammogramed back in 2012 they should have found the 2013 cancer. So possible no node removal or chemo but we are here and my scan came through for 6 hrs after my op start time so now I have to have a CT scan at 9 and cos I am nil by mouth I will have to have tracer via injection. I don't know about anyone else but I have 1 no node arm and 1 chemo knackered arm. So looking forward to being a pin cushion.
Piggys hope everything goes well for you on Wednesday. I am sure being flat both sides will be fine. Massage the scar as soon as you can and I am sure your chest will look great.
I am going to a lymphadema massage specialist at the moment and she is massaging my right breast scar and it is looking much better. To be honest I have friends who are naturally flatter.
Sakura you must have had your op now so fingers x for a clear ct.
Love to all.
A sick and for some reason scared Nette

[piggsytrotter]

Good evening ladies

Had meeting with consultant on Fri for results of 2nd biopsy. There are some abnormal cells which are not pre-cancer or cancer. Am having surgery this Wednesday, right side mastectomy and double silicone implants. No lymph node investigation unless analysis of breast tissue indicates otherwise, but I'm hoping there's nothing there that hasn't show up on a mammogram and ultrasound.

I have no idea whether this is the right decision or not and I doubt the consultant knows either, but she didn't try and talk me out of it. Part of me is silently screaming "Don't do it" but most of me is saying "don't wait" because it could become pre-cancerous or cancerous. So unless the hospital cancels on Tues, it's full steam ahead.

I can't even begin to imagine what life will be like with a dead chest, but I'm hoping it will be compensated for by not having to wait for results every year.

We've had some spectacular storms here over the last couple of days, which kind of match how I've been feeling!

Nette, well done on the Run for life. So what if you walked it, you did it. Feel proud, as I'm sure your family is. Hope your surgery goes well. Nearly at the end of your journey as well, lots to look forward to.

Julie so sorry to hear you and Adrian have split up. Even though you say it was a mutual decision, it's still really difficult, especially given everything else you're dealing with. Are you going to have to move? Hope not, that's even more stress.

Sakura, I'm so very sorry to hear your lump was exactly what you expected it to be. Do let us know what's happening. Very sensible to get your will made, not giving up at all. Definitely demand a picc line if you have to have more chemo, it really worked for me.

Orangecat, nearly at the end of your treatment, how fantastic.

Hope everyone else is doing well. Let us know how you are. Lots of love xxxx

[NetteW]

Julie, sorry to hear about you and Adrian.
2 more heceptin and you are done.
Wonderful
I have emailed you direct.
Enjoy the garden
Nette

[juliemb]

Hi Nette, glad you are doing well. I've had a hard couple of weeks, me and Adrian split up and it's been really hard. It was a sort of mutual decision but it still hurts. I've had 13 Herceptin now, the last 2 by sub cut as my picc line became infected and had to be removed. I should be all done November time!!! Well it's a beautiful day so I'm going to sit in my garden and get lost in a book!!! Love to all xx xx xx

[NetteW]

Just completed the Walk oops Run for Life. Everyone in pink and although it was raining when we got out of the car we took the mini train to Sea Life Centre and the sun came out again. The route was along the sea front with free pink ice cream at the half way point. Lots of spectators and a fair bit of clapping and cheering. Granddaughter age 6 decided she wanted to run so she beat me round the course with her mum.
I have decided that I would rather excercise than work. I am sure it is easier.

Greeting to all hope everyone is doing well. I am back in hospital next Tuesday for corrective surgery from my 2012 recon. I am also having my recon boob reduced. Scan appointment not yet through but trying to keep cool.

Greeting to everyone as we all hit the one year on make. To thoses having heceptin you must be coming to an end soon as well. Well done all of you with HER 2.
Nette

[Sakura1]

Oh piggsy, sorry to hear that it's looking like bad news and I have a good idea what you mean about swinging from fury to disbelief. We have to stay positive though. We got through treatment once and we will do it again 🙂
My results were a local recurrence of the cancer and I go in Wednesday to have it taken out. Then repeat of the CT's to see if its gone anywhere else, followed by a trip to the oncologist to discuss treatment plans.

In amongst this I have decided to bite the bullet and get my will done. My family think its a sign of giving up but I can assure you it's just being practical whilst I am still in a good frame if mind and (relatively) good health. Who is to know if I would have survived the cancer but get run over by a bus tomorrow 🙂

Well I am off to Starbucks for a morning coffee. But of indulgence on a Sunday morning 🙂

Take care ladies xx

[piggsytrotter]

Hi my fellow JJs

Well unfortunately I'm no further on. Had vacuum biopsy on Thursday and get results this coming Friday. They are obviously expecting the calcification to be cancer, as surgery date has been delayed because of the possible requirement for sentinal node biopsy. I veer between panic, fury and sheer disbelief. Thank heavens the weather has been so good as I've spent hours in the garden (and endlessly playing CandyCrush on my ipod!)

Deb, hope your results are better than you're expecting. Guess you must know by now. Do let us know how you are. If the worse comes to the worse, definitely ask for a port or picc line. I had a picc line, it was brilliant and if chemo is in my future I shall be asking for it again.

Kat, only 3 more to go and then you'll be off the dreaded steroids. I expect it all seems a long way off, but it's surprising how quickly you get used to no hospital appointments. It's also surprising how quickly you get used to them again!

Nette, so good to find you so positive. I hope your op sorts out your recon problems and you'll finally be free of hospital and doctors.

Heaven knows how I'll face chemo again so soon after first lot, so I'm crossing everything for clear nodes.

How's everyone else doing? Masha, Bumblebee, Boxo?

I'll let you know what happens. Hope you all have a lovely weekend.

Lots of love, and thanks for your continuing support xxxx

[orangecat]

Im a bit slow this morning, wobbly from the steroids and fun, only 3 more Herceptins to go!!

Deb how where your results ?? def go for a port, I do still have mine but it is all singing and dancing and I can have a bath and swim and you can keep them in for years ( but i do want mine out soon) and are flushed every 3 weeks and they can take blood from them. Kat xx

[orangecat]

Piggsy, your 2 weeks of waiting must be up soon? So fingers crossed for your biopsy. Kat xx

[Sakura1]

Good evening ladies.

Sorry to hear what you are going through piggsy. I hope you get your results soon and they are better than you fear.

It looks like a few of us are still going through it a bit!

Nette - well done on the bike ride, very impressive 🙂 I have had full mx on the right side, all nice and flat and well healed. Wasn't interested in recon as I have never been that attached to my boobs and they are not huge so I can even get away without wearing my falsie some times 🙂

My test results are not back until this Friday now so just getting on with things. The original lump came up very quickly in the right breast with node involvement and they sent me straight to chemo to shrink it, I then had mx on the right hand side with 3 nodes removed, (they were negative) then 5 weeks later another lump came up quickly on my right hand side which was cut out and I then started rads. The new lump is about 2 cms away from where the last lump came up and again is growing fast.

I know my cancer is triple negative and aggressive so I guess the fast growth reflects that.

Last time around I had all the chemo through the veins in my hands, but these veins are totally shot now, do you think I can insist on a port if I have to have more chemo?

Take care all

Deb x  

[NetteW]

Well today is the 1st July 2014. One year from my first day of chemotherapy. Good old FEC. Life is good and dispite waiting for another op in 3 weeks I am fit, healthy and happy.
Happy anniversary to all us July Junkies.
Nette

[NetteW]

Hi Piggys
Please don't think the worst. My 2012 DCIS was just a very simple 2 node biopsy and full mastectomy. If I hadn't gone for recon that would have been done and dusted. If it is caught early there is no reason they should affect your armpit. I agree it is causing the most problems on my other 2013 side. But the 2012 side -2nodes is fine and they used that side for all the 2013 chemo.
Sending all best wishes that the waiting will bring the best results
Nette

[piggsytrotter]

Hello my fellow JJs

Well I'm no further forward after results of biopsy. They're not sure whether it's cancer or not. Apparently the scale is 1 = calcification to 5 = cancer and I'm 3. It would appear it's verging on the nasty but they're not completely certain. However, surgeon feels sure there's something lurking, therefore I'm facing a bigger and better(!) biopsy in two week's time so they've got more tissue to examine, then results a week later. Yet more waiting.

I'm hoping against hope it turns out to be calcification in which case I'll have a mastectomy and that will be the end of it. Otherwise it's a mastectomy, sentinel node biopsy and more than likely off on the roller coaster again. I'm desperately hoping I won't have to have my other armpit interefered with because that's giving me the most gip (sp?)

Hey ho, let's hope that the last of life's little jokes.

Thanks for your good wishes. xx

[Mahsa]

Thinking of you Piggsy.... x

[orangecat]

Oh ********  (words we are not allowed to say on BCC) Piggsy that is tough news. I could give you loads of postive gumph but you know all that, so fingers crossed for Friday and keep us in the loop.

Nette 231 miles wow I am in awe. That actually rhymes with saddle sore!! If only I was clever enough I could come up with a limerick.

Wimbledon is back and it is a year since we started our chemo, my first run was the 3rd. Well I stil am at the chemo suite every 3 weeks for my Herceptin ( only 4 to go ) and thanks to the steroids and antihistamines my heart is managing to take it. Probably should take them a cake next time, because they are all splendid.

Love to you all Kat xxxx

[bumblebee63]

Hi all, Nette, well done on the cycling..you put us all to shame! I do hope your surgery goes well, youve certainly gone through enough. I still cant imagine not having any boobs, my bad one is still larger than the other even after having a chunk removed, its still hard down the side, hopefully it will soften eventually.but I can live with that!

Well, regarding the lymphodema, I think I over reacted, and I now dont really think thats what it is. The lump or swollen part under my elbow seems to have gone down a little now, and there is no tenderness, no redness and doesnt look tight so maybe it was something else...heres hoping. Typical as I have now got my apt at lymph clinic for 15 july. May still go to get it checked in any case. Sakura, yes I usually lay in the bath with left arm held up out of the water! Just bought some elbow length leather gardening gloves from amazon to try and avoid my rose thorns, they were expensive but couldnt find any long ones anywhere else. 

Very tired today, still not sleeping v well even with sleeping tablets, this heat doesnt belp nor the light mornings but my eyes are so tired looking at computer all day long.

Piggsy, sorry to hear your news, hoping and praying the results arent bad, the horrendous waiting again,, Iife is  a **bleep** sometimes. Will be thinking of you.

Sakura, again, thinking of you and hoping you ok whatever the results were/or are. you dont need that on top of your other problems. I know how relieved I was in april when I was told the other lump I found was just a fatty lump but I had a 4 week wait after they sliced off a sample for result.

Anyway, I hope we all  keep posting now and again with updates as we have all shared so much, and there is always that dread at the back of our minds which only we can truly understand..

Going to see what rubbish I can find on tv now, hate tennis and hate football, so it will be a struggle lol!

Love bumble. X

[NetteW]

Hi bumblebees
Sorry I seemed to have completely missed your post. I think that the only thing we can do about lymphadema is learn the correct way to massage and where to. Never massage towards your arm pit. You need to send the fluid to the nearest lymph area. You start massaging at the lymph to clear them and then work towards the fluid in short gentle strokes. There is a masseuse who goes into St Catherine's hospic in Scarborough who is an expert at lymph massage, I understand she has a local practice. I will try to find out her name and details for you I have found a small amout of advice to me and Chris listening helps. But do jump up and down.
I am with Piggsy and rejected the cold cap a) because it hurts, brain freeze at its worst, b)it meant chemo visit would have been much longer c) because I wanted every part of me zapped with no area missed. Not necessarily in that order.
Talking about hair you should see mine after a day with a helmet. Everyone laughs, it looks corrugated. Still short and very curly no where near ready for a cut yet. I have been told that in a couple of months it will return to how it was before. I am not expecting that till at least Christmas.
Piggys, tough news but I am before you but hopefully reversed. And you have not yet had your recon. I had mx following DCIS in 2012 and was offered a tram recon, the cause of all my on going problems. Then exactly a year later at my annual check I has cancer in 2nd breast with lymph infection, so 2nd mx in 11 mth, chemo and radiotherapy.
I gather I now attend an annual check just for comfort and to keep tabs.
Must go now as OH humphing as we are off to IKEA as it is 10 mins away not 2 hrs as at home.
Nette x

[NetteW]

Hi bumblebees
Sorry I seemed to have completely missed your post. I think that the only thing we can do about lymphadema is learn the correct way to massage and where to. Never massage towards your arm pit. You need to send the fluid to the nearest lymph area. You start massaging at the lymph to clear them and then work towards the fluid in short gentle strokes. There is a masseuse who goes into St Catherine's hospic in Scarborough who is an expert at lymph massage, I understand she has a local practice. I will try to find out her name and details for you I have found a small amout of advice to me and Chris listening helps. But do jump up and down.
I am with Piggsy and rejected the cold cap a) because it hurts, brain freeze at its worst, b)it meant chemo visit would have been much longer c) because I wanted every part of me zapped with no area missed. Not necessarily in that order.
Talking about hair you should see mine after a day with a helmet. Everyone laughs, it looks corrugated. Still short and very curly no where near ready for a cut yet. I have been told that in a couple of months it will return to how it was before. I anm not expecting that till at least Christmas.
Piggys, tough news but I am before you but hopefully reversed. And you have not yet had your recon. I had mx following DCIS in 2012 and was offered a tram recon, the cause of all my on going problems. Then exactly a year later at my annual check I has cancer in 2nd breast with lymph infection, so chemo and radiotherapy.
I gather I now attend an annual check just for comfort and to keep tabs.
Must go now as OH humphing as we are off to IKEA as it is 10 mins away not 2 hrs as at home.
Nette x

[piggsytrotter]

Good afternoon ladies

Haven't posted for quite a while as life has moved into fast lane having to split my time between Wiltshire and Yorkshire, and I'm struggling to keep up with everything. Can't believe it's been six months since we started splitting our lives. I remember that I hardly had any hair and had to keep sleeping most of the afternoon after walking Daisy. Now I have enough energy to keep going for the entire day including doing all the usual domestic chores (twice over, not so good!). But at least there's no garden to worry about in the north.

Nettew, sounds as though you're a long way down the recovery road, hurrah. I admire you for even going one mile on a bike. I've always had an appalling sense of balance so never mastered two weels. I dyed my hair bright pink for the IOW festival last week, (which was absolutely brilliant) but after a few days in the blazing sun it had all been bleached away. My hair has come back with a cotton wool texture and is a mousey grey colour. Luckily after 4+ days in the blazing sunshine it's reverted to my original ash blonde. The texture is still odd though. I did know about it, but decided against a cold cap because I wanted to make sure every single molecule in my body was zapped.

Sakura, so very very sorry to hear you've found another lump, although if it's started growing in a matter of weeks isn't there a good chance it's not suspicious? I have everything crossed that's the case and that it's not what you're expecting. What with your poor bottom issues you really could do without any extra worry and stress. Do let us know how you are, 6st 7lbs sounds dreadfully low. Please jump up and down and demand they take it seriously, because it is.

Bumblebee, so sorry you may have developed lymphoedema (sp?) It's something we all dread. Is there any chance you could get a private appointment if there's such a long waiting list? You need to know what you can do now to stop it developing any further. I must admit that when I'm gardening etc am always getting scratched and bitten. As I don't use any sprays or pesticides I'm hoping that makes it OK! I'm sure being back at work is a mixed blessing, but being busy does stop us dwelling on our many and varied continuing health problems.

Boxofrogs, hope you're wound is now healing properly. How disconcerting it must have been. How very brave to have your remaining breast removed. Good news about the pathology though. I hope your holiday bucks you up like you hope. Where are you going? Sorry if you've said and I missed it. If you've had both breasts removed why are they seeing you in a year's time? Sorry, just I may be facing this myself (see below) and I've no idea what the follow up will be.

Masha I hope you're well. I totally understand about not coming on here so often. It's something we all want to put behind us. However, I'm just beginning to realise that's never going to happen! I'm still seeing the psychologist, who doesn't know about the latest turn of events, and it does help so I hope the art therapy makes a difference for  you. I hope you find somewhere of your own to live soon.

Orangecat, you get as deep as you want. Cancer is a life changing event, so it's not surprising that when the treatment is coming to an end you should assess what you want out of life, as well as who you want to do it with. I can't tell you how much this ordeal has made me value my friends, and the time I'm spending in Halifax is spent thinking about how I want to live the rest of my life, no matter how short. I hope you've finally got over your cold.

Unfortunately my health news isn't brilliant. I was due to have expander replaced with silicone implant and an uplift and reduction on the remaining breast on 20 June. It did occur to me that I should probably have follow up mammo and ultrasound before surgery so that was arranged for 9 June. I honestly don't know why it didn't cross my mind that there could be a problem, but apparently there is. Radiographer spotted some microcalficiation which wasn't present the previous year, and it's started to clump. So surgery is cancelled and I get the results of the biopsy this Friday. Looks like I'm facing another mastectomy, because even if it isn't pre-cancerous some significant changes are going on. Pretty overwhelming frankly. So I'm back playing the cancer waiting game. However, I'm determined not to cancel our holiday in September. We had to cancel last year's and whatever the biopsy outcome I'm definitely going away!

It's good to hear how we're all doing, we've been through a lot.

Take care my fellow junkies. xxxx

[NetteW]

Hi Horseslave - good luck over the next year of treatment. I have to endorse Sakura's comments the best advice you can get is eat well, lots of darkly coloured veggies, watercress, peppers, carrots, tomatoes etc. Take as much excersis as possible, sleep when you can & get help to keep the house as clean as possible then go with the flow.
Sakura, sounds like you have not had a full mx yet. It really isn't that bad I personally think my flat side looks absolutely fine. I even have a bit of a cleavage. I just wish I had gone flat the year before instead of opting for recon. Good luck with your appointment and fingers x it was just a cyst.
Well Junkies it is obvious we are hitting the year mark.
I have just completed with OH a cycle tour of Holland. We cycled for 4 days then had 2 days rest, I slept for most of them, then cycled for another 4 days. We went from west to east and back again. A total of 231 mls or 370 km. Our furthest day was 39 mls and shortest was 21 mls
Not bad for 6 mths out of chemo. I feel epic. We would never have done it without the bc. Not bad for OH at 68 or me at 64.
Next month 22nd I am due back in hospital to have the large fluid pocket, seroma, removed from my tummy. It is a left over from my recon in 2012. I am also getting a reduction to make the recon small as I an flat on the otherside as I have decided not to recon the right 2013 side.
To all thoughs still struggling with recovering from last year. You will feel better again. I am an empty nester and retired with OH so have had an easier ride than those with kids and jobs. Just try to walk as much and as far a possible.
Love to you all. Another 8 days to the anniversary of my first chemo session. Wow. I hope no one on this thread has had the double wammy of 2nd primary a year later like i had last year but no boobs means no more bc.
Bumblebee and Julie how are you doing
Nette

[Sakura1]

Hi Horseslave

We all have a good idea how you are feeling right now having been in the same situation around 12 months ago. It sounds like you have already been through a fair bit and I hope the next stage goes well.

My advice with chemo is to eat as well as you can, drink lots of fluids, avoid constipation and rest. The steroids they give you for the first three days of each cycle have some "interesting" effects and you may not get much sleep, but just remember that the strange restless feeling does pass 🙂

If you get yourself on the newer thread it should be a bit more active and you can share your experiences with people going through this with you (so to speak).

Nettew - well done on signing up for race for life. No shame in walking it, taking part is the important bit!

Bumblebee - make sure you are doing your exercises, there are some extra things you can do if you suspect lymphodeama like lying down with your arm raised at 90 degrees for a few minutes a couple of times a day, making sure you elevate the arm above heart level by using a pillow etc when you are sitting down. Avoid the hot baths (I still have them but keep my one arm out of the water to try to make sure I don't develop it lol)

I finally have appointment date to see colorectal surgeon to see what they are planning on doing about my bottom end. Fissure simply wont heal and its been there since last September so time to get serious about it I think. Still losing weight but more gradually now.

Am expecting some bad news tomorrow. Found another lump a few days ago which felt like just a bit of bone at first (discovering quite a few bony bits now I am quite thin) but it has already started growing so back to  breast care nurse and doctor in the morning to get it checked out. It is right next to where I found the last lump so I guess I know in advance what they are going to say. This will be round 3 with the little blighters now.

Was sat at the beach yesterday evening feeling a little bit sorry for myself when an old boy on a mobility scooter came whizzing along the promonade with a stereo playing loudly and a big grin on his face. Couldn't help but smile and tell myself to get on with it.

Take care all xx

[Janet_BCC]

Hi Horseslave,

I've just amended the title of this thread as it was set up by people starting chemo in July 2013.  Although I'm sure you'd be made welcome on this thread you may like to start one for people due to begin chemo in July 2014.  As you can see people do find a lot of support from fellow members on the monthly threads.

Very best wishes

Janet

BCC Moderator

[Horseslave]

Do you mind if I join the July junkies everyone? I am due to start my chemo in July. I have to have a picc thing fitted first, then its 6 sessions over 18 weeks. I have/ had invasive ductal carcinoma with lymph node involvement. Already had mastectomy with ghastly expander implant and an ANC after that. Was diagnosed start of April, so bit of a fast roller-coaster really.
I saw oncologist yesterday and she was very good, explained the whole procedure well.

[sugar8]

Thanks for advice NettleW. Trust me to be a year behind. LOL. 🙂
It's good to know that you are all ok.