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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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