Chemo no 5 went ahead today Sue,not snowed in and the main roads were clear. Have a 25 min each way trip. The chemo nurses were bit thin on the ground so was a long day. One left to go yippee!
Keep well all and warm
Claire
x
Hi everyone, I am another having chemo first, then surgery then radiotherapy. I have just had my third FEC chemo ( but the first one through a picc line)which was so much better than through a cannula.
I have four lumps, three in the breast and one in the arm pit. My lumps started shrinking from the first chemo! They told me that the chemo first was to contain the cancer and make it easier for surgery. Even if they shrink down to nothing, they say the breast has to go.
I have fatty tissue lumps in my other breast and worry about the future. I may also opt for a double mastectomy due to fear. I can’t do all this again!
I wasn’t offered a choice of surgery or chemo first, they told me a Multidiscipline Team reccommended the chemo first, so I just went with it although I really wanted to be rid of the cancer in my body.
I will not get any scans etc until after my 6th chemo, prior to surgery. They say it is not necessary as things should only be shrinking not getting worse. I would prefer more info than just a ‘feel’ examination by different people each appt. What happens with you?
They told me I couldn’t have a reconstruction for up to 2 years because of the chances of it coming back and that reconstructions can hide cancer, but a couple of years without boobs seems hard to take in.
I smiled when I read about AvenueSue talking to her boob, as I do the same. Nearly called it betty boob, but hav a friend who has a little girl betty and didn’t think it was appropriate or original in the end.
Will look forward to hearing how everything goes along for you all.
Take care
Lone (Kulakatz) xxxx
Hi All,
The snow affected our pc for a few days. Husband working from home so restricted access.
Welcome Kulakatz: Your treatment plan so similar to mine. Team met and was told what would happen. Glad really to not have a choice. I’m really sorry you have a long wait before reconstruction. 2 years is a long time. I had fatty lumps in good boob. In fact I had been seen by consultant about good boob in Feb 2009 and all was fine. I ignored dodgy boob for this reason for a long time; I assumed anything unusual would have been picked up. I would be guided by the surgeons. They have seen so many cases and it may not be necessary to have a double mx. It is worth asking for earlier scans but if everyone is happy that they can see shrinkage then it may just tell them what they know already. It depends on what you are having as well. If you are on FEC only they may wait. I’m 3X FEC 3X TAX; in my case they may want to review the FEC before starting the TAX,
I have scans booked for before Christmas: about half way through. Not looking forward to the MRI washing machine. I see the consultant in January also. I have seen the plastic surgeon already. He was very handsome. Deborah Orr’s column in The Guardian details her breast cancer treatment. Her most recent visit to hospital involved an encounter with an A and E doctor who looked like a film star. There are up sides to this then.
So glad you managed to get your chemo Claire. And only one left: fantastic. Great start to 2011. I hope you are feeling better soon.
Paul: great news about your wife. She has surgery still but the shrinking is really good.
Dodgy boob does feel a bit more normal after FEC#2: slightly less of a separate entity. I was lucky enough to get on a Look Good Feel Better class on Tuesday. This was very helpful and I found some perfume in the goody bag this morning which was an added bonus. Chemo hangover day 9. Looking forward to day 12 as that was when the headache lifted last go. District nurse came yesterday to flush my picc line. Looks clean but dressing is peeling off. Should I get them over again or go to Boots and get the dressings myself? Bit of a palaver either way.
Very long post to make up for gap.
Lots of love,
Sue
G’day all,
Am so relieved that the snow has gone so that the hubby and kids can go back to school and work tomorrow… doesn’t that sound awful?
Hope all goes well with the scans before xmas Sue? I haven’t had an MRI scan, is it anything like the bone scan? Is it a full body MRI scan or just your chest? It would be a great xmas present to know that things are shrinking and even dissappearing I reckon.
Sue mentioned the ‘look good feel great’ session. I booked myself in for one but have to wait to January. It will be just before my last (hopefully) chemo session. They said that it is nice and relaxed and you end up with a goody basket.
Dressings for piccs: Mine is hanging off a bit. I have just been using the cling film around my arm and so occasionally it gets a little damp around the edges and peels. I have nurses coming in at the moment to give me 3 injections in the evenings for the blood clots and immune boost and they said that they have very limited dressings (only 2 types). If you do find something good at Boots Sue, let us know please?
Take care everyone
Lone (Kulakatz)
Feeling really tearful today really angry and cheated and am having a damn good cry.
I was the same on day 9 and 10 last chemo cycle.
My husband says ‘What’s wrong with you? What is it with him?
All the chemo side effects remind me of when I was pregnant: nausea, odd tastes, can’t drink tea, bloating, sore skin, weight gain, and fatigue. Breast cancer is such a cruel ****bag. For the last 18 months I was hoping I would get pregnant (was late starting with only child) I feel so robbed. Like Sophie’s post yesterday I feel so angry when people say you are lucky to have such a lovely son. I know I’m b***** lucky to have him but I didn’t want this: to have only him; I wanted to have a bigger family. These cruel side effects remind me every day that this will not happen now.
When I read other posts I think I have got off lightly re side effects but I would swap these phantom pregnancy symptoms for any other side effects. The fact that I have been having my period for eleven days now is a dead giveaway that I am not pregnant. That and finding my hair everywhere in the house. Don’t think cold cap is really doing the trick any more.
Sorry to be on a downer: I think I need a good kick up the ***e. I know this will pass in a day or so and I will be back on form but today life is a bit c***.
RE PICC: My local NHS walk in centre in New Cross changed the PICC dressing. The doctor asked me if the district nurse who came was a man. It was of course. I don’t suppose the district team is very large so she may know the culprit. I’m going to go there next week to have it flushed rather than risk District Nurse Scissor Hands again. Very poor show re choice of dressings Kulakatz. You want to complain about that
MRI: MRI is just of the boobs; they did scan both last time. I suppose its like a BOGOF at Tesco.
Will be glad also if the husband leaves tomorrow, only for the working day though, despite my earlier rant.
Sue
PS Please do the survey on another thread and fill in if you haven’t done so already.
Sorry to hear you are so down at the moment.
I’d just like to say a word or two in defence of husbands/partners.
Us blokes don’t understand women at the best of times. When someone we love has to go through something like this, we are typically WAY out of our depth.
Many of us fix things. It’s a man thing, and we are faced with something we can’t fix, so that puts us even further out of our depth.
We are also in a situation where even with psitive comments from medics, we are scared witless of losing the person we love most.
On the parenthood front, there is always a possibility - though I acknowledge it is a remote one. We do think we are lucky that this happened after we had decided we had enough children!
One of my wife’s oldest friend’s husband was diagnosed with brain cancer nearly fifteen years ago. One of the things they were told was he would not be able to father children naturally after treatments, so they went the freeze/IVF route. The staff at the hospital were really surprised when she was admitted to hospital with stomach pains, and was happy to be told it was an ectopic pregnancy!
Hi Sue,
I read ypur post and cried, I felt so down yesterday, so miserable, which is very unusual for me, I just seem to take everything in my stride, but not yesterday.
my wonderful husband kept asking me what is wrong…I just felt so housebound, a prisoner in my own home, too tired and so very cold all the time, my eyes are still so sore, will make an appointment tomorrow, my joints ache and i hate feeling so ugly… wearing jogging bottoms all the time due to 2 stone weight gain…
I am so sorry re your periods, so many of our decisions have been so cruely removed from us, sending a huge hug to you xxx
So glad that you got your PICC dressing sorted
Don’t be so hard on you, you most certainly do not need a kick up the Ar*e, be kind to yourself
love Jenny
thanks LargerBloke, what you have said is how muy husband feels x
Hey guys! I just wish I could give you all a big hug! But I suppose it would just make you cry and if you are anything like me a sympathy hug makes me blubber more.
I don’t really know what I could say that would make you feel a little better but I am here to listen if you ever need to get stuff off your chest?
It is awful when you have those really down days, and I have had my share of them too. Sometimes I have found myself just saying over and over again that it is ‘not fair!’ I think we are allowed to own these days and feel what we want to feel (eventhough everyone tells us to be positive) and sometimes writing on this blog will help, (a little anyway).
Looking at what we have to go through is very scarey.I can’t believe someone could have come up with something so horrid as chemo to fight cancer. It just seems wrong sometimes cause of its toxicity.
Each step can be filled with so much anxiety. So many things can appear as another blip or bump on our road and some can feel like mountains in our way. I am only new to all this too, but I have seen this web site really help people. Whether it gives people a chance to really say how they feel, or have a little joke about the stuff that no one else but a fellow b.c. sufferrer could understand, it is here for all of us.
I know hubbys and partners find it hard to understand what it is like for us. How could they know? At least some of them will try and this web site may help them too? My husband wont talk to me about the cancer, but I hope he will one day.
When they say that you aren’t alone… well you don’t need to be. Just log in and let us know how you are doing and people will be there for you. We may not be your family, but we can be there for you if you let us?
Take care & lotsa love, Lone (Kulakatz) xxx
Kulakatz - it sounds like your husband could do with talking to someone. There are a few husbands on here. I have an idea of some of the things he *may* be thinking - he will probably be feeling a mixture of fear, helplessness and potentially grief. None of those are any good for us blokes who like to think we have some control over our lives.
I can’t help but wonder if feels that if he acknowledges it, it makes it real and thus even more scary. He may not even realise just how much it is affecting him, and as a result how that affects you.
I know I only realised the effect on me after the scan a couple of weeks ago to plan surgery where they could not find the lump anymore. I actually noticed myself smiling more!
On the practical day to day front, I know I want to help as much as I can, but am I helping by doing everything, making her feel useless? where is the line between not doing enough and doing too much?
Paul.
Thank you guys. I have had a bad weekend. I think I know now that bad weekends may come the week after chemo. At least knowing what to expect next time may make it easier to plan for it. It will be Christmas day and Boxing day which will keep me occupied I’m sure.
Lone you are so right, just posting here this morning made me feel better and I made myself dress up and do my make up and leave the house. I went to the Christmas fair at the school my son starts in in January. Lots of mums and babies but I smiled my best smiles and bumped into the chap who plays a funny doctor in Holby so it was not all bad today.
Paul: Thanks for the wisdom. I think he is out of his depth on this one. Sometimes I get the impression that he forgets that it is happening or like Lone’s husband seems to be ignoring it He does try. I’m sure your wife appreciates all that you do and the fact that you are on here giving support to others is a testament to what a great bloke you are. I didn’t mean blokes but mine in particular. If you worry you are doing too much don’t: I’m sure she would tell you if she didn’t need the help. Sometimes it is lovely when someone else takes over and looks after everything.
Sorry you are having a hard time too Jenny. I hope all goes well with the appointment to get your eyes sorted. I guess all the extra **** that having chemo entails makes me robbed of ten years of femininity. Like you said I knew menopause would come but not so soon and not having any choice is the killer. There is a lot to be said for jogging bottoms. I’m rediscovering them and all day pyjamas. I didn’t expect to gain weight on chemo; I guess the steroids plus inactivity doesn’t help.
For Christmas last year my lovely husband bought me a Wii fit. Great present but still in the box one year one. We didn’t have and still don’t have the Wii to go with it. Nice thought though eh? Maybe Father Christmas will bring the Wii this year.
Lone: I am sorry your husband is not a good listener. He sounds like mine in many respects; he just gets on with things; not good at fixing- I do that but he has lots of great qualities I love.
As Frank Spencer used to say ‘Every day in every way I’m getting better and better.’
I think I have some foxes mating/ fighting loudly in my back garden. Any suggestions as to getting rid of them?
Xxx Hugs back x
Sue
Hi Guys!
Thanks for your message Paul, you are so sweet and I agree with Sue that your wife is so lucky to have you. I told my hubby about you and the website so he could have a look at what other men are thinking and feeling too. I just don’t want him to feel alone, or ignore it anymore (or me really).
I will try to encourage him to look, but I know that it will take some time and paitence on my part. We have a male friend who is a good communicator who has been trying to get hubby to talk too, but he says he just doesn’t talk at all. I think you are right about the not acknowledging it makes it not real, but don’t know for sure cause he wont talk to let me know.
I am so lucky cause I have friends & this web site to support me, (my family is in OZ), but I feel sorry for him that he is going through this alone (and we should be doing it together).
Sue, I am so glad that you are sounding brighter sweetie. Am so proud of you for getting out to the fair with your little boy. I know what it is like to put on the ‘smiles’ etc, but I do hope the break from the ‘4 walls’ helped to lift your mood? Plus you had that brush with a celebrity happening (a bonus).
I have wii fit as well! Mine doesn’t get used. Let me know if you get the wii to go with it for xmas and we can have a hula hoop challenge? Or maybe a sit down yoga thingy to start with? he he.
About the foxes: How close ar your neighbours? My six year old has a very noisy space gun that would do the trick or you could download some wagner from the xfactor? he he.
Jenny: Hope you are feeling ok honey? If you are, or if you are not, just keep posting…we are here for you!
I am already a very big cuddly lady and the thought of putting on even more weight (especially cause I still have to have surgery yet), is really scarey. I did ask my Oncologist if I could have the chemo that makes you skinny. I figured that if I was going to have to go through all this xxxx, then I should get some of the perks and end up a size 12. he he. What do you think?
Wow! this has been a long post. Take care everyone.
Lone (Kulakatz)
Thanks Lone,
you post did make me smile, thank you for the support and to all of you 
…
I am feeling so much more positive, eyes feel so much better, offto finish Chrimbo shopping this afternoon, can’t beleive that I am so organised, I am usually last minute.com, wrapping pressies Christmas eve!!! this year, all but a few bought and wrapped yippeee!!! just as well as my BCN rang me this morning and told me that I they intend to keep me in hospital for 3 days post surgery!!! getting out Christmas eve 
… but all good.
my Onc told me that he is concerned if people lose weight, rather than put it on!!! I think I did use the steriods as an excuse to put on weight, although I did become a couch potato, as I felt so sick and tired.
my thoughts and best wishes are with you all,
love Jenny xxxx
Am Jealous Jenny, I still have heaps of xmas shopping to do. Have tried online shopping but it isn’t as much fun. I am to tired and impatient since having chemo to wait in lines and my chemo damaged arm won’t allow me to drive.
Am hoping to pray on friends to take me shopping and buy ridiculous presents for people and blame it on the chemo brain. he he
Am pleased your eyes are feeling better matey. How are you feeling about your surgery? Am here to listen.
Lotsa love, Lone xx
Morning Lone,
thanks :)zz
I too was too tired to physically walk the shops… I really enjoyed shopping on line, it gave me some control back.
I am quite looking forward to my surgery, only because I really need to know if there is any spread in my lymph nodes.
I am very lucky, my hubby and kids will all be around, my eldest comes back from Uni on 17th and will be working on the ward that I will be admited on to( he does agaency ward clerking, during the hols at the hospital where I have my treatment).
Have a great day everyone xx
Hi All,
Love the Christmas shopping Jenny; I am usually disorganised also but I have done quite a bit, much more than I would normally have done. Lots of it like you, on line. Your eldest being back soon will be such a help. When are you booked in?
The cards I have received so far refer to ’ better health in 2011: I second that.
Glad your eyes are better Jenny. You sound better. Sore eyes are such a pain.
Lone: Your oh will come round it is hard for men often they don’t know how to deal with things and so don’t deal with them. I hope he is supporting in other ways. I’m sorry you have had trouble with your arm and can’t drive. That must be such a pain. Shopping is more fun in pairs anyway and friends can encourage you to treat yourself too.
I’ve told OH I want a wii for Christmas ‘for the family’ to go with the wii fit, still boxed. Feel flabby due to lack of activity and have gained on chemo. Thought I’d lose weight. I blame the steroids.
I was in work yesterday and led a meeting with teachers for the first time since dx. In fact first time I’d seen them since dx so it was a bit awkward to begin with but was soon in stride. Work helps to keep things normal but I do get more tired than usual.
My boy had a settling in afternoon in his new school this afternoon so we went along and had a great time. Got the chance to talk to his teacher about difficult home circumstances and she was lovely. Feel better now that job is done.
My employer is letting me opt out of a competitive assimilation process and is going to continue employing me past the date my post disappears ( March) so I’m really happy that I’ll still have some income when I’m being operated on and for a bit after that. Hair stopped falling out today. It is still a reasonable head so I am really pleased. I know there are no guarantees but Mr Paxman’s head cooling thingy is doing the job so far. Other threads suggest it might be risky so need to ask Onc about this next week.
So not a bad week so far in all. The world seems so much better when you are well again .
Thinking of you,
Lots of love,
Sue
Sue my weepy down days tend to be same as yours, and I have the same se’s too, so pretty ‘normal’ (ha, as if!) I guess…
Paul, thanks for posting, your words are comforting to read, albeit sad when it comes to worrying, but obviously true, but it is nice to hear how a man thinks, as I’ve been worrying about what’s going on in my husbands head even though he says he’s fine and I know men don’t need to be ‘thinking something’ all the time - though can’t understand that lol !
Denise x
Dee - of course we worry! you should complain if we don’t worry when the person that means most to us is going through something like this - especially in the early days after diagnosis where about all you know is that it is cancer!
We worry all the more if we are parents, expecially if children are young (ours have just turned 8 and 4) and we are concerned about them losing a parent - we worry for the kids too!
We are brought up to “be strong” all we are doing is what we have been told. Even without that, as parents you *really* want to minimise the impact it will have on children, so you have to look like your are not worried.
From another thread, there is the link to Ade Edmondson - dailymail.co.uk/femail/article-1322482/Our-year-hell-Adrian-Edmondson-anguish-struggling-help-wife-Jennifer-Saunders-cancer-ordeal.html that may be of interest to partners.
Paul.
Thanks Paul, will take a look at the link. I got the “In it together” book off here too.
Denise x
Just on the partner front. My husband found a book in the ward I was on for surgery called ‘Breast Cancer Husband’. He flicked thru it, founds it interesting and we bought a copy. It’s american, so a bit different, but some of it makes sense - maybe it might help some of your partners?
Must admit, I’m incredibly lucky - my husband is my rock on whom I rely so much these days.
Nina
Must admit my husband is a rock; I was just more worried about how he was coping with it all rather than worrying about myself as he has been through this before with his ex, albeit she didn’t have chemo. Then she left him for somebody else!