Hello from a new member of the family

Today I joined the army of people sitting around different waiting areas, carrying my belongings and my "gown" as we went through the various tests to find out if we had breast cancer. Some were, like me, totally new to the routine, others were at various stages in the journey and one lady was given the great news that she was still clear of her cancer five years since her treatment ended. 

I already suspected that my symptoms of strange lump, pain and puckering were caused by the big C, so I wasn't surprised when the lovely consultant showed me the first ultra sound scan with its big black area where there should have been breast tissue, saying it was pretty definitely cancer, and proceeded to tell me what would happen next. 

What did happen over the next two hours was quite unpleasant and painful and I now have a 12 day wait to find out exactly what we are looking at regarding type of cancer and treatment. Strangely enough I have no feelings of fear for the future, although twenty years ago I had a scare that saw me fearful and tearful, now I'm an old dear I'm just cheesed off that I will have quite a lot more unpleasantness to face. I'm one of those boring people who don't often get ill, so when I do I'm the patient from hell, or so my daughter tells me. I admit to being grumpy if I'm ill for more than two days. 

I have read a lot of the posts, here, during my wait to go for the tests, feeling like an outsider looking in, but now I'm in, too!   I suspect future posts from me will be less upbeat, but I would like to record my experiences here, and to share others' experiences, too.

Parents
  • I have just been diagnosed with stage 4 secondary liver cancer. I felt I was in free fall whe I was told a few ago. I want to run but I can't.  We are a member of a club we do not want to be in and yet more that a third of people will get cancer. It's terrifying. I'm finding hard it to be the sick one too. I'm the fixer and doer in my family and I can't get used to not being that person any more. 

    I wish you good luck with treatment. I also find Maggie's centre invaluable for counseling at the moment they have save me a few times ️

  • Hello 747, my heart goes out to you, I can feel the free fall you are feeling. Thank you for taking the time to write to me. I wish you the strength to bear this without such anguish and hope you find the support you need. x

  • Hi Sam,

    I am laughing at the thought of your boyfriend asking the hospital to keep you permanently because my daughter says she had just such a plan. They took me in with no house keys, no money, no way of getting home and somehow the hospital  had her phone number down wrong. She said it was all a cunning plan to abandon me!!! 

    I think the softie idea is for comfort and help with recovery and in a few weeks I will be measured for a more permanent prosthesis for symmetry. The jury is still out on whether or not I will want to go through this again on the other breast.

    My pain killers i.e. Paracetamol and ibuprofen are over the counter but the strong dihydrocodeine were given to me on discharge. I only take one of them at night to ensure a good sleep. 

    I have have been quite reassured by having the nurse come every day. The drain emptying is so easy I could happily do it myself but just to have her look at the scar and the surrounding areas and reassure me that everything is going to plan is comforting.  I know I'm doing well but it does hurt with bruising and the skin feels slightly sun burned so it's good to hear it's all ok. The weird thing is I still get pains in my nonexistent breast.

    I had a home delivery of groceries this weekend and the driver very kindly brought everything into the kitchen and put the bags on the work tops. I usually do my own shopping once a week just to be sure of getting everything I need. I don't even think about going any further into town than the supermarkets. There is an Aldi and a Sainsbury's just opposite each other and between them they supply everything I could wish for. It'll be a while before I go there again, though, until I'm allowed to drive. (By my overprotective children)

    i don't think I'll be planting any bulbs this year, but I have plenty coming up every spring. I can't even contemplate mowing the lawn, yet. Having said that, come this afternoon I might feel fit for anything once my drain is out. I'm already dreaming of my first shower!

    My appointment on Thursday will be when I learn if the sentinel nodes had any cancer in them.  I am really hoping not because that would mean no further surgery. Fingers crossed! 

    The tablets are still working and the flowers still look and smell wonderful and the sun is shining! Yay!!!

    Christine

     

  • [@Yorkshire_defector1]‍ and [@cazrosie]‍ 

    I put your user names in so you will both get an email about this message  

     

    Hi Sam and Caroline,

    I got my results today and apparently it's a really good job I chose to have a mastectomy as my tumour turned out to be bigger than expected and a lumpectomy would not have been possible. 

    Unfortunately one of my sentinel nodes had cancer in it so I have to have them (or is it some of them) removed. I go in on November 8th which gives me three weeks to fully recover from the mastectomy and get fighting fit! Further treatment will depend on what they find next. I do know I will have to have hormone therapy for five years. I think that will be like going through a second menopause, such joy!!!

    The good news is, I got a softie that fits!! Happy day!!  

    Hope you are both well

    Christine

  • Oh Christine, that's a bit pants. Do you have to go back to have your anxillery nodes removed? I was told if they found evidence in my sentinel nodes, they would remove all the anxillery ones during the op. But thank god you opted for the mastectomy!! 
    A friend of mine (only 29) is on the same journey at the mo. She had a mastectomy last week and they removed all her lymph nodes as they found evidence in one sentinel one. She's waiting for the results at the mo. I'm taking her out for afternoon tea tomorrow.  I'm starting my radiotherapy on the 7th, which I thought I was fine about until the night before my planning appointment, when I got very emotional and had a good cry. I've chosen to delay taking my tamoxifen until my radiotherapy has finished.   
    Make sure you rest, emotionally and physically, ready to fight the fight!! Sending lots of gentle hugs.

    Caroline xx

  • Thank you.  My hospital doesn't have the facility to examine the sentinel nodes during surgery so they had to send them away. That's why I need the extra op to take out the anxillery ones. I feel so sorry for your friend facing all this at her age. At least she got it all done in one go, which is no consolation, I know.  Today my neighbour told me that radiotherapy was a doddle for her and not to worry about it at all, although she wouldn't say the same for chemo!  Then my daughter was told of a friend's mother who turned into the crabby *** from hell on the hormone therapy!  What joys await us! I really don't fancy going through the menopause again - for five years,  Yikes!

    I was actually allowed to go for a walk in the park today by my overprotective daughter. We took the dogs and had a lovely stroll just one mile but I fell asleep in the chair later.

    How is your recovery going? I assume that, unlike me, you are not being treated like an invalid if you are going out for tea tomorrow.  

    I am still quite sore, but I suppose that's to be expected after only two weeks. I feel fine,  physically and emotionally and this hiccup won't make much difference to that. 

    Thank you for your gentle hugs, just what the doctor ordered!

    Christine xxx

  • Hi Christine, 

    I am doing really well. It's 2 months since my main op and around 5 weeks since the second one. I have been very lucky and managed to avoid any chemo. I've had a quiet, normal few weeks recently while I'm waiting for radiotherapy and have only had a total of 3 weeks off work in total. Everyone around me sees me getting on as normal and have gone back to treating me like normal which is lovely. I get more upset when I hear of other people going through tough journeys. I did join a face book page for women with breast cancer but found it too upsetting. It makes me feel very guilty! I have the odd down day but not very often. I am hoping radiotherapy is a breeze (!) and that tamoxifen gives me no trouble ( positive thinking) but I do worry quite a bit that it has maybe been a bit too easy and that it is going to throw me a curve ball at some point!!

    Good to hear that your family are being supportive - even if a bit over protective! I have 3 boys - 20,19 and 15 so they are too busy to worry about me and I think because they see me getting on as normal, they don't feel they need to worry - which is all I hoped for!

    Caroline xx

  • Hi Caroline,

    It's funny, isn't it how the waiting goes from being a frustration at the beginning of your cancer journey, all that time before you get results, to being a blessed period of normality amid the turmoil of appointments and tests. I am really looking forward to my three weeks of normal life before the next step.

    i finally got to take my dog for a walk alone today. My daughter has been coming twice a day to walk him, but yesterday she allowed me to accompany them to the park where I enjoyed a lovely stroll in the open air. So today I was allowed out on my own!  Normality!! I will be glad when people see me as normal again,instead of giving me the "You're amazing,  so strong etc etc"

    i wouldn't worry that you are getting too easy a cancer ride, you had to go back for a second surgery - that is not easy!!

    I'm glad your boys are taking it in their stride, My son is much more relaxed now than he was before, but he and his sister still gang up on me to make sure I don't overdo things.

    Good luck with your radiotherapy- I think you are wise to hold off on the Tamoxifen until afterwards. 

    Christine xx

  • Christine,

    Sorry for delayed response, been being busy and feeling a bit rough (nothing too dire).

    I know what you mean re having the security of a professional to tell you things are healing well, I never quite know what looks good/bad and will tend to assume the former which has luckily worked so far!  Am quite British in that respect, don't want to make a fuss, am sure things that may be a little bit bad will go away on their own etc.

    God, I hadn't even thought of phantom breast pains...strange but understandable.

    Even before cancer I always got the poor delivery driver to put stuff where I could easily move it from..the poor men, I then proceeded to chat to them for far too long, I always get the impression that they're treated like servants down here rather than humans.

    It is getting a bit late for mowing (I say that as I can't be bothered to mow mine) and I believe that some growth will help the lawn and wildlife (in my mind anyway).

    Your tumour was bigger than expected?  How can that be if they've done scans etc that show and allow measurement?  This cancer lark can be soooo confusing. Just as well you went for the mastectomy indeed.

    Sorry you have to have a further op on the nodes, what a hassle and one op is more than enough eh? But that's why they take a sample of nodes when doing the mastectomy its just a pity they'll have to remove more.

    Glad your new softie is made to measure...that is good news.

    8th Nov is around when I have my next MRI to check chemo is doing its thing so hope we both have good news.

    I too will have to have hormone tablets for 5/10 years after radiology as am ER+, its years of fun to look forward to isn't it??

    I've had a university pal over from Ireland since Thursday, been really good to see her, she's just got back from Canada where she was seeing another of her friends who has stage 4 lung cancer so deffo consider myself lucky and I am, not surprisingly, sooo much more active, healthy looking..the Canadian is not taking it well and veers between talk of fight & death.

    Anyhoo had a lovely time catching up and went for a lovely stroll to Beachy Head yesterday, always wanted to go and the views were stunning,  luckily no-one was pushed or strayed too close to the edge..might have been a different story had the boyfriend been with me. 

    Glad you managed to get out for a stroll, I too was tired after yesterdays exertions but more mentally than physically. And you are now permitted to walk the dog alone...hey, well done you!!  It must be good to sense a semblance of normality.  I most enjoyed my 3rd week post chemo no. 2 as that's the time I felt best and most normal since beginning so am hoping that this wk 3, which is next week is the same.

    Am glad your family have stopped being so over protective too.  That would drive me nuts and cause many heated discussions.

    Had an unexpected trip to hospital Thursday as have developed a really spotty head and was worried as when had a really spotty face last this was followed by the trip into hospital, luckily bloods etc showed everything was fine.  Just need to wait for my spotty, itchy, sore head to clear up now,  This chemo just keeps on giving!  Again people at the hospital were so lovely.

    And had to chortle earlier this week as got an email from here telling me off for swearing, am obviously not disguising it well enough but also felt a little sad, mainly for others, as these forums are a way for people to vent and quite often venting involves bad language. However will have to be a reformed character now before I get thrown off for good I guess.

    Hope your weekend was a good one and recovery is progressing well.  Am just having a leisurely Sunday here and intend to watch a fair amount of tosh (not $%I^^%!!) that have recorded later on.

    Sam X

  • Hi Sam & Christine,

    Sam, you getting told off for swearing has made me chuckle as I have quite a potty mouth!!! 
    I was previously on a FB group for breast cancer but left after 2 weeks as there seemed to be quite a few negative people, who were focussed on the bad and while I understand we are all on different journeys, I'm not a negative person so found it was too difficult to handle. But saying that I've been very weepy this week. Not sure if it's just my hormones/age or the realisation that I haven't actually finished my journey yet (which in my head I had!). I have taken tomorrow off work and am going to London with a friend! Feel a bit naughty!! I think you are both tackling this amazingly, especially having to go through chemo. I am sure you get the comments from friends about being amazing, brave etc. And I know we are just getting on as that's what you have to do but I know that's not everyone copes. Cancer is a scary word but only if you allow it to be. 
    Hope you have both had a lovely 'normal' weekend! And hope next week is kind too.

    Caroline xx

  • Hi Sam,

    Told off for swearing??? When you've got cancer??? I think that's one situation where swearing is completely effing acceptable!

    Apparently phantom breast pain is a thing.  There's even a leaflet about it. Who knew?

    My tumour being larger than expected is not unusual with the lobular kind. The surgeon said it doesn't present as a lump, more like a layer, and that's what it felt like to me when I first noticed it, like a layer of thickening under the skin. 

    I am again trying to address each point you make as I get to it. Only because I feel really guilty if I seem to ignore something when I've just really forgotten it by the time I've got to the end.

    Is there any chance your chemo will shrink your tumour enough to avoid surgery or am I being a cockeyed optimist? I don't envy you the MRI scans, though. For something that is painless I find them a real pain!!!  And yes! Years and years of treatment just makes it  more boring than necessary,  Not that I follow the "alternative treatment"  gurus. I firmly believe with all the money that has gone into research into breast cancer that they have a pretty good idea about what they are doing. I've got a friend who gleefully told me that she is following an alternative practitioner for her lymphoma, and it breaks my heart but she is convinced it is better than traditional therapies.  Who am I to make her feel bad by saying she's wrong? It's more difficult to deal with someone else's cancer than your own, I think.

    Sorry to hear about the spotty head, an itchy head on top of everything else! Oh Joy!

    It's really nice to catch up with friends, one of the silver linings to the cancer cloud is people making an effort to come and see me. Glad there were no slip ups or should I say downfalls, at Beachy Head!!!

    I'm also glad the kids have relaxed a bit, but I don't expect it to last. My son is already talking about staying with me after the next op, to make sure I don't do more than I should.  I've managed to convince them that I should be doing much more walking to get fit, but today I bumped into one of my neighbours who has been away for the last two weeks, so she was eager to find out how I was doing, and the first thing she said when I said I was going for more surgery was that she would walk the dog for me! Honestly that is the least strenuous thing I do, why can't people offer to do my garden for me, get it ready for winter?

    i have had a nice, normal, weekend, thank you, watched some rubbish tv, including some stuff I'd recorded that wasn't worth watching.  Strangely, I haven't wanted to read recently, although for the last few months that's all I wanted to do.

    i hope your coming week 3 is an good one, 

     

    Christine 

     

  • Hi Caroline,

    You really struck a note with me about thinking you had finished your journey and then realising it is an ongoing thing. I felt exactly the same and last Thursday's news was a bummer! Will I get told off for saying bummer, do you think? 

    I haven't looked at Facebook for a long time, I weaned myself off from it when I realised how much time I was wasting reading rubbish. I wasn't strong willed enough to filter what I read so I would look at thousands of sometimes nasty comments on something I wasn't interested in, usually political, just because someone I knew had commented and before I knew it, I had wasted three hours when I intended a quick glance.  I haven't deleted my account because I still use Messenger to communicate with some lovely people I only know through Facebook. I would feel the same way as you if I saw lots of negative posts. I find some of the posts on here to be very upsetting when I can feel someone's fear and heartache and I can't say anything to make them feel better.  It's definitely easier to deal with my own cancer than anyone else's. Thank goodness there are a few of us hardy souls who accept that we just have to make the best of things and get on with it! I salute you! 

    Have a fabulous day in London!!!

    Christine x

Reply
  • Hi Caroline,

    You really struck a note with me about thinking you had finished your journey and then realising it is an ongoing thing. I felt exactly the same and last Thursday's news was a bummer! Will I get told off for saying bummer, do you think? 

    I haven't looked at Facebook for a long time, I weaned myself off from it when I realised how much time I was wasting reading rubbish. I wasn't strong willed enough to filter what I read so I would look at thousands of sometimes nasty comments on something I wasn't interested in, usually political, just because someone I knew had commented and before I knew it, I had wasted three hours when I intended a quick glance.  I haven't deleted my account because I still use Messenger to communicate with some lovely people I only know through Facebook. I would feel the same way as you if I saw lots of negative posts. I find some of the posts on here to be very upsetting when I can feel someone's fear and heartache and I can't say anything to make them feel better.  It's definitely easier to deal with my own cancer than anyone else's. Thank goodness there are a few of us hardy souls who accept that we just have to make the best of things and get on with it! I salute you! 

    Have a fabulous day in London!!!

    Christine x

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