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'll try to address each point I see in your post before I go rambling on. 

i now realise that my children made very plain their feelings about my being sent home the same day of my surgery, which is presumably why they kept me in the extra night. 

The softie, or comfie, is a very light soft prosthesis, to go inside your bra, to go home with. It feels nice and comforting against the poorly skin. It would be great if it fitted, but I don't try to wear it because of the size. I cuddle a soft cushion instead.  Later I will be measured for a more permanent one. 

McDonald's: I still don't know why I asked for it, I didn't finish it or really enjoy it! Must have been drunk from anaesthetic!

District nurse: I think it is the cheaper, safer option for wound and drain care than keeping me in hospital until the drain is removed. It is standard for surgical discharge that needs further care. I don't think it is because I live rurally, although some of the info I have read said some people return to hospital every day for the drain to be emptied, another said patients can empty it themselves - go figure!

There is no chance of my ring ever going over the big knuckle again, it now fits my little finger, but as the knuckle isn't enlarged on that finger I don't feel it would stay on safely so it will just go back in the jewellery box. 

The follow up appointment on 17th is to find out what was found under the microscope after my surgery. I had a sentinel node biopsy at the same time so I'll learn on 17th if there was any cancer in those nodes. If so I may need further surgery to remove the others in my arm pit or they may decide on radiotherapy instead. Margins don't come into it as they've taken every bit of breast tissue, so there's nothing left.

My drain is still running free  I'm supposed to have it removed when there is less than 30mils draining over 24 hours, or on day 7  I'm currently running at over 100mils a day on nurse 's day 4 so I'll have to see what happens if it's still 100 mils  on day 7. It hasn't really been a problem, it tucks into a bag that I carry beneath my clothes. I have no trouble sleeping with it and I'm supposed to be able to shower with it, but I feel a bit nervous of climbing into the bath just yet so I have a body wash at the basin.

I'm doing fine, although it is getting painful where I used to have a boob, now the bruising is coming out causing pulling and burning sensations if I move wrongly, so I am actually taking the tablets! I don't usually take medication but I'm under orders from the kids. 

I feel I've got off easy so far, you've had so much treatment already. I'm keeping my fingers crossed that it continues to go smoothly,  My choice of mastectomy was the right one for me but whether I will go for the second one is still to be decided.  

You're definitely right about the positive attitude, but I wish people would stop telling me how positive and strong I am because being scared and sad is not a sign of weakness it just means you're human and not quite so lucky.  

Got a beautiful bouquet of flowers from my son's in-laws today. Wasn't that nice?

Good luck with your chemo, it all seems to be doing what it should. 

Christine

Christine
Good to hear from you, addressing actions never stopped me rambling on...you're setting me a very good example! Unfortunately not one I'll probably use as widely as I should however.

I applaud your offspring, think my boyfriend (if he could actually face going in a hospital where they are scary people and big syringes - he has SOO many phobias) would do the same but would also probably ask them to keep me in permanently!
Softie makes sense, not something I'd actually thought about not having given it any thought, presumably supplied by the hospital? Are you being measured for a more permanent one as you need one that fits you?  Is this provided for you?  How long will you need, I ask as am not sure if this is a thing to aid recovery or longer term give symmetry? (Sooo many things I still don't know...).

Funny what we crave then really don't enjoy isn't it - I have a similar hankering every 5-10 years for KFC and then quickly realise it far too slimy and doesn't taste as nice as I thought it would, I think they slip drugs into their offering to create this addiction...

Re drain, I suspect that DIY will probably be the overall preferred option given its cheaper, we'll see.  Not something that floats my boat but then again I didn't think I'd be injecting myself either...a new skill for my growing collection perhaps?
Ah yes I recall they take a sample of the nodes to see the likely hood of spread there- 4 or so from memory?
Re drain I presume the hospital provides the bag for the drain? Your basin wash is the equivalent of my "prison bath" when I can't be bothered or have forgotten to put the hot water on!
Are your "boob pain" tablets over the counter (ibuprofen etc.) or provided by hospital?

Good lord lady based on how I've been so far I think your having part of your body lopped off beats my constipation (which now I've "mastered" this chemo lark is the worst of it really and that's only for a small number of days and isn't really enough to even moan about to be honest) so don't feel for me (yet!!).  You focus fully on yourself and am glad to hear that you appear to be handling it well - I truly hope that you are of course!!

I know its still early days but what are you thinking for boob no 2 ( or maybe 1 now??) I know the surgeon stated " protocols" but is this now something that you'll be able to (or want to) progress?

Thanks ever so much for answering my queries, I feel better knowing what to expect in the future and learn fro others experience - really useful and much appreciated.

And know what you mean re being strong etc.  I get brave quite a lot and know exactly what you mean...its like well I just get on with it as there really isn't another option that suits me or that I want to take advantage of.  I do however know that my friends and family all mean well.

Had a very good "chore" day yesterday, do feel better when am doing stuff (though loafing on the sofa in the evening watching TV is also most enjoyable!), also a chance might counteract impact of naughty steroids.
Went on another bike ride which was good if not a little mucky (as go mainly on bridle paths) but never stops me, always a shower at the finish to make me gleaning once again.  Then decided to actually go to the supermarket (usually get a home delivery but there's stuff I need that they don't do), and now I know why I prefer the convenience of a home delivery, the town was rammed for no reason and the supermarket full of eejits, nuff said.
In the afternoon went onto the garden centre and have planted lots & lots of new bulbs, love the spring bulbs and that will brighten my days post surgery & radiotherapy.  Bring on the tulips, crocus' and narcissi.

Would be out for a walk with a pal this afternoon but 2 rain drops on BBC weather is one rain drop too many even for a hardy northener so off to the cinema we go, I've narrowed my choice to Gemini (Will Smith) and the dark looking Joker & Judy, my friend will be asleep half way through but I am hoping to get value for money and stay the duration, think the steroids will (as they have been doing during the nights) help!

Far too much "content" above -sorry!  I can't half blather on...you should feel vvv sorry for my cancer support network as they get it in real life!

Hope the tablets are helping and the flowers are still blooming lovely.

Sam 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 & 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 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

Caroline
I know what you mean, I'm on other forums too and whilst I am sure my cheery nature probably annoys some, I do find that those who are always moaning and can never find anything to be positive about are quite draining to others and aren't, I suspect, doing themselves any favours either.  I personally think my positive mental attitude is doing me, the cancer and hopefully others the world of good - not that my long suffering partner would agree (it just wears him down...mission accomplished!).

I have a strange relationship with facebook, have never joined any groups and am not even on under my real name!  I have the grand total of 11 "friends" some of whom are and some of whom aren't and am not sure I've ever liked anything...I mainly use it as a tool to stalk ex boyfriends now & then!  I'll not be joining any cancer groups thank you very much, yours & Christines reviews are more than enough to put me off plus there's just not the time in my busy schedule!

Social media and me are not good bedfellows unless you hadn't realised..do feel sorry for the poor youth however.

Its ok to be weepy, everyone does it at sometimes, for me its always when others cry, just can't help myself at their sadness.
London with a friend sounds like a good cure for all woes, I have a love/hate relationship with London.  Being a country gal at heart I can't stand all the unnecessary rushing around, excess of people and general ignorance that often is displayed widely however do like good restaurants, theatre, comedy, strange stuff to do etc..and London has a lot of those annoyingly! Don't think however I'll be venturing in soon as can't imagine the tube (and its contents) is sufficiently sanitary for my chemo impacted needs.  Closest I've been (live in Epsom) is Wimbledon on overground, far enough for now.  Intrigued to know what naughtiness was had in London however.... 

Whilst I am, obviously, amazing (if I could be bothered to fathom how to insert smiley face here I would) it does help that my side effects have been unremarkable, no nausea or sickness at all, so do consider myself very lucky indeed, even my 6 day stay in hospital felt fine after day 1! I just hope my run of good luck continues into the next chemo drug which may make blummin (let's hope that's acceptable language around these parts...) nails fall off..ha! 

This week is my fave week its my feeling 'normal' week, no feeling rough, no numb teeth (odd, I know) and bowels in good working order.  this is the week I feel like I can & should get out & about, been to gym today and bike ride Tues and will do something again at weekend (if the chemo doesn't get me the keep fit will).  I've agreed (as missed it this year, with good reason!) to do next years Blenheim 10k race so better start getting a wee bit fitter (i.e. Not a professional couch potato which I have been perfecting for the last 2 years).

Sam X