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 ladies,

I'm sorry to hear you are down in the dumps, Caroline, I think I'm going through something very similar. It doesn't matter how hard I try not to think about cancer,it is there in front of me at every turn.  I am blaming the medication, though. Anything that can screw your hormones to the extent that these effing things do has got to be to blame for messing up your head, too.  I am also very fatigued, all the time, which is no biggie for me as I only have myself and the dog to look after but it must be really horrible for you with a job and family to think of.  So far the tiredness and some hot flushes, slight headaches and tummy troubles  have been the only physical side effects of the Letrozole, I think so, anyway. Fingers crossed it stays that way. Having said that, my pert little A cup non breast has lymphoedema in the scar tissue, so I now have another set of exercises to do every day, and I may never get a permanent  prosthesis to fit me.

 Whinge time, so you can skip the next paragraph if you wish. I'm still suffering with my knee, and this week the physiotherapist refused to treat it because it was so warm and swollen.  He called my doctor and got me an appointment for the same day ( something I couldn't have done) and I now have a referral for an X-ray on it, and an appointment to have a cortisone injection next week. The last injection I had, on the other knee was miraculous in killing the pain  I had been to the doc on Monday because of the pain and just got a prescription for codeine, which blows my mind, so I only take them at bedtime so I can sleep, but last night I was wakened by the pain and took two more at 3am.

Sam, will you get back dated insurance? I hope so!  It must be very frustrating not to know the date of your surgery, you are certainly well prepared. All I took was a huggy pillow and pj's. The hospital provided the drain bag. I'm glad the chest infection is gone, they could postpone your surgery yet again if it hadn't.  I had a residual cough and the anaesthetist made a special concession to allow mine after examining me very carefully.  Apparently they don't like us coughing when we are unconscious!

i found out what the DIEP (?) is, YEEEEUK!  I'd rather have a flat lumpy chest any day!

Archie has blotted his copy book again. Again with my hearing aid. I have now asked my doc for a new referral as they are not giving out the same model any more, and rather than have them rooting around in the different stores to find me an unused obsolete one, I would prefer the new model.  My daughter has bought me a set of little plastic lidded pots, to keep one in every room, so that whenever and wherever I take out the hearing aids I will have a sealed container to hand, to keep them in. She says it's no good trying to train Archie, so she's training me! I was so upset when I found what he'd done I couldn't speak to him for hours, that's definitely the Letrozole!

I was sad to hear, yesterday that my friend, Gladys, the lovely lady who had her mastectomy the same day as me, who resembled my mother at that age, has been called for more bone scans since her Dexa test, as they think her cancer may have spread to her bones.  She has had terrible trouble with her hip since her surgery, and also had to stop taking the Letrozole as it made her feel,so ill. I'm really sad for her. 

Take care, both of you. Sam, we'll be keeping everything crossed that you don't have any more messing about, and get your surgery over and done with ASAP.

Caroline, I hope you feel better, soon. And please feel free to whinge and rant as much as you need to, it does help, having someone who knows exactly what you are going through, you and Sam certainly help me. 

C xxx

Christine,

Sorry to hear you're finding post cancer treatment life a bit poo too!  Not being in this place yet I would imagine me to be swinging from the chandeliers as well as drinking copious amounts of alcohol but suspect things may be a little different when I get there. Anyway, like Caroline I hope this gets resolved one way or another.

I can't believe you've still got lymphedema still, it sounds that its relented somewhat but is still there, why are your support team not doing anything?  Having had my meeting re post surgery maintenance they were at odds to convince me that all fluid build up would be reabsorbed by the body...what they didn't state was how long it would take!  Do you just have to wait & keep your fingers crossed?  Can they not syringe it off (or whatever the term is)?  Interested to see of the exercises work and over what time.

And your knee is still pants too...you are not having a good time and am spending you internet hugs (timely as won't be doing that soon as will be too painful for me!!), bring on the pain meds eh.  Hopefully when that starts working then you can work on getting knee better?  As you can tell I'm not a knee specialist and only just about know where mine are.

How's the painting?  Seem to recall you'd be commissioned to do a picture for someone local...how's it going/gone?  I hope this is helping your state of mind although may be tricky given knee issue??

Yes insurance will be backdated, it could however take a couple of months to sort, and I am assuming I'll be covered, I mean how could they not cover a cancer sufferer? (I really don't trust insurance companies at all).  Yeah my hospital should provide shoulder bag & heart shaped pillow but my BCN is not the best at being organised, despite my nags so have ordered these on line rather than wait for her to maybe bring them to me on the day of my op (which she may not be there for depending on which date it is).

DIEP is lovely isn't it?  A 6-8 hr op, lengthy recovery and all those body bits used...am resigned to it now as want 2 boobs but can understand why only 17% of those having mastectomy choose to have delayed reconstruction...the additional op, the waiting times...there's a lot of compelling reasons why.  On the plus side I'd rather have the tummy used (and resulting tummy tuck - will miss my rolls as have been close to them for sooo many years) than things, bum, back etc.  If I wasn't so well endowed stomach-wise it would be a very different kettle of fish.

Are you sure your ear wax doesn't taste like roast beef as that dog obviously loves them, or maybe he just doesn't want you to hear, I suspect he'd be pretty rubbish at being an effective hearing dog given his passion in life is eating (things he shouldn't).  How sheepish was he when you sent him to Coventry?Love that your daughter has realised Archie is past it but you still have potential on the training front.

Glad we're still all in this together!  Have good weekends, mine will be dull and trying hard not to clean the house (not difficult!) so that my nurses/skivvies do all the hard work when here looking after me....cruel but I'm worth it!

Sam X

Hi ladies,

Thank you for making me smile and feel that I'm not going mad!! Like you, Christine, I do suspect the tamoxifen is playing a big part in my low mood and tiredness. Just hoping that once our bodies get used to them, things start to plateau off. 
Sam, the lady I met the other day had a reconstruction using her belly. I had the tissue from my back used. Apparently I didn't have enough fat on my belly!!! (Not sure she looked in the right place). But we are here to support you through the next stage. Milk the help!!

Christine, the hearing aid story did make me laugh!! And agree with Sam - earwax must taste amazing to dogs!! Sorry to hear that the knee is still no better but hopefully the injection will help. Also sad to hear about your friend. No wonder we worry about every ache and pain. I find myself googling my worries all the time, looking for the bad stuff so need to knock that on the head! 
Should have the joy of house jobs again today - washing, ironing etc. Hubby off out to watch rugby and all the boys have their plans, so just me and the dog left.

Enjoy your weekend ladies xx

Hello again, so soon, too.

Sam, the lymphoedema is not the same as a seroma, which is fluid filling up the empty space between the chest wall and skin, where your breast tissue used to be.  Apparently this does eventually re-absorb and can be drained off if not absorbing. The lymphoedema is fluid that is trapped inside the tissues like a sponge, which can't escape so can't be absorbed or drained off.  Mine is trapped in the scar tissue from the mastectomy.  I have seen a specialist lymphoedema nurse, who has given me special exercises to do that should help. I have to roll a wallpaper seam roller along the scar for a few minutes to soften it, then do stroking exercises to push the fluid to the other side, to drain into the lymph vessels there.  So far I feel it's a bit of a waste of time but I'm very obedient and will do them religiously!  My next appointment isn't until April.  However, I still have the seroma, too, which sometimes feels bigger than ever.

I am painting!  The portrait is coming along.  I have done an under painting, with no detail, in acrylic paints and then I will go over everything in oils and finally give them both facial features. At the moment I can see the likenesses, just based on shadow and highlights but it could all go horribly wrong when I start painting in the features.  Oils take a long time to dry so I am having to wait between layers or I end up with a muddy mess. I am pacing myself, too, so I don't get too tired.

Caroline, I am in awe of you not having enough fat on your belly!  I have a surfeit!  I have actually lost a couple of kilos, not just the missing boob, an additional couple.  I think it is because I have been off my food a bit. I can't think what I want to eat and then when I do cook, I can only eat half. I will be a long time before weight loss becomes a problem for me, though!

I have my appointment for the DEXA bone test, the week after next. I got a letter telling me my Vitamin D was low, so I have to see my GP about getting supplements. It can wait until I go for my cortisone injection on Thursday. I attended the gym session at the hospital last Monday, and am going again next week.  I can have six sessions, by which time I hope to remember what I'm supposed to do. At the moment I can't even remember what to do for the warm up.

Have fun, just you and the dog, Caroline, Sam make sure you don't do any housework!!

Christine xxx

Caroline
Hope the housework went well...lucky you!  Think I'll just capitulate to changing the bed pre my "I'm so pathetic I can't do anything" phase...

Christine 
Seroma eh?  There is so much to learn re this pesky disease isn't there and am sure I've been told but it obviously didn't register.  Anyway hope the regular massaging helps the L.
Your story of drying oils reminds me when my sister (who is arty, quite the opposite of me - in so many ways) did me some pictures before she went to Taiwan 15 yrs ago, she used that much oil paint they took about a year to dry - she's such an idiot!
This is also the woman who, when she's over here hires a car and when went to pick up car this time was told her license expired 6 yrs ago!  I ask you, and funnily enough she's hired cars in that period.  How can anyone be that badly organised?  I definitely got all the logical & planning genes.  So she's having to resort to the mega bus (not sure how its "mega" myself) whilst travelling up north and down to Southampton....might give her an incentive to be more like her sister!
What necessitated the DEXA bone test?  Given all the stuff in me am sure my bones are worsening (was osteopenic before cancer) - based on nothing of course!  But am keen to have some test to see whether that is indeed the case so can do something about it.  

Can't say I'm that chuffed about not being able to ride bike or go to gym for 6 weeks post op but don't want any (more) bits falling off or damage the sticky plasters that will be holding what's left together.  Walking it is I guess.  As long as am ready for Paris in 2024 then all will be fine...not sure which sport I'll be excelling at yet...decisions, decisions eh?

Oh and finally found out that op is (lucky) 13th!

Sam X

Hi Sam,

Dday approaching fast,eh.?  You'll be fine, if an old mare like me can bounce back, a fit young filly like you should be up and running, biking, etc in no time.  I started normal activities after three weeks, but your surgery may be more invasive than just lopping off a boob!

The DEXA scan was automatically ordered when I agreed to take the Letrozole, and the reason is that the medication can cause osteoporosis and they need a baseline scan to keep an eye on things. I don't think Tamoxifen has the same unwanted effects as it works in a different way although to the same end. I have refused to take the bisphosphonates to protect the bones because they only offer 1% extra chance of longevity and can cause serious side effects and I can't see the value. If you already have bone strength problems, however, you might be encouraged to take them.  I was surprised, yesterday as I returned from lunch out with my friend, to find a note from the pharmacy saying they had tried to deliver something to me and to call to rearrange  I was quite confused as I hadn't requested anything, so I phoned and was told it was my Vitamin D tablets!!! The health centre must have automatically ordered them when they got the blood test results- very efficient!!!

I can't wait for tomorrow and getting my knee injected. I take two codeine tablets at bedtime which help me to sleep, but I always wake up in pain when the heating comes on. Stupidly, though, rather than just getting up and taking more pills, I lie there, in pain, waiting for my alarm to go off. .???

I go for new hearing aids tomorrow, too.  I was delighted to get a phone call offering me an appointment only a week from my chat with the doc. I have been watching TV with subtitles, which is ok for pre-recorded programmes but live discussions bring some very peculiar sub-titles.  My little boxes are already in place in the spots where I have been known to leave my hearing aids for Archie to chew.

Enjoy your extra week pre-surgery, get your cycling and gym work done. 
 

Christine xxx
 

Thanks Christine,
Will ask my BCN re the DEXA scan and heads up re biphosphates noted as they have been mentioned.  My BCN nurse also mentioned oral chemo...great!  But often she's quite off the mark so am not getting too excited at this stage.

I can't imagine my surgery will be any different, its a mastectomy RHS and wire excision LHS (just found out they put the wires in the day before so will achieve my life goal of joining the Borg).  I will be taking it easy but will be looking to do a little more than just blummin' walk after 3/4 weeks...I'll go crazy otherwise.

So got my v pillow, my front fastening bra, a softie, a knitted knocker (great charity), shoulder bag for drain and small heart pillow so we're all good to go!

My main challenge this week has been trying to get sister back to Taiwan without going via China, as most flights do.  She was booked on a flight which meant she'd have to travel from one Chinese airport to another...best avoided I think, plus if she goes near China she has to be in self imposed quarantine for 14 days.  We tried to get her some masks (that her employers are insisting all workers wear) and the pharmacies over here are already cashing in, the cheapest work out at £1.50 each, in Taiwan they are now government controlled and charge a max of 3p!  Anyway the boyfriend managed to get some on (although I hate using it) Amazon so she'll be fine, although he did point out that she may as well just get some string and strap a tenner to her face...
So yesterday we went, whilst in London, to the airline she's flying back with (as they're not answering mails or phone calls) to cancel return leg via china to be told they've changed her flight anyway, still via different Chinese airports but now she can cancel as they've changed flight which makes life easier.

So fairly dull rest of week in run up to operation, am hoping at some point that they'll let me know the time and also when to be in day before for radiation injection though no doubt that will also be very late in the day too.

Was thinking of your dicky knees yesterday when on bike and could definitely feel mine...need to up my physio exercises (that I am rubbish at remembering to do except when at gym).  However given will be needing to to arm exercises for a while could add them on I guess...every cloud and all that!  Hope the knee injection helped.

I also think it's important not to disrupt the fabric of the universe by not getting up before the alarm...not had any toilet related accidents yet but its been close...

And I want to hear that the new hearing aids have no Archie dribble on them.

How are the oil features progressing?  Can't recall if I told you but in the sprinting of trying to be "creative" (well as creative as I can be - its got to have a practical edge) I have some cushions that need creating, this will be a job post surgery...lets see how many failed attempts it takes eh?  Zip or no zip is the question given only machine sewed 30 years ago and that was to put patches on jeans (that I was exceptionally good at!).

Caroline & Christine

How are you both doing re low moods? How long will you give the Tamoxifen if things are not/don't improve - as presumably there's other hormone tablets available?

Got, as well as insertion of wire & injection of radiation on Weds my 2nd zolodex which other than mad sweats doesn't appear (thankfully) to be giving me any problems...the Letrozole will need to be taken at some point soon I guess,  when were you supposed to start taking your hormone tablets?

Joined a facebook DIEP group but think I need to stop reading all the posts (some horror stories!) and just read one how you shouldn't/can't do any abdominal exercises for 18 months post DIEP surgery! Seems a long time and I like my pathetic attempts at building a none-pack!  Some good photos though of what's to come on the other side.

Need to make an effort to clean house before op but that said, think I'll have a sofa day today - its a little blowy outside....watch out Archie doesn't take off (what type of dog is yours Caroline?).

Sam X

Hi,

You are impressively organised, although you have been waiting for this for a long time. I certainly had it easy just going straight for the surgery.  They wanted me to start the Letrozole two weeks after my second op, but I managed to avoid it for another six weeks or so.  Now I think I might be getting away easily with that, too, as my side effect symptoms are minor compared to the pain I had in my knee.   Pain, which I am delighted to say, is considerably diminished since Thursday. My wonderful doctor injected both knees and I woke up on Friday morning pain free!!! It still hurts a bit now and then but nothing like it was before. I think my knees are going to send him a valentine card!  In the afternoon I had to go for the new hearing aids and do some shopping so I didn't rest the knees as much as I was supposed to, but I am 90% better than I was so I'm not complaining.  I am so much better that yesterday Archie and I went for a long walk up the lane at the end of our cul de sac, leading to two fisheries, several fields of sheep and ending up at the deer farm.The horses have been taken indoors for the winter and there were only six deer outside, the rest were probably in their covered shelter, sensible creatures.

My new hearing aids are amazing, I can now hear myself saying words beginning with 's' whereas before I had lost all such high frequency sounds.  I don't need subtitles on the telly and the volume is down to normal!  The aids are being put away, religiously, at night and stashed on top of the wardrobe, way out of Archie's reach. I hope I remember to do that every time I remove them.

I had to go to a different hospital the day before the surgery to get my radioactive injection.  It was nothing, I didn't even go blue!  I had a letter telling me to phone the ward at 6pm the night before surgery to find out when I needed to go in. I was quite surprised the first time when they said come in at 8o'clock, we were in the pub!  By the time I went for the second op it was old hat. 

It was lucky that your sister came over when she did, she or she could be languishing in quarantine in China already. What a palaver getting her flight cancelled.  What are her plans now then?

My painting still has very vague features, in fact the man's have been wiped out as I realised I hadn't made his face quite long enough. He's wearing a smart jacket now, a decent shirt and a half done tie. It has a pattern on it that will need a small brush and steady hand to get even a rough likeness, so I will wait until everything else is finished and dry before doing that. The lady still has orange hair and vaguely recognisable features, not that they are hers, necessarily. Her jacket now looks ok but her dress has a pattern that I'm going to struggle with.  I might use artistic license and give her a different dress altogether. I'm only going to start her face and hair after her husband is done because he is easier to get a decent likeness as he has strong features, whereas she is quite pretty, not what an artist wants to paint, at all! I have to wait another day or two to see if today's efforts are dry.

Today I thought I was going to get away without walking Archie as every time I opened the door and offered him out he gave me a look and went back in. However, there was a window in the cloud for about half an hour and we went for a short walk. There was a lot of debris on the main road from old trees that border one side but the rain held off until we got blown back indoors. He looks funny in the wind with all his hair blowing in all directions.

Enjoy the next couple of days, and I hope all your preparation makes things easier for you come d-day.  If we don't hear from you before, all the best for your surgery and hope to hear from you after the event all bright eyed and bushy tailed.

Christine xxx

Hi ladies,

So my mood has lifted and feel ok again, just constantly tired but I can live with that. Might mention it at my 6 month check up in April, if still happening then.

Sam, count down now!! Are you feel a bit apprehensive? They were going to do the wire insertion before my surgery, which I was worried about but then there was no need as the surgeon was confident that the lump was big enough for her to find. 
My dog is a springer spaniel. He is 9 years old and quite a lazy but intelligent dog! He's a proper mummy's boy. 

Keep us informed with how it goes on Thursday! The day after my surgery I felt like pants, but due more to the anaesthetic I think. By the second day I was out walking the dog and making jam! I joined a fb breast cancer group but left after a week as I found it too depressive!!! I didn't want to hear all the awful stories and wanted to stay positive, so left. 
Christine, how wonderful to hear that your knee is so much better!! And that your painting is going well!! Good news about the new hearing aids too - just make sure you remember to put them away!! 
My hubby is taking my 3 boys away next week, snow boarding until next Sunday. I don't do snowboarding as broke my arm at the local practise dome!! I will miss them all terribly but will be in bed very early I reckon.  Then I'm off to Iceland in a couple of weeks, for a friend's 50th. So busy times ahead!! 
Take care lovely ladies and look forward to hearing your news soon.

Caroline xx
 

Hi Caroline, 

I find my mood has lifted since my knee stopped hurting so much, but, like you, I feel desperately tired. If I can get my *** into gear and start doing something, I'm ok but I could sit on it all day before it can move. I am sleeping very well, so that's a positive. I'm using a Fitbit that my daughter passed on to me when she got an upgrade. I only use it to see how much exercise I am getting in a day and how much sleep I get at night. My daily step count isn't fantastic but it is improving every week.

i am shocked to hear your Springer is lazy, is it just his age? When I had one I couldn't tire him out. I never knew such an active dog. They are smart though, not like my dozy bones Archie, who isn't interested if it isn't edible or expensive to replace.

You'll be able to rest a bit more when the family are off on their jollies. It sounds like you are really getting your life back together and it's good to hear.  I'm getting there, too. Now my knee is less troublesome I shall be doing far more then I have been.

Christine xx

Hi Caroline, 

I find my mood has lifted since my knee stopped hurting so much, but, like you, I feel desperately tired. If I can get my *** into gear and start doing something, I'm ok but I could sit on it all day before it can move. I am sleeping very well, so that's a positive. I'm using a Fitbit that my daughter passed on to me when she got an upgrade. I only use it to see how much exercise I am getting in a day and how much sleep I get at night. My daily step count isn't fantastic but it is improving every week.

i am shocked to hear your Springer is lazy, is it just his age? When I had one I couldn't tire him out. I never knew such an active dog. They are smart though, not like my dozy bones Archie, who isn't interested if it isn't edible or expensive to replace.

You'll be able to rest a bit more when the family are off on their jollies. It sounds like you are really getting your life back together and it's good to hear.  I'm getting there, too. Now my knee is less troublesome I shall be doing far more then I have been.

Christine xx