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, 

I've been told by a friend that she takes it after her evening meal, as she feels less nauseous in the morning that way.  I'll just have to work out what's best for me!

Congratulations on going back to the gym. It's not my idea of fun but my son's partner lives for that, and running! Actually, I'm going to ask today about an exercise class run by the hospital physio department. My therapist mentioned it at my first visit, and now I'm back to normal, except for the knee I think I should sign up.  I think it's just a six week course to get going after the surgery etc.

Cxx

Hi

Just a quickie to let you know am still in the land of the living though don;t feel like it.  For those who watched Dracula I look and feel like Jonathan Harker post leaving castle!

Will write more when have some enery......soon I hope...

X

Hope you feel better soon. Take it easy until you do! 

Cx

Ok, I'm back!

Someone thankfully flicked a switch overnight Monday so yesterday felt human again and comfortable in my own skin...always a plus I find.  Timing was good as well as had my (please let it be) last MRI, this took 3 hours as had raised with the hospital CEO about radiology depts unwillingness to use ports to deliver contrast.  Both my hands hurt so I refuse to have them cannulated and it always takes at least 3 attempts to find elusive veins, a joy for me and the radiologist (and the consultant they eventually have to call to do it!).

So I was accompanied by the hospital deputy director of nursing who also experienced first hand the refusal ( on no solid grounds other than unwillingness to challenge the norm and invest in some training/education) of the radiology dept to use suitable equipment (my port) and make life just that bit nicer for the patient (crazy eh?).  Anyway feel like I've achieved something as the radiology chief auto-bot (catch phrases "no" and "its policy") promised to review their outdated policy - and I made him look me in the eye & shake on it too.  Luckily the dep dir of nursing is on a similar mission so something will happen for future me's.

So had an uneventful new year (never a big thing for me) as was in zombie mode.

My mission today is to gather the 30-odd (I may have overdone it) questions re surgery into some sort of order, I'll be nothing if informed.  And Christine your experiences have been really useful in this respect so thanks again.

So we'll see whether pesky lumps are still with us at meeting with surgeon next week, am not really sure the implications of whether the lumps have dissipated or not - I mean they're still going to do the mastectomy.  The boyfriend will be with me at meeting, always a challenge as he's not comfortable with anything medical.....am sure he'll be a great help!!!  And as am a terrible partner do quite enjoy watching him squirm, and some of my questions will definitely have that effect...

Christine - how's your Wallee life? (Love that film and do think it will be reflective of our future - in a lot of ways already is!). Is the TENS machine working yet?  Do hope you get some knee relief soon and hopefully its improving now you're free of your son's (still cream??) stairs.
Your plight re hearing is like my mothers (I was amazed at how much hearing aids cost!) but she is quite insistent at having the volume so high so the house shakes & my ears bleed, apparently her hearing aids need their tubes cleared or something and luckily for her unlike your son (who's just like the boyfriend, boys & tech eh) I am far too tight to have such expensive TV equipment....mind you mine is all hand-me-downs form the boyfriend (too tight to invest in something so trivial myself).
Am glad that, despite the naughty stairs, you were very well looked after.  Cream carpets always a bad idea in my book (how impractical?), better to get something more cat sick coloured I find personally.
Interested to hear how you get on with your bone thinning strategy as have early osteoporosis and am keen to keep dem bones in good density and know that the hormone meds that am soon to take will not help, am hopeful that calcium and exercise will help but we'll see.  Back to gym with Caroline and cycling from tomorrow...
Not sure if I mentioned but from Monday will be on Zoladex (to dry up ovaries as not sure whether am in or post menopause, I think post as no periods since March) and sometime soon Letrozole is my hormone drug of choice so am with you both (will however be ensuring that I take a full box on my travels Caroline!!).  

Think I'll be glad to have hormones dampened (though am not at all sure how these things work) as following the chemo have become alarmingly over emotional (not like me at all), especially when reflecting on lovely things that people do.  Nearly had an episode whilst telling the matron of chemo unit yesterday how fabulous her team had been, she was really worried it had all got too much and I needed someone with me at the MRI...bless her.  Thankfully my (superglued) false eyelashes held in there.

Happy lack of hormones eh??  I hope they're kind to us all.

Caroline -  Your Mum had a go at you about alcohol consumption eh? cos you're only 16 and not a grown lady after all, and after all you've been through I'd be welcoming a week of being legless, never mind a wee bit merry for a day.  Mothers however can be from different generations and am sure she only had your best (liver?) interests at heart.  Thankfully both mine can, and often do, drink me under the table ( am convinced they suffered during prohibition and have been making up for it ever since...).  Bunch of lushes that we are.
I am planning a week (when feeling up to it) of living on copious amounts of alcohol (from breakfast through to night cap time) blue cheese and pate....I will warn the local A&E beforehand to get stomach pumps at the ready.
Hope you're enjoying your "normal" life (often under-rated).

Sangha - Hi and although chemo was quite challenging at the end up till then I had very few side effects, never was sick or felt nauseous.  It was just at the end when I felt the cumulative effect of the treatment and bear in mind everyone is different, I know people who have sailed through it.  I lost a fair bit of my hair but for me that's not important (and I look quite good, as do a lot of people, with very short hair) I just got sick of it falling out and not being able to style/wash so had it shaved off...a good decision for me.  
I certainly second Caroline that having a positive disposition will really help, use it as an opportunity to chat to cancer support staff and patients, I really enjoyed this aspect, especially as am far too gobby for my own good.  Also do use friend and family support, people will amaze you and I hope will support you in challenging times.
Good luck with your treatment.

Right enough from me, time for a lovely shower (oh dear its gone midday).

Sam X
 

Hi All,

Glad to have you back, Sam. Before I forget, for your mother, you can get perfectly good hearing aids on the NHS.  You require a referral from your doctor, first, then you get to choose where to get your hearing tested. You can go to a Specsavers.  Full audiology tests and digital aids tailored to your own hearing.  All free, plus ongoing free batteries and tube cleaning etc. for three years. You get tested again, then and continue. The alternative is to go to your hospital audiology department, paying hospital car park charges and waiting times. My friend's husband went down the hospital route at the same time I went to Specsavers and we have identical aids, plus when he lost his after a drunken dinner party and I had mine chewed to destruction by Archie, we both paid only £68 for each new one.

After all you have gone through so far I am sure you will find the surgery the easiest part of your treatment. Recovery from the initial surgery will be fine.  You might find your reconstruction a bit harder, but just think what you can do with your pert little boobs. Go topless on the beach, be a page three model, (do they still have those?) and buy shirts that button down the front without having to worry about gaping!

If you already have signs of osteoporosis you may be offered something different to Letrozole as that is a bone killer. Or you might have to have the bisphosphonates that will protect them. I've said I don't want the bisphosphonates but if my bones start crumbling I suppose I will have to now I've started on the Letrozole. That's why I want to find other ways of improving bone density.

Zoladex, lovely - instant menopause! Hope it's not as bad for you as my  instant one was.  I was on HRT then I was advised to stop it because of the risk of getting breast cancer (Ha!)  I agreed and stopped it, but I was told later it should have been tapered off, not just stopped. The result was a short but very traumatic menopause. Just have plenty of sheets around as you may be changing your bed every day, I couldn't believe anyone could sweat so much!

That all seemed just for Sam, now for you all, more generally 

I've been to the physiotherapist today for my knee and had the works, ultrasound, TeNS and laser treatments plus massage and exercises. It felt great when I left with orders to go straight home, have a cup of tea and put my feet up. An hour later it's started hurting again  She has suggested I go to the docs and ask for something to keep me going for the six weeks until my NHS physio appointment, possibly a cortisone injection.  The last one I had on the other knee a couple of years ago worked wonders, so I hope I can get one for this knee because there is nothing to make you feel old like not being able to walk!  

I have ordered a TENs machine that is due to be delivered this afternoon - that, at least,  will stop the pain and I've ordered one that I can move around with, that might be enough to keep me going. The physio said I can keep it on all the time if I want, you can't overdo it, apparently. I hope I'll get some housework done then, I am just doing the bare minimum at the moment and I made such good plans to start clearing out the clutter I've accumulated over the few years I've lived in this house. 

Day three of the Letrozole, so far so good, but I expect it takes a few days to kick in, I'll keep you posted re side effects as I notice them.

C xx

Hi ladies!!

lovely to hear you have come back into the land of the living!! 
I reckon surgery will be a doddle compared to chemo!! In regards to menopause - I think I was peri menopausal before the cancer. I went to the drs in May, just a month before discovering the cancer, as I was constantly tired. My GP said that I maybe was perimenopausal but a blood test probably wouldn't show it as hormone levels would be up and down daily. I've had 2 periods in the past year but I do have a mirena coil in too. My bones show mild thinning so classed as osteopenia so I do have to take the adcal calcium tablets (not picked up yet).  Being back at work after 2 weeks off must of worn me out as the past 2 nights even the night sweats haven't woken me up and today I slept through 5 alarms and over slept!!  Good to hear you stood your ground at your MRI and took the chief nurse!! I think it does management good to see the problems patients face!! Well done!! (I work in a hospital so know how crap things can be.
We are here though, with advice of boob surgery!!

Christine, fingers crossed that the tens machine helps. My hubby has one of those although bought originally for a painful shoulder, he also uses it on his stomach to try and enhance a six pack! Living with pain in any part of your body isn't something we should have to put up with. Normality is going ok - but getting slightly peeved with people still asking me how I am, with the sympathetic tone or look!! I keep telling them that it was all last years problem and this year is a fresh new healthy one!!

Right, time for me to feed the troops so will shoot off!! Then I'm off to the gym again!! 
Caroline xx

Hi Caroline,

You made me smile about people asking how you are with that voice! I am glad to have my knee to complain about so they forget anything else.  

It was interesting to read that you went to your doctor about constant tiredness before you were diagnosed with cancer.  I didn't go to mine, but I sat for a good two months wondering why I was so tired and if I should make an appointment, thinking I must be anaemic or something, then I shrugged it off as old age and didn't bother going. I don't suppose it would have made much difference to the outcome if I had done.

My TENS machine arrived and I have been using it this evening.  It works while it's on but I'm still taking a pain killer before I go to bed rather than try to keep the machine on while I sleep. I can't wait for the knee to get better so I can get back to normality!

Cxx

Christine, if it doesn't work too great on your leg -try on your tummy! Then you will have a lovely 6 pack to go with your new boob!!! ;)

:

Ha! Ha! Which one? The dangly DD or the one that's not supposed to be there ?

I'm enjoying the sensation on my knee far too much to think of moving it. xx

Hi C&C 
Good to hear from both of you.

You'll be glad to know that my surgery (and beyond) question list now exceeds 60!  I have suggested to the BCN that she may want to go through before meeting with surgeon to ensure make full use of their, no doubt, limited time.

Went for my complimentary MacMillan massage this morning...lovely, I do like being pampered and will be missing my annual visit to a spa with girlfriends in Jan (its our Christmas present to ourselves!).  I have reiki next Friday and reflexology at some later date, neither of which have had before so should be fun!

Felt sorry for the poor guy though as all I did was yack on, not sure I got the full benefit but loved it anyway.

Its good that a sense of normality has returned and can do dull household chores and manipulate those exciting spreadsheets again!

Caroline - am impressed at your ability to sleep in, that is impressive.  Do you think you body is rebelling about having to work?

To finish up on my port crusade I sent a follow up note to the hospital CEO stressing disappointment & ignorant policy...I laid it on nice & thick, also that I'd be reflecting the stark contrast in patient care between the chemo dept & MRI dept so there's glowing & defintely not glowing reviews on NHS website appropriately and also I thought it was worth the CQC being aware too!  Think that's it on that one for now, am sure will find a new mission soon...more social injustice to right!

I'll certainly ask my Mother why she chooses not to get hearing aids on NHS, it never occurred to me.  On the plus side good to know for me as my hearing is rubbish, no doubt from years of having to listen to myself ...am not a quiet person!

So I think its just my feet that are still a little odd, my taste buds that have yet to recover their full flourish and skin that it still very dry in relation to how it was (as a teen used to get bad acne and until start of chemo still got the odd spot as have really oily skin, which as got older was v glad for as kept lines at bay but now skin is far from oily and apart from one odd chemo related breakout have had no spots at all...I miss them!).
So given taste buds still challenging and don't like convenience food (plus supermarket prepared food is so tasteless & often unhealthy) am going to endeavour to cook lentil daal & Bombay potatoes next week.  My spice rack will be looking very full indeed!  Will be freezing some for post op easy nosh too (I like to give the impression of being well organised...).  Wish me & my taste buds well as am not a natural born cooker (far too lazy and disinterested and would much rather others do the hard work and I feast on the output!).

Christine- am hoping that the TENS machine is having the desired effect (knee or 6 pack, maybe both eh) and that your pain is subsiding somewhat.  And was I surprised to read that that blummin' Archie had scoffed a hearing aid...not at all.

And snap with both of you, prior to my diagnosis I was really tired and also felt quite depressed (which is most unlike me) and I put this down to the cancer, there has been studies that show that as your body rallies around the cancerous area trying to sort it out it depletes your mental reserves and can cause these unwelcome effects, it was quite a relief to get the diagnosis to be honest!

Whilst Christine is on her TENS I will be brushing my feet this evening, was told earlier (by masseuse) that this will help stimulate nerve endings and help speed feet recovery!

Right bike ride tomorrow although am disappointed in this weather, it is far too blummin mild, when will we actually get some frost?  B****y ridiculous.

Sam X

Hi C&C 
Good to hear from both of you.

You'll be glad to know that my surgery (and beyond) question list now exceeds 60!  I have suggested to the BCN that she may want to go through before meeting with surgeon to ensure make full use of their, no doubt, limited time.

Went for my complimentary MacMillan massage this morning...lovely, I do like being pampered and will be missing my annual visit to a spa with girlfriends in Jan (its our Christmas present to ourselves!).  I have reiki next Friday and reflexology at some later date, neither of which have had before so should be fun!

Felt sorry for the poor guy though as all I did was yack on, not sure I got the full benefit but loved it anyway.

Its good that a sense of normality has returned and can do dull household chores and manipulate those exciting spreadsheets again!

Caroline - am impressed at your ability to sleep in, that is impressive.  Do you think you body is rebelling about having to work?

To finish up on my port crusade I sent a follow up note to the hospital CEO stressing disappointment & ignorant policy...I laid it on nice & thick, also that I'd be reflecting the stark contrast in patient care between the chemo dept & MRI dept so there's glowing & defintely not glowing reviews on NHS website appropriately and also I thought it was worth the CQC being aware too!  Think that's it on that one for now, am sure will find a new mission soon...more social injustice to right!

I'll certainly ask my Mother why she chooses not to get hearing aids on NHS, it never occurred to me.  On the plus side good to know for me as my hearing is rubbish, no doubt from years of having to listen to myself ...am not a quiet person!

So I think its just my feet that are still a little odd, my taste buds that have yet to recover their full flourish and skin that it still very dry in relation to how it was (as a teen used to get bad acne and until start of chemo still got the odd spot as have really oily skin, which as got older was v glad for as kept lines at bay but now skin is far from oily and apart from one odd chemo related breakout have had no spots at all...I miss them!).
So given taste buds still challenging and don't like convenience food (plus supermarket prepared food is so tasteless & often unhealthy) am going to endeavour to cook lentil daal & Bombay potatoes next week.  My spice rack will be looking very full indeed!  Will be freezing some for post op easy nosh too (I like to give the impression of being well organised...).  Wish me & my taste buds well as am not a natural born cooker (far too lazy and disinterested and would much rather others do the hard work and I feast on the output!).

Christine- am hoping that the TENS machine is having the desired effect (knee or 6 pack, maybe both eh) and that your pain is subsiding somewhat.  And was I surprised to read that that blummin' Archie had scoffed a hearing aid...not at all.

And snap with both of you, prior to my diagnosis I was really tired and also felt quite depressed (which is most unlike me) and I put this down to the cancer, there has been studies that show that as your body rallies around the cancerous area trying to sort it out it depletes your mental reserves and can cause these unwelcome effects, it was quite a relief to get the diagnosis to be honest!

Whilst Christine is on her TENS I will be brushing my feet this evening, was told earlier (by masseuse) that this will help stimulate nerve endings and help speed feet recovery!

Right bike ride tomorrow although am disappointed in this weather, it is far too blummin mild, when will we actually get some frost?  B****y ridiculous.

Sam X