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

Oh Sam!! 
 

That's proper pants!! You would of thought that the chemo would have wiped out any cancer!! So, was the cancer in your sentinel nodes and you have now got to have an anxillery node clearance?  I was lucky enough that my hospital could check my nodes during my op and would have done a clearance there and then if needed. But hopefully the scan will show it hasn't spread anywhere else! And let's hope that no more chemo is needed. 
After my first and second op I used bio oil gel on my scar. It worked really well and my scar looks brilliant now, compared to initially. I used Aveeno cream when I had radiotherapy. I used to put it on in the morning and then again at night. My skin didn't get sore at all, but I've always been a bit of a sun worshipper - although never topless!  It did change colour but not till after the radiotherapy had finished. 
You are a tough cookie and we will help get you through this. I'm not one for praying but do believe that positivity works wonders so I will be sending lots your way. 

xxxx
 

Hi, I hope that you don't mind me contacting you, it has nothing to do with breast cancer, although I did have a scare last summer which turned out to be fine.  I just wondered how your friend with the nose cancer is.  I have had one sided congestion and bleeding fro a long time now but thought nothing of it, anyway I saw my GP on Tuesday who examined my nose and said that it need lookinng at sooner than later.  I have an urgent referral to ENT consultant on Monday.  I am literally going mad with worry and as nasal cancer is so rare, there are no posts about it.  One kind lady did respond to my post, but there is nothing else.  I would be so  grateful if you could give me some information about your friend.

Many thanks

Lyn

Hi Lyn,

My friend is doing ok. The cancer she has is a slow growing one but is starting to now press on one of the arteries in her face. She is having a stent fitted soon, to keep the artery open until they operate, in April to remove it. She is now under a different hospital, that is more specialised as the local hospital weren't knowledgable to deal with it. She is very unbeat and positive. And amazing  . Initially, like you she was full of dread and was convinced it had spread but once the scans had been done and they could confirm everything, she is a lot calmer now.

Caroline xx

Thank you for coming back to me Caroline, do you know how it started, what tests they did and what type of cancer it is?  I have read terrible stories about disfigurment after surgery.  Why has she had to wait so long for the operation?  

Lyn 

Sam,  

I'll try again to give you my reflections on your latest news. I was in full flow yesterday until it disappeared right at the end as I was re reading it to see it made sense. Perhaps the internet gods thought it was rubbish!

First, care of wound, I did nothing excep wash and peel off dried glue. I was never told to massage it, let alone what to use. My scar is like a very big bra underwire, going from my armpit to the centre of my chest. It did heal very well and they were mostly dealing with my rapid fill drains, then when they were gone, the rapid fill non boob!

Secondly,  Your physiotherapist will be your friend over the next few weeks. She will show you what to do to avoid the seroma in your arm turning into lymphoedema and if you get cording, as I did, she will relieve it for you. My physio was the only professional I saw for a few weeks and it was she who called the BCN about draining my seroma, then later she referred me to the lymphoedema nurse.

Thirdly, the dreaded lymph node clearance  My experience of this was tainted by the feeling it was unnecessary, but even from that viewpoint it wasn't too bad.  The exercises were easy enough and my range of movement was pretty good right from the start, although the operation is more invasive than the mastectomy because the surgeon had to go in and dig out rather than just lopping off.  Your underarm will be more painful for the first week or so. You may get cording, which in my case, felt like a string going from my armpit to my wrist that didn't like being stretched. It was quite a sharp but short lived pain when I stretched it further than it liked. The physiotherapist massaged it, very gently, and after two weeks it was completely gone. I had what she called over sensitivity on the underside of my upper arm which felt like it was being scraped with rough sandpaper and she showed me how to teach it to ignore the feeling. The sensation or lack of it, in the armpit is quite disconcerting and seems to be permanent. It still feels alien to look in the mirror and see that I am washing myself while not feeling anything  I feel I need to be really careful when drying the area. Putting on deodorant feels weird!

Fourthly, delay in radiation for a month - be grateful for a month of relative normality I was really glad of that few weeks I took off before agreeing to take the Letrozole. If my flipping knee hadn't been so painful I would have had a great time.

Getting back to bike and gym - needn't be delayed too much as long as you work within your new limitations  Don't forget my limitations were pandering to the kids' fears.

Need to rearrange prosthesis fitting - no biggie, I'm still waiting for mine  Dangly DD seems to be getting droopier and dangler but I can't comfortably wear a bra because of the non boob, so I only bother if I'm going to be seen by anyone other than family and dogs/dog walkers. I'm wearing vests to hold DDD close so it doesn't rebel and try to hit me in the eye. Think I would go for a second mastectomy but the kids don't want me to put them through the trauma again. They really are worry warts, I don't know where they get it from.

Incapacity - the anticipation is worse than the reality  I was driving as soon as the drain had gone, and you won't have one to worry about! If you can comfortably move your arm and turn your head you'll be fine.

Raining - invest in a good waterproof coat and wellies. There's no such thing as bad weather, just the wrong clothes! Walking is recommended and so good for you! Preaching over!

Fifthly, Letrozole, I feel a bit of a fool after making so much fuss about the cost/benefits of taking Letrozole because I have been very lucky. I get a few hot flushes, but no night sweats. I felt a bit nauseous the first week or two and went off my food for about six weeks, lost over half a stone without trying but I have nearly gained my appetite back and have gained a couple of pounds back.

Bisphosphonates, as you already osteopenic you are someone who probably needs them, see my last post. Have you done the NHS PREDICT thing to see what your prognosis would be with and without them?  In my case it was 1% extra chance of being alive after ten years, and given my age and Corona viruses I'm prepared to take my chances without them.
 

I think that covers everything.  Like you, I'm a cockeyed optimist, which everyone tells me is the best way to be, but there were times when I felt totally peed off and chocolate helped! I even finished off the Bailey's from last Christmas, one week!  You are going to find this perishing disease fills your head more, now, but as you can see from both Caroline and myself, there is a future  You've already had it tougher than me because I escaped the worst treatments, and it may be you have more to come but it will pass. 

Good luck with your scan, keep your pecker up but if you feel the need to rant and rage you know where we are!

love

Christine xxx

Hi Lyn,

She has polymorphous ademocarcinoma. It started when she decided to get her hearing tested. They found her ear drum was not quite right. Sent her to GP, who referred her to hospital. Think initially they did an endoscopy which they did find a lump but weren't concerned - didn't even give her the results! She went back 6 months later where they did the endoscopy again and found it had grown, then she got told they thought it was cancer. Was sent off for lots of scans which confirmed it. Think they did a biopsy too. They attempted to remove it through the roof of her mouth, in August but when she went back for a check up and they did another biopsy, they found it was still there. They then referred her to a London hospital as they had more specialist drs. They have said that they will have to go in through her face. They said because the cancer is very slow growing, there wasn't too much need to rush it through. Initially she was going to have it done in June, after her holiday but they have now bought it forward as its pressing on the artery.

cx

Christine, this has made me chuckle while reading. Sam, we are your wing men, so you have us to back you up xx

Thank you Caroline, for the information about your friend, you are very kind.  I have been reading the posts between you and your pals and you are all so poitiive and fun people, making the best of things, I wish that I could be the same, just want to get to Monday to see the consultant.  My appointment is not until 4.30 so I suppose that it will be too late to have any tests done that day, it is the fear of the unknown  that is making me a nervous wreck.  So happy that you are on the road to recovery and getting on with life.  I went to Iceland last year isn't it a lovely place to visit, but so expensive!

Lyn xxx

Hi Lyn,

Completely agree that it is the fear of the unknown. I think what made it all a bit easier for me is that I have been around cancer now for a number of years. I volunteered for 5 years, in our local hospice, where I worked on the inpatient unit. I absolutely loved it - if I could make someone's day a bit brighter it felt so lovely. I now work in Palliative care so am around seriously ill people a lot of the time. I think having a good support around you and having a bit of knowledge helped me to remain positive. I've seen people who are at the other end of cancer so I know I've been lucky and determined to stay that way!! I could say don't worry, but that's pointless - we all worry!! But do try and stay positive. Positivity is a huge thing for me. If I can focus on the positives, the negatives are easier to tackle. And I know that worrying is something quite pointless - it won't change the situation and just brings you down. Try to keep busy and look for the bright things every day xx

Hi Caroline, what a wonderful, worthwhile job you have.  I work two days a week for an animal charity as a shop manager, and raising money for our rehoming centre gives me so much pleasure.  Positivity, sadly, is something that I lack regarding health.  I know that I suffer from Health Anxiety.  THe doctor that I saw on Tuesday has given me a contact  number for  'Steps2Wellbeing' which is part of NHS Dorset Healthcare University.  I think that they can help with  things that are making people feel bad with life problems.  Anyway I am going to call them later on, it can do no harm.  Hope that you are having a nice day, it is grey and raining here in Dorset!  xx

Hi Caroline, what a wonderful, worthwhile job you have.  I work two days a week for an animal charity as a shop manager, and raising money for our rehoming centre gives me so much pleasure.  Positivity, sadly, is something that I lack regarding health.  I know that I suffer from Health Anxiety.  THe doctor that I saw on Tuesday has given me a contact  number for  'Steps2Wellbeing' which is part of NHS Dorset Healthcare University.  I think that they can help with  things that are making people feel bad with life problems.  Anyway I am going to call them later on, it can do no harm.  Hope that you are having a nice day, it is grey and raining here in Dorset!  xx

Good to hear you have some support!! Raining here in Hampshire too!!

Hi C&C
Thanks for your supportive & amusing notes. All good here, after last weeks news have regained my composure so am not quite so p155ed off.  I am however going to be complaining to my hospital about the missed opportunity to do the frozen section that would have given me weeks of my life back in the hope that someone in the future doesn't have to go through an unnecessary procedure like I do.

Caroline - you're spot on, the sentinel nodes were cancerous so have to have ANC.  More chemo will not help (think its gone as far as it can) however the hormone treatment will so that's fine.  Cheers for info re oil & cream, have started moisturising scar but it still feels decidedly yuck from my partially numb chest's point of view.  Still very positive here so fear not.

Christine - thanks for very comprehensive note, despite your technical challenges (the amount of stuff I've lost in cyber space!).Am off to dentist 20th, am positive will not need any extractions but always (ish) do as am told.  I'll not be having a drain again for ANC as produced so little fluid for round 1 and surgeon is thinking of stopping using them all together (I do get the impression I may be her guinea pig!).  The teaching to ignore pain part sounds very clever...hope I get some of that, if only I could ignore all the pains in my life eh?  And putting on deodorant already feels weird in the partially numb armpit so look forward to an extra helping of that.

I am quite worried by the potential violence within your remaining boob, am seeing it up for GBH at some time in the future!  

Glad the weather has turned today but rest assured my bright red poncho does a marvellous job of keeping me dry and also making me look like a right eejit....all at the same time!

I haven't noticed any side effects in the 3 days I've been taking Letrazole now but maybe its still early days?

My mood has been helped by having a lovely long weekend with pals from oop north and Ireland who have been most entertaining.  The pal from up north came down not only to see me but also to escape trench foot, she's from Snaith in the middle of the floods and left hubby at the ready with bricks just in case. Luckily my irish pal is more than used to inordinately large amounts of rain on a daily basis and lives in waterproofs!

Also went for a drive today, all including car & fellow road users survived so am happy we can do that again.

So tomorrow am having fully body CT scan to check no more naughty cancer elsewhere and the mammogram to try & locate missing marker clip thing ( I certainly haven't found it in the interim hiding anywhere in the house...).
Its my Mother's birthday Weds so she's coming up from the New Forest to see me and receive her lovely gifts (she may be disappointed!!) but more importantly see me of course!

My seroma is rapidly looking like I have a side boob under my arm, an interesting look.  
I've another northern pal down next week and have a big Saturday night out planned in that big London so am having lots of fun pre op no. 2.

Lyn (@christmas2018) - good luck with your treatment & keep the money rolling in for the animals.

Sam X

Hi all!

I'm hoping a week without any news from you, Sam, is due to you having too much fun to log in.  Caroline, it's good to see you are getting on with things, now. 

I have a little bit to report. I went for my knee X-ray on Monday and my appointment with the lymphoedema nurse on Thursday. I was told the doctor would get the results from The X-ray in ten working days and to contact the surgery if two weeks went by without hearing. It was quite surprising, therefore, to receive a phone call from the surgery on Thursday, saying the results had come in and the doctor wanted to talk to  me about them and would telephone me Friday afternoon! Hmm!

At the lymphodoema clinic on Thursday my measurements of the fluid in my non boob were good. The numbers were coming down a little but the nurse was a bit concerned by the discolouration of the skin so she asked me to contact my BCN.  She is referring me for laser treatment to the lymphoedema in the scar in a few weeks.

I did phone the BCN and she saw me yesterday. She isn't at all concerned about the discolouration, but is referring me for a scan and drainage under ultrasound guidance, again, in a few weeks.

After the hospital I did a bit of shopping then went to my daughter's to report on my hospital visit.  While I was there my GP rang about my knee.  The good news is I was not imagining my pain. The bad news is the knee is shot!  She said the cartilage is worn away, especially on the inside, where the worst pain has been, as the bone is rubbing against bone!  I asked what was next, and she said the dreaded words, "You will need a knee replacement!" Agh!!!!!  But then she tempered that with the word eventually.  I suggested we leave it as long as possible before going down that route as it is feeling a lot better than it was at Christmas and she agreed. Yay!!!
Then she said she wants me to talk to her again after Easter as it will only become essential when injections don't work and pain killers don't help.  Hopefully it will be ok for a lot longer than that.

I'm  beginning to understand my poor old mum, whose birthday it would have been today, when she used to say "It's no fun growing old" I used to blithely tell her to consider the alternative and be glad she was alive to grow old. Sorry Mum! 
 

Apart from all that I am going great. I thanked my doctor, yesterday for talking me into taking the Letrozole as my side effects have been negligible and I am feeling really well. She was delighted to hear that, as she only usually hears the problems not the results of her work.

Have a wonderful time in London, Sam, and Caroline keep up the girly weekends.

Lyn, I hope you can learn to relax your anxiety. We optimists still get illnesses but don't have the added problems of worrying about it so don't feel as bad.

Christine xxx

Hi ladies,

God Christine!! I was reading your post with my heart in my mouth when you said that the dr called you and wanted to see you urgently!! I was so worried you were going to say the cancer was back!! I'm actually thankful to see it's just a knee op needed!! One of my volunteers had a knee op on Friday. 6 weeks of no driving. And just think - you will be like the bionic woman!!  Hopefully the lymphodema will start to settle soon. 
 

Sam - how are you getting on? Did you say you had a date for your node removal?  How are you doing? 
 

im just on my way back from Tunbridge Wells. Had a night in the Mecure hotel for a murder mystery night, with girl friends. Have had a brilliant time but have also consumed rather a lot of Prosecco. 
Caroline xx
 

Thank you Christine, anxiety high, waiting now for results of nose biopsy.  I am happy for you that your knee op is not imminent.  Touch wood, I have no troubles in that department, but several of my friends do and I know how terribly painful it can be.  Two are due for their operations in the next  coming months.  I hope that the Coronavirus does not cancel their procedures because they are all psyched up now to go ahead.  Our poor NHS.  Hope that you are having a nice evening. x

!yn

Hi all
All good here and 'looking forward' to my op on thurs, in at 7.15 which given I haven't managed to get my lazy ar5e out of bed before 8 may prove to be a challenge. My pal who's playing nurse will have to drag me out of bed -by my good arm of course!
Other than that have my last free reflexology thing tomorrow and my zolodex injection Weds. Thankfully managed to get the wire insertion needed to locate the missing marker (yes they found it following the mammogram!) planned for the morning of thurs. Re this I did ask what happens if yet again the marker fails to be removed...apparently it's very rare to miss it once, not filled with confidence...and makes me think that it would have been far easier for them to remove the LHS one too as I wanted!!

CT scan was fine - no naughty stuff elsewhere (poor Adrian was so relieved, I fully expected these results).

Been having lots of visitors which has been great - get them to do all the lifting & shifting, and the worst chore of all...peeling & cubing butternut squash!  Why is it sooo tough yet sooo tasty??  Even went into London at weekend, I was hoping that the coronavirus might make the tubes less packed...not so, and doesn't even seem to have made people stop openly coughing (no surprise there really, sadly).

Can't believe how tired I still am and how little I manage to achieve on a daily basis...I do wonder how I'll ever manage to actually work a full day (and manage to get there on time as currently takes me at least 2 hours to get ready to go out and am not really sure why).

Christine - am glad things are progressing on the knee front in terms of clarification of issue, bone on bone sounds lovely! But another op so soon...arrgghh! Laser treatment for lymphodema eh?  Hope it sorts it out.  I still have my (sore rather than painful I think) seroma so know how annoying these swellings are so do hope yours clears off soon).

Yeah getting old is soooo much fun health wise but I do look forward to being an extremely cantankerous old(er) lady shouting at kids and driving even more annoyingly...there are benefits as long as your attitude is right!

I'm doing fine on the Letrazole, the only things that could be a side effect are an inconsistent bad back only on arising from my pit on a morning and starting off really stiffly leg-wise (the cats & I have stretches on a morning now at the same time) too but nothing to shout about, which is nice.

Caroline - Tunbridge Wells & prosecco sounds like a jolly good recipe, am still saving my start of alcohol reintroduction for an occasion...not sure why but am quite enjoying the martyrdom of not drinking.

Glad to hear you're all doing well.  Rock on Thurs!

Sam X
 

Hi girls, 

You are all too young to be called ladies, so from now on you're my girls!

Caroline, I think (hope) I might get away with less than six weeks without driving, if I have the knee op because it's my left knee and I drive an automatic, so no real reason to stop me. I will go absolutely stir crazy if that did happen.  I would really struggle because I live two miles from the nearest shop of any kind and five miles from the nearest supermarkets any direction, so couldn't really walk to the shops either.

Sam, good luck for Thursday, and expect to feel tired for a little while yet. I actually feel more like my old self now, but I think I might milk it for a while yet, as I used to do my daughter's cleaning for her, and she would love me to start again when I feel up to it  -  although she has said I can retire if I want to.  She has ME, so poor girl is always tired and in pain, yet manages to keep working in a very responsible and stressful job.   

I have just been given an appointment for the ultrasound guided drainage of my seroma, it's on 25th of this month, which is much earlier than expected.  Apart from that one, I have no other cancer related appointments this month! Yay!!  The last two times I had to go to the hospital I managed to get in and out in time to avoid parking fees!

I am still struggling to get a likeness for the lady in my portrait, I got her last week then realised the eyes were out of alignment and I was so miffed I scraped off her whole face instead of just the wonky eye.  I started from scratch and measured every bit of her face so I didn't make the same mistake twice and I am now ready to do the eyes again but must wait for the paint to dry or I could smudge bits that are ok now.  If she had an ugly old wizened face it would be a doddle but even at 78 she is really pretty so I want to do her justice.

Rock on, girls!

Christine xx

Hi Sam,

Just wanted to wish you good luck for tomorrow!! Make sure you let us know how you are afterwards.

Caroline xx

Hi C&C

Op was fine ta though since the anaesthetic has worn off it is a lot more painful than the "mere" mastectomy.  And the size of the new seroma (which seems to have popped up a lot quicker than previously) is larger and feels like a football under there..marvellous eh?
Anyway on the plus side had the pleasure of another lovely pal from York over the past few nights who did a splendid job of looking after me and allowing me to annoy her, we had much fun.  Soon to have another pal from Bristol over for the weekend and not sure I can summon removal of jimjams, some sort of wash and getting dressed just yet so that may have to wait till after her arrival.

On the plus side the more tactile of the cats has realised that sleep really would be nice and has stopped trying to share the V pillow with me which is a blessing!

My hair is growing so quickly, will need to make an appointment for cut soon as it is going to look very unkempt and make me look even madder soon, may well sneak in a dye patch test too as not sure am going to embrace my natural salt & pepper grey for too much longer (been like that since my 20s!)

And this blummin coronavirus overshadowing my cancer treatment - how bl00dy well dare it!  Soooo rude.  But do keep well both, on the plus side, for me something else beginning with C to contend with..

Tulips are about to pop around here and would like to do some gardening (pathetically of course) but think that might be a few weeks off yet.  Christine - love the updates re the faces, your persistence amazes me (I'm very impatient and would have screwed up the canvas by now) and am sure the lady will be very grateful of your perfection...good luck!

Have a good weekend, I will do when lying down & not moving!!

Sam X

Hi Sam,

Good to hear from you!! Sorry to hear that this op has been more painful!! Do you have a drain fitted and have they been able to tell you if your lymph nodes were clear or not, or do you have to wait for the results? Lovely to hear that your friends have been taking care of you and even the cat realising that you need the pillow more! Make sure you do lots of pjs and resting!!! 
This cv is making life very unpredictable at the moment, isn't it. I work with people who are in the at risk group so completely understand why we need to put plans in place but it's just not knowing everyday, what the plan is!! Not sure I'll get my holiday in April!!! Got my 6 month check up on the 2nd so hopefully that will still be going ahead, unless I hear otherwise. 
Loving that spring is now looking like it has arrived - just waiting for the rain to stop so everywhere isn't so muddy when I take the dog out!! 
Christine - will you be housebound if they say over 70's to stay in? Will you be ok??

Take care ladies xx