Christine,

Whilst it’s great to hear from you sorry to hear of your ongoing challenges.  It just seems to be one thing after another!  You must be tired and I hope you get some respite soon.

You know my thoughts on drains so your tale of the 750mls makes my feet go even more tender…luckily feet are on a turn for the better the last few days.  Am actually not too bad, maybe I’m just laying on too thickly, although that said I was thickening it up big time as composed a mail to the CEO of the hospital where am being treated to challenge their apparent policy re not using ports for having contrast during MRIs…told him I would be “terrified” (!!) over Christmas at the thought of another unnecessary cannulation in Jan..Don’t think I’ve been terrified of anything other than hard work…

How’s the contacting others re hormone tablets going?

Let us know what the oncologist has to say, I do hope there’s no further treatment as you’ve been through quite a lot already and there’s still quite a lot ongoing.  My surgery will be fine, am feeling good at the thought (despite all the drain shenanigans…think that’s the chemo equivalent of having to inject self, not something I’d choose to do but needs must) although found out yesterday (mess up at hospital apparently) that not seeing surgeon later today as it needs to be after MRI in Jan,...so now 15th Jan, by which time will have probably doubled the 26 questions I already have – serves them right!

Good luck with your falsie, given I will be reconstructed (all be it delayed) I would have thought that I won’t get one and will have a more temporary affair (sock in a bra stylie?).

I can’t believe given your knee you walked so far, why didn’t your generally over-protective offspring come to your rescue?  There when you don’t need them and not there when you do, kids eh? (actually they sound more like Nanny McFee).  Glad you’re taking advantage of your private medical as mid Feb is ridiculous, better all-round the option you’ve taken I believe.

And obviously you need the extra challenge of your dog, so glad he’s ok but what a daft (and greedy!) dog, I bet that was a cheap procedure too eh? Over the years have spent small fortunes on the daft animals I’ve had but wouldn’t have it any other way.  I also did not know that grapes were toxic for dogs, as I was reading I was expecting tales of chocolate given time of year so a more healthy option was a surprise.  You’re both lucky that you noticed as easy for things to go unnoticed until things get more serious, you must be relieved,  And I do hope that the birds are not planning their revenge…reminds me I’d better top up the feeders for the , generally, sparrows, but also goldfinches, parakeets (they’re everywhere down here and are gluttons), starlings and less so a woodpecker (great spotted) – what do you get visiting (apart from the naughty Archie of course)?

Where are you spending Christmas? I do hope somebody is feeding and spoiling you as cooking with a dodgy knee is not the greatest – and that’s from someone who would never entertain cooking Christmas dinner for anyone!  I’ll always be a hanger-onner in that respect, the poor ever-suffering boyfriend will be waiting on me hand & foot, just still annoyed that won’t be quaffing as much fizz as I physically can…I will however make up in my planned-to-be-extremely-moist January (when hopefully taste buds are back in town). Can’t believe Christmas is next week. I’ve just got the wrapping to do now (they all end up looking like fish & chip offerings) which allows one of the cats to continually attack the wrapping paper – oh its great fun (for the cat!), I’ll do it whilst watching Elf (favourite festive film) and given heightened emotions will have tissues at the ready, don’t want to produce papier mache after all.  My mother is coming up from Southampton to join the Christmas day fun (!!??) and will be accompanying my on my last chemo (still a big yay) 27th…unfortunately this may mean that she stays with me for 3 days, this will be a challenging time to say the least, I’ve bought her Ben Stokes book of summer cricket nonsense (I’ll never get it) and Eric Idle’s biography (she love Monty Python) so hopefully those will keep her occupied…if not will resort to being ill!

Please do keep your chin up.  Annoying positivity still abounds here I’m afraid.

Sam X

Christine

Hope it all went well today.

X

Hi Sam,

I'm no nearer making a decision than I was before today. The outcome of the meeting was that it's all a lottery, she worked on a ten year timetable, saying without further treatment at all there was a 55% chance I would be alive and well after ten years, which could go up to 68% if I had the full monty of chemo, hormones and bisphosphonates, but, of course, there is no guarantee, and if I did all that, I could still be one of the 32% that don't make it.  As for side effects, I could have none or I could have all, and still not make it to ten years.  My son explained to her that as I am obviously of sound mind, (his words, not mine) and I am more interested in quality of life rather than longevity this was something that needed further thought.  Bless him, what he said to me later was that obviously he wanted me to live as long as possible, but he wanted me to be happy. 

Chemo was ruled out by the doctor based on family history, yay!!!  My concern now is the bone strengthening medication and the damage it can do, if I were to agree to the hormone therapy because the Oestrogen killer can cause osteoporosis. It seems like giving you one poison to stop the cancer coming back and another to counteract the bad things the first one can cause. She gave me a leaflet about both and it does not make pleasant reading. She didn't answer any of my questions about my particular cancer, such as how fast growing it was and how likely it was to recur and she said if I want to see my pathology reports I would have to make a request to the NHS to see my medical records!

My son suggested that I get the bone density test done, then decide on the hormone treatment based on the state of my bones, which sounds like a plan  if my bones are good, take the hormone meds without the bone strengthening and if my bones are thinning anyway, either strengthen them or not take anything. In any case the bone strengthener only increases the possibility of reaching past the ten year mark by one percent!

i had my telephone assessment with the physiotherapist from Benenden at 10.45 yesterday morning and at 12.30 I was being seen by a real life person.  I had ultrasound, laser treatment and TENS treatment, have been given exercises to do and advised to take paracetamol and ibuprofen together for the pain  I have another appointment in the NewYear.  Already it feels a bit easier but that could be because I have not been allowed to do anything. I have been well and truly told off about walking to the garage for my car not only by the kids but by my lovely next door neighbour who said I have to ring her doorbell if I need anything.

I went to get measured up for my new false boob but couldn't get it done because I have a rather attractive cleavage - already!!  The vacuum has been filled again! I have to wait until I'm flat again  before being measured up.

Don't worry about the drain, Sam, it really is no biggie, and not everyone grows a new boob full of fluid. 

Archie is doing great, now.  I've been keeping an eye out for his pooping, as he wasn't passing as much as he should, but at least was passing some, but my son took them out this morning and came back horrified, apparently Archie got rid of the last of his bird food in huge quantities!  It's a relief for me, but was obviously much more of a relief for Archie!!! Fortunately he is insured, so the weekend adventure has only cost me £60 excess payment, instead of the £500 it actually cost.

I feel bad because I haven't filled the bird feeders since last week because my knee has been so painful. We also get a lovely mixture of birds, coming in shifts, but no parakeets, a bit cold I imagine.

My daughter and I usually spend Christmas together and sometimes we do the Turkey and tinsel stuff, other years we go for a curry. Last year we got Chinese takeaway on Christmas Eve and warmed it up for our Christmas dinner. Neither of us has been in the mood this year, so I still don't know what we are going to do.  I did buy a couple of lobsters from Iceland, which I love, but I don't know if she would want that. I actually put up my Christmas tree this afternoon, but haven't bothered with anything else, I never realised until I closed the boxes without taking out the contents just how many decorations I have, that I usually put up all over the house.

My son is going to Ireland with his partner, her parents insist on all the family returning to the fold for Christmas, then they are coming back here on their return and whisking me off to stay with them for my birthday on New Years Eve.  That will be nice for my daughter to have some time free from worrying about me and nice for me to have a change of scenery.  I laughed when you said Elf is your favourite Christmas film. The last time I stayed with them at this time of the year we went to see Elf the Musical in London. I also recognise your style of gift wrapping, same as mine, it was my mother's, too. Now I use gift bags and tissue paper, usually recycling ones I received the year before. 

So glad you are coming to the end of your chemo, here's to enjoying your food in the New Year!!

Christine x

Christine

So lots of info and decisions to be made eh?  At least you've had your queries answered and thankfully for you, have ruled out chemo.  Its good as well that your son is being supportive of your priorities as can impagine that is quite difficult for those who love us...I'm the same as you in that quality of life trumps longevity, not sure the boyfriend has got his head around that one yet...

Good he also recognises you've still got your marbles (not something my nearest & dearest would ever admit to) and that between you and your son you've developed a plan, presumably you can make any decisions in your own time?  

Hurrah that the physio is already having a good impact and quite right you're told off for the garage fiasco ( though I'd have probably done the same....am so English and don't like to inconvenience others).

I think your boob still lives on, despite being removed, how long will this filling with fluid go on for, I mean its got to stop at some point hasn't it??

Ha!  The image of your poor son watching Archie produce a mountain of slightly digested fat balls...nice, bet that made him yearn for lunch eh?  I'd also like to think that Archie would think twice about downing anything that's not in his dog bowl (year, unlikely I know if he's like any of the dogs we had growing up...I think daft & piggy sums them up quite well).  Glad your insurance came in handy.

Understandable that this Christmas will be a little different, good your children are looking after you.  Will be (sort of) looking after my mother and hopefully not wishing her gone after day 1...mmm we'll see.  She's a rubbish nurse so expectations are very low...am hoping she's a better cleaner as my house needs it (some hope).

Enjoy!

Sam X

Hi Sam

re. Archie- He stayed with my daughter for a few hours today while I had Christmas lunch with my friends. When I went to pick him up, she said there was good news, more good news and bad news.  The good news was that he had done perfectly normal poo, and he has at long last learned how to come downstairs without being carried, albeit on a lead.  We live in a bungalow, so when he goes to hers he loves to follow her upstairs but has, up to now, been scared of coming down.

The bad news was that when she went to the loo, and was out of the room for no more than three minutes, he had eaten half a packet of marshmallows that she had forgotten were on the coffee table! So No! He hasn't learned his lesson!

Re. My ever growing non boob, I was told yesterday that they won't try to drain it again, for fear of infection, and I will just have to wait until the fluid gets reabsorbed by my body! Could be a while!

Re. My knee - agonising again, today.  I took the recommended combo of paracetamol and ibuprofen this morning, strapped both knees with sport braces, elastic sleeve with criss cross straps to support the joint, but was really in a lot of pain both walking and when at rest, which surprised me. It was only when I got home  I realised I had forgotten to put my Actipatch inside the sleeve.  I slipped it in then and this evening the pain has been much less.  I have used Actipatch on my other knee for a couple of years and always been satisfied that it was helping but this has convinced me even more.  It is so worth the money. 

I'm in bed now, waiting for the nice codeine tablet to make me sleepy, I'm still on the packet they gave me at the hospital - don't do tablets until I really have to, but since my knee has been so sore they have been great for helping me to sleep.

If we don't speak again before the Baccanalia that is Crimbo, have a good one and be nice to your mum!

C xx

That naughty dog, may i suggest santa brings him a muzzle, he cannot be trusted at all, he'll be eating furniture, peoples legs next....so very naughty...

Sounds like knee stuff is on the up, despite you not using the right stuff to support it.  I've got rubbish knees (nothing like yours!) , blame years of step aerobics...and should do exercises and you're making me feel bad...when I have the energy will resume.

Am just like you re drugs, the boyfriend is always trying to force paracetamol, cough medicine etc on me but my point of view (and therefore the correct one!) is that things will generally improve by themselves....well that was the case up till this chemo lark anyway.

I currently write from A&E, and was here last night before being dosed with antibiotics and sent home.  High temp returned this morning and was soooo disappointed as had planned a jimjam day in front of TV while daft boyfriend braved the rammed aisles of the supermarket ( I am assured we have turkey!). So hooked up to drip, produced a fine vintage urine sample and waiting to know what's causing daft temps.

Had to laugh when a nurse was told by a doctor to ask me to remove my jumper to bring temp down...not sure that's the solution!! I refused.

So based on last nights visit its looking like a chest infection but not sure re this morning's development.

On the plus side white blood cell count good so am not in neutropenic sepsis (how I got admitted for 5 days post 1st chemo), but really don't want to be here every 2 mins with fluctuating temp.

And again they ask have I taken paracetamol?  Why would I?  I'm not even sure I'd know what to take it for...thought it was for headaches.

Not sure chemo is supposed to polish you off but feels like it sometimes...

On the plus side bought stuff to do...and using the time wisely to reply to cancer pals!

Bring on the feast!!!

Sam X

Oh no Sam!! What a bummer!! Fingers crossed they manage to get you sorted and sent home.

Chemo really isn't a fun activity is it!! I thank my lucky stars that I missed out - although at the time I did feel cheated that I didn't need it!! I am sure your bf will have managed to acquire a turkey!! But I'm sure a beef joint would be more lovely and less dry!

Christine, thank God you get to avoid chemo too. Another positive to take from a *** journey. Good to hear that they are trying to sort out your dodgy knee too. 
I am still fighting with myself re my tamoxifen. I'm taking it occasionally but not regular like I should. I just feel that why should I put myself through the side effects if the % chance of the cancer coming back are not too high anyway. I've also got to start taking some adcal tablets, due to my lower than normal bone density. Haven't picked them up either. I think I really begrudge all this medication when I've always been so healthy!!

Took my hubby to the Celtic Manor yesterday for an over night stay, for his birthday. I booked us massages in the spa too but had to lie on the health declaration as I knew they wouldn't allow me a treatment if I declared I'd had cancer. It's happened to a few friends of mine and quite a lot of places won't let you have a massage until you are between 3 and 5 years clear.  I then worried about the fact I have a huge scar that runs round onto my back so opted for a facial instead :D But on a positive, we have just received the payment through after claiming on our critical illness cover!! So every cloud!!

Christine, hope that boob stops trying to grow back and that knee starts to improve soon. And Sam, fingers crossed they sort out your temp and you get to go home soon!!

Love Caroline XX 

Thanks both, its rapidly becoming a bit of a farce.

In on Friday evening then back home, in on Saturday then back home...

And am now back in A&E, different hospital though as clear the last one were not the best....am more hopeful that the team here, where I have my chemo, will stop this temperature yo-yo!

Hopefullt they're soon to tell me what the crack is...where's Dr House when you need him eh?

X

Oh Sam! This is not funny. Effing bliddy cancer drugs. I don't do the praying thing, but I am sending all my energy out to the cosmos or wherever that the fever comes down soon. I don't care if I do getntold off for swearing! This kind of thing is enough to make a saint swear.  

C x