Leolady, everyone has said it all, but it makes me very angry. Going private is not an affordable option so unless you have full medical insurance - and who can afford that, either - you are at the mercy of the NHS. I hav to say sometimes they are fabulous but sometimes, and in your case they are absolutely negligent. Not living permanently in the UK I do not know what your options are....anything legal you can threaten? I guess just try persistent nice and nasty noises, nice if you get action, really nasty if you don't. But you shoudn't have to, these can be life or death matters.
* Phone call already sent to BCN and WTF is bleeping happen
* Phone call to Onco Team WTF is this letter about and who is it to see etc
* Additions made to my formal letter of complaint that is being investigated!!
If truly 10th April is my 2nd opinion Onco. I'm digging into the honey pot of money squirrelled away ( if that is not a contraception in terms) and a private appt. is on cards
All had to be done today as I am in the big smoke a day at Mac House. Oh and the no phone issue.
All people have been told they can/must talk to hubby if they have an respectable answers to this poo I once called ME.
Actually in a good place. Finally finished some craft work today. Mr Leo being a star. Makes me laugh - that's why I married him.
And when it's quiet I look at this site and get so so much positivity from you
Enough slush slop for a Sunday and the roast is almost ready
For all of you: hope appts go well; hope radio and chemo behave; hope the waiting game is short and the answers are good. Hug your loved ones close
Leolady56
Life is like a boxing match, defeat is declared not when you fall .....But when you refuse to stand up again .......So, I get knocked down but I get up again. x
Aww JammyR, what a lovely thing for your friends to do, I had a little tear too!! Sounds like you’ve had a lovely day with your family.
Jac, sounds like you’ve had a good day. At least your building work’s done and you can look forward to summer in your new space.
Leolady - Nothing to add to what’s been said but I will throw another BLLLLLLEEEEEEPPPPPP in!!!! How absolutely flippin crazy!!! Hope you get somewhere with BCN tomorrow.
Well Bigguy news....BCN rang on Friday. Good news....surgery for ANC probably mid-May then Radio Therapy approx 6 weeks after. I’m pleased the op is much sooner than originally planned but made me think “oh bleep, I’ve got to get off this roller coaster and get back into my pre-cancer normal world again”. I’m totally floored and was awake most of Friday night worrying about it. My rational side knows that, reastically, I probably won’t be at work again until at least the begining of September and everything will be done by then. My irrational, chemoed, side thinks I’m too scared of everything to function as I did before BC again. The nurse in my unit who did my redressed my PICC mopped up yesterday which really helped. DH just wants me back to work and to put it all behind us...if only eh?? I feel like I’m a bit of freak for thinking life with chemo, appointments, surgery etc is less scary than life without all that!! :-/
In other news...we booked a cruise for summer 2019 today!!!
you are not alone. And I didn't have chemo but still felt a dread of nothing to psych myself up for.
think my sister knew hence the bag of pressies.....and I've not opened one yet so in a good place with just 5 and a half weeks now Itill next onc appointment! You will appropriate yourself I'm sure. Just take things day by day.
im trying to do week by week so I can plan things in advance like my mission to try and get back to tennis!
good news your ANC is nearer than you thought, another hurdle to jump and leave behind
Isn’t it funny how suddenly our normals are not necessarily the normals we knew before. Is that totally bleeping rubbish or do we all get it.
At some point we all may wake up just like in the stories we wrote as children and say And it was all a dream. Yup well .... hope you are all still there.
It would be so good to have a knowledge that there is a normal of whatever sort after thisÂ
When I was pregnant, 36 years ago , I used to say if for just one day I could take the bump off and be Lindsay I’d love it. And at the moment for just one day if I could take this label/ illness off.......Â
Right enough flagellation. Tomorrow is another day
So throw those curtains wide, one day like this a year would see me right
Thanks Elbow
Leolady156 whoops,,,
Life is like a boxing match, defeat is declared not when you fall .....But when you refuse to stand up again .......So, I get knocked down but I get up again. x
Leo - glad you are in a good place and with Mr Leo by your side I am sure you will take on the NHS and get things sorted this week. Hopefully you won't need to resort to unleashing our collective bleeps on them.
Bigguy - yes a 2 edged sword isnt it. Always good to have a plan and rough dates but like you say that sets off new chain of worry. ANC wasn't as bad as I expected more uncomfortable than painful but was ok. My boss is visting me tomorrow for sick review.. just a formality and will be more of a catch up really. Guessing I'll go back mid August if no delays with chemo/RT and yes, even thinking about getting back to anywhere near normal is scary. Plus keep convincing by then tbey will find something else wrong with me! No reason for that but BC and rationality dont mix!
Good luck to everyone with CT/RT/appts this week. 2 more days of normal for me then onco on Weds, PICC line on Thurs and Chemo 3 on Fri. Feeling like it could be a good bingo week.
Ladies who have PICC line how long did procedure take? My appt is 10am.... assume I will be ok to get myself home and do the afternoon school run? I also need chemo bloods done Thurs...altho prob easier with line in might nip and get it done first to save time as phlebotomy queue is always horrendous.
There is a normal afterwards. It's not the same one, but there is one.
Why not see it as an opportunity to move on from things you didn't like, clear out some figurative garbage, and pick up some new stuff you always wanted to do? It helps to have a good reason for doing it that no-one can argue with!!
Re: the PICC line - not sure how long it takes, but my Hickmann line took about 30 - 40 minutes all told and that's a more complicated procedure, so I would think it should be less than that! I drove home and was fine so you should be good for the school run!
It might be worth getting bloods done first if you can, just because, as you know, queues tend to get longer during the day! Also, do you always have yours done by the phlebotomist rather than in the chemo unit? I did, or got them done by the GP phlebotomists. However, they are often not trained to take blood from lines so will still do the trying to find a vein thing instead. I now go to the chemo unit and they take the bloods at the time they do the line flush as we've co-ordinated the days to work with the drugs going in!
Deb09, my doc did that too, had a discharge from the nipple and he put me on a course of antibiotics in July last year, they didn't work, so a month later another doc here at home, more antibiotics, then several creams, finally in November they did a biopsy which took more than three weeks to get to me, surgery Feb 6, a total of 7 months elapsed. Lucky for me Pagets' is a slow growing cancer so nodes were clear. And I am not saying leap straight into biopsy, they actually did mammogram and CT scan which showed nothing, but take the possibility of cancer much more seriously. Better to do too much and find you are OK than to let a malignancy grow.
owww Leolady56 - I'm just catching up on all this. I'm sorry you are going through this, I won't waffle on like I do - I wanted to say, I am thinking of you, sending you love and support. Always here for you - Come on girl, you've can sort this - one step at a time.
Hey - Glad everything is moving in the right direction - normal, new normal - take one day at a time.
toxophilite - (I'm sure you just said this, I can't look back) - I love your suggestion of taking this time to adjust and throw out the old and make this the new normal, so to speak. I am going to do this, I know I'm not the person I was before this, I don't know if I like this new person - she certainly doesn't stand for shitè like she did and as for a loosing it - this is happening on a regular basis. Question is, the new person - maybe I've become this person for a reason - to stop me trying to please 'too many people all of the time - the same ones that if the roles where reversed would be nowhere to be seen (and they aren't'. They say things happen for a reason - maybe 'we are the select few, the special people, that have to go through all this, for a reason, for us all to meet up on this site, to encourage each other to become stronger people - because 'we can' and others can't. (I'm going, I've lost the plot - Love you all, if anyone understands me, let me know, so I can understand).
xxxx
I'm hoping this makes sense - only my mind says one thing and my fingers type whatever they like x
