24th June Update: A very unsatisfactory call... - CLL Support

CLL Support
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24th June Update

Sepsur
Sepsur

A very unsatisfactory call from team at Christie’s. No information imparted because it was not deemed appropriate subject matter for a telephone conversation. My appointment has been moved forward 10 days and will be at 9.40 on Friday. J, my wife, is allowed to attend to support me as we discuss a treatment plan. I can only draw a bleak conclusion from this but we will see... while there is still life, there is hope.

91 Replies
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How condescending to allow your wife to go with you!!!

That’s hope it’s a job’s worth letter and actually it’s returning to your original treatment plan

It may be they prefer a face to face, rather than giving information over the phone.... Hospitals move in mysterious ways....

I wish you the best of luck🍀

PaulaS
PaulaSVolunteer

Sorry to hear this, Sepsur. I was wondering when you'd get the result of that biopsy...

Thinking of you,

Paula

Sepsur
Sepsur
in reply to PaulaS

Thank you - we were pretty insistent to find out, with compassion - they still wouldn’t budge - alas

PaulaS
PaulaSVolunteer
in reply to Sepsur

O dear... I can understand how you'd interpret their reasons for not saying over the phone... Hmmm...

But as you say, while there is life, there is hope... You've come through some seemingly impossible situations before...

Paula

Sepsur
Sepsur
in reply to PaulaS

Yes and actually you guys only know a fifth of it 🤣🤣

Justasheet1
Justasheet1
in reply to Sepsur

🙏🏻

Sepsur
Sepsur
in reply to Justasheet1

Thank you

JigFettler
JigFettlerVolunteer

Hi! Thanks for sharing. If you have a tame GP... lean on them to get information sorted.

Thinking of you!

Jig

Sepsur
Sepsur
in reply to JigFettler

Thank you

Oh no, 10 more days of waiting? Could it be a good sign that they aren’t exactly rushing you back in? When I was told I had CLL it was after I begged the nurse over the phone. The doctor said she did not like to tell people that over the phone but I was grateful the nurse didn’t make me wait. I’m so sorry for this outcome but I will stay hopeful as you are! 🤗

Sepsur
Sepsur
in reply to CoCoLuna11

They have rushed it forward 10 days to this Friday

I hate when they do this, it makes it even worse for me. I hope you are not like me 🙂

We are all with you. I just do not think docs have a clue how the suspense is dreadful. I read this and immediately thought of several times I have been kept waiting for things and remembered how I felt each time. It is hard for the docs as for sure I and others also compain abotu the times we were given news over the phone so they can't win either way really. Hoping that the news on Friday will be much better than you dare to hope.

Sepsur
Sepsur
in reply to AdrianUK

Thank you

Argh, yet another uncertainty. I'm with you, if i received that call, I would just rather know now.

Hang tough buddy!

Hoping for good news for you. A friend of mine has also been given a quick appointment. When she said this worried her they said it was merely that they were trying to push things on after Covid. Hope it’s the same for you.

Peggy

My thoughts are with you , your incredible xxx

Sepsur
Sepsur
in reply to Pandysgirls

Thank you

pati23
pati23
in reply to Sepsur

yes your incredible Sepsur, hang in there and stay positive,

these hospitals are all over the place at the moment

Pat

I hope that when you do get your appointment the outcome is positive. You’ve been through so much already it doesn’t seem fair that one person has to bear all of this, but proves you are made of strong stuff.

Best wishes

June

Sepsur
Sepsur
in reply to june65

🙏💪💪💪

Good luck Sepsur! I'm glad you only have to wait until Friday. But I don't think you should have to wait at all.

Sepsur
Sepsur
in reply to PlanetaryKim

With a little reflection, I’ve taken the initial appointment of 3/7/20 as positive - if I was really buggered, surely they wouldn’t have tortured me with a 10 day wait. They would have given me the Friday morning slot straight away as a priority if I was properly f#%^ked. I know this might be a little back to front logic and I know for certain that a new treatment plan is being planned, I suspect this is for a further condition as they need a PET scan urgently.

Whilst both of us were a little put out at first, a few hours later, I feel pretty ok at present. Thanks everyone for their encouragement, prayers & thoughts x

PlanetaryKim
PlanetaryKim
in reply to Sepsur

I hear you. I would interpret it the same way you are - if you were really buggered, they wouldn't delay in getting you in.

I agree with you..... Let's hope we are right..

Hoping for a positive outcome for you, you have had more than your fair share of medical conditions. Such an inspiration .

Sepsur
Sepsur
in reply to Ferham

Thank you - to be honest - we are past ‘positive’ outcome in that sense. I just want to know outcome so I can prepare for the next line of battle. That I am fine with - it’s uncertainty I can’t deal with. Someone mentioned that I’d fought so long and hard & I said that ‘you guys only know a fifth of it’ - I fought for survival from my very first minute.

I was conceived on the night JF was assassinated ( don’t ask me how I know that) to young parents who believed the world was going to end. I was born 25.5.64 - as you see 3 months premature in the only premature baby unit in UK at the time ( I was reliably told) months in an incubator? my Mum couldn’t remember how long and we are talking 56yrs ago. A lot of babies don’t survive that level of prematureness now. My good friend and wheel chair racer Olivia Gallagher was the same - we muse on occasion about this innate drive to survive way before consciousness. I fought to survive that coma too although the realm of choice was much more apparent this time around. I believe my moments of ICUdelirium when I woke up on the slab of a morgue ( more than once) beckoning my family to me was when my family were in reality being asked to say their good byes

Ferham
Ferham
in reply to Sepsur

Whatever the outcome I admire your strength and positivity. I too was a prem baby - I'm a twin , same age as you . My mum was so slim she didn't know she was having twins, I was somewhat unexpected . Whatever the next battle is you will fight it .

Sepsur
Sepsur
in reply to Ferham

My cosmic twin 😊

scarletnoir
scarletnoir
in reply to Sepsur

I could not agree more about 'uncertainty' - surely, nothing is more stressful that waiting for 'something', be it good or bad...

I've often wondered how people cope with being on W&W for years... they have my sympathy and admiration. (I went from diagnosis to treatment in less than 6 months - at least, that way I knew what was going on, even if not the outcome.)

I do hope that, when you get to it, the news will be good.

Sepsur
Sepsur
in reply to scarletnoir

Thank you

I'm thinking of you and praying for you. I'm sorry you're in this situation. Life can be so hard.....I agree that uncertainty and waiting are mentally and emotionally tough.xx

Sepsur
Sepsur
in reply to Ghounds

Thank you

Hang in there Sepsur! I know that is easy for me to say since I am not in your situation, but you are a fighter for sure and you have made it through other uphill battles. Hopefully whatever it is that they want to tell you about will turn out to be something that you can overcome with all of your perseverance. You have done that before and you can do it again! Your a survivor!

Chris

Sepsur
Sepsur
in reply to noeagaman

Thank you

Your courage is inspiring Sepsur. . . am fairly certain whatever your outcomes may be on Friday, that you will face them head on, and head's up. Will keep you, your family, and medical team close in positive thoughts and prayers. . .

Julie

Sepsur
Sepsur
in reply to Moon-shadow

Thank you

The waiting makes me sick to my stomach, so I will be sick to my stomach for you now. How are your bees? Hang in there.🐝🍯

Sepsur
Sepsur
in reply to edelweiss

Well, I went to tell ‘my worries to the bees’ and they didn’t seem that arsed 😊

AdrianUK
AdrianUK
in reply to Sepsur

All the best wishes for tomorrow old friend. Your story has always been of interest to me as we had some parallels...but I have to say I havent had it as bad as you.

Sepsur
Sepsur
in reply to AdrianUK

Thank you

Thinking of you .....and Hope that the appointment goes well ...The anxiety of waiting for results takes so much energy ! Be strong and know that so many of us care about you!

Sepsur
Sepsur
in reply to 1ofakind

Thank you 😊

Wishing you a positive outcome😇 I truly believe whoever relayed the message could have been more compassionate in their demeanor to you. God Bless 😇. We are all here for you 🙋‍♀️!!!

Tbh they did as much as they could to be sweet - I understand their hands were tied - and they are the messenger. I know the nurse & she is a good sort - she pushed my appointment forward by 10 days. 😊

Oh please be strong, it will hopefully be fine. God bless

🙏

We shall all be with you in thought and prayer. xx

Thank you

I’ve had a similar thing this month, I’ve been on watch and wait for a while but things have progressed this year. I was given 2 days notice of an appointment which turned out to be a routine check up, but treatments coming! The comment below saying the consultants are pushing through appointments due to Covid was the case for me and the short notice. I hope things are ok for you and it’s just the system trying to maximise consultations. Good luck sepsur👍

Sepsur
Sepsur
in reply to Cheltman

Thank you

That sounds pretty grim - I have a telephone appt tomorrow as well. Although they are giving you the f2f appointment, and letting your wife join you. I hope that the f2f goes well for you, take care

Thank you 😊

My thoughts are with you. You are clearly a fighter so will get through ☘️

Sepsur
Sepsur
in reply to Miggins60

🙏

Wishing you loads of luck... things are often not as bad as we imagine.

Fran 😉

Sepsur
Sepsur
in reply to Fran57

So true 😊

I he worked through all the comments, Sepsur, and have nothing better to add. You are so good at triumphing when things are against you, I hope it will turn out to be better than you are thinking.

Chrisx

Thank you

13 years ago, after a year of tests for everything under the sun, I was rang by chest consultant nurse and asked in I could come into the hospital in an hour! I was met in an empty ward and told that I had lymphoma (not sure why I was told this as my medical file has that a lymph node biopsy a month previously indicated CLL) and that I would bee seen by a haematologist within 2 weeks? So I am hoping for you that a 10 delay is not such a bad indicator?

I imagine that your medical team want to read your response so they can support you with the plan of your new treatment options, which is not that easy in a telephone call. The offer that you can bring someone with you is a step up, as I have a neighbour who has just been diagnosed with a brain tumour, and he was advised that no one could come into the consultation room with him, because of covid 19.

Hopefully, now that you are home, you can enjoy the good weather and your family, that you don't have too much time to dwell on what is not known.

Ps my mum is a triplet, weighed 2 pounds when born, before incubators, in the 1930's, all survived, and her cousins are also triplets born in the 1930's

Sepsur
Sepsur
in reply to fapumpkin

Way hey!! ( your Mum I mean)

Sepsur,

Sending prayers, positive vibes and bucket loads of hope your way.

❤️Sandy

Sepsur
Sepsur
in reply to Sojomama13

🙏😊

Hoping for a positive result. Best regards.

Sepsur
Sepsur
in reply to Jacksc06

Thank you & you too Jacksc06

I admire your strength and grace as you face the unknown. Best of luck to you.

Sepsur
Sepsur
in reply to Mprm

Thank you

I had this sort of thing happen when our oldest son was ill. A cryptic message from the nurse who just used the wrong words to a scared mom. I hope that’s what this is for you. They don’t always think about how this affects the patient.🙏

Sepsur
Sepsur
in reply to Kokobean

Too true

Newdawn
NewdawnAdministrator

Hi Sepsur,

Sorry I didn’t reply earlier, I’ve been in hospital. My heart rate has been so high I thought it might burst out of my chest! 🙄

I know you’re concerned that they need to see you personally because you fear they’re about to impart an outcome you’d rather not have. We all think that and search every expression, nuance and implication either on the phone or in person. Thing is, your recent health issues will have complicated your treatment plan anyway so not a detailed discussion to have over the phone. As things are easing in the hospitals a bit, relatives are being gradually reintroduced so glad your missus can go with you.

You’ve been to hell and back in a handcart over the years but one thing endures. That’s your capacity to fight back, take it one bite size piece at a time and win through battered but not beaten. And so you will this time. My husband says to me, ‘no matter what happens, we’ll sort it together one day at a time’ and I know you and your wife will too. Of course you shouldn’t have to but who said life is fair?

So go on Friday prepared for the worst but hopeful for the best. As you say, your life started as a challenge and has continued almost with the Rocky theme playing as your soundtrack! Like me, it’s about time we got a break and I’m hoping and praying they just want to talk about how to move on with your CLL. You’re given them a challenge. As the paramedic said to me, ‘you’re getting a bit greedy with these health issues!’ 😉 These things are not funny but sometimes we have to laugh in the face of adversity.

Thinking of you and your lovely wife.

Newdawn

Sepsur
Sepsur
in reply to Newdawn

Absolutely- J said to me yesterday - trust you!! Most people on ibrutinib have heart issues with it getting faster & faster - yours is grinding to a halt. If it could get anymore convoluted- you’ll figure out a way!!

Havemercy
Havemercy
in reply to Newdawn

Thinking of you Sepsur and Newdawn as well xxx

Sepsur
Sepsur
in reply to Havemercy

Thank you 🙏

studebaker
studebaker
in reply to Newdawn

How are You doing Newdawn? That must have been scary experience for you and your husband. Was this your first AF and what is the plan for you?

Take care 🤗

Dana

Newdawn
NewdawnAdministrator
in reply to studebaker

I’ll reply by pm Dana. Don’t want to divert this from Sepsur’s important issues.

Not AF incidentally.

Newdawn

AdrianUK
AdrianUK
in reply to Newdawn

Oh my! you are important too. We want to all hear what is going on with you.

Hello Sepsur

It could be that information is complicated and doctor needs to actually talk to you rather than have underlings provide information. My doctors underlings are not allowed to provide any diagnostic information without doctor approval. Blessings.

Sepsur
Sepsur
in reply to Big_Dee

Thank you 😊

Hey Sep,

Sometimes words can't get it.

I hope that you are feeling good today, and able to embrace something that is important to you.

Damocles sure is a pain in the Aarss!

JM

Sepsur
Sepsur
in reply to Smakwater

🤣🤣🤣🤣🤣

I was thinking of you and praying for you Sepsur. Unfortunately I was not able to get to my emails, because there is a very sad situation happening with my granddaughters boyfriends mom and I was and am on call. For that reason I just read your post and all really great replies.

I got mad at your doctor, how insensitive can he be. Uncertainty is much worse than knowing, because our minds can produce really strange and scary scenarios. Once we know we can deal with reality and get to fighting.

You Sepsur are experienced with that and you are a warrior and you WILL get through this obstacle 🙏🏻🙏🏻🙏🏻

Good luck tomorrow and please remember we are all with You 🤞🏻🤗

Dana

Sepsur
Sepsur
in reply to studebaker

I do remember and let me assure you - I add it to my inner resource to replenish it x

Praying for you.

Sepsur
Sepsur
in reply to MFThorses

Thank you

Prayers going up. Please keep us informed.

BeckyL USA

Sepsur
Sepsur
in reply to BeckyLUSA

Will do 😀 - in a few hours - I’ll know what’s what. In the meantime, priorities, baking some sourdough for breakfast

Wish I could pop right over for some sourdough! I'm thinking, hoping, that your situation has been so complex that your doctor wants to discuss the next steps with you in person, and knows that your wife is an important part of your support system. I would imaging that summing up the picture he is left with after all of the poking, prodding, scanning, etc. would be just too difficult in a phone conversation, and that he knows that you are ready for some answers, rather than more questions. Sending tots of positive thoughts your way from California!

Thank you 😊🙏

PaulaS
PaulaSVolunteer

Hope you enjoyed your sourdough breakfast, Sepsur. Looks like you were up very early this morning!

Thinking of you, re your all-important appointment today...

Paula

Sepsur
Sepsur
in reply to PaulaS

Thank you - 5am - saw the dawn before the rain 😊

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