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.
24th June Update: A very unsatisfactory call... - CLL Support
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! 🤗
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.
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
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
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.
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!
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👍
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
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.
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 🤞🏻🤗
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!