Hi everyone,

[Curry777]

Rang up my cancer specialist nurses to ask about my full body scan results as of 5 weeks ago now. The nurse told me I would be contacted if there was a problem. I said surely they let you know if all is clear? She said 'No only if a problem.' She was rather vague. The next day I had a letter to give me an appointment on Monday at 17.00 for an Echocardiogram in the Hospital. Have broke a bone in my foot at the weekend, so can't walk about, have had a boot fitted and crutches. Seeing foot specialist in 2 weeks. Need some good news now, please?

[21Bedlam21]

Hi, it’s unfortunately the case. If nothing wrong they don’t notify you. Before I get any answers I have to see my Consultant. Had full blood tests 2 weeks ago and see her on the 3rd October. I had to ask last time for a copy of my blood test results. I expect I’ll have to do the same this time. When do you see your Consultant? Hope your foot is better soon.

[Curry777 in reply to 21Bedlam21]

Next Haematology cancer visit 5th November. My Doctor never seems to know much I have to update her as the N.H.S. Where I live doesn't communicate very well with each other. Thank you Bedlam having to rest and elivate at the mo. My foot is quite painful.

[Homebody123]

Hello I’m UK based, have private insurance and am in W & W under University College Hospital London - probably moving towards treatment. I have just had a PET scan and CT scan last week and yesterday an Echo. My understanding from my CLL specialist is it’s just the normal process of establishing a base line against which they continue to check you throughout your CLL journey. Neither test is difficult and I view it as a good health MOT! If there is anything wrong they tell you and if there isn’t, it’s just another message to get on and enjoy life! Best of luck and I hope your foot heals quickly.

[Curry777 in reply to Homebody123]

Thank you Homebody, I have my Echo on monday, nice to hear it sounds as if they are doing a general process to establish a base line check on the CLL. Great to hear your positive thinking of getting on and enjoying life. Best of luck back to you too. I hope my foot heals quickly, hate sitting around doing nothing x

[Homebody123]

Just one other suggestion, your results should be sent to your GP so you should be able to log on to the patient portal and see if there is anything up there.

[Curry777 in reply to Homebody123]

I have looked on my patient portal and it is not up to date, was no point even looking cause it didn't even mention I had been diagnosed with CLL. Thank you again

[Walkingtall62]

Do you have a patient portal you can log into. My hospital uses Patient Knows Best. Always nice to look at the results once home from the appointment. Maybe you could ask your CNS. All the best

[Skyshark in reply to Walkingtall62]

Don't get me started. For me PKB is a sad sick joke.

I asked for copies of my records. If the order they appear in the PDF files is anything to go on they are an unholy mess. I got multiple copies of the same document. The FISH report is missing but the BM Molecular Analysis has a reference to it. 3 IV rate sheets missing.

[Curry777]

Thank you Walkigtall, big hug to you

[Spark_Plug]

You are one of many in the mushroom brigade, welcome! K.I.N.T.D.A.F.F. (kept in the dark and fed fertilizer)

[Curry777 in reply to Spark_Plug]

Your so right Spark Plug seem to be ignored and treated like I am a drama queen, not that important. Good to hear from you and being able to become a member of the K.I.N.T.D.A.F.F. Ha Ha...I love your abbreviation...

[Agfar]

Does your hospital have a PALS (patient liaison service) office? They can often help find out things you'd like to know. They can be contacted by phone or email, if you do.

[CycleWonder]

I hope your foot heals quickly. You never really appreciate feet until you realize you walk on them. I broke a bone in my foot and walked around with a boot on for weeks!

[Curry777 in reply to CycleWonder]

Your so right CW, that's exactly what I've been thinking. Up the stairs and down the stairs on my bum (At least my bottom is having a workout.) I think its 6 weeks with the boot on, but have foot specialist in just over a week when the swelling goes down. As I had problems before the accident with the same leg, that's how I found out about the CLL. Thank you for the reply x

[Dyzzie22]

Hi I am going through the same process. I had a CT scan and bone marrow biopsy straight after my last Consultants appointment 3 months ago, I haven’t heard anything so am hoping no news is good news, but it doesn’t stop me being nervous about my follow up appointment next week 😩. Interestingly I also watched a short interview with an American CLL specialist earlier this week whose research suggested that we may be more prone to getting fractures. She said we should be taking calcium supplements and trying to build muscle strength and bone density. I too broke a bone in my foot not long ago. Hope yours heals well.

[Curry777 in reply to Dyzzie22]

Oh bless you Dyzzie your waiting too. Calcium supplements, do you know what I never thought that CLL could be part of broken bone, as the last time I broke a bone was in a car accident in 1985. Thank you I hope it heals well too. Your not the only one nervous of what news we could get Dyzzie, My love sent to you from England x

[Fogey]

I’m not sure that medics fully appreciate the tension and worry experienced by a patient before, during and after a test, be it bloods, scans, whatever. The after-test period reminds me of waiting for exam results as a child! Only this time, it’s closer to a life or death issue. Results should be given promptly and directly whether positive or negative.

[Dragonfly2007 in reply to Fogey]

Hi Fogey, I think you are right, they may also be suffering from compassion fatigue which is the strain of feeling for another’s pain and unfortunately very common to the medical profession due to the work they do, but it doesn't help us with the stress of waiting. The symptoms are often similar for burnout and the term was coined by historian Carla Joinson in 1992, and further defined and researched by psychologist Charles Figley, who describes it as “a state of exhaustion and dysfunction, biologically, physiologically and emotionally, as a result of prolonged exposure to compassion stress.” psychologytoday.com/us/basi...

[Fogey in reply to Dragonfly2007]

Yes, Dragonfly2007, that’s probably a factor too. As is just being too overworked. It wouldn’t be so bad if we all had online access to our medical portals and could see our results as soon as they’re available. Unfortunately, the ability to do this seems highly variable from country to country.

[Dragonfly2007 in reply to Fogey]

A medical portal would be good too 🤣 I have it for the private hospital but doesn't exist for Spanish social security, getting a report/blood test results when i see them is almost impossible as they wonder why on earth you want it!

[Curry777 in reply to Fogey]

I agree 100% Fogey, we shouldn't have to wait so long for results and I think your right that I dont think medics fully appreciate the tension and worry we experince waiting for results on what could be life and death issues.

[Thursday45]

Just have to agree with all your replies. Waiting for results adds to the stress and the technology is there to help us but only if it is kept up to date. We are asked the same questions over and over by medical staff. Are the answers ever recorded? Good luck with your foot.

[Curry777]

So good to hear from you Thursday, your right same questions over and over by medical staff, I feel like I am not me any more, as if I am on conveyor belt, just a number, not a person with emotion or feelings. Thanks Thursday I hope my foot mends quickly because not getting out and about with a recent diagnosis of CLL gives you too much time to think.

[Islandvibes]

sorry to hear your in so much pain. I'm in US I can log into lab portal and get all labs. Maybe you don't have access like that but I think you can get lab results. Here it's a patient right to be able to get all records if you need. Hoping your foot and questions get answered.

[Curry777]

I've found the N.H.S. In England is broken, there is no communication between all medical staff. I've also found the Specialist nurses are all run off their feet and if you want to speak to them you have to leave a message with the telephonist who usually rings you back with answers passed to them from the Cancer nurses. Someone described my feelings well on here: I feel like a mushroom living in the dark, not knowing anything once you receive the diagnosis of CLL. You are passed from one person to another person with everything. So sad as the N.H.S. Used to be something to be proud of. I went for Echocardiogram yesterday as I received a letter from my doctor, I rang them but you never get anywhere with trying to contact the doctor anymore. The cardiac sonographer asked me why I had been sent for check? I didn't know the last 3 appointments with my doctor were cancelled by surgery and re-booked. It's a joke.

At least I'm having a body MOT

[Skyshark in reply to Curry777]

They are utterly disorganised.

Take the Venetoclax + Obinutuzumab treatment. They make the patient visit at least 3 days and sometimes 4 days on the trot!

Day 1 Monday, blood test.

Day 2 Tuesday, consultation, wait for 1-2 hours to see consultant, prescription for next dose issued.

Day 3 Wednesday, IV Obin and/or "urgent" blood tests for TLS 20/50mg Ven for low risk TLS, 100/200/400mg high risk TLS. It was taking them over 3 hours to get a blood test result. The blood test machines can run a sample in 40 minutes.

Day 4 Thursday, first split dose IV Obin on day 2 of cycle 1, 24 hr "urgent" TLS blood tests, 20/50mg Ven for low risk TLS, 100/200/400mg high risk TLS. Again waits of 3 hours for results.

In US they do most of these except split first dose of Obin and 24 hour TLS blood tests in ONE day.

[Curry777 in reply to Skyshark]

Bless you, Skyshark you are and have been experiencing the same as me, your right they are utterly disorganised.