I am a trained nurse, and I have asked for blood test history but unable to get these unless I visit Haematology Unit at St. Richards Hospital Chichester. Baring in mind we are into a resurgence of the virus! I was diagnosed from a routine blood test! I am on that difficult regime Watch & Wait! I feel l am being treated like a time waster! Oh how l wish I had not had that blood test! Ignorance could have been bliss!Things are made difficult by an under active Thyroid which l am told is not now stable but there again l have to wait another 3 weeks for an appointment with my GP to know the actual result? I am permanently tired! I am golfer and am still staggering around the course because I hate to think of the alternative!
That is my moan ! Sorry I feel sort of lost!
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Artygolf
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I too wish I hadn't had that blood test ruining my life and it is frustrating at times getting the world to co-operate. I can sympathize with your hypothyroid. Moan away!
I have met some great people during my Cll journey.
Hi Artygolf - welcome! I think most of us on this forum can identify with the way you are feeling at the moment. I too was a trained nurse in the south of England although I have now retired primarily due to the Covid situation. I have included a link to my very first post on this forum which I hope you may find useful.
With regard to your blood results, it is possible to sign up to a site called My Medical Records (hopefully St Richard's subscribe to this) and view your blood results. There could be a bit of a time lag before they are visible but I can usually see mine about three weeks after blood was taken. Failing that you could sign up to Patient Access online which is a GP website and blood result can be seen in there. I will try to put links on here but am not very "techy". Best wishes.
Being able to view any records online sounds a lovely idea. I certainly can't on either patient access or My Medical Records. Have you been able to do this Havemercy?
But we do have a right to view these records. I've never tried or want to see everything, but do ask my surgery for a copy of any lab or imaging report they get. And they do cheerfully give me copy. I believe legally they must.
The time between a test and its results is always a tough time for me, but I try to distract myself with enjoyable activities (wish I could play golf!). I also sometimes have been tempted to bury my head in the sand when it comes to getting results.
However CLL nowadays is eminently treatable so I think its much better, objectively speaking, to know the truth and take it from there.
How frustrating, I guess I am fortunate that either my GP or my specialist nurse attached to my consultant will email me my blood results within days.
Record departments have always been difficult to obtain information from. Do you have a specialist nurse or a cooperative nurse in your surgery who may help.
You may not even need to see your GP dependent on the results. But I do sympathise with your need to see your results especially as you feel more tired recently. However as you know there could be other reasons for your tiredness but we usually blame our CLL.
Good luck in finding someone to help get your results to you.
Sympathetic thoughts to you from a former nurse down in the South Pacific.
I think it's the loss of control feeling which you mentioned that some of us find quite hard at first, or maybe all the time? This includes not knowing how long we will be on that W&W regimen - everyone is so different. I had over 20 years of it. while still working, even with a 17p deletion. And I'm lucky enough to be on a "Manage Your Health" system here which sends my blood test results to me as well as Haematologist, GP, often on the same day they were done.
Thinking of all my former nursing friends in the Windsor, Berkshire area at present.
How frustrating for you! Im under Southampton General, I do not understand why you have to wait for your results - I would not be happy with that either.
I have blood tests every 4 months and get the results later the same day, on the odd occasions I haven’t I phone my contact nurse and she reads them over the phone and then emails a copy to me .(which happened again recently after I had to have an extra blood test through being bitten quite badly-the results were fine )
I like to keep a record of mine to compare.
My gp is on a central system with the hospital so results are seen by either.
I back your frustration here and hope you can get your results, I find they are peace of mind for me to see how stable I am.
Oh great to be part of that at Southampton , before the pandemic we used to meet regularly and it was a good group, they are amazing there and so much information - the hospital has amazing research going on and Im sure when you get there you will be reassured.
Still rather miffed at her reply for your results but well!! Have you a contact at Southampton? If so you could ask them for your results, getting results quickly helps with our reassurance doesnt it, try and stay positive and Im glad you are involved with Southampton, they are amazing and so helpful and supportive. Ask away with questions - as the Drs and Professors involved with the research group like our input and give answers freely.
Stay safe - who knows after this pandemic we may meet at the group 🙂
I can really relate to your comments. I am 69 and been on W&W for 3 1/2 years. Still no symptoms whatsoever. I guess it has made me much more careful during Covid , which is probably a blessing but has put a distance between me and my family and friends. I am not too concerned at visiting the surgery / hospital in our area (Surrey UK) as they do seem to be doing a great job in setting up Covid safe procedures. I highly recommend patient Access , I use it a lot to keep track of blood tests, consultant advice, vaccinations etc. Good luck.
I had a Well Woman check a year ago when the high white blood cell count was picked up. I was told I had CLL in September this year. I too have an underactive thyroid gland. I can access my blood test results on the hospital website. I was sent an invitation to do so by the hospital. Enquire if your health authority does this.
I haven't told many people yet about the CLL. I don't know how to.
Hi ...I live in Chichester and have also been diagnosed with CLL...by coincidence I had a blood test recently and am due to speak to a nurse at the Fernhurst centre for the results. It is my intention to ask for a copy so I can track my condition by using the chart at the back of the CLL Support booklet. It would be strangely disappointing not to be given information about my own health. Happy to talk some more if you are interested, in fact if there is anyone out there in my neck of the woods who is interested in talking some more please say. Since my diagnosis in May I have felt in a strangely uncertain place and rather like Adlucy said in her reply I have been cautious about telling people......
Hi, I am in Southampton and happy to chat. I was diagnosed 3 years ago (but had it undiagnosed for longer I realise)
I have always kept my results and like to compare them. Ive never been refused them - whoever Ive seen are happy for this to happen and they really like patient input.
It would be interesting to see how we both progress. Was the nurse called Viv ( l think?)
I have an appointment on the 20/10/ 20 at the Fernhurst centre specifically to see my past blood results! Apparently this cannot happen on the phone?
I was captain of golf when the long diagnostic process was taking place so I felt obliged to explain to the ladies. Difficult to explain you have a chronic type of blood cancer but you do not require treatment at the moment! I was even told to get another opinion!!!
I am not finding this at all easy,to be frank!
But it is good to communicate with others in a similar position!
Its certainly a learning curve. I knew nothing about it and didnt Google as its very out of date.
During the pandemic Ive had a blood test in the morning and consultant phone call in the afternoon we then go over the results which he gives me over the phone and I get an email copy if I ask.
I agree it is difficult telling people - until of course we know more ourselves. Education is key isn’t it, Im glad you are in touch with Southampton as there are many people who will answer your questions and you will find out so much and have more option to get opinions from them regarding treatment and the options of which there are many.
Hopefully on 20th you will find out more for yourself - look out for Klara she is my contact nurse and lovely as are all the consultants there, get a list of what you want to ask and good luck.
Hi Artygolf....yes and I am due to speak to her again for my blood test results. To date everyone has been very kind and reassuring but the shock of the diagnosis and the powerful nature of the word Leukaemia rocked me. I do hope that they will willingly share the information I ask for. I am happy to chat some more and wonder if there is a way we can do so on the site without posting for wider consumption. I will check
Artygolf, you have a legal right to view all reports that are done as a result of tests of any kind. If your GP requested the test ask a surgery secretary by phone for a copy of each report you want. Not sure how collecting the reports would go in Covid times.
I certainly cannot access my reports on Patient Access as suggested below. Think it's optional for surgeries to put these up on patient access... and would take lots of IT staff hours. My surgery just simply has not done it.
If it is any consolation, all CLLers are on W&W forever. We W&W until treatment, then W&W for relapse. Ignorance could have been bliss, but doctors were asked to check you out. Blessings going forward.
That's all very familiar, Arty. I felt just like you're describing. The fatigue destroying my quality of life was something I kept reminding the Drs. of, and seeing that they were only considering test results was very frustrating.
What I wasn't aware of at the time, was how much it had taken a toll on my mental health. It wasn't until feeling better, after treatment, that I became aware of how deep into depression I had sunk. I'm guessing that's where you're at, too.
The best advice I have for you:
1. Complain about your fatigue to the doctors and let them know its impact on your quality of life and mental health.
2. Ask about some important basics, such as: Vitamin D level, Vitamin B-12 level, Zinc level, for starters.
3. Keep talking to us in this group. The experience and knowledge here just keeps growing.
Most of all, we just care about each other. We care about you, Artygolf!
Wish I was back home in Surrey, I'd want to hit the last links with you. Just take it easy on me, okay? 😎
Borrowing some sentiment from Winston, We will never surrender!
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Blessings going forward. 
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