Thank you for posting on the Forum and asking about blood results.
I hope you don’t mind me replying to you, I can explain a little about the blood results, but I am sure others will reply with personal experiences or information at some point.
You are quite within your rights to ask for your blood results, and whether they come from the Haematology team or your GP, I don’t think it matters. You certainly don’t have to ask, nor is there an expectation you do nor understand them. However, some Haematology departments may be able to print off all of the historical tests you have had. This can be helpful in seeing how your results either change over time, or stay the same and give you reassurance all is stable.
If you are also able to get a print out with ‘normal range’ this is also very useful. It lets you know if your results are higher or lower than ‘normal’, however it is about knowing what your normal is. You will start to understand the results bit by bit. Haematology and Lymphoma are quite complex at first, just try to get your head around one or two of the key results, and over time you’ll start to grasp the others. Start with the total WBC (white blood cell) count, Hb (Haemoglobin) and Plts (Platelets), just get familiar with ‘normal’.
Once you start to understand your own results, over time you might see patterns in how you feel and if this links to your blood counts. For example if you have been particularly tired/fatigued, you may notice that your Hb is low (the protein on red blood cells carrying oxygen) or if your WBC are lower, you may have more coughs/colds, or again, feel fatigued. If you are bruising easily or having nose bleeds it may be that Plts are low.
The blood tests in Rheumatology are slightly different, so it may be worth asking them if you’ll need regular tests for their department or it may be once a year. (Do let each department know if you’re having bloods with a different team, sometimes they can co-ordinate tests or use recent results instead of taking more of your blood!).
Sorry to read you saying you feel a bit helpless, but your diagnosis is quite new and unknown to you. After your follow up, you may feel more informed about your Lymphoma and what this means going forward, hopefully you’ll feel less helpless then. It is still ‘early days’ at the moment for you, so don’t feel you need to be any sort of expert or directing your own care. Let the Haematology team explains things a bit further, often they don’t want to overwhelm patients, so information is given in stages.
You may find it useful to be prepared for your follow-up appointment; take any questions you have along on a piece of paper, and it might be an idea to ask if you can record the consultation with a smart phone. This is so you can play it back later, as you might want to look things up after or clarify what you were told.
I am sure that over the next few months you’ll feel more in control and have more understanding of processes and pathways. The information sheets from our website might be helpful: W&Wfactsheets You can download and print them, or order them for free. You may want to use them prior to your follow up appointment.
Please know that you can call our support line to talk through any of this, or if you have questions after your follow up, it is a free and confidential line [0808 2080 888].
Take care of yourself.
Kind regards, Heidi.