Hi everyone, i’m new here. I received a partial diagnosis of stage 4 lymphoma five days ago. I’m now waiting for full body scan to find the origin of my blood cancer, then a biopsy to narrow down which type of lymphoma I have. The consultant has said it is likely to be the end of July before we have all the answers and can start treatment.
I am feeling overwhelmed and scared. I went cold when they told me it was stage 4. But then the consultant followed it up by saying it should be treatable. I’m confused.
Any advice on how to get through the next few weeks of waiting would be greatly appreciated.
Hi Pippa, I am so, so glad that you have found us.
When I read your post it brought straight back those cold, scary feelings that I had when I was diagnosed 17 yrs ago. You have had shattering news and I expect are in complete shock. Give yourself time and be kind to yourself.
Do you have any support from family and friends?
Now you are in the medical world with a new language and the waiting for tests, answers and sometimes treatments. I hate the waiting, but I do get through it somehow. I know there will be others on here going through the same.
What I do spend the time doing was to write down my fears, questions, thoughts, feelings, practicalities etc to ask at medical appointments and I have to be very brave and learn to ask follow up questions as well.
My mind goes into overdrive.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk
Take lots of care and please keep posting
Hello @Pippa170820 and welcome to the forum. You must be in a complete state off shock. I - like @Erica, remember that moment as clearly as yesterday.
This is such a hard part of the journey. The waiting seems to go on forever and for me, I always went to the worst case scenario.
This is somewhere you can really share your thoughts and feelings and we will all be here to support you.
It is very treatable so that’s a good thing. However its hard to get your head around that to.
In the meantime I would suggest using the support line as and when.
This is what I think would have helped me looking back; Read all of the information on the blood cancer website (its better than googling!) your emotions may be all over the place and that’s fine; use support services - your medical team should be able to give you information on this (I wish I’d done this sooner); don’t compare your journey to others. We all share some things but it’s quite individual and if you want to cry it’s fine, scream it’s fine - you do whatever you need to do.
Most off all please be kind to yourself and take extra special care!
We really do understand and it’s so important to keep sharing so that we can support you.
Hi @Pippa170820 a warm welcome to this forum - I’m so sorry you’re going through this worrying time. Have you got much support around you at the moment? If you might find it helpful to talk things through with one of us on the support line please do feel free to give us a call. It’s free and confidential. I don’t want to overload you with general info - but is there any information at this stage which might be useful for you, such as the different tests and scans etc? If so, please do let us know.
Hi all, when my aunt was diagnosed with a rare cancer (cholangiocarcinoma) I found sites like this a fountain of knowledge & support. This time it’s about me.
Briefly, I came to live in Spain about five years ago. Whereas my wife is now fluent, I have yet to master much conversational Spanish so I’m at a complete loss (and very worried) re what my problem is. Id love to draw on the forum’s expertise to give me a guide as to where I stand. Naturally I am fearing the worst and my internet reading on the subject has made me awfully pessimistic about my prognosis.
I reported into urgencias (A&E) at the hospital on Thursday with a burning sensation in my urethra, passing blood & diarrhoea. I was catheterised and underwent ultrasound & blood test examinations.
The report stated I had a urinary infection (which persists) and strongly suspected ‘chronic lymphoproliferative syndrome.
Sorry fat & shaky fingers! To continue. My “white series” count (on Thursday) was as follows:
Leucocites 32.1 (normal 4.0-12)
Neutrophils 24% (normal 36-66)
Lymphocytes 72.4% (normal 24 - 44)
Monocytes 2.4% (normal 5 - 11).
I have been very quickly referred to the Haematology Dept where I provided more samples today. I am due to see the Haemotologist on 1st July.
I also had an ultrasound which reported everything as normal.
My reading on the lymphocyte level make me suspect the worst; - blood cancer of some species.
My communication skills are not sufficient to understand the gravity of these reading in Spanish so I would desperately like some advice from the forum.
Sorry for the length of all this but I would like any potential reply to be as informed as possible as to what sort of diagnosis I can expect on the 1st. I am sleepless and deeply worried.
Hi @geoff674, it’s me here, I see that you have seen a previous reply from me which I will not repeat except to really welcome to our forum, brilliant that you have found us. If you have read a lot on our forum you might realise that I was diagnosed 17 yrs ago and I believe a lot has changed since then.
I would find it very scary being in a country speaking another language, full stop.
I believe that clinicians take lots of things into account when making a diagnosis. Obviously there might be blood test results and symptoms amongst perhaps other tests and physicals.
However symptoms can be indicative of several conditions so further tests might be needed to narrow a diagnosis down.
I notice that you are in Spain which I would find very scary if I did not have a good command of the language conversationally and medically. What I have heard of is that people abroad might ask for an English speaking member of staff, family member or friend to be present at consultations. Please do not be afraid of checking out if you do not understand something, we all have to in our native languages sometimes.
Do you have private medical insurance, if so with Skype or Zoom a second opinion is made easier with a clinician in the UK. Some people also return to the UK to sort their medical conditions out.
Thank goodness for the internet as you have found Blood Cancer UK and their website which has a lot of reliable information on it and their support line if you wished to ring from Spain.
Geoff it is natural to feel very scared, isolated and worried at this point, the not knowing and the waiting is the worst time.
Have you got support from your wife, family and friends?
Please keep in contact with us as we are here to support you and remember that the internet can be a two edged sword, Take lots of care.