Waiting for tests/diagnosis

Hi Mumoftwo and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade Non Hodgkin’s Lymphoma  eventually reaching Stage 4a in late 2013 I do appreciate the challenges of this journey rather well but here I am 23 years on talking with you living a great life.

In all my 23 years I have never had a blood tests that pointed to Lymphoma specifically only a few saying that ‘something’ was medically off. 

For Lymphoma the main Diagnosis tools are biopsy and scans. There are over 60 types and sub-types of Lymphoma so great care is needed in the diagnosis process.

I have talked with many folks who have presented with Breast, Lung, Kidney cancers to eventually be found it was Lymphoma.

The encouraging thing I can give is if this is Lymphoma most tend to be very treatable, yes the treatments can be challenging but all do-able.

Let’s look for you to get clear answers soon.

The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone, get emotional support or just connect with a listening ear.

Always around to chat

• I have a CT scan this week then see oncologist a couple of weeks later to see if treatment has worked and my anxiety is in overdrive, as it seems is yours. My GP was dismissive and I’m coping without meds for it.  I know it’s not the same as your situation but I understand, if that helps. Anxiety is real and needs to be treated better

Hi Mike,

Thank you for taking the time to share your story. It’s really helped me. 
I’m so encouraged that a diagnosis doesn’t mean the end. 
Thanks too for sharing the Macmillan support number.

I am sure that I will have questions for you, if my worst fears are confirmed. In the mean time, I wish you all the best for the year ahead.

Hi Lindylou2022 

I’m sorry you are going through this agony, and it really is agony. It feels like you are hanging in no man’s land when you are waiting for answers. How far along with your treatment are you? Why do you have to wait 2 weeks to discuss results? 

My GP has actually signed me off work for the next two weeks, so I feel she is (so far) understanding. Sorry that has not been your experience.

Hi.  Have scan on 4th and results on 16th, not sure why I have to wait, suspect it’s to do with oncologist’s availability, she’s at 2 hospitals.  I don’t really want to see anyone else as she’s been gof but I still don’t think she understands my anxiety .  My GP sent me for blood tests a couple weeks back and said I was low on folic acid/vitamin /B9 and  just threw tablets at the problem.  I’m ‘lucky’ as i retired in Feb so can chill when I need to, which is often.  Seeing aPsychologist has helped helped.  It’s so frustrating.  Another GP at my surgery was good at the start calling me weekly to see how things were , but as soon as I started treatment she dropped me like a hot potato citing now i was  having treatment oncology can look after me!!  I just want to feel health care people  care, I know they are busy but I want to feel  like im important to them .  A cardiology nurse rings me every couple of weeks so why can’t the oncology nurses?   Personally I think it would help with my anxiety .  I know I can ring the  Macmillan nurses at any time at the hospital, but the irony is I don’t want to keep bothering them ‍♀️

It’s sounds like Macmillan are amazing and they are there for those of us who need support, so don’t feel bad. You could always make a donation to help the service, if you are in a position to do so. 
Good luck tomorrow. 
x

Hi Lindylou2022 

I hope your appointment on the 4th went well.

thinking positive thoughts for your results. x

thanks for asking….Had a little meltdown as I was stressed, but all went well.  The scan was in a new mobile unit, so I didn’t know what to expect which added to my anxiety.  The team at that unit were so nice, we had a real giggle after I finished bawling.   Ended up ringing the lung  Nurse next day as my anxiety levels were off the scale as I convinced myself that it had spread as I’ve been having headaches off and on  since New Years, so she talked me down (ie talked sense into me) and she also got my psychologist to give me a call.    She put me in touch with a local Cancer centre and I’ve signed up to a ‘Tapping’ course, which happens this week. Had a chat with a Macmillan nurse yesterday online and she sent me some really useful stuff too (a meditation video and a tapping video among other things ) which I’ve done this ttoday as I was  shocking this morning, had no sleep (hubbys snoring was the worst it’s been in months +anxiety = me not happy girl) .  My anxiety has been bad since New Year’s Day because of what’s coming up so melt downs are daily at the moment. But I’m trying not to beat myself up too much.  Hope you are OK?

What is tapping and should I be doing it??

Sounds like you are are having a really tough time  but I’m glad people are supporting you a bit better now and that you have some good resources for when you feel on the edge. I have been using an app called ‘Calm’ on my phone. It’s really helped bring me round from massive panic attacks and helps me sleep too.

I’ve been at hospital today and they are confident everything looks normal. I like you also worry things have been missed or are getting worse but it’s good news at least. I need to have my tonsil removed as it’s very large in size and then we will know for sure whether there is anything more nasty going on. That won’t be for months thanks to nhs waits, so for now I just need to try and take the good news I’ve had today and get on with things. 

i will be thinking of you on the 16th. X

I looked at CALM but thought I’d try this course first https://cavcare.org.uk/tap-away-stress/.  It’s online  so may not matter where you are located.  My psychologist recommended tapping ages ago but I just forgot about it.  Take a look on YouTube too, I did a session using that today. It’s super easy but I may not remember all the mantras .  Good to get a recommendation on CALM though.  I also did the meditation course on here  https://www.pennybrohn.org.uk/resources/ And going to do it at bed time to hopefully switch the brain off!   Sorry to hear about you tonsil. The way I see it (and took me a while to get to that stage) if they were worried you’d  be in super quick to-get it sorted x