Waiting for tests/diagnosis

Hi Lindylou2022  how did you get on today? X

Hey! Well apart from having another meltdown, right in the middle of a busy reception before going in, REALLY well.  Oncologist (she had the tissues ready for me, she knows me so well) said the last CT showed that all the naughty bits have reduced. Well I was not expecting that! I’ve been more scared of the lymph nodes than the lung, so to hear they’ve reduced too is a bonus.  My insides are still a bit frazzled, she said it means that radiotherapy is  still working.  She doesn’t want to see me for 3 months and I have to have a chest X-ray  before I see her (less faffing around than a CT scan) AND she said we can have a holiday (if someone wants to insure me).  She also said the cardiologist wrote to her to say the fluid around my heart had greatly reduced, so further treatment is no longer off the table and we’ll discuss it at my next appointment.  Off to see psychologist later as I’m a bit overwhelmed by yesterday (in a good way). Appointment was planned a while back as whether good or bad news I knew I’d need to chat with her. I’m not out of the woods by any means, but I’ve caught a break after the hell of last year and going to lap it all up. Anxiety will return in 3 months!    How are you doing?  

So pleased to hear this Lindylou2022 !!! I hope you can sleep easy now. A holiday sounds like a great idea. 

Im really struggling to stay positive. I can’t see any good outcomes, no matter how hard I try. I feel I know what is coming but my family think I’m willing it on, manifesting bad news. I believe in the power of positivity and so I don’t even think they are wrong. I just don’t know how to be positive right now.

The problem is I am struggling physically with differing symptoms all the time, so it’s hard to get on with things or keep myself busy. 
Waiting times on the nhs are no joke and my tonsillectomy isn’t being scheduled atm because the lady who books them is off sick. 

I’d be using up what little savings I have in order to get these tests done privately but it’s a thought. Im not sure if in the long run it would speed the overall process up or not, as I’d have to go back to nhs for treatment. 

 Thehighlander  Do you have any thoughts on speeding up diagnosis. I feel like my physical health (and certainly mental) is getting worse. I read your personal story btw and it’s quite incredible. You are an inspiration!

Sending best to you both x

Hi Mumoftwo I have no idea about the rhythm of diagnosis for other cancer types but when comes to the Diagnosis of Lymphoma its a very set process with biopsy being the main diagnostic tool. Scan etc are used to highlight areas of concern but most of the time it's down to a biopsy.

I know from talking with many people, pre covid, during covid and now that going private is not necessarily quicker and definitely not when it comes to blood cancers like Lymphoma as you just get referred back to the NHS and a Hematologist as the private sector tends not to have all the areas covered.

Where are you at in the process at the moment?........ apart from the nonsense that one person being off sick stops a booking system in the NHS..... give me strength!!!!!!!

((hugs))

I have had ultrasounds an X-ray and lots of bloods. I turned down biopsy initially, asking that we re-visit if the scans threw up more cause for concern (which they didn’t). I didn’t really understand enough of what was going on at that point or I wouldn’t have made that decision. My bloods were initially normal, then they looked abnormal and then they normalised a bit. But I have this one large tonsil which I’ve had all my life (since contracting glandular fever at 18) which needs so go now, regardless of biopsy results - so there is the comfort that it’s one procedure instead of two, as it needs to come out anyway. 
I appreciate your thoughts on going private. My thought was that as you say, it might not ultimately get me answers any sooner than with the nhs. 
I am seeing gp today as I’ve started experiencing headaches and dizziness, maybe anxiety, maybe more. Maybe this will speed things up.

Thank you Mike 

OK....... so I know from working with my great GP that they can make a fuss about having to wait and can open doors so talk this through with your GP. 

If they are not willing to make a fuss...... (crap GP if they say no) then log a complaint using the hospital Patient advice and liaison services (PALS) as one person being off sick stopping a booking system in the NHS is not acceptable.

Hope you GP appointment goes ok - do come back to us once you have had it ((hugs))

Everything you are going through with anxiety is horrible, but I think unfortunately natural as I’m guilty too of manifesting negative thoughts.  From January 1 to yesterday my mind was on overload. There’s no magic cure to anxiety, even though I should be fine until my next appointment in 3 months the few skills I’ve learnt will get me through any blip until it kicks in again before my next appointment,  the only advice I can offer is to take up anything your hospital offers you, go online for different resources to help, you’ll be bogged down for a bit until you whittle down what works for you but it does help …if nothing else it’s a distraction for a while.  I found it useful anyway x

Thanks for the support and information Thehighlander . GP said she will write a follow up letter and I have been prescribed antidepressants to get me through in the short term. 
I will call the hospital again tomorrow and if I get the same answer I will put in a complaint. Such a shame as up to this point I’ve had a great experience of kind and accommodating NHS staff.

It is unfortunately that at times we have to rattle the NHS system but this is all about your health so at times you have to be your own advocate ((hugs))

I think I was incredibly’lucky’.  And given what I went through I don’t feel lucky.  At every admission I was sent for scans and tests I needed.  On my last admission the ER doc who saw me the very first time saw my name on the board and came to see me and removed the doc I’d been allocated and she looked after me and did scans herself. As I say lucky.  Still a lot of hanging around though.   It’s my  GP that is useless.