Need help dealing with my thoughts

Hi Positive Polli and welcome to the Online Community but sorry to see you find us.

I am on holiday at the moment so don't tell my wife I am on the site. I don't actually know what you want to hear? The fact that you have posted in the NHL forum tells me that good old Dr Google said you have Lymphoma. Well I can't say you don't as I am not a medical professional but what I can say is that your questions come up in the forum a lot and a very very high % of folks don't stay long on the site as Lymphoma is not the issue....... and even if it does turn out to be a journey you have to go on I can say from my 19 years living with NHL that all is not lost.

So what do you do? You have to continue to work with your health care professionals as they are the only people who can get all the jigsaw prices put together to find out what is going on with you. Do your best to stay away from Dr Google..... I am clear of all NHL but still have a lump in my neck and yes if I ask Dr Google about it after three clicks I have Lymphoma (which I don't) and the fours click brings up an add for an undertakers!!!!!..... which I will need one day but not within the 6 months that Dr G told me.

So keep trying to live a normal life, keep a note of any issues you are having and if you experience developing issues go back to your GP and ask all your questions as these will help your GP to work through the massive list of issues our bodies can throw up and 99% of the time these are not cancer related.

Always around to help out and listen Highlander ((hugs))  

........ and as for symptoms.... for me I had nothing apart from a bad skin rash. Remeber these bodies we live in are very complicated machines and even high stress levels will bring on NHL like symptoms...... work with your GP.

Hi Thehighlander,

Thanks so much for taking the time out of your holiday to respond so quickly. I really appreciate your kindness. It feels a little better just knowing people are out there willing to listen and share their experience and knowledge.

I know your are right - I need to just carry on and live my life. I'm going to do my very best! Thank you 

Hi again, I am sitting on a sun lounger overlooking the shores of Madeira and I am say this not to say 'look at me' but rather to say regardless of how bad life gets there is a way forward. My 19 year story is rather long and not without some hard times (hit my forum name to see it) but the one thing I have learned over these years is to trust my health professionals. 

The emergence of Dr Google and self diagnosis is actually eroding our trust in GPs but where would you take your phone, computer, car to be fixed?...... to someone who understands the way to diagnose.

It is very important to remember that your GP is not a mindreader and can only work with the evidence presented so as I said......... and this is always the case if you have any doubts you take it to them but in the mean time live life, do stuff that makes you happy........keep off the alcohol ;-) just to see if alcohol is just not agreeing with you and live a healthy lifestyle with healthy fresh food keeping away from fast food and see what that does for you and if you need the site further down the line come back on this thread as some of use are always around to help out a give you positive vibes.

Highlander ((hugs)) now where did that sun go?

Thanks again. I will take your advice on board. Hope you have a wonderful time!

Hi Positive Polli

Almost exactly 7 years ago I had a painless enlarged node in my neck and an enlarged spleen. A number of tests eventually showed it to be nodal marginal B zone lymphoma. I've had on set of oral chemo plus something called a monoclonal drug: Rituximab which targets a specific white blood cell which has a certain protein attached to it.

Then in2015 I had 6 weeks of a chemotherapy called Bendamustine and Rituximab, plus 2 years of Ritux every two months. During both sets of treatment I lost no hair at all, and the worst thing I suffered was withdrawal from the steroids I had with each treatment! I asked my consultant what my prognosis was a few weeks ago and she said, 'Oh, decades!" (probably a bit optimistic , as i'm now 75!) but what I'm really saying is that most lymphomas are treatable long term, if not curable &, that apart from a tendency to feel tired, not too bad at all! Talk about all your worries as much as you need to is my best advice.

Good luck with everything!

Arty Gran

Hi, 

Thank you so much for responding with your experience. That's given me hope! Just what I need right now.

Take care X

Hi again. Over the past 24 hrs I've noticed my spleen has become more swollen. I am more uncomfortable and notice that my ribs are protruding out more on that side. I also feel quite nauseated.

I really don't want to go to A&E but also not sure if I should be just waiting for my ultrasound on Tuesday. My understanding is that this scan will only show if it is enlarged not but we know it is already??

Any advice please?

Good morning Polli and sorry to hear this, the Ultrasound will show up your spleen and other areas. As it is the weekend and should your symptoms get worse call NHS 24 on 111 (up in Scotland?) in the first instance and talk with them and explain the tests you are having and your issues. Should it develop that you have bad nausea or pain a bust to A&E may be required.

Warm Highlander ((hugs))

Sounds like good advice. Thanks X