Just been diagnosed with follicUlar lymphoma stage 1/2, anyone on a similar journey?

Hi Glann so pleased u r doing well! Hope you will not need treating again in your lifetime so u have plenty of time to enjoy yourself!! I dont let much stop me i keep ploughing on lol!! Nice speaking to you again keep in touch luv n hugs your way Donna x

Hi Donna

It's been a while since I've been on and saw your message...and it got me thinking. I'm still getting checked by hematology and going there tomorrow after more bloods being pulled out of me! lol

I've been having trouble with breathing and really bad chest pains, so my Dr put me on Ventalin to help with the symptoms...she suspects it could be long Covid or another way to say, I don't know what's causing this?

I had an X-ray of my lungs, but they were clear. So not sure what to think...and yes it worries me to think it's something more.

I'm trying B complex tablets for a while to see if it could be a lack of these vitamins..

I hope all is well with you..

Debbie

Hi Debbie nice to hear from you, how are you doing? Im trying my best to put the big C to the back of my mind and get on with life! But obviously still got to look out for symptoms but it does your brain in lol! Looks like you are still not needing more treatment ? We just have to get on with it lol! What part of the country are u at? Nice to find out a bit about each other, i dont know about you, but i find people around me dont understand at all, almost like i have been cured, they dont want to talk about it, and dont want to listen to me talking about it, this living with lymphoma is so surreal! Me n hubby had a barney a while ago, and i mentioned cancer he said oh that old nugget again!! But he completely blanks it!! Anyway ranting a bit lol! X

Hi Donna..️

It's ok to rant, we all need to recognise that we need to let off steam now and again..

For me, my family has gone through the cancer journey more often then liked .I am the fourth and youngest in the family to have it...so I was kinda prepared and already had ppl around me who were willing to listen, but outside the family ring was a different matter. I had to end friendships because of their actions. It was a sad time but necessary for me to get better.

Don't be hard on your hubby... it's his way of handling it even though it must get on your nerves..lol

There is so much negativity about cancer and ppl thinking it's the end of your life is old thinking, but as you know it's still around..

I live in Ireland, in a quaint little city called Waterford...it was a viking settlement in the beginning..

I'm actually Scottish and moved here in the 90's, along with family looking for a change..I'm still there I guess I'm still waiting for that change?? 

Stay strong..️ 

Debbie

Hi Debbie, My granda was from Waterford. But I grew up in the north (Down) and then went to live in England after I got married (better weather!)

Hi Cormac 

That's really cool..Waterford is not a bad place...I've been here for over 20yrs. I've watched it go through so many changes I hardly recognize anyone...lol

After the cancer, I'm still trying to find my place...so I pass the time playing PS4 games and embroidery? 

Stay strong 

Debbie

Hi Mike, just felt the need to pick your brains again, i have got myself in a right predicament!! So here goes!! Been on w& w for FL stage 1/2 no B symptoms, for 2 years approx, 19 months ago they sent me for a echo on my heart incase i needed treatment! Girl doing scan said she couldnt discuss results as Doc would, but if she had seen anything wrong she would have asked Doc to see me immediately, and she wasn't gonna do that!! So came away feeling my heart was fine. About 5 wks ago i asked for copies of hospital records for another reason and SHOCK/ HORROR a report telling me i have severe aortic stenosis !! Which is a valve knackered in the heart, and only gives u 2 years to live after diagnosis!! And can be asymptomatic as obviously i was!! I thought ( hoped)there had been a mistake! i informed my oncology team and they sped into action!! But to say i have gone to pieces is an understatement!! I have found the stress of having a 2 nd life threatening disease really hard to take!! They have got me emergency tests appts ect, i will prob get the open heart surgery in under 2 months!! I think i have prob got PTSD as cant stop crying!! I am a tough old bird and i will get through it!! But to top it all i have noticed my lymphoma lumps are more prominent, and a new one in my neck !! I am petrified Lymphoma has turned nasty, cant have Chemo as i understand it till heart is fixed, however still no B symptoms!! I also had been on a diet with my daughter for an upcoming holiday i lost a stone i wonder if i can feel lumps easier?? And they have been slowly growing over last 2 years!! I know i have to report to my team, but am going to have this holiday 1st but im hoping it might settle or am i just wishful thinking, just cant handle more tests ect at the mo, thought u may have thoughts experience, words of wisdom, i realize u r not a Dr Mike but would be grateful for a chat!

regards Spoons ( Donna) x

Hi Donna️

I just got the alert and your text...I know it's been a while since I was here...I've been going through some stuff and worries too..

It can be hard not getting all the answers you need, feeling like the Doctors are not listening or your not able to fully convey how your feeling with everything.

I had a recent chat with a doctor and I just couldn't make myself understood..I fumbled and tripped through my words and left feeling stupid...!

I have to get a heart check up too as I'm getting some bad muscle like chest pains...so like everything else it's a waiting game to be seen..

I hope you can still go on holiday as you deserve a break...

If you need to chat, I'm here for you

D️ebbie

Aww Hi Debbie, thanks for writing , you must have read my mind i was gonna sit a write to you to see how your doing over there in Waterford! So sorry to hear you have some issues going on!! Sometimes you can just scream!! Life is not fair, u would think 1 illness should be enough!! So i expect ultrasound will be next for you to check your heart! Fingers crossed it will be something easily treated!! I am still in Shock on a whirlwind of tests ect!! Got angiogram on tues!  Exciting life i lead lol! The British heart foundation are informative if u feel the need for a bit of digging? The symptoms of valve trouble which i have are breathlessness mainly & pain, just the pain sounds like perhaps Angina which can be treated with medication, i will keep my fingers crossed for you! Because i am young lol 68 ! They think i may have a congenital defect, just got to wait & see, im also here if u need a chat, i totally understand your worry xx

Hi Donna Spoons (and indeed Debbie TKjedi ) first a few supportive ((hugs)) and now take a few big breaths....... and again.

As for your heart issue.... that's a bummer but good that it has been found... although should have been acted upon quicker..... but that is water under the bridge and let's look for this to be fixed soon. 

I developed A-Fib (Atrial Fibrillation) during my very last bag of chemo before my second SCT..... that was Oct 2015.

The A-Fib always shows its ugly face when I develop infections....... over the first 3ish years post SCT I was back in hospital 5 times (30 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Septicaemia........ and my heart would always go crazy so was continually monitored......... I will also say that when I have any infection..... small or large my lymph-nodes just get bigger.... slowly reducing as things improved. 

April 2014 I had a heart attack but some surgery and a few stents later all is ok.

Unfortunately other health stuff happens but try and not jump onto the relapse roller coaster as it is easy to do this especially when other health issues come along.

If you have lost weight you will feel any raise node easier....... and yes stress will effect them so do get your team to check you out once you get back from holiday.

Spoons said:

just cant handle more tests ect at the mo

.....in reality you have no option, it has to be done. I am on the raised PSA rollercoaster yet again following going through tests last year for bowel cancer, prostate cancer and a lot of other things that my mind was willing to throw into the mix.

((hugs))