Newly diagnosed

Hi Andy  and welcome to the Community.

I am dropping in past from our Non Hodgkin's Lymphoma groups just to say Hi

I was diagnosed way back in 1999 with a rare NHL and yes, a long treatment journey for me but I am in remission and doing great - so be encouraged.

It is very important for your team to get every detail correct as this will help your team use the very best treatment for your presentation.

Blood cancers are on the whole, very treatable with good results, yes the treatments can be full on but do-able.

But please don't see Lymphoma in the same light as other solid tumour cancer - so even if your team come back and say stage 4 its not like in other cancers - I was stage 4 for many years.

Information is key and always use the best information places..... not random google searches. Lymphoma Action is great as well as the Macmillan Online Information and Support Section.

I see that you have made a start to 'your' story  - this will save you having to reset yourself when you put up other posts and as always you can hit members names to see their stories.

Lets look for some of the HL folks to come along and introduce themselves to you.

Thanks Mike, and thanks for responding so quickly. I've put some info and a summary of what's happened so far on my profile.

I'm sure that as time goes by I shall use these forums a great deal. 

I am very careful about where I research anything about Lymphoma, so thanks for the link - I'll check it out. 

A friend of my mother's had HL many years ago and she is part of a support group at the local hospital. She has given me her number so it's great to know someone local to me already that I can go to for support. 

Thanks again, 

Andy

Hello Andy/, 

And another welcome, though sad you've needed to find your way here. 

Yes, avoid google as its full of scare stories and usually well out of date, stick to here or the small but informative Lymphoma Action charity. They too have a helpline during the week, 0808 808 5555 in case you need very specific booklets. 

As Mike says, blood cancers are rather different to solid cancers, and a stage 4 is likely just o get hit with a bit of different or longer chemo.sessions. Telling your children isn't easy but bear in mind if they suspect, they would rather hear it from you than worry and make mountains out of molehills. Kids adapt surprisingly fast, they just need info and comfort, they will ask once they know what's what, to be honest. 

Keep posting! 

Hugs xxx

Thanks moomy

I've seen quite a few of your posts today! With the kids,  I just want to know as much as possible before telling them so I can answer their questions. The oldest 2 have already apparently asked the wife (they're 14 and 20 - both boys) as they've been picking up on things (I rarely need to go to my GP but suddenly I've been to the GP and hospital a few times in a matter of weeks). My mood is usually pretty good but obviously with what's going on I'm finding the tiniest things can bring me close to tears. We've asked them not to say anything to their younger siblings (both girls) until we know exactly what's going on,  but the wait to tell them worries me as I feel like they're kinda excluded at the moment. 

Thanks for responding.

Andy

Hi Andy,

I can understand your reluctance and also feeling emotional, had both, with firstly our daughters very resistant HL (obstinate, like her, she says!) and then my breast cancer. Emotions do run riot at such times. It might be in order to tell your girls that, yes, Dad isn’t too well at present and the treatment might make him look worse on the outside but will help him get better, and you’ll tell them more if they want to know? 
it might help to have a look at leaflets that I think Lymphoma Action produce on telling your children? They may well be available on line?

hugs xxx

moomy

I know they're going to be confused as hell. I run 20-30 miles most weeks for my physical and mental health, I haven't even had so much as a cold in months... trying to tell them I'm ill is gonna sound so strange. 

Hopefully everything I've done to look after myself so far will put me in good stead when treatment starts. From what I've read, this should also put me off alcohol,  which can only help me in the long run too. 

Thanks for the advice so far

Andy

Hi Andy,

yes this will make them feel a bit worried, I guess, but as you say, being so fit will actually be in your favour as you should bounce back well each time after any chemo hits you! 

Being fit was what ultimately helped our lass through, she’s a freelance brass musician who uses her lungs as much as an athlete. She was also running pre-diagnosis and about to register for the Great North Run. HL knocked that one on the head, and she’s never got round to doing a lot of running since. 

Keep posting, as you can ask anything here, no question too daft! 

Hugs xxx

Andy, I was fit, well and 58 - 60 when I went through my main NHL treatment, yes, I had a hard treatment journey but being younger and fit places you in a very good starting position to go forward.

Hi Andy,

Sorry to hear what you're going through.

I was recently diagnosed last week with Hodgkin Lymphoma but I can really relate to how horrible it feels waiting to know exactly what type it is. There was a lot of waiting; I was originally told mine was a sarcoma before a PET scan and biopsy was done which showed different results. The waiting is the worst because you just want to know but it's also really important they know everything they can so they have the best chance of treating you. Although it's devastating thinking about the exact diagnosis, really the only justification is that at least you'll then know and you'll be on the way to getting better. Hold on to that.

I can't imagine how terrible it feels thinking about telling your kids. I'm 20 myself and telling my family, especially my two sisters 23 and 19 was the worst. In my experience there was a lot of confusion. We all couldn't believe this was all real. I don't know whether that is how it will go for you but if they can sense the unrest, they probably would prefer to know. The slightly older ones might be able to cope better but unfortunately there is no way to sugar coat it and there's not really a way to predict how they might react beyond knowing it will be hard. My best advice is tell them at a point where there is at least a roughtrough plan in place because then at least they can focus on the fact that there is something that is going to happen to help you get better.

It can be really difficult to focus on positives, anxiety is consuming, but there are a lot of positive outcomes of treating lymphoma. I know the anxiety might not go away just because of that, certainly hasn't for me, but I found it helped to read people's positive stories. Lymphoma Action is a good website as well as reading the forums here. Just don't Google, it will bring up less reputable sites and you can get in to a whole rabbit hole of bad things. The internet is not a good doctor unfortunately.

There's not really anything else I can say but I'm sure a lot of us here can relate to what you are feeling. Good luck! And I hope you get the best results you can, given the circumstances.

Lily

hi

Thanks for your words. I have my first specialist appointment on Friday where I am sure I will learn a lot. We have decided to have the family talk on Friday afternoon. I am just so worried about how my girls will take it. They're both beautifully sensitive souls and I have a fear that they will struggle with it at least as much as I am. 

Just to make this even more messed up in 2020 I got a message from a friend who's also been diagnosed with cancer. He's a bit further along and is due for some major surgery to remove parts of him. It's odd how I felt bad telling him about my diagnosis - just the way my mind works that I feel like I'm trying to draw attention to myself when I simply want people to know what I'm going through. 

Andy