Thanks for your encouraging words. I am scared all I have been doing is reading about lymphoma. I can't sleep, eat and think. I honestly don't know how I am going to cope if I am diagnosed with lymphoma. Tatally shocked. Did your cousin had low grade lymphoma and what was the treatment method?. Thanks

Hi there,

Well as I say the statistics really are very much on your side for getting through this, try and hold on to that as much as you can.  Not to say it will be easy for you as you go through it but at least there is life at the end of it.

I'm not that close to this specific cousin but I believe she was stage 2, I know she had what are called 'B symptoms'.  If that makes her stage 2B then that counts as advanced stage I think.  She had chemotherapy (don't know what type sorry) with steroids.  Of course there are many different types of lymphoma so treating will vary greatly I would think.

There's not much I can say to you other than you can't change it, the diagnosis will just reflect what is happening in your body already, so the worry, lack of sleeping and eating won't help (even though it's a natural reaction).  It might help you to feel you are taking some control of the situation if you put a plan in place now to look after your body, that way you are doing something positive and are taking back some control at least.  Getting down to health living will also help you cope with the side effects of any treatment you have, and it's fair to say it's not going to be easy so anything you can do to help is in your best interests.  Come to think of it, the healthy living is something you can involve the children in too so they're helping you in a way and it might make the whole thing less scary for them, it's obviously good for them anyway (you might do all this already, sorry if I'm preaching to the converted).

Whether you have chemo or radiotherapy looking after your skin is a big deal (plenty of fluids and moisturising regularly), as well as looking after your oral care, and you can start both of those now.  If you are going to be on chemo then I would suggest getting a dental check-up first and having anything done that needs done.  Another thing is stocking up your cupboards before starting treatment (with healthy stuff that it will be easy for you to eat), annoyingly fresh things have to constantly be bought or picked but tomatoes and cucumber are the things I find it easiest to eat just now.  If you have the healthy stuff there it makes life a lot easier.  Obviously I'm not suggesting 'no treats', I've just found that really fresh fruit and veg is what I've craved, but maybe I've just been lucky.

My cousin did cope admirably (despite two children and fostering) but she also had a lot of family support.  I believe she was upset by her hair loss (I'm fine with mine, especially as it's a hot summer!) and weight gain, but actually her mum's side of the family isn't thin really and in photos she didn't look like she gained much weight at all.

Cancer Research's pages here www.cancerresearchuk.org/.../lymphoma will give you some useful info.  Do note that survival rates are very, very good indeed, and you can take some control to help give yourself the best chance too.

Best of luck to you, hoping it is low-grade obviously.

LJx

Hi [@4ever]‍ 

I was diagnosed with follicular (low grade) lymphoma last October and from December - April had RCHOP chemo as they'd discovered it had transformed into high grade lymphoma.

I can't speak for everyone, but in my own experience, it has not been as bad as I had expected. I was symptomatic and chemo was no walk in the park, but I managed it all fine and now live in remission but with low grade lymphoma underlying... it can only be treated, not cured. But believe me when I tell you I feel 100% well and happy at the moment. 

Lymphoma is something I know you can live with for decades if it's low grade - yes, there may be relapses, but not necessarily and also you can have long remission periods where you feel totally fine. With higher grade lymphomas, these can actually be totally cured.

I can imagine you are scared though - I was at first but now I'm not. Though of course I do live with a bit of a nagging doubt about relapse, but not so as it takes over my life. I'm now back at work and all is back to 'normal'.

Please reach out if you need someone to talk to or have any questions on my own illness or experience. 

Emily x