NHL

So sorry to hear this. Yes, we can take care and still contract any number of environmental  and even hereditary illnesses. Truthfully, out bodies produce mutated cells regularly. I do not know the estimated number but it would be shocking. Our immune systems normally catch them and eliminate them, but every now and then, one slips through. Every journey is different, so only time will tell. However, take note of the potential positives from this: you are physically fit. That much is certainly good. However, you are not mentally, psychologically, even perhaps spiritually prepared for battle. You may very well have an increased appreciation for life and a keen perception of the its fragility and ultimately, the blessing that each morning is.

Hi  and welcome to our corner. I am over 21 years down the road from my first diagnosis and also lived a very healthy lifestyle.... It’s how that cards get dealt I suppose.

I actually take comfort in the fact that I have my type of NHL and don’t have MS, Parkinson’s and type 2 Diabetes like three of my close friends...... there is now way out from their life sentence.

What of the 60 types of Lymphoma do you have?

Hi Gavlar5

I think most people will have had the why me thought at some point. Getting angry at it or anything for that mater is a waste of energy. 

Personally I'm content that I'm still around a year after diagnoses. Things seem ok at present and if something crops up it will have to be tackled if it happens. I am frustrated with all the covid restrictions but I'm sure so are most people if they have had cancer or not.

Hi Thehighlander as you have lived with nhl for 21 years can you tell me what symptoms of illness you are likely to suffer please .At the moment l have ulcers in my mouth but other than that l feel fine,l keep thinking they must have made a wrong diagnosis.My next step in treatment is injections once every 2 months for 2 years.I haven't started these yet 

Hi morning , due to the quantity and complexity of the tests required to diagnose NHL I very much doubt that you were misdiagnosed but always talk with your team about your concerns.

To help us understand and support you better a few questions.

What exact one of the 60 types of Lymphoma do you have?

What Chemo/radiotherapy treatment did you have?

When was your last treatment?

Mouth ulcers are most likely a post treatment ‘left over’ but a good quality mouth wash should help but do talk with your team as they will know the best one to use in your case.

Everyone follows a different journey before treatment started and for me the only symptom I had was skin problems then eventually a raised lymph node.

I am now over 5 years post treatment and I am left with some treatment ‘left overs’. Like a permanently reduced immune system, weakness in my legs, pains in my neck, a Hiatus Hernia, some minor heart problems....... these are not ‘symptoms’ that would indicate my NHL is active or has come back.

I see these being acceptable reminders that the treatment journey I went on got me into remission against all odds and ai am happy with this.

I did not get the two year maintenance as it would not be any use for my type of NHL but there are others in the group have had this so let’s see if they pick up on your post and give you some first hand experiences.

Do keep posting.

Thanks for replying Thehighlander but at the risk of sounding stupid l don't know what type of NHL l have,l didn't realise there where over 60 types, thats a question l will have to ask plus l thought chemo was just chemo though l suppose there must be different strengths.The doctors told me l am going to have injections every 2 months for 2 years but that hasn't started yet ,l finished 6 months of chemo in the first week of December

I am still reeling from the news of this,l always remeber thinking when l was out running that l'm going to be fit forever !

It just goes to show you that l should have smoked 20 woodbines a day and had a diet of red meat ! l might be ok then

Hi again, I do think you have some questions to ask as information is key to allow you to navigate through the rest of this journey.

Hi Gavlar it sounds like you have an indolent type of lymphoma and if you are having maintenance treatment it could well be follicular NHL but as Mike has suggested do ask your team. For some it does take a while to absorb the diagnosis and treatment and it can all become a bit of a blur as you are carried along by treatment and the routine that brings. 

Hi johnr it does seem to be a whirlwind at the moment l am still in a state of disblief,l don't know what is going to happen to me,l try to ignore it the best l can,l haven't told any one at work because l don't want to talk about it ! I don't know whats worse knowing whats going to happen to you or not knowing.I try to keep positive by not thinking about it but the minute l am reminded such as hospital appointments it really gets me down