The In between tests and treatment plan

Hi Maggs  good that you found yourself over to this corner of the Community.

Yes its normal - once you have all the details and a plan put in place you can move forward and you will be able to look forward and make plans to get through this.

I am very touched at how quickly the responses are, does make me feel that I am not alone, I am pretty sure over the next week I will have a lot more to say and ask.

feeling the support is having a positive affect already.

can not thank you enough right now 

Maggs

Hi Maggs, my wife keeps telling me "get a life".......... well I have a second life and its not that bad.

Hi Maggie I am sure you will get lots of support once you are able to share more and know whether its watch and wait or treatment, you can also read some of the other threads like Freds here is the link

https://community.macmillan.org.uk/cancer_types/follicular_lymphoma/f/dcfa614e-f230-4246-b297-7703194fcf7f/173699/starting-treatment-27th-december-2018?Page=31#1417800

and you can see the advice and support thats given, hang in there and I am sure you will get those results soon, I assume you have had a biopsy done if you know its stage 3 and FNHL

John 

Hi Maggs

So sorry about your diagnosis.  Unfortunately the waiting period before you know what your treatment plan is tends to be the worst time of the whole thing, highly stressful and full of fear and anxiety - trust me, this is entirely normal and experenced by every patient I've ever met.  Your team needs to make sure that they have the full facts in order to give you the best possible treatment.

'Advanced stage 3 Non Hodgkin Follicular Lymphoma' just sounds so scary and you automatically think the worst.  Fortunately, the staging of this particular type of cancer is only an indication of how many places in your body it is, not the severity of it, and in some cases the higher stages may be easier to treat.  It is highly treatable and you will have a future.

I was also stage 3 with a rugby ball size abdominal mass.  It is now completely gone and I am 2 years in remission and there is no reason why this shouldn't continue.

There is no harm in phoning your Haematologist's Secretary or Clinical Nurse Specialist to enquire when you might receive results.  I also did this because I couldn't bear to wait a minute longer than necessary, feeling like I would explode with anxiety.

I hope you get your treatment as soon as possible.

Best Wishes

Tina

Hi Tina, is was very scary and I think I was just going through daily activities in auto pilot, not really sinking in that it was a cancer diagnosis. Looking back over last year or two, the symptoms to put down to other things, I also have psoriasis and psoriatic arthritis which is an auto immune condition, can have similar affects as FL. once I had put all together, I realised I have had for a while, and have lived normally, I am a can do, just get on with it type.

i am so glad that your in remission, and hope you arty that way for a very long time. 
thank you for taking the time to reassure me. I didn’t think, before I joined, that i would get so much in so little time from complete strangers. I will from now on, encourage others to seek out support sites. 
I will be calling my consultant first thing Monday, my results are there, but his secretary was unable to tell me anything. Her hands were tied, I felt sorry for her!

will be a regular here, hopefully I can help someone in the future like everyone has me so much so far.

thank you, take care

Maggs

Hi John,

I think I will have support, I am close to my family, we have had to deal with cancer a few years ago, my nephew, not a good outcome. If you can get through the loss of a child no matter what age, you can do it again. They just don’t know how to support me yet as nothing is different for me, don’t know yet if will be, those scan results change a lot of things or nothing. I went for ultra sound scans and ended up with biopsies, that clinched the deal for me, I knew. You know your body.

im a mum and always want to protect my children, even now they are grown adults. But they just want to do the same to me.

thank you for your message, 

Maggs

You learn not to take things for granted... hard lessons learned!

my 31 year old son tells me to grow up, I still feel 18, and I’m going to try to keep it that way 

Hi Maggs

your story is so similar to mine! I went through months of anxiety while waiting for results. I am normally a ver y calm, logical and even tempered person. I became someone I couldn’t recognise, paralysed with fear. It didn’t help that I was facing toe cancers. A kidney tumour was found in the staging ct scan. I didn’t want to leave the house or see anyone. Once I got results I felt back in control and got on with it. A year ago I had my kidney removed and am on watch and wait for the lymphoma. I feel the anxiety building up again when ct scans and results are due. These are every six months. 
I have three grown up sons and telling them was so hard. Seeing the fear in their eyes. Life goes on though! They have helped me get fit before and after the operation by going for long walks. A year later I feel really well although the though of cancer is never far away. Will it come back? Will the follicular lymphoma need treating. Life isn’t the same after a cancer diagnosis. You have a new normal. Once you get your results you will know what your new normal is. I had enormous support from this community and couldn’t not have managed without them. I was able to open up about my fears to them. My husband is fantastic but unless you’ve heard those words ‘you’ve got cancer’ you don’t really understand. Keep us all informed please about your results.

Good morning Maggs and I do hope you slept well.

As always some great support coming your way from these amazing folks and I am sure that you are being encouraged and can start to understand that there is a route through this and there IS gold at the end of the journey.

One of the things we did way back at the start of the journey was keep a diary/notebook..... we actually have a few now and it was good to ‘unpack’ onto the paper as it sort of put some order into our thoughts.

It was also the place where we put all our questions ready for clinics and my wife was the one that ensured the questions were asked and clear answers were given - and put into the books........ from time to time we sit and look through the small books and see the milestones of our journey, reflecting on the various challenges and how we overcame them...... but more importantly celebrating the happy news and memorable dates that defined our lives and the future.

So the house is all de-Christmased and all the granddaughters and family are back home so it’s time for some ‘us’ time so we are going for lunch at our most favourite seafood restaurant just north of Inverness on the Black Isle where we can have great food and watch the dolphins play in the firth.

((hugs))