Well I had my 6 months check up in June and it looks like everything is progressing.
Even though I have an 'abundance' of enlarged nodes the three main ones they are really taking notice of are getting bigger.
My oncologist said to me that when I have '3 nodes over 3cm its time to start treatment'.
Two in my abdomen have grown to over 4cm but the one under my clavicle is 2cm.
I don't know why but I am much more at ease after my check up.
During the first 6 months it was all playing with my head. Not on a daily basis but I would definitely have my flat days.
Since my check up I am more at peace and am just getting on with things.
I am personally predicting that I will need chemo after my next check up in December the way things are going although my Dr said that they could actually shrink by themselves in that time and I would still have to wait.
I am not being negative but my gut is telling me it's going to be the opposite.
In the meantime I am looking forward to just enjoying life. Going on our family cruise in August, heading to Byron Bay with 6 of my girlfriends in October and then my 20th wedding anniversary with my hubby in November.
I am also really excited to participate in the Relay for Life on 11 and 12 October.
I've had an overwhelming response to a notice I put on Facebook. I have never 'put it out there' about being diagnosed so only really my family and close friends knew about it. I wrote how wonderful the Cancer Council has been in supporting me since diagnosis and they will no doubt be there through the long haul and I wanted to give something back to them and asked for people to sponsor me.
I raised $300.00 in 6 hours.
I still feel a little funny saying that I have cancer when other than feeling low sometimes I am really well. I think of everyone who is going through treatment at the moment and just hope that I am as brave as they all are.
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I'm hearing you. We do need to have a 'touch of the sads' sometimes. It's only natural and helps us to let out any emotions that are bottling up. 'Better out than in' as they say.
I find that most people treat me as normal but there are a few who pat me on the arm, give me a sorrowful look and say 'how are you feeling, is everything ok'.
I know they mean well but give me a break please don't act like that every time I see you. That's depressing in itself.
'Happiness is something we decide ourselves. There are a lot of reasons to be unhappy but we choose to be happy because it makes us feel alive'.
Hope your scans went well.
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It's only been just over 2 months since I was put on the 'watch and wait' approach for Follicular Lymphoma.
I have been having periodic sensations in my left arm for while. I mentioned this to my GP a few weeks ago but he didn't seem to think it was anything.
This morning I woke with swelling above my left collarbone.
I called the cancer care nurses and my oncologist wants an urgent CT, which I have an appointment for tomorrow and then an appointment to see him on Thursday, 27 February 2014.
I am trying to be positive and upbeat about it all but I'm afraid deep down it is getting the better of me.
I have had a sickly feeling all day. Is this it? is this where the next step of my journey with Lymphoma begins? A part of me hopes not but then a small part of me kind of hopes it is so that we can just deal with it and get it over and done with. Is that wrong of me to think that way?
I've found that I am constantly checking for any signs of progression. I haven't been fanatical but probably about every couple of weeks.......is that fanatical? It really is hard just to put in the back of your mind.
I am booked to have a weekend away in Orange with my 'cruise buddies' this weekend. Regardless of the outcome of the tests I am still going. I need to surround myself with love and laughter as much as possible and they certainly are a fun bunch.
The weekend after I am looking forward to spending the weekend with my girlfriend I grew up with, just the two of us. Leaving the husbands and kids behind.
These are the little things in life I have to concentrate on, it puts a smile on my face just thinking about what wonderful friends and family I have and how happy they make me.
Oh well.....keep your fingers crossed for me
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Hello again Steve
Lucky you had follow up CT to check on the nodes and they didn't leave it at the negative biopsy.
My initial biopsy was negative as well then about a week later the Dr said that they had done more detailed tests with the sample from the FNA and it showed a large popularity of B cells suggestive of lymphoma. That's when i went on to have a further biopsy to confirm.
Have you had a bone marrow test yet?
No wonder we travel on a roller coaster of emotions. Weeks of tests and waiting for results which they want asap and then we get a diagnosis and nothing.
Anyway, my meeting with the counsellor was great. she confirmed I was normal to have good and bad days. worked out (which I already knew) that my mind works overtime and that I need to have some time to myself. She directed me to the Cancer Council to get 2 cd's one mediation and the other relaxation.
I have been forcing myself to sit and listen to either one every day and I find that it is very beneficial.
I wouldn't have done anything like this before, I'm quite enjoying the quiet time. You should give them a go.
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Hi there Steve,
Nice to hear from you.
I also have swollen nodes in my stomach (an 'abundance' apparently, wish they would tell you how many that is) and a 3.5cm left supraclavicular node.
You know I feel the same way about just sitting around waiting. I was so positive in the beginning and thought that I would be fine with it.
I find it a blessing not to have treatment straight away and to give myself a chance to get as healthy as I can before that time comes but I certainly do have my flat days.
The Cancer Council have been wonderful and I am actually seeing one of their counsellors tomorrow afternoon.
I really didn't think I was worthy to see someone seeing I'm not at a stage where others certainly are but they explained to me that everyone's journey is different and this is the stage I am at right now.
Even if I only need to talk to them a couple of times I think it will be beneficial.
Let me know how you go with your GP.
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This is my first time using a blog. After six weeks of being poked and prodded I was finally diagnosed with Follicular Lymphoma on 19 December 2013. What a relief it was to finally receive a diagnosis, one which came totally out of the blue mind you and threw me and my family for six. They discovered an enlarged 3.5cm supraclavicular lymph node on the left side of my neck during a routine thyroid ultrasound. Further tests revealed an 'abundance' of mesenteric lymph nodes, para - aortic and on my bowel.
Because the nodes in my abdomen are no larger than 10mm they are taking the 'watch and wait' approach with me for now. I thought I was ok with this but over the past few days have been feeling a little low. I feel that everything has to be normal but it's the last thing I think of before I go to sleep and the first think of think of when I wake in the morning. I have a very supportive husband and family but don't feel that I should be talking about it all the time. Hence my decision to write a blog and connect with others.
My mother was diagnosed with Follicular Lymphoma in December 2010 and went into remission six months later. I know all about this type of cancer from her experience so up until now have been feeling very positive about the road ahead.
To our shock my mother has relapsed and was told three days prior to my diagnosis that her lymphoma had returned. We are still waiting for the final result to tell us what type it is. Who would have guessed that both of us would be going through it together, especially since it's not hereditary.
We share the same Oncologist (who treated mum for her first diagnosis) and who we have total faith in.
Even after typing a few lines I feel like writing this blog is just what I needed to get things off my chest. No doubt with the 'watch and wait' approach i won't be making too many entries until the time comes that I need to start treatment, which I hope is a long way away.
I have read a few entries from others and already feel positive that this site will give me encouragement and look forward to connecting with people.
Thank you for sharing your stories
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.