Hi everyone, I have just been diagnosed 2 weeks ago with Follicular Lymphoma which is low grade and slow grown . My head is absolutely all over the place. I have 2 tumours deep in my abdomen, one small and one big which they think ive had for a couple of years. I am not sleeping due to anxiety and stress because there is no cure however i have been told there is treatment and I am starting chemotherapy on 22nd April . I have just taken early retirement due to work related stress so this was supposed to be a happy time making memories with my husband Simon. I am trying to stay strong by going out walking 5 miles everyday and im slowly getting my appetite back. When I see my cancer nurse specialist on Friday , I am hoping she will be able to give me something to help me sleep as I feel exhausted. Ive also been referred for counselling too! Im hoping others on this site will be able to relate to what im going through at this moment in time . Thankyou Karen
Hello @Karen58
Thank you for taking time to send your post into the forum
Im so sorry to learn about your diagnosis, my heart goes out to you.
Im one year post diagnosis, and so i feel i can relate to that initial shock that you describe. I took some talking therapy and also asked my GP for a gym referral (you mention walking 5 miles - and i agree execise is so good for the body and the mind).
I too retired (March 2023) and was so annoyed that the time i wanted to spend enjoying retirement with my wife was now impacted by my cancer (i have Chronic lymphocytic leukaemia ('CLL')).
Sleep can be very difficult as ones mind is all over the place, but i found in time this becomes a little bit easier. Also, fatigue is a factor for me, and i find myself falling to sleep most afternoons (im semi retired so i get couch time).
You are not alone - lots of people here to engage with and many with have not dissimilar circumstance to you.
You may find the link - Recent diagnosis - Blood Cancer UK Online Community Forum relevant and also the link Recent diagnosis of follicular Lymphoma .
Please do feel free to let us know how you get on
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Take good care of each other
Kind regards
Mike
Hello @Karen58 and a warm welcome to the forum.
I’m so sorry to hear about your diagnosis.
It’s come at a time when you and your husband were ready for the next stage of life.
I can totally relate to how you feel. I wasn’t in a dissimilar position back in October 2023 when I was diagnosed with Myelofibrosis about 6 months after taking early retirement.
All the plans my wife and I had for celebrating our 60th birthdays had to be postponed.
Treatment started quickly and throughout the treatment I was determined to stay as active as possible, mainly walking.
I was fortunate to have a Bone Marrow Transplant last April and just passed my one year anniversary.
Once you have a clear treatment plan things will hopefully get better.
You will find tons of positive support here and @GenesisDevice has already shared details of the Blood Cancer Support Team which will hopefully help.
I know when I was first diagnosed I made a decision to just take things one day at a time and not focus on what might happen.
The care I’ve received from day 1 has been amazing and hopefully it will be similar for you.
Take care
Thank you so much for your reply and for giving me some important contact numbers Mike. I really appreciate this.
Thanks Karen
Thank you for your reply Duncan. Sorry to hear you were in a similar position to me and my husband, its his 60th in June and we have had to put things on hold. Regarding my treatment , all we can remember is it is Chemotherapy for 3 month then a ct scan to see if the tumours have shrank then 3 month of something else but the specialist nurse is going to go over everything with us on Friday as we were upset in the consultation when I was diagnosed so the meeting was cut short and didnt find everything out.
Thanks Karen
Hello there @Karen58, welcome to the forum at this worrying time. I’m so sorry to read about all the stress you’re experiencing but am heartened that you’ve been referred for counselling.
Perhaps, if you haven’t already, you might like to read the Blood Cancer UK information about Follicular lymphoma ('FL'): Follicular lymphoma | Blood Cancer UK
I see @GenesisDevice and @DuncanB have offered great tips as always and I would second Mike’s suggestion of calling the lovely BCUK nurses, they’re experts and you can ask them about your diagnosis and other aspects of such an anxiety-provoking change.
While I live with a different blood cancer called Polycythaemia vera ('PV'), it is also considered chronic like Follicular lymphoma ('FL'), as in it develops slowly, if at all. I take a type of chemotherapy called hydroxyurea daily in capsule form. It’s very sci-fi! From my non-medical understanding, many of these chronic blood disorders need very minimal treatment, like the chemo I take. These are all good things to ask your specialist about when you seen them on Friday.
In fact, my main tip would be write everything down, note all your concerns and short-term or long-term queries and ask at your appointments. If a loved one can accompany you that can be helpful to help take note and offer comfort.
Do please keep us posted about how you get on, the forum is here for you @Karen58.
Hi @Karen58
I was diagnosed with follicular lymphoma 9 years ago now. I was 41 with two young children and it hit me really hard.
Like you, the incurable part of the diagnosis was really hard to get my head around. I needed two operations and radiotherapy but not chemotherapy. 9 years on I’ve had no further treatment and am feeling good.
My clinical nurse specialist was amazing and really took the time to talk things through and answer any questions I had. I would make sure you write down any questions and take somebody with you to the appointment if you can as I just felt so overwhelmed with it all.
Follicular lymphoma is very treatable and there are so many treatment options. I know your emotions must be all over the place so just be sure to give yourself the space and time you need.
There are others on here who may have had similar treatment to you and I hope they will be able to share their experiences.
If you feel able to, give the helpline a call before your appointment. They are amazing! I really struggled with sleep as that’s when my mind went in to compIete overdrive. Counselling was really positive experience for me so well done for accepting the help that’s available.
Sending you a really big virtual hug because I really do know how hard this is. It takes me right back to diagnosis and how scared I felt.
We are all here fur you X
Thank you for your reply Duncan. I will definitely give the nurses a call tomorrow to discuss how I am feeling. My husband will be comingwith me on Friday and I have started writing things down that come into my head especially during the night when I cant get to sleep. Just hoping in time , I can start to process what my diagnosis and treatment entails.
Thanks Karen
Thank you Nichola, that’s amazing to hear that 9 years on , you have had no other treatment and are feeling good! I will definitely ring the helpline tomorrow and hopefully it will clear my head a little bit before Friday’s appointment. I just feel as though i am in a bubble and cant concentrate at all. Thank you so much for my virtual hug too , much appreciated!
Thanks Karen
Hi @Karen58
One thing my wife and I have done from day 1 is for her to scribe while I and the Consultant talk.
Before we leave the appointment give my wife the opportunity to ask questions and any clarifications she needs.
It’s amazing what you miss when you’re the patient.
It’s also good to look over notes when back home.
We always jot down things we want to discuss ahead of each appointment
Take care
Hi Duncan,
Thank you for that information. I have got a note pad that ive wrote questions in for Friday but didnt think about my husband scribing during the meeting and for him to ask his own questions !
Thanks Karen
Glad it was helpful @Karen58
It definitely helps to have a scribe in your appointments.
My wife does an amazing job at recording things.
Make sure have plenty of pens too.
When we went to Glasgow to discuss a potential Bone Marrow Transplant first time round there was so much information that my wife had to get a second pen as first one ran out.
That’s unusual but thought I would mention as we don’t tend to write much with pen and paper these days
Hi @Karen58, and welcome to the forum. It’s wonderful to see that you’ve already had such a great response from the community. I just wanted to pop in and add a couple of things that might be useful.
That phrase “no cure” can land so heavily, and I know Nichola has already spoken to this from her own experience. What’s worth knowing from our clinical information is that follicular lymphoma is very much a condition people live with over the long term - many people achieve remissions lasting years, and there are good options if it ever needs treating again down the line. Our nurses can talk this through with you in much more depth if that would help, and I know you’ve already said you’ll be giving them a ring.
Since you’re starting chemotherapy on 22nd April, it might also be worth having a look at our information on what to expect from chemotherapy, if you haven’t already, and it sounds like Friday’s appointment will hopefully fill in the gaps around your full treatment plan too.
Keep posting as things unfold - we’re all here.
Take care,
Ceri - Blood Cancer UK Support Services
Hi @Karen58
I’m so sorry to hear you’re going through this. That “head all over the place” feeling is something many of us here know only too well—especially when your diagnosis came just as you’ve started your retirement.
I wanted to share my story to hopefully give you a bit of comfort. I was diagnosed with Non-Hodgkin lymphoma ('NHL') back in 2018.Mine was found completely by chance; I thought I just had indigestion, but it turned out to be a large mass in my abdomen. I had 9 rounds of R-CHOP followed by two years of Rituximab. I’ve been on active monitoring ever since, and I’m doing really well.
I’m 55 now and, like you, I’ve taken early retirement. Honestly, I’m so busy now I don’t know how I ever squeezed in a full day’s work!
One thing that really stayed with me was some “sage advice” from my consultant. She told me, “You are just as likely to die with lymphoma than from it—or to die from being run over by a bus!” It gave me massive perspective and reassurance to stay positive, and I found that keeping positive was the best way to cope.
It’s brilliant that you’re already out walking 5 miles a day and asking for help with your sleep and counselling. You’re doing exactly the right things. You really can do this.
If the anxiety feels a bit too much to carry while you wait for the 22nd, do get in touch with the Blood Cancer UK specialist nurses. They are wonderful for a proper chat when you’re newly diagnosed.
• Phone: 0808 2080 888
• Email: support@bloodcancer.org.uk
Keep up with the walks , I walked every day during my treatment it really helped and enjoy your retirement—there are plenty of lovely memories still to be made with Simon.
Did the team explain much about what to expect on your first day of treatment?
Hi Ceri and Jules, thank you for your reply and sorry mine is late! My specialist nurse rang me on Tuesday and gave me a few different strategies to try and help me sleep. I’ve also had a call yesterday to say im starting talking therapy in 4 weeks time.
I’ve been to see my specialist nurse (who is absolutely lovely) this morning and was in over 2 hours. She explained everything to me and my husband regarding treatment, side effects etc. I now know that I’m having on Day 1 Rituximab and Day 1 and Day 2 Bendamustine , this will be every 28 days for 6 months. Its still an awful lot to take in and again im still emotional but I have been told its very early days and its normal how I am feeling at this moment in time. I appreciate everyone’s support and will make sure i keep checking my emails and keep updating you all.
Take care
Karen
I am so pleased that you are doing really well after your treatment. Thank you again for trying to reassure me as It does help knowing you have been through the same as me regarding the mass in your abdomen. I honestly didnt even know we had lymph nodes there ! I am looking forward to making memories with Simon , we just having to pause for a short while before we can continue to do so!
Take care
Karen
It’s a huge amount to take in! I’m so glad the talking therapy has come through. It really helped me.
Aren’t the nurses just amazing! I know some people don’t have the same experiences so I always felt lucky to have mine.
Keep posting. All here for you X