FL - feels like we're about to need treatment now

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Hi everyone, you seem like a really nice group of people. 

Ten years ago, aged 43, my husband was diagnosed with FL. I don't need to tell you all what a horrible time that was for us both - panic, fear, off-the-scale worry, lots and lots of unbearable waiting. He had a lymph node removed through surgery, no other treatement, and ever since then we've been on watch and wait. Despite feeling like we're living with a ticking time-bomb, these have weirdly been the happiest years of my life. He is very precious to me. 

Now he has found a second lump. We are waiting for a phone call from one of the doctors but have already spoken to the nurse. The advice, I am certain, will be to monitor it for a couple of weeks and then come in for a check-up to discuss next steps. We are due to go on holiday in a few days - so we'll be monitoring things on holiday. Not quite the happy break we were planning..........

I guess I have always known that this day would come but I feel like I have been teleported back to 10 years ago. All those feelings have come flooding back - despair, terror. It's overwhelming but I am doing pretty well at presenting a brace face to C. He doesn't know I'm writing this post, nor that I'm seeking some counselling. I feel that if I declare how scared I am, it might upset him.

I know that there are really effective treatments - rituxan etc. And I guess that we are now about to start on this journey. I am trying to stay in the moment but can't help catastrophising - what if he doesn't respond to treatment, what if his FL transforms? Am I going to lose him? It feels too young for us to be going through this and I feel angry that we were robbed of carefree living in our early 40s. 

Life is hard, people! What is one to do? Keep busy, I guess, and just keep putting one foot in front of another. Keeping busy is hard though, because I have no head space to concentrate on anything......sorry for the emotional dump everybody. Don't really know how to end this......

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.

    I am Mike and I help out around our various Lymphoma groups. If you have been looking through the posts you will see that I was diagnosed way back in 1999 at 43 with another type of Incurable Low-grade non-Hodgkin lymphoma although my type is very rare, like your husband's Follicular Lymphoma it is very treatable.

    It took 14 years before I needed full on treatment but I am over 7.5 years out from my last treatment and doing great and that was with me being Stage 4a in late 2013.

    What do you do......? First take some great encouragement from the various posts you will see in the group..... when required FL is very treatable with many levels of treatment available and I 'talk' regularly with folks on here and on another Lymphoma support platform where folks have had first line FL treatment and they are years out living a normal life. 

    Keeping your mind busy can help and you may want to look at this link Top Tips for the day of your Chemotherapy as this will help you help your husband get ready for treatment.

    Our family have been on this road for over 23 years now with some very significant bumps on the road (see my story below) but we have always been completely open and honest....... this has resulted in the 'battle between the ears' not developing..... but being controlled and indeed empowered to deal with the journey.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

    You may also want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who run regular Support Platforms with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

    They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

    Always around to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you from the heart, Mike. What an absolute star of a human being you are for doing this and for sharing your story. I am feeling rather bad about leaving that post - it was a full-on emotional dump in a moment of crisis and can't be very encouraging for anyone looking for reassurance - which I'm sure we all are. I am in much better spirits today and here's why: 

    Within a few hours of that post, we had 1) spoken twice to our CNS, 2) had a reassuring phone assessment with one of the consultants and 3) had an ultrasound scan and biopsy. How awesome is the NHS! Everyone we met was very kind and professional - it was so nice to be reminded that we are not alone. And it felt good to be proactive. I think most of us iwill dentify that waiting is the often the hardest part of this journey. We are creatures of action. 

    So now we wait for a week or two to get the results and I am trying not to second guess what they might be. I know C's team will explain things and guide us through what happens next. In the meantime, we are going ahead with our holiday plans because....why not? There's no rush and it'll be much nicer waiting in the sun, discovering new places, than being at home in this drizzle. 

    Obviously yesterday was full of adrenalin and so we are just allowing ourselves to calm down by enjoying life as normal. I'm still going to have moments of panic and worry but I will hold on to the fact that these will pass and that there is hope. 

    Thanks again, Mike, your response really meant a lot and I'm going to check out those other websites. 

  • Hi again  and sorry for not getting back to you sooner but I have been out and about, it as been a busy morning........ and take that 'very simple statement' as an encouragement that life can actually return to a semblance of normality. following treatments..... but often with a few little changes in how things are seen and done..... we tend to review what is actually important in life.

    Don't feel bad about unpaking on here, this is exactly what the community is all about and everyone understands where you are coming from.

    Good to hear about the positive communications and the ultrasound scan and biopsy being done.... and yes the NHS is amazing.

    Definitely don't even try and second guess this.... based on my 23 years experience we can fail miserably at this and often resort to Dr Google and that is just a disaster.

    Park this as best as you can and get on with living - do some stuff that makes you happy..... we always went into the first up behind our house or took a short drive out to Loch Ness and walked the shores....... doing stuff like this is very therapeutic....... you can throw all the stress and anxiety in the world at this and it will make no difference as to what is found and what you are told........ but can actually make a massive difference to both your ability to then go into the treatment journey.

    If you do anything make sure you have a notebook prepped with your top questions for when you have his next appointment (Questions to ask your medical team about Lymphoma

    Always around to help out ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi

    I am just out of chemo having been on watch and wait for nearly 5 years...so I know where you are coming from believe me.  As Mike says FL treatments have a very good success rate..I am awaiting to start my 2 year maintenance plan after my PET scan on Monday.  All I can offer is take each day as calmly as you can. I went out everyday as much as possible for a walk as chemo affected my legs but Mike mentioned to me any kind of exercise would help with recovery and my legs are  tons better! Ive also checked out the sites that Mike put up and you will I'm sure find lots of support in both places. You are not alone on these journeys....let us know how you are both doing.

  • Thanks Glann, I really appreciate this. Keep safe.

  • To everybody reading this who is waiting; waiting for appointments, waiting to have scans, waiting for results - you are not alone! It is very, very hard. Husband will have a PET scan on Thursday - that will be after a two week wait, following on from two weeks for the biopsy results (which, no surprise, were positive). Then it'll be another week - or possibly two, before we can discuss the results with his clinical team. I'm not bashing the NHS but I hope the doctors understand that this waiting is torture. 

    All in all, we'll have clocked up over a month of waiting. That would be way too long to put life on hold, so we've come up with some coping mechanisms. We're doing pretty well at distraction - filling our free time with useful or pleasurable activities and keeping busy. The spring weather helps. We're being really kind to each other and to ourselves. When something like this happens which threatens the well-being of your soul-mate, it really brings out how you feel about them. Honestly, I sometimes wish I didn't love him so much, then I wouldn't feel so bad. 

    There are obviously moments when unwelcome thoughts just pop into one's mind - I find it really hard not to catastrophise - but I'm learning to spot when this happens and quickly think about something else. These thoughts are not useful; as Mike said, they're not going to change test results and neither do they help you prepare for anything. They just make you feel bad. I am naturally a pessimist and am realising that this is really not helpful right now.  

    The mornings are especially hard - that moment of waking when you remember again your reality. I have accepted that this is a form of depression, which seems a perfectly natural response to this situation. I've signed up for some therepy and I've taken Mike's advice and am opening up a bit to C, so we're talking to each other about how we feel. I thought the best thing to do was to show him a brave face, but it seems it's OK for him to know I am scared.

    I do realise that there are people on this forum in worse situations and I am so very sorry if my posts are insensitive. We have reasons to be hopeful. I write these posts when I am alone and feeling overwhelmed - it's helpful to write things down. It feels like a door has opened for us leading into new territory and I don't know if C will respond to the treatments, so, you know, I'm frightened. 

    And I am so thoroughly pi55ed off that this journey started for us in our early 40s........

    I plan to update this post when we know more, in case it's useful to others. On a positive note, people, please remember that he has had ten years of watch and wait, with no treatment at all, and he continues to feel 100% physically.

  • Hi again  I do appreciate the frustration of being diagnosed in your 40s...... I was the same but now coming up to 24 years on I am still living a great life and we are still planning our adventures for the years to come.

    As for the waiting, it is frustrating but consultant do appreciate the waiting is torture but they are at the mercy of 'the system'. Back in 2012 I was also diagnosed with Asbestosis.... my Respiratory Consultant is actually a very good family friend...... and even 'mates rates' I could not speed up my eventual diagnosis.... it still took just under the 2 months (62 days) wait between the date the hospital received my urgent referral for suspected cancer and the recommended date to aim to start of treatment...... although at the moment I don't need treatment........ so like my Lymphoma I am on Active Monitoring for both.

    It sounds like you are developing the ability to control the space between your ears...... this is important and it a skill that needs to be worked on and developed.

    When it comes to FL it does respond very well to the various treatments so be encouraged.

    My wife and I have a very open conversations when it comes to my various conditions, we have cried together a number of times but also laugh a lot.

    Let's look for answers soon ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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