Hi I'm having a very down day today. I have a constant pain on my left side under my ribcage and am due to have an 8 week check up by phone on Wednesday. Last time my consultant told me after aski what I needed to watch for, not to look and just live my life. I'm worried he won't listen and also that Im4not getting a blood test as it's over the phone. I've been really good and just carried but I can't talk to my family about my fears, they just go quiet or change the subject or say I'll be fine. I feel like I'm having a breakdown! I've been so good and just got on with things but tod, no idea why, I feel close to cracking. Sorry for the offload, I'm scared I guess. Happy Easter to all
Hi again Kimmie17, sorry to hear you are struggling and it is natural to be concerned.
The site can be random at times
Living with a blood cancer does get better as times goes on as you develop an understand what your body is saying and how to interpret it.
I have been on this read for 20 years with my type of NHL and your consultant is correct you need to try and live life as best as you can under the restrictions we have and just keep an eye out for significant changes and then call your team - they will listen. But do you want to go to hospital for blood tests at the moment?...... I think your consultant is actually doing you a favour.
You have joined our very supportive Follicular lymphoma Group. Posting in this group will open up your concerns to people who know exactly what you are going through at the moment.
Follow the link I've created then hit ‘start a discussion’ and you are ready to go.
You could then copy and paste the information from this first post into your new discussion or you can also join in with existing ‘discussions’ by clicking on 'reply’
I will keep an eye open for you.
Thanks for the reply, I don’t want to go to the hospital, I just worry if a blood test isn’t done the picture isn’t whole. I’m ok,just having a bad day!
If your team actually believed that there was a risk they would insist you come in for bloods - they have a good understanding as to how FL can develop and can balance the actual need for you to come in against the greater danger of developing the virus.
Are you following the 12 week guidance for blood cancer patients?
Did you receive the ‘at risk’ letter from the NHS?
The whole lockdown is a mind game and you do need to not overthink this but not that simple when we all have more time on our hands.
The FL group is very active and there is no better place to talk with others on the FL journey than in that group ((hugs)) from a safe distance.
Hi again, I have received a NHS letter and am following lockdown procedures. It’s not that I’m overthinking, I’ve kept really busy since my last hospital appointment in Feb and haven’t dwelled, its more I’ve woken up this morning feeling like I want to smash plates because the rare times I want to talk, my family don’t. Simply that, I feel low today, it will improve, I was only reaching out for understanding
Hi Kimmie 17
This is the place to explain how you are feeling! Unfortunately unless family and friends have had a cancer diagnosis themselves they don’t understand the mental turmoil. My husband, although understanding and supportive couldn’t understand my fears. I have now been on watch and wait for two years and it’s starting to get easier although every new pain sets me off again!! Initially I was paralysed with fear and the support I received from here was fantastic. Such wise advice from Mike and John and support from complete strangers who I know look upon as friends! They understand as they have been in the same position!
Hi again Kimmie17, now I have had some breakfast and Coffee I was looking back your posts and I was convinced that your post was in the New to Community the part of the site...... so my references to you posting in the FL group are rubbish - sorry for that.
Good to see Jane coming along to help out - high Jane
So coming onto the Community is much more supportive than smashing plates and cheaper as well.
It is hard to talk about something that others like family and friends don’t understand much about and I sometimes think that it’s their way of surviving this with you although we were very open about every aspect of my journey.
Have a good day and keep away from your good dishes ((hugs)) to everyone.
The blood test is hardly ever used to make a treatment decision.
I take it you are on watch and wait?
Your pain might be caused by something else and not the Lymphoma.
Thanks for that, I am now on watch and wait after 4 rituximab treatments.
I am quite newly diagnosed and recognise all of the fears that you have. I have had one 3 month check, I have not had any treatment at all. The next one will be over the phone and no blood test. This site and people have helped me understand and come to terms with my new normal life and am glad to be a part of that.
Since lockdown, my health seems to have improved a lot, breathlessness is almost next to none,I have had a couple of night drenches... but over all am pretty good. DId have a nasty case of cellulitis in my foot and was so close to being admitted to hospital For IV Antibiotics, have to thank my GP's for keeping me out, last place anybody wants to be right now.
I found it hard to talk to my children, grown up with , their own lives, but at the end of the day, they have the same fears and do, when they are ready, find it easier to talk about as time goes on.
Keep smiling through and stay safe.
Thank you for answering. I hate that you can relate because I wouldn’t want anyone to have cancer, but it helps to hear you have the same feelings.
take care too!
Hi, been a while since checking in, trying to keep busy during lockdown, living on my own has meant I have to try to busy myself everyday, online shopping so tempting and I look forward to the post arriving every day :-).
I actually feel very lucky now and almost feel like a fraud when telling people my condition as I am pretty healthy.....I lost my Nephew to Cancer 11 years ago and remember how ill he was during the short battle for his life.
I have learned to acknowledge it, but put the positive at the forefront of my mind. My life so far has not changed, I have to take things a little easier but that also comes with getting older! As long as I can run around after my granddaughter I am happy.
My daughter wanted to wrap me up in a bubble when the full horror of this virus came out, but my Son the opposite, was as if I was no different, I appreciated both their reactions, it is the way they both deal with the cancer in their own way.
I am overdue my 3 month check, have not heard from my hospital, but am not concerned.
I am planning on staying positive and healthy for a long time :-)
Hope you are too
Hi o so cool to hear someone in same position I’m Disabled with other illnesses, But have NHL Follicular B of my Aorta, I have pain few problems but nothing drastic having read others here I think I’m so far so lucky , your first same as me I have found , I live alone I am Shielded Got Severe Asthma , Got no Care in this time I am scared I went out on my scooter today first time since I started with virus 22/23 January o it was fantastic the wind in the trees The sound was fantastic scooter stopped I got stuck but lucky I remembered a button I could press it worked as driver stopped but said sorry can not help you can just Free wheel I then realised he knew nothing scooters for disabled have brakes , but I got home had a fantastic time it was so good , keep in touch you can send me private if you like I live alone in Disabled bungalow & I feel very lonely some days I’m very slow 2 hours to change bed then sit in shower , but I use Te Tree shower Gel due to perspiration all the time & to stop infection under my bust as it at start got red with sweat I tried a ty fungal ect but did not work , but now I have hand one & 1 lt shower one if I wake it like a river I will go have shower glad I live alone I can do this Best wishes a Hope you stay on watch wait my check up has been cancelled so not seen Dr for well over a year I’m not feeling perfect but it’s ok I have daughter who FaceTimes me daily to check I’m ok , best Wishes .
Sorry, I've only just caught with recent posts.
I m in remission and will be followed up for 5 years. I was due to have the first of these reviews in April, bue due to COVID was cancelled.
Like you, I was concerned at not having my regular blood tests at the hospital but held off contacting my CNS about it becasue I thought she would be too busy with COVID.
2 months later, last Thursday, my impatience got the better of me and I emailed my CNS to see if I might somehow have the blood tests that were due mid April.
She surprised me by saying she would send a District Nurse on Monday to my home to take my bloods. That happened and on Tuesday I had the results and 'review' by email the day after. This suits me perfectly, but I realise some patients might not be happy having a non face to face review.
This would maybe an option for you? its worth contacting your CNS to find out. I have heard of other patients getting their blood tests done at GP practices instead of hospital.
wishing you the best
Thanks Tina, wise words! I had a phone consultation last week and due to a few niggling symptoms he says I need to be seen in a few weeks! It still feels like a rollercoaster up and down and I don’t feel able to talk to family still. Im pleased you managed to get your bloods done, mine haven’t been done since February now but my consultant didn’t feel that was an issue ♀️Best wishes to you
I have read your blog and you have truly been through so much! I am at the beginning of the journey swapping between hopeful, despair, hysterical laughter and pure sadness on a daily basis. After reading everything you have been through I feel bad for even complaining but your blog is uplifting, moving and best of all peppered with laughter!Thank you, I hope to hear from you again.
Watch and Wait in itself conjures up images of negativity, it implies something will happen, which it might, but it might not if a person is lucky. I haven’t been on here much just because I get busy and forget to check, but it’s always worthwhile when I do. Keep well Maggie-18
Glad you enjoyed my blog. As well as keeping friends and family informed, I really think it helps normalise conversations about cancer.
Your rollercoaster of emotions is completely normal which only other cancer patients can truly understand, but please remember that FNHL is very treatable and you have every reason to remian hopeful. Being on watch and wait is a good sign, although it probably doesn't feel like it.
Have they given you a review appointment date? Its worth trying to nail down a date to give you peace of mind.
Did you have a biopsy and have they told you what stage/grade you are at?
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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