Strad that is so true they should make the decisions on whether something feels right or not. I know we are supposed to know our own body but just sometimes reasurance is nice to get from the professionals. For me this time they have done so many tests n taken loads of blood samples they should have a fair idea of where im at with my lymphoma at this stage. So my next review should b interesting. Take care everyone n thku for all your support.
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Good luck with your next appointment @Ruth2. Let us know how it goes. I don’t know about anyone else but I always feel unsettled and more anxious when a hospital appointment is coming up, and I now accept that is how I’m going to feel, and so try and plan some treats in the days before.
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Strad. Yes indeed i will let you all know how it goes. Thku for your advice. I was going to treat myself with buying some dumb bells to improve the muscletone in my arms and help get the bruising cleared somewhat. B nice to have toned arms for the summer. Wonder would that b helpful. Any thoughts on specific light exercise. Maybe i should ask my haematologist first n save the exercise for after. Take care everyone. Xx
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Hi @Ruth2 I am a pilates girl.
I started lockdown with 2 tins of chopped tomatoes as weights as I use them in some of my pilates DVD’s which I do at home.
My son got me 1.5 kg proper weights for Christmas 2020, which I use and are certainly enough for me, I know I am a light weight !!!
I also find some of my pilates DVD’s using long elastic bands give an all over workout.
My muscle tone has improved but I still have my ‘Bingo wings’.
However I only started doing any exercise about 15 yrs ago and I am 72 yrs old.
All my DVD’s state to seek medical advice before starting any form of exercise.
Hi @Strad I still get anxious and unsettled before and during all medical appointments
and I was diagnosed 18 yrs ago, we are human.
Look after yourselves both of you and please keep posting what’s going on for you
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Kimmie thats what i was being told its just lymphoma n there will b lumps that appear n may not necessarly go down. But admittedly they gave me no bother until this time when i ended up in hospital with the one below my earlobe neck area. So if yours start to get larger n warm n tender to touch do go n see about them. You may like me have to get antibiotics to settle them. Take care. X
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I often get lumps and bumps and have them checked out all the time. You just never know do you. I hate it though. Makes me feel very out of control!
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Got on well yesterday at my review. Bloods back to normal before the infection. To go back in 4 mths n watch n wait til then. If anything changes im to communicate with them. So fingers crossed i will remain in watch n wait. Swelling well down n flatter now. Thku for your support.
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Oh @Ruth2 that is brilliant and I am so pleased for you.
Perhaps now you can relax a bit and do some things you enjoy, Covid permitting.
Please keep posting
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That’s great to hear @Ruth2. Fingers crossed everything stays at bay. I have my 4 monthly check in March and am hoping for the same. Take care x
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Really good news @Ruth2 . It’s great each time one of us gets a victory of some sort.
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Hello, I’m new here and really appreciate this ‘space’. I was interested in the dental lumps as I was diagnosed with Follicular Lymphoma and a parotid gland tumour (I thought pre-diagnosis that it was a salivary stone) in Jan 2020.
I had surgery to remove the tumour on 5th March 2020 (it was found to be changing from benign to malignant), 4 days before the first lockdown. I am so grateful I got treatment quickly then. I had various dental issues before (failed implant and recurring infections in my teeth) and had been going to my GP for 9 months complaining about swelling in my right lymph node on my neck, I kept being told it was my body fighting an infection.
Anyway I’m on watch and wait for the FL now and whilst I’ve worked in the medical world before (incl. hospice - training dr’s etc to break bad news to patients) - it’s very different being the patient. I used to think it would be good for people to be tested and told their genetic predispositions, now I’m not sure sure as I think it depends on peoples’ support structures/resilience/access to medical resources etc.
I must say I’m pretty positive overall I don’t think I’ll be going anywhere soon, but the routine blood tests etc do give me ‘worry days’ but other than that I try not to think about it/research online etc as I do believe the mind has a lot to do with your health. I hope that by the time I need treatment there will be better options out there and think the researchers and medical community are doing a wonderful job.
I will be trying to get back to ‘some sort of normal’ in March - at work a few days a week after my 4th jab. I don’t think my employer would like me working from home permanently.
Thank you all for your informative and inspiring posts - take care of yourselves.
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Hi @Livingto100 oh, I love your name on here, a great big welcome and what a time to have surgery.
I have a different blood cancer but I agree although I have been on watch and wait for 18 yrs and I still feel anxious before and during any medical (and dental) appointments or tests.
About 15 yrs ago I had multiple teeth out due to frequent infections in my mouth. I now have 2 dentures, but it was the best thing I have ever had done. The specialist dentist worked with my consultant and GP and I had antibiotics before, during and after.
You seem to know yourself well, I am impressed.
Do you have support from family and friends, I really look forward to hearing more about you.
Look after yourself and please keep posting
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Hi @Livingto100 and welcome to the forum. I have follicular lymphoma to and had my parotid gland removed followed by radiotherapy. That was five years ago and I’ve been on watch and wait since. Treatments are improving every day and I hope, like you, that when I need treatment they will be new and improved! I look forward to hearing more about you 
Hi @Erica and @Nichola75 thanks for your responses. Yes I have great support from friends and my new workplace (I started a new job the day I had a scan and realised I had something serious) - all change at once… Like many others I’ll be ‘returning’ to a workplace I’ve worked at for a while but hardly been at or met anyone ‘in real life’.
I must admit I was confused about my symptoms as it was confirmed by blood test that I was going through menopause at the same time and now that I’ve been on HRT for a while I can see it was mostly that causing the sweats/flushes. I am monitoring my vit D levels as my last test was 26 which is apparently low so I had some mega dose ones for a while, now I take 4 tablets a day - I hope that between that and HRT my bones will be okay, I don’t fancy the idea of any bone marrow work later on, that’s an experience I’d rather pass on if possible - though as a vegan/fruitarian/vegetarian since I was 12 I guess I haven’t had the calcium needed all the time…
I read some of the very courageous posts here and I am so grateful for where I am now. It’s good to know that you are all here to support each other with questions/help!
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Hello @Livingto100 and thank you for joining our Forum and I hope you feel the support already coming through to you. It sounds like you are managing this so well but please do let us know if you need particular support or guidance. We do have some webpages on Follicular Lymphoma here:Follicular lymphoma - what is it, symptoms and treatment | Blood Cancer UK and we would also be happy to support you whenever you need Blood cancer information and support by phone and email | Blood Cancer UK. Kind regards Gemma
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Hi @Livingto100
Thank you for posting. I’m sorry you have lymphoma, but glad to hear you are on watch and wait for now and managed that treatment just before lockdown. I hope you’re feeling comfortable and positive. And glad you have found your way here.
I really like your attitude. I was diagnosed with a different blood cancer in 2020 - Acute Myeloid Leukaemia. I’ve had all my main treatment and am feeling great now. But what I wanted to say was I love your chosen name for this site. Funnily, I often think and say to myself that I will be living to at least 100, despite this Acute Myeloid Leukaemia blip. I believe if you think along those lines, it can only have a positive effect. My grandmother made 94, and she smoked and drank herself silly, whereas, like you, I have been careful about my diet all my adult life (I’m also a vegan) and unlike my granny, I’m not three quarters whisky and cigarette ash! So I reckon I stand a chance of a healthy long life, and I remind my body we’re just a spring chicken at 52, all the time. : )
On a similar note, I also used hypnotherapy to reach a state of positivity as my treatment began (I had 4 months in hospital without visitors, for chemo and a stem cell transplant.) I feel it steadied my wobbling mental health and gave me a more positive outlook. I then used a hypnotherapy track specifically designed for stem cell transplant patients, where I visualized the donor cells agreeably settling into my bones without issue, and my healthy future self congratulating and reassuring my then self. I’m sure without these therapies, I’d be very worried right now about relapse, but they’ve helped me to move away from that and to believe in my new health status. Obviously, I’m not saying the mind can cure you of any serious condition - just that you can help yourself somewhat if you are positive. The mind and body are a team, and they want to be the winning team.
Anyway, nice to meet you here, and hope you’ll post again, and ask for any support if you need it.
To your good health.
Fullofbeans
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I am going to check where a parotid gland is as i still have small lumps in my mouth. They about pea sized.
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I had mine removed. They sit just in front of the ear. Hope that helps
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Nichola yours must have been different from the small round peashaped swellings i have as they are attached to the lining just above my jaw bone above the actual hinge of the bone if you know what i mean. I have a rough edged wisdom tooth at the side of one so thought it might have been caused by friction from it but when the ENT checked it was just the dentistry section that said my actual teeth were ok. So suppose i assume they r ok with the peasized swellings r else its not within their checks. They arnt sore so must b ok. Just shows that we are never totally sure in watch n wait. But i just going to chill for the 4 months.
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Gosh @Fullofbeans what a stunning hypnotherapy track that sounds, I am sure other Stem cell transplant patients will be interested in that.
I love the things I learn on here, thanks so much.
Look after yourself
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