I have been regularly reading the posts on this site for the past 3 weeks since my diagnosis. It has been a great resource and it’s about time I took the plunge and joined the discussion.
I am a 40yr old male currently diagnosed with low grade indolent MALT lymphoma. I went for the routine removal of a salivary cyst and the tests came back positive for lymphoma. It has been an incredibly rough period of time since I heard the dreaded words ‘you’ve got cancer and it’s not considered curable’. I still sometimes feel like it’s a bad dream that I will simply wake up from.
I have only just started to recover from the breakup of my marriage and have been running, cycling and swimming like a maniac this year. I was in a pretty deep depression for a long period prior to this and now it feels like everything has been reset and I’m back to square one.
I have seen the Haematologist once and she told me I’d be on ‘watch and wait’ until things started to go badly wrong. I’ve had a full body CT scan but don’t have the results yet. Best case scenario is that I’m Stage 1 or 2 and can sit on watch and wait for the next few years. Worst case I suppose is that it has spread everywhere and is impacting my vital organs.
One thing I wanted to ask everyone is this:
Since my diagnosis I’ve lost count of the number of lumps and bumps I’ve managed to find all over my body. I’ve become almost obsessive feeling around my neck, arms, groin for signs of cancer. Previously I wouldn’t have given them a second thought but now I can jump straight to a doomsday scenario at the drop of a hat. How do you control the fear and obsession?
I want to be positive but struggle to wrap my head around the whole blood cancer diagnosis.
Hopefully your haemotologist also told you
- it’s incurable (as indolent type) but very treatable. As it’s slow growing (indolent) you are likely to have periods of watch &wait/remission then periods of treatment to put it back in its box for a while
- staging of lymphoma is very different to and has different connotations to staging of solid cancers (eg breast cancer) and essentially describes where it is found. Stage 4 lymphoma is definitely treatable
(I too have stage 4 indolent lymphoma , 2 years in remission since treatment).
Hope that helps a bit.
Thanks for the reply, it does help.
I hope your remission lasts for a long, long time before you need to put it back in it’s box again.
I’m so sorry you’ve had a lymphoma diagnosis and such a frightening time - but it’s fantastic you’ve found us here and have taken the plunge to post. Welcome.
I can really empathise with your fear. I was diagnosed with acute myeloid leukaemia, and at first the fear would completely take over my mind and drown me. I really needed something for my mind take hold of and run with, rather than the fear.
I found some brilliant guided meditations/self hypnosis tracks on YouTube, about picturing your body in perfect health, and your immune system working etc. Some included visualising yourself in the future, with the health that you desire, and positive affirmations to change your mind set.
I listened to my favourite twice a day, until I felt positive about my future health. It didn’t take long. And I have to say, it was a brilliant crutch to keep me calm, positive, determined and sure of myself. I would have gone mad without it.
It’s not for everyone, but it’s my top tip.
Hope that helps. And keep talking to us here if that helps too.
Warm wishes to you. X
Hi @lmcclell, a very warm welcome to the forum, and thank you for taking the time to share your experiences. I’m so sorry to hear of what you’ve been through and it’s normal to be finding your diagnosis difficult- you’re certainly not alone in this. If you’d like to talk things through or need a bit of support, you’d be very welcome to call our Support Team on 0808 2080 888, and we’d be happy to support you however we can.
I’m sure forum members will continue to share what’s helped them. I thought I’d share some information from our website- Blood cancer: mind and emotions | Blood Cancer UK. This goes through ways to look after yourself and get emotional support, just in case it’s useful for you.
May I ask if you’ve been given a contact for a Clinical Nurse Specialist that you may be able to approach with your concerns and anxieties? Or indeed whether you’ve sought support from your GP? They may be able to talk you through things such as what to look out for, and local support services. Some areas have Maggie’s centres, which provide free cancer support ( Maggie’s – everyone’s home of cancer care (maggies.org)). I wonder if there’s a local Macmillan centre where you are, too ( Local Dashboard Choose Location - Macmillan Cancer - Macmillan Cancer Support).
Please don’t hesitate to reach out to us if we can support you at all, and do take care of yourself.
I was diagnosed with stage 4 indolent lymphoma in jan 2020. I was and still am on watch and wait (nearly 3 years now). It does take a while to get your head around a cancer diagnosis with no treatment plan as yet but now i look at the lymphoma as more of a chronic illness like asthma or diabetes and if i ever need treatment then it will start. This forum has been very good and i have found exercise good for my mental health.
Hi @lmcclell a great big welcome to our forum and thank you for ‘taking the plunge’ it is not easy.
You must be in complete shock I know I was when I was diagnosed with another blood cancer nearly 19 years ago. I came straight home and wrote my will and funeral music.
I have been on watch and wait (active monitoring) for all that time and I am actually fitter today than I have ever been. and life is good today.
I was diagnosed, like you, near the festive season and that year I just felt in a surreal bubble with the world celebrating around me. I could see the words leukaemia and cancer with zig zags around them.
I was also left with being in limbo over the festive period.
Yes, getting your head round ‘treatable but not curable’ takes a very long time for us and our families and friends.
It sounds as if you have had a really rough time of it this year, I have a (non medical) theory that once we have had one trauma then our emotions and thoughts are on high alert and a further trauma really activates them again immediately.
It sounds as if you have really been trying to keep fit though.
Oh, yes, I know the feeling for lumps and bumps and panicking, but write down everything and then you can get them checked out at your next appointment, plus all the questions that you would like to ask so you cover everything.
To help with fears and obsessions Blood Cancer UK have Blood cancer: mind and emotions | Blood Cancer UK that might help.
Anyone in your medical team, local Macmillan or Maggies Centres might have handy hints too.
I would say just give yourself time, yes, diversionary fitness might help and be very kind to yourself, your feelings sound very natural to me. Oh and keep posting you are part of our forum family now.
Good morning @lmcclell .
I think the way you are feeling is completely normal. When I was diagnosed 5 years (follicular lymphoma - age 41) ago it was a complete shock like yourself. I had a whirlwind of emotions which changed every hour. I became obsessed with Google and prodding for lumps at every opportunity. This forum was a life saver.
You are still so early in your journey and still have to wait for your results - often the waiting is the most difficult and we can all relate to that.
All I can say is that you just need to give yourself a break. There is no right or wrong way and each journey is individual.
Five years on and things have got easier to manage (I never thought I’d say that) . It took a lot of work. I learnt to be a bit kinder to myself, braved counselling and made some positive changes. I think we are all a work in progress and I still have difficult days. However, I’ve been lucky to have great friends and family and a good medical team. I hope you have to?
The support line is just wonderful if you want to talk things through. I think you were very brave posting on here. I wish I’d done so earlier in my journey as I definitely felt less alone.
When do you get your results?
Please take care and keep posting. We are all here for you.
Good morning everyone!
Thanks for the replies and for the supportive messages. It’s really very much appreciated, and something that I needed. Just knowing that people have gone through similar ordeals and maintained a positive outlook is reassuring.
My aim is to see this as a chronic condition that I can manage. If I need help with that management then I will cross that bridge when it comes. I went for a long run in the icy conditions (I’m in Edinburgh and it was -5!!!) last night and it did my brain the world of good.
I spoke to my Mum last night but couldn’t bring myself to tell her. I’m thinking it’s best done face to face, and possibly post-Christmas. I want to enjoy the two week break without everyone worrying about me and potentially being awkward.
Anyway, thanks again - I will keep in touch and update when my results are in.
I think you are right to tell your Mum in person. I did the same with my three children at Christmas when I was diagnosed three days before Christmas.I was obviously poorly on chemo and could not have concealed it until later.
My tip would be to go prepared with a booklet explaining your condition I got the MacMillan booklet. They could then get a comprehensive explanation and most of their questions were quickly answered. They are so well written and better than going to ‘Doctor Google’ online.
The best of luck and do enjoy your family Christmas. Mum will be a great support I feel sure.
That diagnosis, however delivered, is a difficult time. Following on from a marriage breakup must have made it even more so. Well done for sharing and contributing. I have a different blood cancer. I do find Tai Chi and Qi Gong excellent - not just for the exercise so see if there is a group near you. Qi Gong especially seems to have health benefits but part of the routine is to ‘leave your troubles at the door’ and indeed when new and you are learning the moves that concentration seems to help you do so. We also use some lovely slow music, not all Chinese and of course meeting new people is good. You can choose whether to keep your diagnosis to yourself. You don’t need special equipment so once familiar with it can do things at home or use a video to prompt. In the summer it is lovely to do it outside. I never thought my breathing was bad but within a few weeks I felt subtle things like breathing improved. In the 12 years I have been on watch and wait I have come to believe it is a better option than those who get catapulted into a crisis but I panicked when the diagnosis was new. This forum is so good.
Well it’s not really an obsession as once you become aware of the significance of the lymph nodes you will start checking them but obviously before you wouldn’t have thought about it.You can’t always detect them yourself anyhow.I detected some myself but there were loads of others that an ultrasound scan picked up.All of mine,so far, have been reactive to infection rather than having Mycosis Fungoides actually in them.I have read about MALT Lymphoma and as I understand it it’s a B Cell Lymphoma and doesn’t often spread beyond the initial site.I am a bit of an omnivore for information so I’ll be reading about the type of Lymphoma I have but another type is mentioned and off I go down that road!Think about 3 years ago I’d heard about Lymphoma, Leukemia and Myeloma but didn’t know anything about them except that they weren’t something you wanted to have!
I read your post, and just wanted to give you a hug. I have another blood cancer (WM) which is a rare form of Non Hodkins Lymphoma. Diagnosed in July 2020. I would have been on watch and wait, but my throat was dangerously swollen. So, I had 8 months of chemo and Radiotherapy.
Your situation now, is how I have felt since the summer. My showers take me an extra 20 minutes, because I am feeling for lumps and bumps. I did actually get quite depressed with it all. - I am pretty certain I have found one. It’s only small, but I have noted it down for when I see my Consultant in February. I have just become so paranoid with it all, and it is a very scary time.
I found this forum by chance. I did take the plunge a few months back to write a post. I did mean to keep on coming back and take a much bigger part in it. Because it is important to let off steam and not bottle all those mixed emotions up. Which I am very guilty of. Not just because of this, but other events throughout my life. Counselling never worked for me. But this forum is fantastic. So many lovely people, all bought together because of this horrible condition we all share one way or another.
It is hard to cope with the thought you / I / we have cancer. There I have said it. I never think my WM like that. I think I can cope better thinking it’s just a blood disorder. That I have to live with for the rest of my life.
I haven’t thought much about ringing up the Haemo nurses to chat about my feelings. But have actually written to my Consultant and he has rang me back for a chat. That has helped a lot. More I think about reasurance. This is normal to be feeling this way.
I envy you being so sporty. I wish I had half of your energy! I blame the chemo. I am trying hard to get my level of fitness back. But I am so very tired all the time. But I have an 8 month old puppy. I take her out for a walk every day. She is a very sociable dog. Loves meeting new people, and so we can’t pass anyone by and not stop to say hello. I think she has helped me get through the tough days. As I am sure your jogging does for you.
I want to thank you for writing your post. You have bought me back into the forum. I need this place. I had forgotten just how helpful it is. All of the lovely responses you have had on this thread, actually bought tears to my eyes. I know I am a soppy whatsit! LOL!
Hi @Imcclell I have been thinking about you over the festive season and I wondered what it has been like for you and I wondered if you felt that it was appropriate to tell your mum yet.
Have you got out for any runs recently, I have been for some stunning walks.
Yes, please keep in touch, we are here for you.
Be very kind to yourself
Hello @erica and everyone else who kindly replied to my post. I’ve been meaning to write an update and your nessage has given me the kick to do it!
First of all I’d like to reiterate my gratitude for the messages and advice the community on here have provided. It has been a wonderful resource and a source of great comfort over the weeks since my diagnosis.
My consultant haematologist called me on the 23rd December to confirm the results of my CT scan. At this stage they cant see any more growths in my body, including any residual growths around the original salivary gland that was excised. They did mention that my tear ducts are asymmetrical but didnt seem overly concerned at this stage. I was on a busy bus so probably didnt ask some pertinent questions but, on the whole, I’m taking this as a positive for now.
Based on the results, and my current lack of symptoms, I will be on Watch and Wait until it rears its head again. I will need to follow up with an email to confirm some of the things I forgot to ask. Any suggestions would be welcome but my own list is below:
- has my lymphoma been Staged?
- are there any activities I should avoid?
- are there any activities I should do more of?
- who do I contact if something dramatic changes?
I decided against telling my family over Christmas as I knew it would cause huge distress. I will tell them at some point prior to my next check up in March. It gives me more time to come to terms with the diagnosis myself before burdening them woth it.
I suppose that, on the whole, it was a positive result for me at this stage. I wish I could stay on W&W forever but I’m realistic enough to know that I will need treatment at some point. I’m going to concentrate on keeping healthy otherwise and being ready for whatever comes.
Thanks again for your support, and apologies for the delay in updating this post. I’ll stay in regular touch.
Wishing you all a happy New Year.
Hi @lmcclell I am so glad that you received a call on the 23rd Dec, it saves you stuck in limbo worrying over Christmas.
From a fellow ‘watcher and waiter’ I agree it is good news, long may we stay on watch and wait.
I can understand you not wanting to tell your family during the festive season and it will give you time to come to terms with it to wait till the New Year.
You have good questions to ask.
- Perhaps ask about diet and supplements
- Perhaps ask what should I be looking out for.
- Perhaps ask is there anything else I can do so we can work together
Personally I just believe in a balanced healthy diet (with the odd treats), fresh air and reasonable exercise
Yes, you make sure that you stay in regular contact, you are part of our forum family now.