I’m not able to offer a lot of advice as such, but I have some understanding about how you might feel. I was getting blood tests done because I had infections or other odd things (probably heart related) and my lymphocyte count was obviously not normal and was going up. It took quite a while to get to a stage where I had proper immunophenotyping done, but at that point it was clear that the cells weren’t normal. However, you can feel very in limbo and the ‘cancer’ word is so loaded that all manner of thoughts come into your mind. I remember spending time in Waterstones totally freaking myself out reading all the medical books and I don’t recommend doing the same! There are so many nuances to the diagnosis of a ‘blood cancer’ and it takes time to get different types of test done, so I would take each appointment/chunk of information as it comes. However, I would definitely keep asking questions of medical people, but not read too much until you have something more concrete to go on. I still have lots of questions as mine is a rare chronic leukaemia/lymphoma (I was ‘diagnosed’ as having a blood cancer when I was 45) , but one thing I did find helpful - after feeling totally overwhelmed one day - was to talk briefly to a specialist nurse, rather than the consultant, who is a nice person, but totally on another level intellectually. I hope that you get some clarity soon and perhaps find something extra to keep yourself busy in the meantime, take care x
Many others have added wise words, but I would echo not Googling stuff and worrying until you have a full diagnosis. I was diagnosed with CLL 7 years ago and don’t give it a second thought really - I have had no treatment and, until Covid and having to shield, it hasn’t affected my life whatsoever. I ignore the bruises, pain and fatigue - staying busy and getting on with my life is my personal medicine! My sister has a grade 3 brain tumour and that puts things into perspective, she’s having daily radiotherapy and it will only prolong her life by months, whereas for many types of chronic leukaemia, you’re most likely to die WITH, rather than FROM them.
Try to put it to the back of your mind until you know the facts and save your energy for enjoying life!
Thank you so much for your kind words, it means a lot. I’m still no further with a diagnosis. It’s been a week today since I got the phone call to tell me that ‘I have a leukaemia’ and someone will be in touch to discuss. I’m leaving google behind and just checking in on this site as it’s been a great source of help. Thanks again x
This part is so hard @Sassy12345! Sometimes having a break from google is the best thing. I really hope you hear from your team soon. Yes, use us as much as you need. That’s what the forum is for - such a comfort to have it. Take care X
Hi Sassy. This is a great place to seek help and reassurance. The people on here are lovely. I was diagnosed with an incurable cancer out of the blue and it’s taken me 18 months to get my head round it and to stop panicking (I still do occasionally!). My haematologist makes me feel very uncomfortable and if I ask questions in the past has said things like ‘there’s people with worse cancers than you’ despite that I have been cared for and treated very well. Try not to go to Dr Google or unlicensed forums, here you will get the information you need without scaremongering. I am on watch and wait for now, which is hard but you do adapt to. Keep in touch and take care. Lots of love and best wishes x
Dear Sassy 12345, it cannot be long now and you will get more information. I was blessed with a very quick diagnosis. I was taken into hospital with suspected appendicitis and blood tests showed the issue was leukaemia. A motorbike took my blood tests up to a London Hospital and I got results eight hours later. I did not know how unusual this was at the time but am very grateful. What I would suggest to you is that once you have more detailed information to ask the hospital if they have any literature for you. I was given the McMillan booklet on CML and it was very helpful. I rang them and they sent me several copies for my children too. You will not take it all in at first but it is so helpful to have all the strange language explained.
Hi @GrandmaJo, yes, you really were lucky to get such a quick diagnosis, but also such a shock as well.
Good advice here to @Sassy12345. Blood Cancer UK also have a lot of information on their website.
How are you doing?
Thank you so much for your reply, I am still waiting for an appointment with haematology oncology. I had the phone call on the 4th May and I’m still waiting. My anxiety has been quite bad and since having my first covid vaccine last week I’ve now got swollen lymph nodes in my neck and groin, not sure if this is due to my condition or as a result of the vaccine. I’m going to chase up with my GP this week. Thanks again for your support and replies, it is very much appreciated.
Hi @Sassy12345, sorry to hear that you are still awaiting the appointment with your haematology oncology.
As you say about contacting your GP, perhaps a GP appointment is in order to check out your lymph nodes and then you could also ask about your haematology oncology appointment at the same time.
Please let us know how you get on and the waiting is always the worst, take care and look after yourself, we are always here to support you.
Hi @Sassy12345 I agree with lots that others have already posted - making lists of symptoms/questions/thoughts, not googling, not dwelling on the worst etc
I also found that the waiting is definitely the worst - the endless time allows nasty thoughts to creep into our heads.
I really worked hard on acknowledging the bad thoughts and fears when (sometimes often!) they came into my head - but then quickly moving on to the more positive thoughts like: “the medical teams know what they are doing, I’m not the first person to get this disease, millions have other have survived this why not me” etc etc
So try to stay positive and gently push the negative moments away when they come (they do for all of us) - and replace them with happy thoughts.
Good luck, stay strong.
Hi Nichola, thank you for asking, very kind of you. Well, long story short, I was officially diagnosed with non Hodgkin’s lymphoma - diffuse large B cell. I’m on chemo now and will have my 3rd cycle of treatment on the 13/8. I’ve got 6 in total.
It’s all been a complete whirlwind to be honest and as I never felt unwell it was a real shock!
I’m plodding on, taking one day at a time and remaining positive.
Hi @Sassy12345 it certainly has been a complete whirlwind since we heard from you last, I expect you are still in shock
Yes, it must be weird as you have never felt unwell to be on this whirlwind of treatments, emotions, thoughts and also practicalities, you must be drained.
Yes, keep plodding on, taking one day at a time and remaining positive, that sounds as if that is quite enough.
A couple of other thoughts look after yourself, spoil yourself and keep posting.
Hi @Sassy12345. It’s really lovely to hear from you. So much has happened and a whirlwind sounds like a perfect description.
How have you been since treatment started?
We all have to carry on don’t we. I love the term ‘plodding on’. Lots of plodding and we get there in the end.
I’m ok - away this week at a caravan. Keeping myself safe whilst trying to make sure the girls don’t miss out on anything!
Please take good care of yourself and keep us updated when you feel able to.
In the meantime I’m sending extra special wishes X
I think you describe it very well @Sassy12345 , it comes completely out of the blue but you seem in a good place mentally. It can seem like a plod at times but keep your eye on the prize of what you’ll do when you’ve finished your treatment
Glad you managed to get away and relax @Nichola75 , you deserve it.
Apologies for not replying sooner, thank you for checking in it means such a lot. One thing I’ve found from this awful situation is that the amount of lovely support that is out there, it makes a hard situation so much easier so thank you to all of you xx
I’ve now had my 3rd cycle, 3 more to go. To be honest, it’s not been as bad as I thought it would be. Or maybe it’s a bit like childbirth….you forget how bad it was?!!! Actually I wouldn’t know that as I’ve not got kids but maybe it’s true??
I’ve managed to stay at work (I work from home which has been a godsend) and have a couple of meet ups with friends for drinks.
Anxiety is now kicking in as I’m now waiting for a PET scan to see how things are going. The swellings I had in my groin and jaw have gone (or not visible/can’t feel them by touch) so that’s promising but you can’t help the negative thoughts creep in.
Even if I reach remission how do you cope with having the thought of relapse hanging over you?
I’m generally a positive person but it is hard and I still can’t believe this is happening, I still can’t tell anyone (apart from a few friends and my Dad) I have cancer ….and you have those ‘why me’ moments when you see all your friends who are the same age living healthy lives. I’ve never abused my body, vegetarian for 30+ years blah blah blah……I guess you can appreciate where I’m coming from.
Anyway, onwards and upwards, got to keep plodding on!
Sorry to ramble on. Hope you are all well and enjoying the summer months.
Hi @Sassy12345, yes, I bet working from home has been a godsend for you, but it also gives you more isolated time with your head.
Me and my head are often not best friends, my head is like a washing machine with fears, thoughts and feelings going round and round.
You ask how we cope with the thought of relapse hanging over our heads. I don’t know, I think it improves over a long time and I personally have learnt to live more in the day, who knows what the future will be for anybody.
However 17 yrs on I still get anxious before, during and after medical appointments.
Here is a really good place to ramble, I often do, I kinda empty my thoughts and feelings on here.
Because you haven’t told many people you might need the forum even more.
Take care , stay safe and keep posting you are doing brilliantly.
Hi @Sassy12345. So much of what you said resonates with me! I quite often have moments of ‘why me’. I think we all probably do.
Scanxiety is just the worst. Like you said, you have signs that it’s working but you never really know until you get those results. The amount of waiting involved is so hard isn’t it!
How do you cope with this hanging over you? What a question! This is the part I find the hardest when being on active monitoring. Some days I’m better at coping with it than others. All you can do is take a day at a time.
Even us positive people have bad days with this - we can’t be positive all off the time and it’s ok to have days like those.
Please let us know how you get on with your results. Sending lots of love X
I’ve just read your posts, and I’m so sorry you are going through all this.
I was diagnosed with AML last summer, and like you, I was 50 at the time, and I thought I was fit and healthy. A diagnosis like this leaves you reeling. As does the treatment and subsequent changes to your life.
One thing you said really resonates with me: How do you cope with the fear of relapse? I was told I had (I don’t anymore!) a gene that made relapse more likely. I’ve actually had a stem cell transplant now, but that phrase haunted me initially. I remember curling up in my hospital bed, sobbing at the thought of relapse forever haunting me and ruining what life I have left. I was convinced I couldn’t live with this thought; that I would be paralysed forevermore by fear.
My strategy has been:
Read lots of survival stories. At the time, I found a large number on the Leukaemia Care website. Those stories were so encouraging, particularly the ones about my own type of leukaemia. I’ve read them several times, and will contribute myself when I have a bit more post-cancer time under my belt.
I used self-hypnosis to tell my sub-conscious that I strongly believe in my good health, and that I feel positive, energised, healthy and happy. I listened to the track once or twice per day, and I can’t stress what a huge impact it had on my mood and attitude. It’s not for everyone, but if you’re interested, I can direct you to a free track on YouTube.
I rationalised that 1 in every 2 people will get cancer, so my chances of getting cancer again were about the same as any other person getting cancer. Other people don’t worry about cancer because they don’t believe they will get it. We now know different, though - we’ve been stripped of the protective self-myth that we are immune. But our chances of a relapse are probably about the same as their chances of getting a cancer. They don’t worry - so perhaps we should go about our lives strongly believing we are cured, and not worrying about it.
I now use that sort of positive language with myself: I am cured; I am better; cancer is the past; I am in perfect health (well, apart from shingles, ha ha.) The language of our internal monologue has a big effect on what we believe and on our health. Thus Cognitive Behavioural Therapy and hypnosis as treatments for all sorts of health issues. It’s very much possible to talk yourself into a happy attitude.
I made a list of all the positives that came out of me getting cancer: My relationships are stronger than ever; I appreciate every moment now; I’ve given up the slightly too many glasses of wine I used to have; my health will forever be monitored closely, so that any problems are found quickly; my white hair has grown back brown again (!)- etc. I think I found about 30 positives, which is staggering really. So would I actually change the experience? (Of course I would, ha ha.)
And despite the huge fear I had of relapse, I can honestly say 6 months post-transplant, I don’t think about it much now. I do try to keep myself busy, and I am extremely lucky in that I feel so very well (apart from these itchy little shingles blighters.) So hopefully, once you’ve finished your treatment, you will feel better enough that you are naturally inclined to believe in your own health again. And I hope some of these other tips are helpful too.
Very best of luck with the rest of the chemo, Sassy. I really feel for you - but you will soon have this further behind you too.
despite that I have been cared for and treated very well. Try not to go to Dr Google or unlicensed forums, here you will get the information you need without scaremongering. I am on watch and wait for now, which is hard but you do adapt to. Keep in touch and take care. Lots of love and best wishes x