Have been told I have terminal non-Hodgkin Lymphoma. I know this is an awful thing to ask, but is anyone else going through the same traumatic time, and how are they coping with the diagnosis.
Oh @Sandy2 you must be in complete shock and I cannot imagine what you are going through.
If you would like to talk to someone the Blood Cancer UK support line is there for you and we, your forum family are also here for you.
Do you have any support from family and friends?
It would be useful to know more about you and your diagnosis and what your medical people have said to you and offered you?
Look after yourself and be kind to yourself
Hi @Sandy2. That news must have been really difficult to hear. Everybody on here will understand those thoughts and feelings at the initial stages of diagnosis. It’s really scary and I know I felt as if my whole life had been turned upside down and I had no idea what to do.
I’m terms of coping, it is different for everyone of us. Talking can help. Have you got a good support system around you? Counselling also helped me and still does 5 years on. I liked to know everything so had lists of questions to ask at my appointments. This helped me to feel a little more in control.
There are so many different stages and grades. I was wondering what yours was? I’m assuming your team has gone through all of this with you?
I realise I’ve asked lots of questions so please don’t feel you have to answer them, only if and when you feel able to.
The blood cancer support line is invaluable and may be a good place to start in terms of talking things through.
We are always here for you and you’ll never be alone
Thanks for your prompt replies, it’s nice to know somebody is hearing me. I had 6 rounds of CHOPS last year and a round of radiotherapy as the chemo hadn’t worked it’s magic.
We were given the news in January this year after the Pet-scan I had still twinkled at us through the computer screen. My husband and I were told I would only have a few months and that palliative care was all I could be given. We were very shocked to say the least - in my panic I went home, bagged up all my spring/summer clothes and took them to the charity shop saying I didn’t want to see them hanging in the wardrobe if I wasn’t going to wear them… (now that it’s warmer I have nothing to wear), got to laugh really ! One of the hardest things for me is that friends are finding it hard to be normal around me, and a few have not contacted me since they heard the news, I’m sure they just don’t know what to say so say nothing at all. I feel as though I’m living on another planet and in a bit of a lonely place (probably sound pathetic I know) My husband has been on the internet looking for trials, miracle cures, etc. I have had second opinion from leading cancer hospital - unfortunately they agree with the original diagnosis (Peripharal T-Cell Lymphoma (nos)) and gave the same outcome, although did say that they knew of a case that saw the year out. There is a trial in Oxford (your trial list help us find it) I might fit the criteria for, but have loads of tests to go through before acceptance, the trial doctor is away on holiday so that’s on hold at the moment too. I guess I feel that each day left to me is dripping into this black hole and nobody is helping me to turn off the tap… So much of life is depending on other people and I feel totally out of control of everything. Having read the above you must think I’m a right moaner but am generally a really cheerful person. I have a friend I met on line with the same blood problem as me, luckily CHOPS worked for her and she is in remission. But at least she understands the bags of rubbish we carry around in our heads. There must me hundreds of us out there with a terminal condition, I’d just like to know how they are coping with the uncertainty of everything. Could it be made into a new topic (a bit on the miserable side I know).
Hi @Sandy2 , thank you so much for joining the forum and sharing your experiences. I’m so sorry to hear about your diagnosis, though I’m glad that you have found the support of our lovely forum members helpful so far.
Please know you can always contact us if you want to talk anything through with one of our support team: Blood cancer information and support by phone and email | Blood Cancer UK. We’re here to help with any question you might have, but also just to talk, even if you don’t really know what you want to talk about or where to start, that’s always ok too.
If it’s helpful, we also have a Clinical Trials Support Team who can help you to think about clinical trials and whether there is anything available you might be eligible for - have a think about it, and if you want to book an appointment, you can do so here: Blood Cancer UK clinical trial referral | Blood Cancer UK.
I know there’s so much to digest so take things at your own pace, but know the team at Blood Cancer UK and our amazing forum members are here as and when you might need us.
Take care, Kate
HI @Sandy2 you are certainly not pathetic or a bit of a moaner and that is why we have our forum so as people can say how it really is for them, empty out those bags of rubbish, when sometimes others cannot understand or take our thoughts and feelings.
I cannot imagine what you and your family and friends are going through.
Yes, nobody knows what to do or say and everyone deals in their own ways.
@KateBloodCancerUK has given you some useful advice.
I had to laugh when you said that you bagged up all your spring/summer clothes and taken them to the charity shop. That is just the sort of thing I would have done.
I also felt as if I was in a bubble with the world going on around me for quite a while and yes, it sure is a very lonely, isolated, out of control, awaiting on others place to be.
Be kind to yourselves, spoil yourselves and try and do lovely things.
Please keep posting I want to know what is in those bags of rubbish !!!
I’m not sure what I can say that would make it better @Sandy2 when things are so awful for you. I hope you find some strength from somewhere (and some summer clothes!). We’ve had more than one terminal diagnosis in my family in recent times so I’ve only experienced it second hand but that was bad enough. Do keep in tough with us and let us know how you are getting on.
Hi @Sandy2 I have been thinking about you and just wondered how you are doing.
Would you like me to start a new topic on here for you for people who have received a terminal diagnosis?
I wondered how you are finding your friends are now, I think it is so true that people just do not know how to be or what to say, so the easy way out is to say nothing.
It must be a very lonely place to be for you though.
You must also feel so powerless over everything.
How are you feeling and thinking now?
We and the Blood Cancer UK support line are there for you.
Be kind to yourselves
Hi @Erica. Thank you for introducing this topic of what it feels like to be given a terminal diagnosis. I have had blood cancer (myelofibrosis) for what will be thirty years this November. In 2018 I was told that it is now terminal. I am doing okay, all things considered, but one of the hardest things to cope with are unhelpful comments and misunderstanding. I find it helpful to express myself in poetry form and feeling frustrated, I wrote this poem last week! Hope others can identify with it.
TO MY FRIENDS
I’ve told you before
I have a rare illness,
A blood cancer
I know it’s upsetting
And you want to fix me
But I’d rather help you
To face the reality.
Please don’t say
I’m looking well,
I’d prefer you to listen
To the story I tell.
It cannot be treated,
It’s a terminal disease
So please don’t offer me
Your own remedies.
Please try to accept
The situation I am in
And don’t just suggest
I take extra vitamins.
My bone marrow’s failing
And it can’t be cured,
The blood cells I produce
Are getting fewer.
That go unseen,
Risk of infection
And increasing pain.
And daily fatigue.
I rely on regular
Donations of blood
But even that
My iron level is rising,
It’s causing damage
And my iron overload
Is hard to manage.
Sometimes my emotions
Are difficult to explain
And I find it wearing
Living with pain.
I’ll be there for you
As much as I can
But it would help me
To know you understand.
Hi @Willow that is a beautiful expression of how you are feeling and your experience, funny enough I was just thinking before you posted that Thursdays soon come round then its the Friday Jukebox and how i’ve got to know you through song. I can relate to what you say about just" listen to what I am saying" and "dont tell me I look well "and offer remedies,its very hard because other people dont get it and can’t because its not their experience .I was told this by my Neurologist. Its natural to want to "fix"things as human beings I think thats what we are primed do,I won’t go on .I was wondering if there was any update on the chelaton therapy if thats ok to ask here ?@Willow thank you so much for posting and I hope your words will inspire others ,keep on telling your story warm wishes to you.
Hi @Bannanacake. Thank you for your kind words and understanding. It helps so much to find others who feel the same. Thanks for asking about the iron chelation. Would you believe it that after all this time I have been told that the Home Care Team cannot help me so my haematology nurse has kindly agreed to be trained as to how to do it, and then I will have to go to hospital for him to show me. I find it rather ironic that at one point I was expected to learn via an online tutorial and now they are saying a nurse has to be trained!! Will keep you posted. How I wish there was some way of sampling your banana cake - sounds yummy! Warm wishes. Willow X
Hi Erica. I am doing ok thanks, going through a positive phase. I have taken the bull by the horns and sort of invited myself into my old fold of friends. I used to play golf so decided to sit myself in the golf club when the “girls” came back in from the course. Soon enough I had a circle of old faces sitting around me, although the “C” word wasn’t mentioned I think most decided that talking to me wasn’t so awful for them after all. I felt as though a barrier had been broken down and I shall continue to visit on a Thursday. I’d like to say thanks for the support of like minded people since posting on this forum, I knew I couldn’t be the only one finding life a bit on the lonely side. I think if there was a “Topic” page covering this subject others might find it comforting to know they aren’t alone, and we could give each other strength when we need it most… Many thanks
Thanks for your thoughts, it heartens me to know that there are survivors out there, but you must have had an horrendous few years living with your diagnosis, here’s hoping you have more good years ahead of you, and that others will understand that life can be difficult in many ways living with blood cancer. Keep writing x
Oh @Willow that is a break through for you with the Iron chelation treatment,yes indeed after all this time and I do remember you were expected to “DIY” lets hope its not too long to wait so i’ll look forward to an update,I bet you will too!Yes lol re😀 the bannanacake,that would be good,its gluten free and light, from an old favourite recipe .I always end up making it to use up over ripe bannanas although I really like carrot cake .
Oh @Willow there are tears running down my face here, I so admire how you can put into words exactly how I think and feel in so many ways.
I cannot believe that you are still trying to sort out your iron chelation, what a palaver.
At least your haematology nurse is showing some common sense.
All I can say is a great big thank you for helping so many of us on our forum and this was the thread for you to post on.
So many warm wishes to you too.
Written so beautifully X
That is so brave and ingenious of you @Sandy2 to sit in the golf club for when the ‘girls’ come back from the course. You have certainly broken down that barrier.
Also if you fancied it sometime you might open up the subject of your diagnosis if it felt right for you.
I will copy this to @BloodCancerUK to see if they could move it to a better place if there is one as I am a bit technically challenged.
Be kind to yourself and keep posting
Thank you @Erica and @Nichola75 for your kind words and all the support you give to everyone on this forum. It is a privilege to be able to share my poems with like-minded people, especially if it helps them in some way. Warm wishes. Willow X
And it’s a privilege to be able to read them! X