Hi there, my name is Joe and i’m 47 , living in London, i was told i have TLGL this week after 8 months of tests following myself taking not well at Christmas 2021 shortly after starting a new job . The consultant that phoned me was unaware he was giving me a diagnosis and said that I should have had a face to face appointment to discuss the condition . He has said that the condition is indolent and only requires monitoring of my bloods every 4-6 months. my blood scores at the moment have all been okay . He sent me out an appointment letter for the end of next month . There were another 2 blood tests request forms for a FBC and also Acute Myeloid Leukaemia Moleculsr diagnosis. These were dated for May of this year and i know were done at my May appt as my other consultant said i did not have Acute Myeloid Leukaemia as i had spoken to her when i received the exact same forms at the end of May. The FBC one , i’ve only just had one at the end of July. My anxiety is sky high at the moment . I also returned back to work 2 weeks ago after 8 month off. I work within retail at the Immigration Removal Centre at Gatwick Airport .
I can’t cope with this . I have had shocking care and bad experiences at the hospital (not saying what one) .
I need support. i’m in tears at the moment
Good morning @Jbeaver12. I’m really glad you have found the courage to post on the forum.
It sounds like your journey so far has been really difficult and communication between different medical teams could have been a lot better instead of leaving you feeling as you are. It is so so difficult to hear a diagnosis, and the fact that yours was done over the phone is really tough and can only imagine the shock you felt.
Can I ask when your face to face appointment is? Whilst waiting it is important to get all of those questions written down. However, before you do this I think it would be really useful for you to give the support line a ring. It’s open from 10-1 today - 0808 2080 888.
I completely understand that you need some support and I think making the call today will give you the space to talk through how you are feeling now and for the team to support you in the time leading up to your appointment.
One thing you will realise on this forum is that you are not alone.
Please pick up the phone this morning (or email if you would prefer) and let the forum and the team give you the support you need.
Please keep posting and let us know how you get on X
hi. Thanks for the reply. i am struggling to cope at the moment and always in tears . it is affecting my relationship with my wife .
I do have a lot of questions for the doctors , This is also going towards a complaint to the hospital as my treatment since i was admitted had been next to shocking.
it gets me anxious when they send me another blood test request form that has an date of may 2022 on it. this one was for a Acute Myeloid Leukaemia molecular diagnosis. my consultant said when i queried the last time i had this sent was that i did not have Acute Myeloid Leukaemia . so why send it . my consultant then said that she specialises in tlgl but this suggests otherwise . these tests were done at the end of my appointment in may 2022.
What should i do. do i query the test request with the hospital on tuesday .
You certainly have the right to ask questions. One thing I would advise is that you take somebody with you and a list of questions.
Emotions always run high at appointments, especially if you are feeling emotional and upset so it’s good to have another person there.
PALS (Patient Liaison Service ) will support you if you want to take things further after your appointment on Tuesday. You will have more information after the appointment and be clearer in your understanding of the situation.
Things like this really impact relationships in many different ways - it did for me. I know my husband didn’t know what to do for the best or how to make me feel better, and why would he. It was so overwhelming for both of us. Waiting always makes things worse as it gives our mind time to go in to overdrive. I know it’s hard but perhaps plan something nice for you and your wife to do for a couple of hours. It can help.
Do you feel you could give the support line a call? Remember, it is there for your wife as well
Will phone tomorrow , my appt is not till end of september, i meant phoning the hospital to see about the blood tests in case they have been sent in error .
i’m at notting hill carnival to try and take my mind off things so can’t really phone support line atm
all the best
Hi @Jbeaver12 a great big welcome to our forum and I am so glad that you have found us and felt able to post.
@Nichola75 has given you brilliant advice which I don’t want to duplicate.
My husband cannot take anything about my diagnosis and sticks his head in the ground, everyone deals with things differently.
Perhaps you might also want to contact your GP as well as you might be able to get blood tests done there and they might be able to help you with your emotional anxieties.
I am so glad that you have felt able to go to the Notting Hill Carnival, perfect weather and I cannot think of a better way to take your mind off your anxieties, it must be stunning and the atmosphere must be brilliant.
Going back to work might take your mind off things too.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18 yrs ago and I am still having adventures.
Enjoy, look after yourselves, be kind to yourselves and spoil yourselves
Hi @Jbeaver12 , I’m so sorry to hear about your diagnosis, though I’m pleased to see you have had some lovely support from our forum members after so bravely reaching out. We have health information and information regarding covid, blood cancer, and managing risks on our webpages, but in the meantime@Nichola75 is absolutely right, you can give us a call at any time - tomorrow we’re open 10am-1pm, and 10am-4pm for the rest of the week, so call at a time that suits you. We’re here to answer any questions, or just to talk and support you through your experience whenever we can. Please take care of yourself in the meantime. Best wishes, Kate
Thanks everyone . my condition is indolent . other sufferers have told me to look after myself , i have a friend who is advising me on vitamins etc z howpfully change my diet as well. my mum died recently
so that is still on my mind as well . i’ve been told that i wont die with the tlgl . my story has been featured in almost every national newspaper . there is more to tell but we will leave that for another day. my wife is going through a lot of stress with legal issues . she has been a great help to me despite being disabled herself . take care everyone
So sorry t hear that your mum died recently @Jbeaver12 it must be a very difficult time for you, grief really is a rollercoaster of thoughts and emotions.
Your wife also has so much going on, I don’t deal with what personally stresses me well and despite her challenges she is a great help to you.
You are now part of our forum family too.
Please keep posting as I look forward to hearing more about you in time.
Firstly i must say how pleased i am that you have been able to reach us and i appreciate that posting must take some courage. I do hope you are doing okay today & that Notting hill carnival was a little bit of a distraction.
It sounds like you and your wife have been under considerable stress of late and to have a shock diagnosis must have been really difficult on top of everything else. It is no wonder you are feeling overwhelmed and emotional. As many others have already offered, we, as a support team are always here for you should you wish to talk things through- 0808 2080 888.
We can also arrange for a nurse advisor call at a scheduled time, if this is something that you would be keen for. Please do just let us know.
It is also a good idea to return to your consultant and feel confident in asking any questions you have, as this is a new diagnosis and indeed a new world which you will become more familiar with as time passes.
However do know that you can note down any questions you may have, rather than waiting for your next appointment, as you are entitled to contact your team and request an additional appointment to have these addressed and also have some support and reassurance along the way.
Look After Yourself, Lauran
Hi @Jbeaver12 I have been thinking about you and I just wondered how you are doing now?
Take care of yourself
Hi there , i am so angry it’s unbelieveable. I received the letter form the consultant which was worse than shocking . He said the likely diagnosis of TLGL not definite . He said it was detailed in the March appt that I had TLGL and that I could not accept the diagnosis , hence the appointment . He told me it was confirmed in May but why say it’s likely . My last appointment letter, the consultant said it t cell clones of uncertain significance. . I am seeing this consultant next week and frankly i feel like just telling them to take a run and jump as i am fed up with everything now . Feel like reporting all the doctors that have spoke to me to the GMC. what do i do .
Hi @Jbeaver12 Perhaps when you have time just write out a diary of events and itemise out your complaints then usually you would take go through PALS (Patient Advice and Liaison Service) at the hospital in question.
Definitely contact PALs if you are unhappy and @Erica says wrote all your concerns and questions down. Keep us updated.
Hi @Jbeaver12 I’m sorry that you had such a dreadful experience. I had a bad experience with my diagnosis too. For a long time nobody would take me seriously, they just kept telling me I had a bad back and should do some exercises to make it better. When I was admitted to hospital for the second time I lost the feeling in my legs and they told me I was making it up and needed to get myself up onto the bed without help as they were not going to help me as I weighed too much. They then spent the next two days bullying me and trying to force me up off the bed and told me they were going to send me home anyway even if I refused to walk. At that point I actually had a fractured vertebra caused by the cancer and it was only sheer chance that I got an MRI which brought to light the real problem. Others have given you good advice about involving PALS as it certainly looks like you have a had a rough deal. You can also request having your treatment moved to a better hospital too. I hope things get better for you and your future experiences are more positive.
Hi everyone , i met with the haematological consultant yesterday (another one) . She was
more helpful than the previous one . She answered a lot of questions that myself and my wife had .
She said . yes it’s TLGL . That I had got used to. She apologised that they used the term likely which had started my anxiety again .
Asked about diet etc and any vitamins that might help the fatigue . She did suggest one (can’t remember the name) but she said that might help fatigue and is one she recommends to her other cancer patients that are going through chemotherapy.
So now , it’s look after my life now, enjoy life . We know that this illness won’t take our lives .
My final point is that i told the named nurse that any future fundraising would be going towards charities that deal with leukemia .
Hope you all have a good evening . Love you all xxx
I’m so glad you had a more positive experience. It must’ve felt wonderful to be listened to and to have a chance to answer questions. The apology was deserved as well and I’m glad they recognised that. It’s amazing how consultants vary isn’t it!
Fundraising is so important - I’m sure whichever charity you donate to will be so grateful.
Take care and go and enjoy life!!! X
It sounds as if you are slightly less anxious now @Jbeaver12.
Look after yourselves and as Rod Stewart sings So love the life you live
And live the life you love, enjoy and please keep posting.
Hi. Thought i would touch base. Health wise doing great. just had the blood test forms in time for my appointment next month . i know what some of them are but some are to check for auto immune conditions . surely these would have been checked when they were investigating the tlgl. checked correspondence from the rheumatology dept that i had when i was in hospital and they said my auto immune screen was negative and my presentation is not in keeping with an auto immune condition. wee bit confused .
You must be a wee bit confused @Jbeaver12 perhaps it is worth checking it our with someone in your medical team.
I am glad you are doing great health wise, look after yourself