Hi Everyone, I'm 41 and have just been diagnosed with Follicular Lymphoma Stage 3A (Thursday). I have had a PET scan which shows various areas where the lymphoma cells are collecting although I am told it is not in my organs yet. As you know, the bone marrow is still a mystery and will remain one until they feel I need treatment. I decided to 'rip the plaster off' and tell everyone so it has been an emotional weekend. I kind of wish I hadn't because some of the reactions have been extreme. There are some people that hear Cancer but don't hear the rest of what you are saying..... I am trying to convince myself and everyone around me that it is not a catastrophe! I am not sure my family is buying it..... any suggestions on how to try and keep those around me sane? I am so worried about them, especially my mum whose partner is having his testicle removed this week due to his relapse confirmation last week. He previously had cancer of the throat which was very aggressive and his treatment 4 years ago was harrowing and I am sure my mum thinks mine will be the same..... (and it is really hard to get any info out of him so we don't know the details of his relapse, only the dates for appointments etc.) Am I being naive in saying mine is going to be much easier to handle when the time comes or is it going to be really awful? My head is swimming and I don't have another appointment until 28/02. My consultant sounded as though he didn't expect much to change in these 2 weeks so I'm not expecting to come off the watch and wait but my family is pinning everything on this date because they can't handle the watch and wait theory..... any comments would be really appreciated at what is turning out to be a very lonely time.....
Hi and welcome to this corner of the Community but always sorry to see folks find this safe place. I was holding off until one of the FL folks to came along and great that has picked up on your post.
Although I had another one of the other 80 types of Non Hodgkins Lymphoma and I do totally understand the journey - you can see our stories by hitting our Community names and putting some information in your profile can help a lot Click here to see how to add details as this helps everyone to see a little about you and support you better.
I was basically on Watch and Wait for 14 years.!!... but my skin Lymphoma was a strange slow burn beast........... watch and wait is in your best interests...... your team want to keep an eye on your lymphoma and save treatments for when they are needed them. There is lots of evidence that people do just as well in the short/long term if they are actively monitored and have other treatments kept until they are really needed.
This LINK is a good place for info on FL, have a look through it......... and even a good place to get your family to have a look to try and get them to understand the difference between a blood cancer and a solid tumour cancer.
With cancer in the family, especially a throat cancer, 2 + 2 will be put together...... but this is just not the case and it does not make 4.
Your family will not understand that basically you can not cut out a blood cancer. I would have had to be skinned as my body was covered with tumours........ but using some very clever, targeted treatments breaks down the build up of cancer cells in your body and basically melts them away.
The main thing I advise is to get the battle between your ears under control - clear information helps and join the Community was a good step.
Could I also recommend that you prepare for your next appointment with your team. I would always recommend you get an old fashioned note book.
The note book is the place where you record EVERY question that comes to mind. The note book goes to all appointments and when the Consultant says ‘have you any questions?’ the note book comes out.
A lot of people freeze at this point and are overwhelmed by information. So you can say ‘yes we have some question’ you go through each question one by one, making sure you write down all the answers you get. If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'
The note book also helps your sleep!!......as these questions often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.
I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you then go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward.
Always around to listen and answer questions ((hugs))
