I'm new to this support group; my husband was diagnosed yesterday with DLBCL following eight weeks of investigations (two colonoscopies, two MRI scans and many, many blood tests. The original thought was that he was suffering with colon (bowel) cancer, but the consultant told us that the tests have confirmed DLBCL. We have been 'urgently' referred to a Haematologist to find out what level of cancer my husband has and to plan his treatment.
My husband is 53, a vegetarian, a runner, doesn't smoke, drinks alcohol occasionally, isn't overweight and is otherwise fit and healthy, but in July last year he sufferred a severe heart attack at the end of Parkrun and was fitted with two stents in his heart, the cause was a genetic cholestral condition that we were unaware of until the heart attack.
I have (of course!) 'googled' DLBCL and I think that I understand what the condition is. However, I am struggling with my own emotions (which I feel guilty for as I should be more concerned about how my husband is coping).
I think my biggest emotion at the moment is anger; my husband first went to his GP in May last year who suggested all the usual tests and samples with a view of perhaps IBS or a virus etc. Unfortunately the pain was so severe we had to visit A&E twice where it was thought it may be gallstones or kidney stones and following another trip to the GP where my husband literally had to beg for some further investigations, he was then referred to the consultant in November last year.
Knowing how much time it has taken to get to this stage (all the time being told that he would be treated as an 'urgent' case) I am afraid that this delay in starting treatment (which we still don't know what or when) will have allowed the cancer to spread. On my husband's letter of diagnosis it states that the cells are high grade and germinal - to me that sounds like the cells are spreading quickly?
It is so frustrating that we still don't know what's going to happen, how long it's going to take, what the prognosis is - I'm really scared for my husband (who incidentally is unusually incredibly calm about the whole thing and has started to plan for the worst).
I don't know what to do to help and I'm not good at just waiting (and clearly not good at understanding what the word 'urgent' means in the medical world!).
It has helped to type this, I feel a little calmer now - sorry for the rant!
Does anyone have any similar experiences of 'urgent medical care' in the South East of England, or have any strategies that I can utilise in dealing with my own emotions?
Thank you.
Hi and welcome to this little corner of the Community but always sorry to see folks finding us. I help out around our blood cancer groups, I do have NHL but a different version.
First the time it has taken to get diagnosed..... yes very frustrating, but this is rather normal for Lymphoma. I was 21 months before we could get a clear answer as to what was wrong with me...... Lymphoma is very difficult to diagnose and it is very important to get every part of the jigsaw together to move this forward.
Urgent when it comes to blood cancers can take far longer than pother cancers. First Heamatology departments are some of the busiest departments in hospitals and even once you get that appointment there will be more time as more tests will be required.
Could I suggest that this part is more or less in the past..... you now need to look to the future and focus on the end goal - getting though this and out the other end.
Have you had any connect from Heamatology?........ if not call the Heamatology department and just ask to get your husbands GP to call...... its all about keeping the system working for you.
So the Haematologist may ask for more tests...... has your husband had a PET or CT scan and a biopsy on any growth areas?.......... once they are happy that a clear diagnosis is in place a treatment plan will be put in place.
Lymphoma is very treatable, the stage number will give the team the information about the many types of treatment and how long this will be.
Very important not to see a blood cancer like DLBCL like sold tumour cancer as the higher the stage the worse the prognosis...... I 4a2 and was treated successfully.
I can understand how you are felling about not knowing what to do, how to support....... but this will come once you get the plan.
The one thing you can do now is prepare for your appointment with the Heamatologist. I would always recommend you get a family 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....... especially with blood cancers. 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 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.
The note book should have questions like:
What type of condition has been diagnosed? - exact name and grade etc.
What are the proposed treatments Chemo, Radiotherapy......?
What are the names of the Chemo Regime?
How many cycles of Chemo and how long will each cycle last?
Does this require inpatient time (over night)
How many sessions of Radiotherapy and how long will all the treatments take?
Remember to express any reservations about treatments........ an example - I have Thoratic & Lumber Spondylosis - Spinal Osteoarthritis so I found out in the early stages of my radiotherapy that I had to take some pain killers an hour before I had my treatments as I found it hard and painful to lay on the radiotherapy table for long periods of time.
You can see some of the group members stories by hitting out names and it would be goos........ and will help you get your mind in order if you try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
You will have lots of questions but we are around to walk this with you ((hugs))
