My 21 year old son was diagnosed with Lymphoma on 13 December, still waiting to find out exactly which type but probably Burkitts. He has been really ill for two months, was in hospital for a few days in November and was re-admitted on 4 December. He started chemo this week and it has hit him hard.
We live 55 miles from the hospital and have been travelling through every day until this week when I have stayed with him. I think it is all starting to get on top of me and I am worried about work which I am supposed to go back to this week after nearly 3 weeks off. I feel guilty for thinking about myself when he is so poorly but this is all so hard.
Just hoping someone can reassure me that we can get through this. Practical tips are welcome.
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about your son.
So first a reassure - blood cancers on the whole are very treatable...... yes it can be hard work for some folks but it is do-able.
It is important for his team to get the exact type as treatment is specific to how the NHL is presenting.
What is the name of the chemo he is getting as we can help better with this info........ how many treatments is he having, do they intend to do all his treatments as an inpatient?
Lots if questions but this does help you work this all out.
There are a number on the group who have Burkitts so let’s see if they pick up on your post.
I totally understand the distance issues - we are in Inverness and my Stem Cell Transplants were done in Glasgow so a 9 hour round trip
We were very open with my wife’s employer and they were very understanding and made lots of changes to her work commitments- you just need to talk with your employer as this will be an emotional journey for you.
Our Online Information and Support Section is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
When you feel up to it 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..... like Thehighlander
you will have lots of questions so please post them as we are around to walk this with you ((hugs))
So some links that me be useful.
Nausea his team have tools to help with this so he must not just suffer - talk with his team
Fatigue can build but keeping some activity going does help a lot
Avoiding Infections - very important during the week after treatments
He needs to drink lots of water to clear out the toxins and protect his kidneys m.
Hi again, the treatment he is getting are standard and very effective. As the chemo starts to work he should see a progressive improvement in his pain issues as often the growth areas can trap nerves...... where is his MHL presenting? My main one was on my neck and it was very reassuring once the pain started to reduce as the mass was melting away from around the nerves in my neck.
Let’s look for his team to get him into a position that he can get home.
Do call our help line and talk with the Financial Support and Work Guidance team as they are dealing with these issues all the time.
((hugs))
One day at a time is a good foundation to move forward with. With blood cancers there is no quick fix, a friend once said to me “can’t they just cut out the cancer?” Far from the truth with blood cancers. It’s important that the chemo goes across all his body to break down the growth areas and mop up any cells that try and escape the treatment.
Apart from the pain - how is he getting on with the treatment?
