Does anyone have a rule book for this journey??

Hi and a welcome to our community though sorry to hear about your son.

A cancer diagnosis any time is a shock, even more so in a son and while there is no "right" answer we do have some collected wisdom in Supporting a family member with cancer.

Sorry to hear about the reaction from your employer, it might be helpful to talk to our work support service - as you are clearly a person affected by cancer.

Far from being useless you reached out for help - we have all been there, welcome to our safe space.

<<hugs>>

Steve

Hi Arlia

sorry to hear about your son.

I wish there was a rule book for this journey or even a map but if there is one, I haven't found it...yet. 

My situation is different. My husband was diagnosed with a terminal brain tumour last Sept. He's only 51. We have two kids - 23 and 21.

It's an emotional rollercoaster ride but you know what - all these emotions are allowed. You're his mum. He's your baby boy and it's ok to be all over the place. Everyone copes differently with things but there's no right or wrong way to cope - there's no rule book.

Hang in there. Stay strong. This forum are great listeners so you're never alone when you need to reach out.

love n hugs

Wee Me x

I'm so sorry for your pain and shock at his diagnosis. Ten months ago my 33 year old was diagnosed with acute lymphoblastic leukemia, also a blood cancer.  Your son will need your support and you'll be able to help him.

Hello Arlia - I'm new here, haven't introduced myself yet but wanted to say I'm so sorry your son has blood cancer.  Processing takes time and it's time we don't have - that's just one of the catch 22s that caring brings us.

The rule book is another catch 22 for new carers - you have to write it yourself!  Now I have a few months' experience with caring for my mum, I feel more competent but I still collapse in a hot mess of tears sometimes because I can't keep up with the housework, laundry, cleaning, cooking, finding ways to entertain her, reassuring, washing, dressing.  

There isn't time for my own thoughts or to get any proper rest.  

The standard answer for carers in our position is "get respite care".  The people who say this mean well, but have no idea how much preparation and worry and fear goes into getting ready to pass the person you love on to someone else to care for, even in their own home.  Then really, would I relax and get that respite I need?  No. I'd feel guilty and worry so much it wouldn't be worth it.

Mum probably has very little time left, after her triple negative breast cancer returned, metastasised now to neck and thorax lymph nodes.  She's going to have some radiotherapy, always game, bless her heart.  But I can't just waltz off and have some time off right now.  She needs me so much and doesn't trust anyone else.

The other thing that was always advised for new carers was "Get into a routine" - hmm.  If I had had time to stop trying to juggle all those balls in the air, I might have had time to think about a routine.  

My best advice is to get those blank spiral bound notebooks - have two or three, one in upstairs, one downstairs, maybe one in the kitchen.  Write lists, appointments, notes about phone calls, phone numbers, things to do, even how you feel, in any order.  You will find what you need, even if you have to nip upstairs for where you wrote it down when you took a call up there.  

If you can, go for a walk - I can't often but it does help a lot when I can.  

Prioritise household stuff.  Sort a few basic outfits out for each person, to limit the amount of laundry you do.  I Get a bunch of ready meals instead of worrying about what to cook (I get some fresh broccoli and sweetheart cabbage in, both keep very well in the fridge, to add to the ready meals).  This might not suit you but it has really helped me.  I can't face meal planning and cooking.

Collapse and have a good cry when you can/need to.  Pretend you've had a sneezing fit, if necessary!  None if this is fair, none of it is right, it's a monumental seismic shift in life and it's perfectly ok to be overwhelmed.  Your employer should be ashamed of themselves, don't for one minute fall into that employee guilt trap. I've taken a sabbatical from my work, it's unpaid but an option that means I don't have to worry about job security for the moment.  

And you did the first thing in your own personal rule book already - reach out on a suitable forum.  Keep posting and offloading here, as I said I'm new here too but have used forums for a long time to keep myself sane.  Well, sane-ish!

I agree with the previous post. It's all soooooo much. I got a very big calendar to write on, use pencil as things change upon a blood test. I write appointments, medicine changes, phone numbers and names on this too.

Here in Illinois, my son's gone to 4 hospitals. Has 2 lead oncologists, general practitioner, surgeon, nurse practitioner etc.  So I  write down alot of information. 

You're doing ok don't doubt yourself and ask for help when you need information or support

I'm so sorry you and your family are going through this. Noone should ever have to endure the pain and suffering that cancer brings to a family. It feels so unfair and life stops in its tracks just like that. Covid has played a cruel part in delaying treatment as we all know. We started our journey with a curative hope but now are looking at palliative care living on borrowed time but trying to build special memories so my young sons can remember their wonderful dad. Life life in the present no matter how hard xx