My 33 year old son was diagnosed with a PPTID in his 3rd ventricle in 2012. He had gamma knife radiation for it and it shrunk the tumour and stopped it growing. He has had 6 monthly MRI to check it and every time it has stayed the same. I think this lulled is in to a false sense of security. This December after his routine MRI, he was called beginning of January to be told there had been a change. He had an urgent MRI that week and we went in for the results 2 days later. His tumour showed signs of enhancement and it has also spread to his anterior clinoid process and also in his spinal cord. He had been feeling numbness and shooting pains in his chest under his arm and went to his GP about it who gave him nerve tablets,,we now know it was the tumour in his spine causing this. We are now waiting on results of a lumbar puncture to see what the tumours are with a view to going to The Christie for possible treatment. My son had a text today with a time for an appointment tomorrow where we hope to get some results and a plan moving forward. To say we are heart broken is an understatement… he is handling this so well, I am being strong for him and his dad… I just don’t know where I can get advice on how to help his dad who pretty much hasn’t stopped crying since we found this out. After his first diagnosis our sons relationship fell apart and he moved home so we could take care of him as he lost all his confidence., he has a 10 year old son who comes to stay every other weekend too… can anyone tell me what I can do to support my husband through this? I just don’t know what to do..and where to turn. This is so hard….
Hi MrsEmma
a warm welcome to the group. What a lot you have going on, I hope your son's appointment today has gone smoothly and allayed some of the fears of the unknown here. It's such a lot for everyone involved to take in.
I am supporting my husband through his stage 4 glioblastoma journey and supporting our two kids (21 and 24). It's been an emotional roller coaster ride for the past 17 months for us. This group and Carers only forum - Macmillan Online Community have been a great source of support for me personally. Friends and family are great but they don't always "get it". On here within the community there is always someone available to listen and offer some words of wisdom and even the occasional virtual hug.
It’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
As for what you can do to help your husband through this, all I'd say is be there for him. Listen. It's such a lot for everyone involved to take on board and everyone reacts differently. There's no right or wrong way to feel or to act here. The one thing I've repeatedly said to my kids is that we need to stick together. We need to be on the same page here and be there for their dad. We are taking it one step at a time, one day at a time. My husband's diagnosis was terminal from the start so it's case of being led by what he needs/wants from us too.
Please make sure you take time to take care of yourself too. It's all too easy to get caught up caring for everyone else that we forget about ourselves. Taking "me time" is essential here.
For now I'm sending you lots of positive vibes and a huge virtual hug. Stay positive. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Stay positive, mrsemma. One step at a time
xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
