How do we stop living scan to scan?

[thaker]

Hi My husband had a grade 3 tumour removed in 2001 with no recurrence for 7.5 years. He had a seizure in Feb and its back and has gone up a grade. He now has GBM which we are told is very aggressive. He had surgery in March and has had 4 lots of chemo. I find though that we are living scan to scan. He had an MRI last Thursday but we wont have the results til we see the neurosurgeon on the 11th and I can't think of much else. He has been told to focus on the important things and basically tidy up his affairs. I know we should be planning time together as a family (we have 2 girls aged 3 and 9) but we can't seem to fit in appreciating life between the treatments and scans and work (mine not his)and the day to day stuff. Any hints of how to think past the 3 monthly scans would be much appreciated. How have you coped? Thanks Sang

[Sailor]

Hi Sang This is part of life. I have been having three monthly blood tests for the past eleven years. A few weeks before each test I am touchy and irritable and difficult to live with. If the results are OK, then I'm fine. If they are not! Sometimes I'm OK as I've had a feeling that things aren't right and it is a relief to know I was correct and treatment is needed. Sometimes I've been feeling OK and the not so good result has me worrying for the next three months to see if things have got worse or the result was an aberration. Then I'm really difficult to live with!! Sometimes it does help to be busy - it stops you thinking about it. Making time to be together as a family is also important, and if some of the day to day stuff doesn't get done - what the heck! Don't be afraid to get some counseling - it does help and provided your GP will write a care plan for you you can get twelve visits to a psychologist on medicare through the Better Outcomes in Mental Health Initiative. Some of us this testing goes on forever. The frequency just reduces. I met someone a few years ago who is now down to one blood test a year. He gets it done in the third week of December and calls ithis Christmas present. Hang in there. Sailor The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails. William Arthur Ward


[AmandaC]

Sang, This is a hard one the whole living between scans, tests and treatment it’s normal to feel anxious. I am still on 2 monthly blood tests 3 years later and my husband is on 6 monthly CT scans, we still hold our breath on the lead up to our appointments. My son was 2 months old when I was diagnosed with thyroid cancer and 2 ½ when my husband was diagnosed with testicular cancer, sadly his life has always been between medical practitioners and tests. Its so hard when you have young kids its hard to find the time to slow down, stop and appreciate one another. What we have started doing is in the lead up to tests we plan a family day, that means everything and everyone else goes on hold and its just about us as a family. It doesn’t have to be anything to big, a few weeks ago on the lead up to my BT we started getting our veggie garden beds cleared and ready. Our 3 ½ year old thought it was the best day ever and to be honest it was nice for me to totally submerge myself into something other than my thoughts of the BT and results. Be kind to yourselves, we all tend to put way to much pressure on ourselves to orchestrate big events. Your kids will just be happy to have dedicated time with you both and don’t forget when the kids are in bed toi have a little one on one time together, everything else can wait its all about the 4 of you. HUGS XX to you

[thaker]

Thank you for your responses Sailor and Amanda. Hubby was on six monthly scans and his scan in December 08 was clean so it knocked us for six when a tumour the size of a ping pong ball had to be removed in March 09. I guess its early days and thats why we are still jumpy. Also i think the fact the tumour has gone up a grade has us feeling nervy. We had a great time at the park today so its taken our minds off Tuesday's visit to the neurosurgeon. I am seeing a counsellor although I must admit I've rescheduled the last 2 sessions...time to go back I think.

[samex]

Hi Thaker, I am due for the three monthly bloods and ct and visit to my oncologist in 3 weeks and I tremble inwardly every time I feel a little off colour or something hurts but I have to believe that it will all be ok and deal with it if it isn't. Your hubby is very lucky that he has you to be with him and share (is that the right word?) the anxiety. I'm afraid my husband feels that the treatment is over and that it is all behind us now and I tend to do all the followups on my own. Each of us deals with it differently, I guess. Make sure that you take some time for yourself and be sure to meet that appointment with the counsellor. You will probably be of more benefit to everyone once you do. In saying that, I can't imagine how you must have felt when the rug was pulled from under you, but what I have found is that when all else fails, there is always someone to listen to you without judgement in this forum. Lots of hugs and take care, Samex

[AmandaC]

I am so glad to hear you had a lovely day at the park, I hope tomorrow's appopintment goes well for you both. Its so hard to find time sometimes to see the counsellor god knows I reschedule alot. Thinking of you and sending hugs XX

[thaker]

Well...we got the results today and I think Sailor was right about sometimes being worried becuase you know something is not quite right. There is a new spot about 2cm away from the original resection site. Hubby goes for another scan in 4 weeks and if it has grown between now and then, he goes in for surgery. At the moment its close to the surface so looks operatable. The neurosurgeon did ask however if we'd want to proceed with surgery if he thought it was necessary and possible.Thought that was weird. Did he expect us to give up so early in the game? Prognosis is not too good but there's always hope right?

[samex]

There has to be hope or what is the point? Thinking of you, Samex