My Mom finished frontline treatment in January, and had surgery in March to reverse her ileostomy so that she no longer has to wear a bag. While she's been on the mend, she often tells me "I feel different. I can't explain it. I don't feel unwell, but I don't feel great. I'm unable to describe what it is exactly I feel." In essence, she's not simply discussing her physical state of being, but also her emotional one. I want to encourage her to attend survivorship meetings to discuss here feelings with others who might better understand her, but part of me also knows that she just wants to leave it all behind and not confront it, at least for the time being. I would be so very grateful for any advice or words of encouragement that I can convey to my Mom.
Thanks so much for reading, and please know that you're all always on my mind and in my prayers.
Hugs and warmest wishes,
Roland
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rolycof
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Hi Roland. I totally get the way your Mom is feeling. Unless you walk this path its so difficult to explain. Having a diagnosis of cancer is life changing. My take on it is that none of us gets out of life alive but you dont think about the inevitable but cancer survivors are forced to confront their mortality. Its so hard to explain. Id say to your Mom not to dwell on whats happened just live each day, do the things that give you pleasure, today is the 'present' , tomorrow will come soon enough. It does get easier with time, Im in my tenth year since diagnosis. Hugs to you both xx Kathy xx
It's quite soon for your mum to be feeling 'normal'. Most of us found (and find) that we feel lost and unsupported to some extent after surgery and treatment ended. You have regular chemos and meetings and it suddenly stops and you're on your own. it's true that you can't understand how this is if you haven't been Through it yourself and while I fully understand why you want your mum to discuss how she's feeling and to attend groups, it may not be what she wants or just not the time.
Has she ever posted on here or even just read the many and varied posts? Was she open with her feelings before this all happened? If not it's not likely she will easily open up to others, and it can take some time for us to actually work out what we are feeling and why, those feelings of loss and lack of support plus fear of the future are all too real.
Just be there for her, watch out for possible signs of depression
You are doing a great job supporting and looking out for your mum through this .
I am 3 months post chemo , 5 months since major surgery on maintanance Avastin as diagnosed stage 4 and am getting my life back but no will never be the same as before diagnosis in lots of ways . We have all been through such a trauma with shock of diagnosis , surgery , chemo and recovery and can never be the same and also have the fear of reccurance sitting on our shoulder .
Does get easier with time but have found counselling useful for me but doesnt suit everyone . I started with 1:1 counselling as wasn't ready for a group . Maybe this might suit your mum ? But will need to be her decision , when she feels ready.
I will be starting a survivorship group end May and have met a couple of local lovely ladies through this forum .
As my counsellor told me , we need time for body to heal but takes longer for brain /mind to heal and process what has happened so yes we are never the same but lots of positives can come out of diagnosis . You start appreciating the little things and making the most of every day .
Had a great walk yesterday with our new rescue dog through a wood full of bluebells , really appreciated all the beauty of nature . 😀 and the fact that I am well enough to go walking.
Just be there for your mum and plan some treats that you will both enjoy and make the most of each and every day together .
The simple response is that we don't ever return to normal- hence why some find talking of finding a 'new normal' useful! That isn't to deny that the possibilities of the future, just that we all move forward in life accumulating knowledge and experiences along the way...
The impact of diagnosis and treatments is profound and recovery from it is a very individual thing though I think that it takes time and is a process is likely true for all.
I found The Cancer Suvivors companion by Goodheart and Atkins really useful as it is quite focussed on practical ways and it also has sections for friends and family throughout. Also do have a look forDr Peter Harvey's article "When the treatment finishes-then what?' - a Google search will find it. I think this was singularly the most important thing that I read and I know many others have found it incredibly reassuring and helpful.
It is as others have said early days for your mum and it's so lovely that she has your support and understanding that recovery is often emotional as well as physical. Wishing you bith hope and strength, Sx
It's still very early days for the toxic effects of the chemo drugs to weaken their effect on her body. This in itself can affect her feeling of wellness as there isn't always something specific to point to. If she doesn't want to join any survivorship groups, this doesn't mean she might not want to in the future. Putting it all behind her and getting on with living can be a good strategy indeed.
It's still very early days and she's very lucky to have such an understanding son.
I am so totally on board with what Clare and the other wonderful ladies shared. The following may be a strange analogy but I sure hope it helps.
Most of us do not like being in the spotlight. Cancer forces us to get on stage and get with the program with no time to waste. Even though we didn't want that type of spotlight- we had it forced on us before we even knew what our role was going to consist of.
The auditions so to speak was trying to find out what was wrong with us and for some of us, it took months and even years. Many of us were dismissed for a lack of the right test results. These dismissals play with one mind.
Then finally validation, the diagnosis of Cancer. Instantly we become the leading actress in this saga. Then the Royal carpet of sorts (surgery, recovery, doctors visits, labs more tests, chemo).
Then Chemo ends and it is sorta like the last act is over and the stage curtains are dropped. Forced into semi - retirement. Wondering if this cancer is going to call on us again or if we dare move forward and pursue what we want to.
Major shifts in our thinking occur. It's an adjustment period to put our goals and mindsets in a new order.
Thank you, everyone. I do think being forced to confront her own mortality so unexpectedly is at the heart of her occasional despondency. Even I think about the cancer literally every several minutes, seconds even. I wish I was exaggerating! I think another significant factor is just that she has had to relinquish control in so many ways, especially throughout her treatment. I mean, when a patient is on the operating table, s/he has very little volition in terms of what's going to happen during the surgery, and things like hair loss, weight loss, and unpredictable bowel movements are also inevitable. Also, I'll never forget seeing the chest tube, the catheter, the chest port, the ostomy bag, the gastric tube, the oxygen mask, the epidural route for pain meds, the bags of saline, etcetera when she got out of surgery; I just felt so utterly defeated and wondered if the treatment was even worth it all.
With all that being said, she is making a remarkable recovery (knock on wood). At the start of treatment she was about 134lbs (61kgs; 10 stone), and at the very end she was as light as 88lbs (40kgs; 6 stone). Now she is at 103lbs (47 kgs; 7.4 stone). Also, she's hardly idle, though she does take a nap around mid-day. I live about two hours away from her, so I see my Mom every other weekend or so, and I think I tend to notice her improvement more than she does, since I go for days or even a couple weeks at a time without seeing her.
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My mom has oc 3A low grade
Metastatic endometrial carcinosarcoma - not for treatment
Hello and help
Tomaxafin
mum's second chemo tomorrow xx
