One patient with glioblastoma still alive nine years later
by KPuff123 on Tue Feb 19, 2013 07:47 AM
At the end of December, my boyfriend was diagnosed with Hodgkins Stage 1. Thankfully, he has been responding really well to all of his treatments. He just went through his third session and gets chemo every other week. With any luck, we will be finished with chemo and be able to blast the rest of it with radiation and be done with this.
Per his request, and because his condition is not terminal, he does not want any of his friends knowing about his condition. Though I respect his wishes, it has personally made it difficult for me to find someone to talk to about his besides his family.
On that note, his family has not made this experience easy. Before his diagnosis, he was not very close with his parents and now they are calling/texting every day with no helpful advice or acting like they know everything there is to know about his cancer. I feel as if they do not think I am capable of acting as his caregiver even though I have spent all of my free time looking up information on his cancer, how to deal with side effects, as well as ensuring that he eats/gets all the nutrients that his body needs.
Even though we are getting towards to end of his treatment (hopefully), I am finding it difficult to act like the brave soldier and support system on the outside like nothing is going wrong even though internally I feel stressed nd exhausted beyond belief.
by thebyrdsfriend on Tue Feb 19, 2013 12:15 PM
Oh I am so sorry. To me it sounds as if, your boyfriends diagnosis is curable, stage 1. What he is expecting you to do, is not healthy for YOU. As his caregiver, you are under preasure from trying to keep him healthy, to making sure he gets to all his treatmemts and appointments. It's stressful for caregivers. He is making you bottle up all these things, and it isn't right of him to expect you to just handle it. As a woman who has been loved by the best husband in the world, who was my caretaker, I can assure you that we went through cancer as a team. I made sure my husband had the oportunity to vent to his friends, family, or doctors when he needed to. Keeping "secrets" is never good for anyone. It's actually pretty selfish if you ask me. He isn't thinking of you while making this request.
I understand not telling some people, like maybe acquaintences, but close friends should be told, if for no other reason than to be able to give YOU support. The cancer patient isn't the only one who needs support. Caregivers go through so much stress. I just know love between a man and a woman includes caring for one another, not putting a burden on one while the other is sick. This man is making you seek out help because of his illness. That isn't the way it should be. But, I guess I'd say to call and make an appointment with a therapist, or some other care giver support. You can't keep this bottled up, it will only affect your own health, and not for the good.
by Glitzy1294 on Thu Feb 21, 2013 03:34 AM
My husband's family does the same thing. They are far away and even though I am the one dealing with the day to day and talking with doctors, everytime we talk, they seem to have all the answers. I know in my heart they mean well, but it's hard to hear and as a caregiver, you always second guess yourself that you are doing the right thing. Maybe in addion to an online support group, you could find a local caregiver's support group so that you'd have a place to talk. For me, we live in a rural area and don't have many support groups like that, so I've been going to counseling. I can't imagine how hard it would be if I couldn't talk about his condition to anyone.
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