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Dear WayneJ,
Thank you for your comments and response to my post. I am sorry you have been through so much and are in a similar boat. Im getting to realise there are a lot of us like this. I completely agree with your words about "not getting it, and not being able to get it, are worlds apart" - and that is what hits home really hard. My husband struggles each day knowing what we have lost, what we had and how wonderful it was, to suddenly nothing, and no matter how many things we try, what we once knew is just gone. My husband has diabetes and injects himself twice daily - how much of a pin cushion can a person be?
I feel there needs to be a support component with any surgery. My husband just had surgery for a third time relating to cancer, and it was full open surgery, with lots of risks, more months of recovery, and also the recommendation of an epidural with all of its associated risks. But when you are in the hands of the experts trying to save your life, or extend it, its hard to say no even with all the risk "what if's" you are confronted with. And sometimes it all happens too fast because the doctors want to get you in asap and eradicate the disease, so you dont have time to process it. We have been lucky to be in the medical system (through my work) and diagnosis, tests and surgery all happens in two weeks.
The communication and lack of support/counselling to really understand what is going on, what you have, the medical and emotional impact, and the outcome of fixing the problem, it is the part of the medical system that lets people down, and ultimately contributes to failed marriages and other issues such as finance stresses. I was speaking with one of my doctors, because I was asking how much everything was going to cost all the way along, and he says people are even too scared to ask about the cost of things. They just go through the process, pay the big bills and then have to deal with the consequences of the expenses while trying to cope with the physical, mental and emotional repercusions afterwards. It certainly is a rollercoaster. He agreed with me that there needs to be more upfront discussion before and after the medical procedure. I am aware everyone is different, and people will react differently, and even those who understand what is going on, and look together on the outside, it can blindside them - like it did to us. And it doesnt always happen straight away, because you focus on the surgery, the recovery, getting back to routine, kids/family/work etc, and then as the changes or loss become greater, then the impact hits. As you can tell I am passionate about this subject, and feel the need to express my thoughts any change I am given. Thank you for "listening" to me. All the very best.
Dear kj,
Firstly I want to apologise that it has taken me so long to respond to you. I kept reminding myself that I owed you a reply, but I wanted it to do justice to your response, and give my all in return. My husband and I have been going through more things (with a third cancer surgery - a recurrence of the liver met from the original bowel cancer), and have been unable to give my reply the full attention I wanted.
When I first read your message, I was brought to tears. The fact that you felt my post was worthy of being shared with your wife and that it started the process of communication again about such an intimate, private and difficult subject, meant the world to me. And it hit me even more because I am aware how hard this is for men to open up, even to their closest love and soulmate in their life (let alone a stranger). Such an effect from surgery and treatment can hurt a man's masculinity. But to me there are so many ways a man conveys his masculinity - it is his mind, and with his confidence and attitude, and most definitely in the way he confirms everyday his love for his woman.
I really missed making love to my husband through the 18 months of his bowel cancer, but I find that there are many other ways for intimacy, and a woman responds and feels loved by her man when laying in his arms, and feeling the touch of his fingers caressing her skin (or her touching yours). And long gentle kisses. If the act of physical intercourse is not on the cards, just being together, making time to just enjoy each other, hold each other, talking when being wrapped around each other, or just long silence listening to his heartbeat and each others breathing. Its all about focusing on the little things, and feeling the closeness, and not putting the pressure on yourself to have to perform. Love can be shown and felt in so many ways. Its about communicating and finding together what that is, so you dont feel like anything is missing. That is just some of my thoughts, and as you can see, I am very passionate about this subject, so excuse me if I am a little forward :-).
Anyway, your thoughtful message made my day, that perhaps I had helped another person in this crazy world. I hope you and your wife are finding a closer connection and rekindling what you have shared for obviously many years together. Thank you again.
Just wanted to say thank you for being bold enough share your experience with us. I know it takes a lot of courage to air out parts of your life like that, and I am greateful that you did. Like several people haev already pointed out, it is an issue that many people might tackle, but one that does not get nearly as much attention as it deserves. I can't begin to imagine the complexities of navigating this, but I wish you nothing but the best and I hope you continue to play a role in each others lives in some way or form.