Hysterectomy survival guide 1 1/2

Ouch.
Things are going uphill right now and I would say try to get out of hospital as soon as you can. Healing happens at home.
Healing does not happen, if you try to do too much. Listen to the advice of your doctor, he/she did not give them for no reason. On some days it has been a struggle to stop myself from driving and going shopping. Then I remember I should not be carrying much, so there is no point going anywhere. This is the time to depend on other people and not refuse any help. If someone wants to take you grocery shopping, go and say thank you.
If you have no one at home, then it is vital you have friend/neighbor or someone to come in case of an emergency.
Things I wish I had known before hysterectomy: Food. Preparing meals beforehand is a fab idea, but what if those meals aren't what you want after operation. You can't just grab a heavy saucepan and prepare something you want. Solution is enlist help of your family/friends, who are probably more than willing cook for you. My appetite was not the same at all and I had to force something down. Something that contains a lot of fiber is good, Drink plenty of water too.
Medications. They will probably give you painkiller (a must!), laxative (another must) and something else to take home from hospital. So there I was, with five glass bottles of laxatives. Heavy load to carry for my poor friend, who took me home. Take the meds. I had so much trouble with bowel function for days and days, even though I took laxatives as prescribed. Never mind the yucky sweet taste of Lactulose. Finally, day 3 or 4, combination of oatmeal, lots of water, prunes, peppermint tea and yucky laxative liquid, something began to happen. Bowel function is still not back to normal and I am having to take laxatives every second day now and hope for the best. Another thing is a reminder about painkillers; take them. Do NOT be in pain. Pain makes you miserable, frustrated and slows down the healing process. It also makes you want to break stuff. Pain is lethal and it should not exist. Pain simply sucks. But don't be afraid of pain. All I got from hospital was Tramadol (which I did not really need, but it was nice as back-up option) and Ibuprofen, which I took. Then ended up taking just Panadol 500mg twice or three times daily. In hospital pain was treated with Morphine, which was totally awesome, but made me itch.
Sleep. In the early days sleep as much as you need. Other stuff can wait. If you can't sleep, wait until you can or take sleeping tablet. I took some in hospital, and that tiny little tablet helped a great deal. Nothing wrong in taking one to help you sleep. Sleep during the day too, in-between activities. Prepare for some weird dreams too, as you begin healing. I've had few and woke up feeling great.. until it was time to really get up.
Peer support. I did not know anyone, who had had exactly the same operation, so I could not really get any information. What's the pain like, is there any pain at all. What can I do at home?  What can I eat to heal better? When can I start sport activities? There are thank God a couple of nice support groups in the Internet and you can join at least one of them free. Keep searching. Google will help.
Other worries. I've had so many that I've lost count. Crying, being frustrated and angry that I am too tired of doing what I want, my usual daily activities. I've been worried about sneezing, coughing, spotting, pain, sleep, exercise, follow-up appointment and I got practically no information about these. I was a bit spaced out in hospital so I don't remember much, even if someone had explained these things to me. Booklet, A4 paper, whatever would have been awesome, but I don't remember reading anything. I was told to show up for my follow-up appointment, in about 6 weeks or so. Try explaining this to patients, who've just come out of anesthesia and are on narcotic meds. Try.

When I overcame pain, bowel issues and fatigue, I found that there are actually things I can do around the house. Just inside the house really, apart from short walks outside. I've been reading a lot, watched TV each and every day, slept in, ate something nice every day (yes, ice cream, chocolate and stuff like that and sometimes not at all in moderation). I've caught up with lots of nice movies and series I have wanted to see for a long time. "The Lone Ranger", "Purge", "Midnight in Paris", "Over The Hedge", "The Leftovers", "Supernatural", Top Gear UK" etc. List goes on and on. I found that I can't sit for a very long periods of time, but it's best to sit and lay down on the sofa. And walk of course...
Walks outside have been great in many ways. They keep me connected to outside world and when I take the dog with me, people sometimes stop for a chat. The Dog was a concern at the beginning; would he walk ok without pulling me on the ground. Once I had to release him, because he got overly excited about scent somewhere and decided to attempt new 100 meter world record. I let him go, thought I'd not take a chance with my internal incision. Usually I just ask him to wait, and repeat this several times, then he knows he has to wait and he knows I can't walk as fast as I did once. What's the point overdoing it and walking fast anyway? I'd not want to miss all the scenery and people.
If and when I overdo it, I get spotting and feel a bit like an inflated balloon.

I have the best days when I get to sleep at night. Then I don't need to take a nap during days anymore. This is Day 12 after my operation and I am doing reasonably well, but trying to be compliant with all instructions (which I did not really get or just did not retain the info) drives me crazy.

Bottomline is that hysterectomy is one of the major surgeries. Do it, if you have no other choice and I'm really talking about elective surgery, like me was. If you have time in your hands before surgery, try to eat well and exercise, you'll be in a better shape during and after surgery. I had laparoscopic gallbladder removal in 2008, diagnosis was delayed (chest pain, heart attack..?), I was on IV antibiotics and was in horrible pain and days prior to the operation. Finally I had to beg these peeps to operate or I'd run away from hospital. That was something. Crap! Compared to gallbladder experience, this surgery was really quite easy on me. I'd not have said something like this week ago, but goes to show things change, onions change, time passes and human mind forgets.
Huge reward, if everything goes fine, is saying good bye to prolapse, fibroids, heavy periods etc.

Sick leave is meant for recovering, not for big renovation project in the house. It's meant for thinking, sleeping, resting, reading, watching TV, surfing the Internet, updating your blog or starting one, eating and taking your meds. You'll get there, eventually, just like I did.

More to come...

Hysterectomy survival guide

When I first heard I'd have to undergo vaginal hysterectomy, I thought OMG, run away as fast as you can. But it was either that or keep suffering. Fibroids and heavy bleeds never let my anemia heal, and on top of all I was also diagnosed to have uterine prolapse (yea, where did that come from...?). We tried hormonal IUCD, which may have controlled the bleeds, we'll never know, because the IUCD was floating in the toilet bowl one morning. I'm glad I did not flush as I'd have normally done. So I fished it out, packed in plastic bag and showed it to ob-gyn next time. His facial expression was priceless. That's when I knew I'd have my hysterectomy. Previous radioactive iodine treatments messed up my periods and fibroids only added onto that. It was quite a remarkable, but annoying situation.
Days leading to the hysterectomy were very hard for me. I spent two weeks traveling prior to the surgery, in hindsight this was one of the best things I could have done so the surgery did not consume all my thoughts all day long. It still did. One moment I was happy, next moment crying and feeling desperate and convinced I would not survive.. I am known to search for all sorts of information in the internet and this time I did exactly the same. Some information in reasonable amounts is good, too much is just too much and can do more harm than good. My mind is specialized in creating scenarios of horror and pain of Lovenox injections, various kinds of catheters, packs, needles etc. That's why I should be stopped,  but no one can. It took every ounce of my strength to calm myself down and trust that I would be ok.

It was only when I left for the hospital on the day of surgery, when I felt calm, reasonably calm at least and I thought things will now happen the way they are meant to happen, it is inevitable. I asked for sedation prior to going to operating room and I was given some, so I can't remember a lot what went on after that. I remember I was talking to the anesthetist and was suddenly covered up in sweat and felt dizzy. I don't know if she noticed. When I woke up, I was not in agony, not in an awful lot of pain and patient controlled analgesia was provided. Sweet Morphine. It took the pain away, but gave a very generous overall itching sensation and then I had to have Benadryl for that. Pain was never really an issue, neither was Foley catheter or vaginal pack. I was told to get out of the bed, but with the packing and Foley still in place I said "No bloody way" and waited until pack was out. It was really just a weird sensation, when the Foley and the pack were removed, it did not hurt. I wasn't constantly aware that those two foreign bodies were inside either. Much better of course when they were out. Had I thought more about foreign bodies and persona non grata, I would have been reminded of someone...

"May I enter?" The person did not wait for an answer, just barged in. I closed my eyes tightly and pretended I was asleep. Wrapped myself in a blanket too.  No permission granted anyway, so please leave. Out! Success! She left.
Next time the same person tried and succeeded in entering the room with a group of people, but once again I pretended to be asleep and refrained from making nasty comments about hospital breakfast (eggs!).  Third time came and I was not so lucky. I heard the foot steps and by then it was too late. She was next to me asking how I feel, if I am ok, if I am painfree etc and blaah blaah blaah etc. I couldn't even pretend I was pleased to see her and gave some answers in monosyllables. I was standing in the middle of the corridor talking to someone else, so yes of course that was the perfect place for ambush and interruption of conversation with the other person. I think the person realized she would not get that usual welcome with banners and open arms and all, so she left. But not before giving us all knowing opinion that I would still be in hospital for "several" days.
Hahaaaa and did I enjoy proving her wrong. I was gone the next day. What a joy. I was also told she was going to arrange a "private room" for me. Dude, no thanks, I am happy to stay where I am. Sharing a hospital room is perfectly fine. Besides what became of her attempts. Nothing. Nil. Nada. Zero. No one came and asked me to move into a "private room". What a ....

I am at home now, not really sure if this is the way I should be feeling. Quite comfortable. Not a lot of bleeding. No pain. Just wondering if I can comply with post-op instructions, which I can barely remember, because of anesthesia effects still lingering around in my brain. No driving for 6 weeks? No riding for 6 weeks? No sex for 6 weeks? No cleaning of house for 6 weeks? No carrying heavy shopping for 6 weeks? No, I was not told of all this, but a research minded person can always find a way. I particularly like the fact that no heavy household work is allowed. I also like the fact that I will need to take some time off work too. I don't like the fact that I can't drive. But I can walk. Walking is good for you kemosabe.

Another reason to be grateful

Waiting for someone, who never came. Waiting for something to happen, that never did. It's so hard when there is someone or something that we so desperately want and it is all in vain.
Then I read the blog http://www2.mdanderson.org/cancerwise/2013/11/aml-survivor-my-road-to-recovery.html (link also below) where Erika Evans writes about her experience and recovery from leukemia. She says she used to look out of the window and wishing she could trade places with another person outside.

Oh. I feel bad now. Real bad. My patience really needs to stretch a bit further and if I could just remember there may be someone who would trade places with me, no matter how miserable my life feels right now. 
I'm saying nothing about my day last week, when I accidentally broke my alarm clock in the morning. Later on that day I discovered that I could not switch on my Nokia cellphone- on/off button was stuck! It still is. Printer was malfunctioning too, but what is this really compared to spending days in hospital being unable to eat, bathe, get out of the bed at all.