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October 12, 2013 at 12:46 am #21623charissa1969Participant
Matt’s post today finally motivated me to post my email to him about my first week after having my lymphadenectomy. While I was somewhat prepared from my research and all of those on this site that posted about their experiences, there were some things I wasn’t as prepared for. While I know everyone’s experience is different, I thought mine might at least raise some questions to ask.
It’s been almost 7 weeks since the surgery, and I am doing fine. Like Matt, I have days when I am frustrated with my limitations, but mostly I am glad to see the progress I’m making. Once I can get back to hiking, clogging, and modified Zumba, I’ll feel more human again. Thank you again for all the encouragement throughout the last few weeks; I am very grateful!
My email to Matt the day before his lymphadenectomy:
So I have lots of information which I will eventually post on MIF especially
having to do with the first week after surgery. I knew from my first surgery (WLE/SNB)
that I would be nauseated for the first 24 hours after I woke up so I was a bit
more prepared for that. I had IV meds in recovery, but one of the interns
ordered oral meds a few hours after I had gotten to my hospital room. The nurse
caring for me stood there holding the meds, and I told her I just didn’t think I
could keep them down. She told me that she had to at least offer them and then
promptly ordered a morphine pump for me. It really was a lifesaver that first
night; I think the surgery was more painful because my surgeon did a Sartorius
muscle flap rotation as part of the surgery (will you have that done?). By the
next morning, I was able to get off the pump and start taking Percocet every 4
hours with a morphine injection every 2 hours between. By the next day, I felt I
was OK to just take the Percocet though if I didn’t get it at the 4 hour mark, I did have pain so I
wish I’d kept up the injections. I had a physical therapist visit that day to
get me out of bed and stand me up. I was unable to move my leg at all and there
was a lot of pain on standing. I was able to sit in the recliner with lots of
pillows for a few hours. By Wednesday, the pain started to become more
manageable with less meds though I strongly recommend you take whatever is
offered you as often as possible because it is much harder to get the pain under
control if you wait. The PT came back and I was able to move around a little but
still had a great deal of pain even with meds. I knew I would be going home the
next day and could not imagine being able to do it. But by Thursday, I was up
and walking with a walker with only moderate discomfort and little pain. I
cannot tell you the difference between day 3 and 4; it was really incredible. I
am so glad my surgeon ordered the 3 days in the hospital. Also, I had someone with me 24 hours while in the hospital. While you will have a catheter after the surgery (I didn’t know about
this), they will take it out the next day and I needed lots of assistance to use
the bedside toilet they provide. Otherwise, you would probably have to use a
bedpan. Also, I couldn’t eat much at all in the hospital; I mainly survived on
applesauce and ginger ale. I think this caused problems with my bowels since I
could not go at all until 6 days after surgery, and then it was a full day of
very bad pain. If I had it to do over again, I would have started taking stool
softeners the day after surgery and used a suppository (sp?) by day 4. At the
hospital and at home, I had a walker and a bedside potty. I used the walker only
4 days after coming home and was able to transition to a cane so if you can
borrow one, that’s best. I used the bedside potty until last Monday then was
able to transition to a regular toilet (though it is uncomfortable even now). I’m still using a
shower chair and a handheld shower since if I stand up in the shower, the drain
pulls a bit and I’ve tried very hard to be careful with it. I started using a
compression stocking the day after surgery; a thigh high that I was fitted for
that I only pull up to where the drain is. Oh, that’s another thing. I thought
the drain would be at the incision site (my surgeon used the incision from the
SNB and elongated it on both sides) but it’s actually about 4 inches below in
the middle of my upper thigh. Before you go home from the hospital, practice
emptying your drain and stripping it (they can show you how) so you feel
comfortable with what you need to do when you get home. To strip it, you pinch
the hose at the top and then slide your fingers down to squeeze out any tissue
that may be blocking the hose. A nurse told me that if you put a couple of drops
of dishwashing liquid on the fingers that are sliding that it is easier, and it really is. I know it
doesn’t make sense now, but when you learn how to do it, it makes it easier. I
would even suggest taking a small bottle of dw liquid with you to the hospital.
Also take some type of lip balm; your mouth and lips will get dry from the pain
meds. Also before you leave the hospital, make sure they give you something to
measure your lymphatic fluid in and also get some drain sponges (dressings) to
put around the drain. For some reason, I’m fine with the 6 inch scar on my leg
and the 8 inch scar in my groin, but I hate looking at the drain coming out of
my leg. Also, since it’s technically an open wound, I feel better having it
covered. The drain dressings have a slit in them that fit around the drain hose;
they also gave me paper tape to hold it down.
P.S. Prepare yourself to have the drain in for 4 weeks after surgery. I was told 3-4 weeks, but I didn’t realize how much I was counting on 3 weeks; it made the last week very hard.October 25, 2013 at 1:18 pm #62721Catherine PooleKeymaster
I just wanted to thank you for sharing this and taking time out. I hope you are recovering well. This is helpful to others I’m sure!June 7, 2014 at 1:56 pm #62722 Dear Charissa:
I can’t thank you enough for this post. Doctors do not talk about the little things that can make a hospital stay so miserable, like your stool. I now feel much better prepared for my dissection. I am also very curious how you and others are doing now, a year later. The idea of not being able to go running again ever in my life is painful. Is it that bad? Are you able to go for a hike in the mountains (another one of my favorites)? I am prepared to make the sacrifices that need to be made and to live with a high degree of uncertainty, but I still would like to have a fuller picture (if there is one).
MadeleineJune 7, 2014 at 9:06 pm #62723charissa1969Participant
I am so glad you found my post helpful. I can certainly empathize with your concerns about the surgery and beyond. I also mourned the thought of giving up my active lifestyle, primarily clogging and hiking, like you. What I wish someone had told me (though I didn’t express all of my worries at the time) was that you can’t think that far ahead. To be honest, I wish I had been more prepared for dealing with the drain that will be in for +/- 4 weeks. It was uncomfortable and inconvenient, and it messed with my mind more than it should have because I was convinced that things would not get much better. I moved as much as I could each day and was very proud to make a mile walk about 3 weeks after surgery. But nothing compared to getting the drain out. After that point, I really took off, healing-wise. But then a month after the drain was out, I developed lymphedema and I had to learn how to manage that. It was a setback and something I had tried really hard to avoid (by exercising everyday, drinking lots of water, keeping my leg elevated, etc.). But then, after a while, that was OK, too. I just recently found my “sweet zone” which was switching from a 20-30 mm compression stocking to 30-40 mm. Even though I have to wear it all day every day, my legs are the same size again. And as for doing the things I love, I started clogging again about 8 weeks after surgery, and while I can’t last as long as I used to, I’m grateful for being able to still enjoy it. I’ve been on a couple of hikes, but I haven’t attempted a mountain…yet.
The biggest difference I deal with now is the amount of time I can sit with my knee bent instead of being straight out. After 20 minutes, I am still very uncomfortable. It makes driving difficult and long trips are probably out for good for me. But on the bright side, it keeps me up and moving around. I’ve found a rebounder (mini trampoline) helps when my leg is feeling heavy and achy which is just something I deal with. Also numbness in my thigh. But all in all, I feel extremely grateful for where I am now. I read on this forum every day and have great admiration for the Stage 4 folks who deal with their illness with an amazing amount of grace. Please email me personally with any additional questions you have. I wish you the very best. God bless you.
CharissaJune 8, 2014 at 8:00 pm #62724ThandsterParticipant
I had a bi lateral groin dissection in December 2012. I do have lymphedema in both legs from it and went through the therapy and everything. One of the big things I found is that how each person responds can be VERY different. You just have to try the different things you like, take it easy as you get a feel for how your body will react, but give it a try. I have found running to be one of the most helpful things for my lymphedema. Granted, I won’t be running any marathons, but 10k’s are doable and I might even try to work up to a 1/2 marathon but we’ll see. The key for me is to not overdo it too quickly. It took me a long time to VERY slowly build up to running 5 miles without pushing too hard. Since I reached that I can push a little more without aggravating things.
Nonetheless, I’m just saying, once you’re healed up, go hike, just not a whole mountain your first time out. Go run, just not a marathon righ away. Do whatever, just start slowly and don’t rush the progression so you have a chance to see how your body responds.
Good luck!June 11, 2014 at 2:09 am #62725
Thank you both! Five miles is plenty of running for me and fortunately I don’t have to drive much. I am feeling much better!July 4, 2014 at 12:06 am #62726 Now that I am one week post-op from a lymphadenectomy, I want to share here the cumulative wisdom I have been able to gather from this forum and other sources.
1. Not all dissections are alike. My dissection was inguinal (the groin) only and resulted in an incision of about 7 inches, crossing the crease between my upper thigh and belly by an inch or so. This is a lot less invasive than incisions involving the pelvis (“ileo”) and other incisions reaching more towards the navel. The good news for me with this incision was that the pain was not unbearable and that I have only needed painkillers a few days. I was prepared for (rather: scared witless of) much more, given the atrocious experiences some people on the forum have related.
2. Movement. My surgeon did move the sartorius muscle (to protect bloodvessels, he says) which results in weird limitations moving my leg. I am told that other muscles will learn to compensate for the loss of function in the sartorius muscle, but what clearly is not working well is lateral movements. I have resorted to lifting my leg with my hands sideways. Having someone hold up your leg will help with other movements as well.
3. Walking. I was made to walk to the bathroom six hours after surgery. That was a horror show: I had to lean heavily on two people and could find no way to get up and down without feeling like my leg was falling off. A real panicky feeling. But…. when I went again 19 hours after the surgery (yes I held it in as long as I could!), I was surprised that I could now bear some weight on my damaged leg and progress has been amazingly fast since then. Getting up and down remained a problem for another 24 hours when a nurse showed me I could actually bend my knee, sit on the edge of the bed and with a little support come to standing. For some reason I was convinced that I could not bend my knee and had been making weird sideways movements, holding myself in a banana curve. It would have been really helpful if a physical therapist or a more knowledgeable nurse had visited me the day after the surgery to help me understand how to move with this new leg. It would have saved me a lot of anxiety because the doctors were first bent on making me go home after one night. I was saved from that nightmare due to extreme nausea, but I knew I was going to have to go home the next day and lay awake all night agonizing on how I was going to get into the car. In the end, it wasn’t so hard. It also helped that we happened to have a pair of crutches which were very useful. I can now walk short distances without the crutches, but need them for standing and going up and down stairs. I don’t know why nobody made sure I had them before the surgery. We also installed supports on both sides of the toilet which made a big difference the first few days.
4. The drain (is a pain). Rather: an annoyance. Tips: use wide boxer shorts instead of tight underwear; use a safety pin to attach the drain reservoir, the clip is not strong enough and when the reservoir falls off, it tugs at your drain tubes; the suction works best if the drain is horizontal; keep the reservoir lower than the incision when possible; have the reservoir in a safe place while sleeping (for me the middle of the bed, for others a pocket); and, most importantly, don’t let it clog up. The last thing is easier said than done when you have a Hemo-Vac drain (as opposed to a Jackson-Pratt “grenade” drain). I really could not do it as the tubes are made of really heavy plastic, so I got a clog, the drain tubes started leaking and I had to go to the doctor’s to get it fixed, knowing that it will happen again. He says he will take the drain out on Tuesday (that would be two weeks after the surgery) but I am not holding my breath.
5. Positioning. This is the instruction: hold your incision higher than your heart. Now how do you do that while maintaining some blood circulation? Lying flat out in a recliner chair gets you close and is more comfortable than flat in bed with pillows under your leg. It is my position now as I type while my Surface rests on my good leg. Again, we were lucky that we had a recliner, but I would have bought one before the surgery if I had known this little secret. I put myself on a schedule of two hours down, 15 minutes moving around which got the doctor’s approval and recommendation to continue for another week. Of course I cheat, in particular while eating and a little time afterward to let the food go down. Some people sleep with a pillow under their legs, but I was told I could sleep flat, which is better for my back. Finally, walking is OK, standing not so, and the worst is sitting in a straight chair with your knees bent. Forget about your desk for a while! And forget about exercising, let the leg heal first.
Don’t forget the other important tips from before: don’t skimp on pain killers, bring chap stick and eye drops to the hospital (if you get dry eyes), and use dish washing liquid to unclog the tubes (if you can). Now the waiting is for lymphedema to develop or not…. one day at the time.July 4, 2014 at 7:43 pm #62727
And here are the things I forgot to mention: wearing a wide dress is an excellent option for the drain – don’t know what to advise the fellas but I would go with a kaftan. Also, to prevent lymphedema: drink plenty of fluids and go for a low salt, high fiber diet. For those of you needing a lot of painkillers, don’t forget the stool softener (at my hospital they would not give it to you until you had a bowel movement first). And now I’ll shut up.July 11, 2014 at 1:27 pm #62728goldfidlerParticipant Hi Madeleine,
Glad to hear everything is progressing well. Thank you for sharing your experiences. As we progress through this journey, it is important to share what we are learning to help the next person.
Be patient and be well.July 21, 2014 at 3:09 pm #62729oldblueParticipant
Thank you all for posting your experiences. I am due to receive my results from SLNB in a week and am expecting the worst (primary 5mm in depth, mitosis 5, vascular involvement).
Reading these posts have already been a great help. I’m sure I will read them again several times.
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