A week ago today I posted that I was in hospital awaiting my extensive radical surgery the following morning. Thanks for all your well wishes and advice, you are all truly amazing. Well what a week it's been.
I have had full hystrectomy, diaphragm, liver, bladder, spleen etc.. All scraped of evidence of any cancer, my large bowel removed and replaced with an illiostmy. (Think that's how you spell it) and a puncture repaired in my diaphragm which was caused while performing this 9hr surgery.
I spent two days and nights on high dependency because my blood pressure dropped so low they thought I might have an internal bleed and may have to be reoperatred on. I have been fed through a tube up my nose, had various amounts of different drugs and had two blood transfusions.
After arriving on the ward I was extremely tired and fatigued and didn't have any energy to move at all.
Recovery has been a lot of resting, physio (very difficult to push yourself) and slowly integrating food and water back into place. All of which has been hard but manageable.
Today however they have decided to remove my epidural. I cannot believe the pain I now have. I can't even pull myself up the bed to get any sort of movement. I'm sweating like you wouldn't believe and feel like Iv just taken a massive step backwards with my recovery. The pain killers they have given me don't appear to be doing anything but I need to get the right combination they keep saying? It's horrible just laid about in pain. How long will this kind of pain last?? I know I have to cope but it's getting harder not easier,
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Millie-c
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I found tramadol the best option. It made me dizzy and sleepy but that got me through the worse bits. You have had major surgery listen to your body it knows best. Try not to do too much too soon
Goodness me Millie, you have been through it haven't you.... Ask for the strongest painkiller possible. My friend who has chronic arthritis swears by Tramadol - although it makes her drowsy. Still, the more rest you get the better. Sleep your way through it ... Thinking of you and sending much love xx
I'm seeing the pain team this morning to sort medication, fingers crossed. It's been a long time awake through the night. They can't get here quick enough. Cx
You have been through it but hopefully each day will get a little easier and when you are well this will all be forgotten. Focus on a nice Pimms in a nice garden chilling when you have your strength back. The world will seem a good place as youve conquered so much. Xx
I certainly am focusing on better days where I can get out and about and do things nice. I only have to look how quick this last week has gone to know it won't be long before I am another week post op.
Phew, Mandy, you've been through a lot. Take it very, very easy, and keep badgering them about pain meds. Morphine, in some form or fashion, should help. One day, it'll be behind you, and you'll be out and about - remember that this is a temporary state! Much love xxx
Sending you a big hug, you've certainly been through it! hoopefully once you are on the right meds thing will improve for you and you'll be home and resting and regaining your strength xx Kathy
Thankyou Kathy, I am seeing one of the pain team hopefully this morning to try and get sorted. Also having a cup of peppermint oil tea to try and relieve any trapped wind if that is attributing to the pain factor.
I do hope they get your pain sorted soon and you start to feel more comfortable which in turn will aid yr recovery. Hopefully soon all the discomfort will be a distant memory . Thinking of you xx
Dear Mandy, I can't advise on pain relief but wanted to send a message. You've had a huge operation and your body is in pain. Getting through the night time hours is just awful in these circumstances; but you did it. I hope the pain team visit you this morning and agree better pain relief as quickly as possible and I hope this day becomes easier for you. T. X
I'm sure that the pain team will be able to help you, maybe with your own morphine pump. After all the team will want to get you up and moving ( slowly) and the pain management will help with that. I remember when they took out my epidural and yes it did feel like a step backwards and my surgery wasn't as major as yours. But that is a distant memory now, it will get better. Dont try to run before you can walk and I bet in a weeks time you will feel even better. xx
Hi, I was in surgery for nine hours and ended up with a blood transfusion, two bowel resections and 24 hours in special care. My epidural was removed on day four and suddenly it felt that I had been hit by a bus. The pain was horrendous as I had trapped wind and I was crying with the pain. Once they got the pain meds sorted I felt much better and was able to get up and about and by the time I left hospital on day nine I was managing on paracetamol and ibuprofen. Hang on in there sweetie I'm sure the pain management team will manage to sort your pain out. Take care, you've been through a lot, Kerry xx
Good luck with your recovery. I had the same problem with the epidural out too soon. Never had so much pain but they put me on a morphine pump which was great it certainly help until I could start with tramadol. Take care Barbara😃
Dear Millie - you have been through a lot - and managing amazingly to write such a long post! I had some liquid morphine when they removed my epidural - it was in a plastic tube that I squashed and it shot into my mouth! I hope they give you something that helps real soon! Xx
Dear Millie, you are at the lowest point. I am usually quite upbeat but post operative in high dependency was my low moment. I didn't want to be there or in that situation. It did get better though. The pain management team are the key. If you can get that under control you will be able to face physio and the like. There is an Ethiopian saying: "little by little the chicken grows legs" . Little by little, moment by moment you will get there little chick 😀
I have had my dosage of pain killers increased but it hasn't quite sorted the pain yet.
I'm hopeful though. U have to be. X
Hi Millie C, you have been through the mill the past week. I am glad pain management came this morning and are sorting your medicine. I think the worst thing is that you feel achy all over like being hit by a bus. I couldnt understand why I had pain in my back and shoulders but it was due to gas they use when operating. I didnt have epidural but had morphine pump for a few days but it was making me so restless, I asked them to take it out. So was put on difene and panadol etc. You should begin to feel a little better every day. It will seem like a slow recovery but you will notice improvements in eating and going to loo etc. You will rest better once you are home. Get someone to buy you loose crop pants or crop track suit ends and maybe sketchers you wont have to bend and tie. Sending you a big hug
Hi, I remember when my epidural came out day 2 post op. I had collapsed and the consultant felt the epidural was keeping my BP low. I too when from complete pain relief to feeling like I'd been hit by a bus. The pain team are the best in the hospital for pain relief so hopefully they will get you sorted. You have had big surgery and you need to take it sloiw and steady. Don't expect too much too soon. For the meantime, rest, rest and more rest. Remember your exercises though. Take care and wishing you a good recovery. Ann xo
Hope your pain management starts to work soon. So draining emotions and pain. Hugs being sent x
Hi Mandy sending you lots of best wishes hugs and love, hopefully with your meds increase you will start to feel a little bit more comfortable, you've had such a huge op and it will take time to recover, it's very early days so don't push yourself too much, lots of rest, you will get there take care
Just hoping things get better every day. My epidural was in for 3 days and then I had a day on morphine, then Tramadol, then Paracetemol but by Day 5 I was managing to walk to the loo and shower. One step at a time and I know you will get there. xx
Taking each day as it comes. It is getting better just wish u had a fast forward button sometimes.
oh, yes. but time will pass....i remember chemo felt never ending, but finally did finish...and then felt as if id been cut loose from my safety net....its always something!
thinking of you with wishes that each day brings new strength and hope!
Well done on getting through the surgery, I too had extensive surgery and spent two days in intensive care, two in the HDU theno Not the ward. They took my epidural out whilst in the HDU, they are amazing for co trolling the pain, they replaced this with a fentanyl PCA machine, the one where you press it if you need it's. Then gradually dosed this down to morphine. I had been on hig levels of oxycodone prior to surgery so maybe that's why I had fentanyl? It controlled the pain but the hallucinations were terrifying. I was convinced they were running a drugs racket out of the HDU, that the nurse was trying to kill me, that I was in some government test area..... Not nice. As soon as I could I got off that, and as soon as I could get out of bed I walked to the ward and never went back to HDU, I was terrified of it!!! Ha ha, funny now but then it d f wasn't. I would go for morphine and ask for a PCA, I'm not sure why they haven't giv n you one? It saves buzzing the nurse, asking for meds, waiting. And I will only give you what you need.
Hope you are feeling better. And stay clear of the fentanyl, horrible stuff!!!
It's wierd, I was only in hospital ten days, which was great, they thought two weeks, and prob by day 8? I was just on paracetamol. as much as it sucks, try and walk as much as you can. I roamed all over the hospital at night as it was quiet and the walking helped the pain strange as it sounds. Don't be afraid to take the pain killers, that's what they are there for and remember everyone is different, I have had a lot of surgeries, procedures in my life so have a high pain threshold, DONT FEEL BAD for needing painkillers. But, do try and get off the big guns as and when you can. Tramadol was no good for me, allergic, as is morphine. Good luck and I'm sending you huge pain reducing hugs.
I think it's supposed to rain so don't worry about that!!! Make sure you don't get forgotten in there over the weekend, if you are on the mend and don't need a lot of care they can kinda forget you. I got moved to another ward and forgotten completely for four days til I physically went up to the old ward and stood in front of them!!! They were like, whoa, where did you come from????!!!! I laugh now but goodness. It's shocking. S x
I know what you mean, why it should be any different at the weekend is beyond me.
I have plenty of activities to keep me out of mischief so as long as I get my painkillers I will hopefully be fine.
Think I'm gonna watch a nice afternoon film, something romantic or a comedy
Hope you have Nice things planned for the weekend, xx
I cringed when I read your post. You poor thing. I hope the pain will soon be under control. Take care and stay strong. Tomorrow has to be better. Jeannine xxx
Had a really good nights sleep last night, which means the painkillers have started working as they should and I'm not awake every 2 hrs asking for meds.
I had a little walk to the ward desk and back yesterday so think that's what has worn me out. Lol. Xx
I too had a PCA with oxycodone for about 4-5 days following the op but those were constipating so was glad when I could come off it and move on to novalgin and paracetamol (IV initially, then later orally). Glad to hear the meds are kicking in for you now. It may have just taken a few days until you establish your base level of pain control.
Hi Sarah, I'm sure your pain threshold is no lower than mine. I am still struggling with it, but it does seam to be getting better day by day.
I should be out of hospital on Wednesday, which is coming round quite quick.
I had my dressing removed today and half my staples. The wound is healing remarkably well. It is a nice long scar but it isn't as bad as I thought it would be.
Millie you are amazing love. My op wasn't as radical as yours, but I know where you're coming from re managing pain. I do remember feeling much better after a short walk to the loo. Thought I was going to fall over at first, but the nurse told me not to look down... Keep moving, slowly, with very short walks - it keeps your circulation going. Gradually increase it by a couple of steps each day.
I had the same operation as you with the exception that my stoma is temporary. That said, it has saved my life. I would not have survived without it. The detail I wanted to mention is that when discharged from hospital they prescribed a pain med that I had a paradoxical reaction to. The effect was that the pain was magnified, not reduced. This went on for weeks as I figured out that every time I took Vicodin (I am in US) the pain got worse. It all finally got sorted, but be aware it might take some work to find the best pain med for you. I am doing VERY WELL NOW!!!! I am finishing chemo and my CA125 levels dropped to normal after intraperitoneal chemo.
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