Getting Better Slowly
I was now having one good day, probably overdo it slightly because I was feeling so good. And the following day I would have a bad day and take it easy and then another good day.
By Thursday 7th March the nutritionist and surgeon were still not agreeing on the food drip. By 10.00am the nutritionist came to see me and said that I was allowed to try eating jelly and soup (basically liquid food) but nothing with fruit or veg that is solid. She also said that to give me a boost over the weekend I was to be put on a food drip. They were to put a permanent line in for the food drip. I am guessing that it was more than likely that the surgeon had put his foot down.
Later that day I went down to get my permanent line put in. They said that they will not put it in my neck as they only do that as a last resort because of the risk of infection is higher. It went into my right arm at the top. It was an anaesthetist that was to put the permanent line (PIC line) in. I did not realise that to put one in was like a small procedure. I thought it would be just like putting a normal cannula in. They make a small incision (he said he would just stretch it so not to cause too much scarring) and put the PIC line in. I would not watch him put the line in. I did not want to see it until it was in my arm. I was watching the screen where I could see my arm and where the line went. On the first attempt it went up to my neck and the second it went the other way (the right way) this can easily happen. I was then taken to X-ray so they could check it was all ok. Whilst I was waiting for the X-ray I saw 2 friends one of them had broken their hand. I must have looked bad because they said that they knew that I was in hospital but did not realise how bad I was. The PIC line was purple. Which happened to be my favourite colour. It felt a little odd but I knew I would get used to it. The best way to describe it is when you have your arm above your head on pillows so it is slightly raised or when you lay your head on your arm and just before it goes numb. The line would also make it feel really weak.
I still needed a cannula because the PIC line was to be only for the food drip (TPN). The only people that could now insert the cannulas were the anaesthetists because no matter how much anyone tried my veins just kept collapsing. I only had one now instead of two. This is because they could only get one in so when I had the Paracetamol drip I would have to have the morphine drip disconnected.
I have already mentioned about the cannula only lasting two hours but another time they managed to get a cannula in but nothing was going through it so it had to be removed.
I knew I was in for a few sleepless nights because as I was on the TPN I was to have Observations every 4 hours and blood sugar tests every 6 hours. The reason for this is because TPN can increase your body’s blood sugar levels. If this did happen I would have to have an insulin injection. I half expected this to happen as both types diabetes are common in my family. Every year I get myself checked and last year they said I was a just clear. One day I got the munchies and had a lot of sweets, I warned the nurse that my levels may be slightly higher because of this. Luckily they were not and the blood tests stayed at a steady constant. They also take you off the fluid drip when you are on TPN.
For the first 24 hours I was to have ½ the amount in the bag and a whole bag after that. The bag was huge each bag was due to last 24 hours. I was also to have a bag of vitamins ½ hour before the next TPN bag was to be put on.
On Friday 8th March they took me off the morphine to see how I got on. They were talking about removing the NG tube but because I was still feeling nauseous and still required aspiration they said they would leave it a bit longer.
When I got up that morning, after the morphine drip had been removed, to walk to the shower room I was in so much pain, but it was down in below in my privates. I told the nurse and she suggested to have a wash in my chair. After I washed I was helped back to bed. The nurse had a look at me and said that it was inflamed down there and went to get the gynaecologist. She took some swabs. Sometimes when you have a catheter in for a long time (sometimes it can be less time) you get prone to infections. The test results came back that it was only thrush where the catheter had been rubbing. The gynaecologist did not want to remove the catheter that day as I was finding it so hard to walk. This is the first ever time that I have had thrush. I was to rest that day.
Later that day the physiotherapist (one that I had not had before) came to see me. I think that she was having a bad day because when I told her I could not do anything that day as I was having a really bad day. After all it was the nurses that put me back to bed. The physiotherapist said “well you have to do your exercises or your wont get better” before storming off. This annoyed me as I would have done them if I was not in so much pain. After all I was going to walk to the shower room this morning. The day before I had walked to the entrance doors to the ward and done my exercises (20 tiptoes and 20 squats) I was even doing the breathing and coughing exercises they had told me to do. I ended up laying down (well I say laying down I was still in a semi-sitting position because of the NG tube) most of that day but in the evening, I think it was just before visiting hours I sat up slightly more and had a coughing fit. Now that hurt my abdomen muscles.
On the morning of the 9th March I had had a bad night the night before with the nausea I was feeling. My thrush was now easing because of the cream they had given me, the nurses had to put it on as I could not do this yet. I managed to have a shower that morning still being washed by the nurses. After my shower they said that they would have to weigh me later that day I asked if they could do it whilst I was up just in case I was too tired later. When I was weighed I was 45kg I knew that this was not good because of the look on the nurses faces. I asked how much that was in stone. It was 7.02 stone. I had not been this weight since I was a kid, even last time I was ill in 2009 I was 7 ½ stone.
When the doctors came round that morning they said that we could take the catheter out as well as the NG tube. I aired my concerns that I was still feeling nauseous and that I was worried about being sick. The doctor said that we would see how it goes and if I was sick they would put it back in. I said that when it comes out they will not get anywhere near me with it again, I would have to be put asleep or sedated. He said that he will put it in himself as he is very good at putting NG tubes in and it would not be like last time when I was awake. I do not care how good anyone is at inserting NG tubes they will not get one near me whilst I was awake. I felt like he was not listening to me about my feelings of the NG tube. After he left I cried and one of the nurses asked what was wrong I told explained what the doctor had said. They managed to calm me down and said I may feel better once the tube is out as that could be now what was making me feel sick. They were now getting no bile out when they aspirated me. They said that if I did not want the NG tube back in then they could not make me have it. This made me happier.
I called out in pain as they took my catheter out. It does not normally hurt but because of my thrush it did. The nurses told me that they would leave the NG tube until the pain had eased and if I needed to go for a wee then I should call them and they would walk me to the loo.
I wanted my NG tube out before I had lunch as I thought if it is taken out after I have eaten I would be sick. So a few hours later just before lunch they took the NG tube out. It made me gag as it came up. When it came out the first thing I wanted to do strangely enough was go for my first wee. It stung a bit when I went due to the thrush. They had to measure how much I went to make sure that my bladder was working properly after the catheter. When they took the NG tube out I held one of the nurse’s hands as another took it out. To keep my mind off the movements of the tube we chatted about the nurse/care assistant that I was holding as she had a day off the before and had gone ice skating. Something I had never done before. She said that it was the first time she had gone backwards. I also had my first bowel movement in weeks after the NG tube was removed.
That was the day that my aunt had done the family meal and my husband went to that before visiting me. Whilst he was visiting me the cannula in my left arm went. The nurse asked if I wanted to try soluble Paracetamol as that now was all I needed the cannula for. Save trying to get another cannula in. I said I would give it a go. This also meant that I could have Paracetamol 4 times a day now because it is not IV. I tried the soluble Paracetamol but it bloated me out so much that I needed an anti-sickness injection. I said I would try swallowing a tablet next time if that was allowed. I was still very dubious about people, including myself, touching my stomach. I was very protective about it as you could imagine. I was told the next day I may have half my staples removed.
Today my TPN was delayed, I was given my vitamins but for some reason my TPN had been delivered to the wrong ward and they could not find out where it was. This was not as major as what it could have been because I was now eating ok now. And they were taking of taking me off the TPN the next day anyway, all depending on what the surgeon said. That night I had really bad munchies again and was now allowed to eat normal food.
I woke up the next day (Mother’s Day – 10th March) starving. I had a soya yogurt as soon as I woke up, I had asked my husband to bring in my soya yogurts and jelly as I did not rate the hospital jelly it would make me feel ill where it had not set properly. I then had breakfast when the breakfast trolley came round. I could only eat little and often but at least I was eating and able to keep it down.
I was getting much better now and was able to walk to and from the shower room/toilet on my own. But I still needed help showering. I could feel me getting stronger and stronger every day. They stopped my TPN that day, I just had to finish that bag. I was now completely wireless. They still wanted to keep the PIC line in just in case it was needed and so they could get blood if they needed to.
I thought that night I would be able to sleep better that night as I could sleep on my side like I do at home. I was wrong with this theory because my side muscles had become weak like the rest of my body.
On Monday 11th March I was able to have my first shower on my own. Being in the shower room on my own I remember looking at myself in the mirror and not recognising myself. There was this drab dull haired (my hair had always been fine but it now looked really thin and terrible), anorexic (again I have always been skinny but never this thin), prisoner of war. Surely that person looking at me was not me. I looked at my legs and they looked like a pair of old mans skinny legs. I had no muscle at all. I was now feeling better OK yes I did have the odd bad day but they were getting less. It was just a matter of building myself up again back to normal.
I was over the moon when the surgeon saw me that day and said that he was really impressed on how well I was doing and that he was happy for me to be discharged as long as the gynaecologists were happy with that. When the gynaecologist came over they said that they were too happy for me to go home. During that day I was also seen by the physiotherapist (one of the nicer ones) and she could not believe how much I had improved. She mentioned about Friday, I explained why I could not move that day and she was understanding about it. I then asked if she wanted to see me walk. She said yes, she was happy to discharge me from physiotherapy but told me that I must continue with my exercises. Then the nutritionist came to see me and she said to continue to eat little and often and whatever I wanted. Eating little and often comes easy to me anyway as being a waitress I am always nibbling at food so am used to little and often. It is normally a full meal that I struggle eating.
I was to have my staples removed before I went home. The sister said that it will not be as bad as I was thinking and that she loved taking staples out. I can imagine yes it is very therapeutic removing them, in fact I would think that I would enjoy removing someone’s staples. When she had me sitting on my bed and went to remove the first one my stomach subconsciously went down to get away from her. I chose not to watch or listen to it so I pulled the TV close and put on my headphones on as loud as I could bear. The sister was to take half out now and half out later removing every other one. After about half way through the first batch it was getting unbearable. She suggested a break and for me to have Paracetamol and Diazepam to relax the muscles before we tried again. When the tablets kicked in we tried again whilst I watched Puss in Boots she removed the staples. There were approximately 30 staples, without them my stomach looked much better.
They left my PIC line in right up until 5.00pm just in case I needed it, they were taking no chances. I guess because when I go downhill I go down quickly and suddenly with no or little warning. I did not watch the PIC line be pulled out but I did look at it when it was out I could not believe how long it was. I had to keep my arm elevated for 15-20 minutes to prevent bleeding. That would have been typical all the time I have been in hospital and they struggled to get blood and they day I am discharged and the PIC line removed I start bleeding to death (I am sure I wouldn’t bleed to death but would bleed a lot). So I kept my arm elevated.
My husband came to pick me up at 6.30pm, I was discharged with Paracetamol, Diclofenac (for the pain), Metoclopramide (anti-sickness) and clotrimazole cream (for the thrush). The Metoclopramide was not on the ward so it had to be ordered from the pharmacy which could take a long time. As I had not required anti-sickness recently we agreed to not bother with it. Especially as I had not eaten dinner as I wanted to eat at home and was starting to get hungry. By 7.00pm on 11th March I was on my way home. As I left the nurses on duty gave me a hug good bye.
I was signed off for a further 6 weeks and not allowed to drive, lift things, hoover, iron (not that I done the ironing anyway, my husband loves doing it which if fine by me) or anything else. I knew that I was going to struggle with this as I am normally an active person and was feeling much better. But to be honest it was easier than I thought it would be as my body would tell me when to stop. The first week whilst my husband was at work my mum would pop round to help me, it was a very long 6 weeks.
By Thursday 7th March the nutritionist and surgeon were still not agreeing on the food drip. By 10.00am the nutritionist came to see me and said that I was allowed to try eating jelly and soup (basically liquid food) but nothing with fruit or veg that is solid. She also said that to give me a boost over the weekend I was to be put on a food drip. They were to put a permanent line in for the food drip. I am guessing that it was more than likely that the surgeon had put his foot down.
Later that day I went down to get my permanent line put in. They said that they will not put it in my neck as they only do that as a last resort because of the risk of infection is higher. It went into my right arm at the top. It was an anaesthetist that was to put the permanent line (PIC line) in. I did not realise that to put one in was like a small procedure. I thought it would be just like putting a normal cannula in. They make a small incision (he said he would just stretch it so not to cause too much scarring) and put the PIC line in. I would not watch him put the line in. I did not want to see it until it was in my arm. I was watching the screen where I could see my arm and where the line went. On the first attempt it went up to my neck and the second it went the other way (the right way) this can easily happen. I was then taken to X-ray so they could check it was all ok. Whilst I was waiting for the X-ray I saw 2 friends one of them had broken their hand. I must have looked bad because they said that they knew that I was in hospital but did not realise how bad I was. The PIC line was purple. Which happened to be my favourite colour. It felt a little odd but I knew I would get used to it. The best way to describe it is when you have your arm above your head on pillows so it is slightly raised or when you lay your head on your arm and just before it goes numb. The line would also make it feel really weak.
I still needed a cannula because the PIC line was to be only for the food drip (TPN). The only people that could now insert the cannulas were the anaesthetists because no matter how much anyone tried my veins just kept collapsing. I only had one now instead of two. This is because they could only get one in so when I had the Paracetamol drip I would have to have the morphine drip disconnected.
I have already mentioned about the cannula only lasting two hours but another time they managed to get a cannula in but nothing was going through it so it had to be removed.
I knew I was in for a few sleepless nights because as I was on the TPN I was to have Observations every 4 hours and blood sugar tests every 6 hours. The reason for this is because TPN can increase your body’s blood sugar levels. If this did happen I would have to have an insulin injection. I half expected this to happen as both types diabetes are common in my family. Every year I get myself checked and last year they said I was a just clear. One day I got the munchies and had a lot of sweets, I warned the nurse that my levels may be slightly higher because of this. Luckily they were not and the blood tests stayed at a steady constant. They also take you off the fluid drip when you are on TPN.
For the first 24 hours I was to have ½ the amount in the bag and a whole bag after that. The bag was huge each bag was due to last 24 hours. I was also to have a bag of vitamins ½ hour before the next TPN bag was to be put on.
On Friday 8th March they took me off the morphine to see how I got on. They were talking about removing the NG tube but because I was still feeling nauseous and still required aspiration they said they would leave it a bit longer.
When I got up that morning, after the morphine drip had been removed, to walk to the shower room I was in so much pain, but it was down in below in my privates. I told the nurse and she suggested to have a wash in my chair. After I washed I was helped back to bed. The nurse had a look at me and said that it was inflamed down there and went to get the gynaecologist. She took some swabs. Sometimes when you have a catheter in for a long time (sometimes it can be less time) you get prone to infections. The test results came back that it was only thrush where the catheter had been rubbing. The gynaecologist did not want to remove the catheter that day as I was finding it so hard to walk. This is the first ever time that I have had thrush. I was to rest that day.
Later that day the physiotherapist (one that I had not had before) came to see me. I think that she was having a bad day because when I told her I could not do anything that day as I was having a really bad day. After all it was the nurses that put me back to bed. The physiotherapist said “well you have to do your exercises or your wont get better” before storming off. This annoyed me as I would have done them if I was not in so much pain. After all I was going to walk to the shower room this morning. The day before I had walked to the entrance doors to the ward and done my exercises (20 tiptoes and 20 squats) I was even doing the breathing and coughing exercises they had told me to do. I ended up laying down (well I say laying down I was still in a semi-sitting position because of the NG tube) most of that day but in the evening, I think it was just before visiting hours I sat up slightly more and had a coughing fit. Now that hurt my abdomen muscles.
On the morning of the 9th March I had had a bad night the night before with the nausea I was feeling. My thrush was now easing because of the cream they had given me, the nurses had to put it on as I could not do this yet. I managed to have a shower that morning still being washed by the nurses. After my shower they said that they would have to weigh me later that day I asked if they could do it whilst I was up just in case I was too tired later. When I was weighed I was 45kg I knew that this was not good because of the look on the nurses faces. I asked how much that was in stone. It was 7.02 stone. I had not been this weight since I was a kid, even last time I was ill in 2009 I was 7 ½ stone.
When the doctors came round that morning they said that we could take the catheter out as well as the NG tube. I aired my concerns that I was still feeling nauseous and that I was worried about being sick. The doctor said that we would see how it goes and if I was sick they would put it back in. I said that when it comes out they will not get anywhere near me with it again, I would have to be put asleep or sedated. He said that he will put it in himself as he is very good at putting NG tubes in and it would not be like last time when I was awake. I do not care how good anyone is at inserting NG tubes they will not get one near me whilst I was awake. I felt like he was not listening to me about my feelings of the NG tube. After he left I cried and one of the nurses asked what was wrong I told explained what the doctor had said. They managed to calm me down and said I may feel better once the tube is out as that could be now what was making me feel sick. They were now getting no bile out when they aspirated me. They said that if I did not want the NG tube back in then they could not make me have it. This made me happier.
I called out in pain as they took my catheter out. It does not normally hurt but because of my thrush it did. The nurses told me that they would leave the NG tube until the pain had eased and if I needed to go for a wee then I should call them and they would walk me to the loo.
I wanted my NG tube out before I had lunch as I thought if it is taken out after I have eaten I would be sick. So a few hours later just before lunch they took the NG tube out. It made me gag as it came up. When it came out the first thing I wanted to do strangely enough was go for my first wee. It stung a bit when I went due to the thrush. They had to measure how much I went to make sure that my bladder was working properly after the catheter. When they took the NG tube out I held one of the nurse’s hands as another took it out. To keep my mind off the movements of the tube we chatted about the nurse/care assistant that I was holding as she had a day off the before and had gone ice skating. Something I had never done before. She said that it was the first time she had gone backwards. I also had my first bowel movement in weeks after the NG tube was removed.
That was the day that my aunt had done the family meal and my husband went to that before visiting me. Whilst he was visiting me the cannula in my left arm went. The nurse asked if I wanted to try soluble Paracetamol as that now was all I needed the cannula for. Save trying to get another cannula in. I said I would give it a go. This also meant that I could have Paracetamol 4 times a day now because it is not IV. I tried the soluble Paracetamol but it bloated me out so much that I needed an anti-sickness injection. I said I would try swallowing a tablet next time if that was allowed. I was still very dubious about people, including myself, touching my stomach. I was very protective about it as you could imagine. I was told the next day I may have half my staples removed.
Today my TPN was delayed, I was given my vitamins but for some reason my TPN had been delivered to the wrong ward and they could not find out where it was. This was not as major as what it could have been because I was now eating ok now. And they were taking of taking me off the TPN the next day anyway, all depending on what the surgeon said. That night I had really bad munchies again and was now allowed to eat normal food.
I woke up the next day (Mother’s Day – 10th March) starving. I had a soya yogurt as soon as I woke up, I had asked my husband to bring in my soya yogurts and jelly as I did not rate the hospital jelly it would make me feel ill where it had not set properly. I then had breakfast when the breakfast trolley came round. I could only eat little and often but at least I was eating and able to keep it down.
I was getting much better now and was able to walk to and from the shower room/toilet on my own. But I still needed help showering. I could feel me getting stronger and stronger every day. They stopped my TPN that day, I just had to finish that bag. I was now completely wireless. They still wanted to keep the PIC line in just in case it was needed and so they could get blood if they needed to.
I thought that night I would be able to sleep better that night as I could sleep on my side like I do at home. I was wrong with this theory because my side muscles had become weak like the rest of my body.
On Monday 11th March I was able to have my first shower on my own. Being in the shower room on my own I remember looking at myself in the mirror and not recognising myself. There was this drab dull haired (my hair had always been fine but it now looked really thin and terrible), anorexic (again I have always been skinny but never this thin), prisoner of war. Surely that person looking at me was not me. I looked at my legs and they looked like a pair of old mans skinny legs. I had no muscle at all. I was now feeling better OK yes I did have the odd bad day but they were getting less. It was just a matter of building myself up again back to normal.
I was over the moon when the surgeon saw me that day and said that he was really impressed on how well I was doing and that he was happy for me to be discharged as long as the gynaecologists were happy with that. When the gynaecologist came over they said that they were too happy for me to go home. During that day I was also seen by the physiotherapist (one of the nicer ones) and she could not believe how much I had improved. She mentioned about Friday, I explained why I could not move that day and she was understanding about it. I then asked if she wanted to see me walk. She said yes, she was happy to discharge me from physiotherapy but told me that I must continue with my exercises. Then the nutritionist came to see me and she said to continue to eat little and often and whatever I wanted. Eating little and often comes easy to me anyway as being a waitress I am always nibbling at food so am used to little and often. It is normally a full meal that I struggle eating.
I was to have my staples removed before I went home. The sister said that it will not be as bad as I was thinking and that she loved taking staples out. I can imagine yes it is very therapeutic removing them, in fact I would think that I would enjoy removing someone’s staples. When she had me sitting on my bed and went to remove the first one my stomach subconsciously went down to get away from her. I chose not to watch or listen to it so I pulled the TV close and put on my headphones on as loud as I could bear. The sister was to take half out now and half out later removing every other one. After about half way through the first batch it was getting unbearable. She suggested a break and for me to have Paracetamol and Diazepam to relax the muscles before we tried again. When the tablets kicked in we tried again whilst I watched Puss in Boots she removed the staples. There were approximately 30 staples, without them my stomach looked much better.
They left my PIC line in right up until 5.00pm just in case I needed it, they were taking no chances. I guess because when I go downhill I go down quickly and suddenly with no or little warning. I did not watch the PIC line be pulled out but I did look at it when it was out I could not believe how long it was. I had to keep my arm elevated for 15-20 minutes to prevent bleeding. That would have been typical all the time I have been in hospital and they struggled to get blood and they day I am discharged and the PIC line removed I start bleeding to death (I am sure I wouldn’t bleed to death but would bleed a lot). So I kept my arm elevated.
My husband came to pick me up at 6.30pm, I was discharged with Paracetamol, Diclofenac (for the pain), Metoclopramide (anti-sickness) and clotrimazole cream (for the thrush). The Metoclopramide was not on the ward so it had to be ordered from the pharmacy which could take a long time. As I had not required anti-sickness recently we agreed to not bother with it. Especially as I had not eaten dinner as I wanted to eat at home and was starting to get hungry. By 7.00pm on 11th March I was on my way home. As I left the nurses on duty gave me a hug good bye.
I was signed off for a further 6 weeks and not allowed to drive, lift things, hoover, iron (not that I done the ironing anyway, my husband loves doing it which if fine by me) or anything else. I knew that I was going to struggle with this as I am normally an active person and was feeling much better. But to be honest it was easier than I thought it would be as my body would tell me when to stop. The first week whilst my husband was at work my mum would pop round to help me, it was a very long 6 weeks.