It’s amazing isn’t it? Battling through the last few weeks, struggling with my body seeming to pack in, throw a strop and have a complete post op breakdown, I have to confess to feeling rather down and low of late. However, today my spirits are lifted and not only by the glorious sunshine and warm temperatures we have been enjoying of late! What has brought about this magical transformation? Well, the answer to that question can be found below in photo form!
Been out stretching my swollen legs today. A slow walk down to the park accompanied by K which rewarded us with some wonderful sights of crocus’s and daffodils all vying with each other for a glimpse of some welcome spring sunshine. It was a very enjoyable walk, not too cold, and did me the world of good especially to breath in that gorgeous fresh Spring air, though I was absolutely beggared when we landed home! Enjoy the arrival at last of Spring everyone because I am!
It’s all been a brief moment in my lifetime. A chapter in my life that had to be experienced whether enjoyable or not. Have I been just unlucky? In six months time will I look back on it as an experience I just simply had to endure? Will it make me stronger as a person? I still have the chemo sessions to go through of course, another new experience for me.
My legs need sorting out at the moment, they are swollen and painful, especially the right one, and so are stopping me from being as mobile as I would like to be. I have obviously acquired Lymphedema as a result of some twenty lymph nodes being removed from the groin area. My right leg won’t bend at the knee or the thigh, so I can’t bend down to put socks on etc. But its all a challenge. A battle to be won. You have to fight it. I am exercising them, keeping them moving, trying to help; the waste products that are usually circulating around my legs via my lymph nodes to drain away and continue to be discarded.
I still feel three sheets to the wind brain wise. I can’t seem to get my head around things, but its probably because my sleep pattern is now kaput. I am going to bed at ten, waking up at 01.00am for a toilet break, going back to sleep until 04.00am where I then wake up and can’t go back to sleep, so I usually get up. I then spend any time I am sat down nodding off, which is strange as normally I never ‘nod off’ whilst sat up in a chair.
K is now needed only for assistance with putting socks on and shoes, some helpful feet and lower leg massage and cups of tea making duties. She has been rewarded for her dedicated nursing duties with a new ‘shark bite’ t-shirt and also a new CD of 100 hits of something or other. She deserves more of course, a medal would not go amiss, as she has had the patience of Juab all the way through nursing me back to health. I have told everyone about her and how I couldn’t have managed without her, everyone who would listen. Would any other daughter have done as much?
So to end this journal of my brief moment in time (wonder if I will ever see any of my ward companions again?) I am including a photo of K in her new t-shirt.
Take Care! TG
It was later that first night that my problems first manifest themselves. I tried desperately to make it to the toilet, honest I did, but…..and things were to get decidedly worse. Some of my Grape juice I had drunk promptly came back up, and I ended up spending about three hours or so glued to the toilet. Now our toilet is not meant or designed to be sat on for prolonged hours at a time. My legs ended up white, swelled and completely numb. K bless her heart helped to clean me up, fetched the sicky bowl, changed my pajamas and was to take on the role for the next few days of my 24/7 personal nurse.
I have always said that if she hadn’t been born Down’s Syndrome she would definitely have gone into the caring profession, either as a nurse or even a doctor. It all comes so naturally to her to be caring, though she has always said that she wouldn’t be able to cope with the sickness and toileting, she ended up coping far better than even I thought she would. There was no hesitation, she was an absolute star, and had she not been there I would have had to dial 999 and readmit myself into hospital. As it was, we coped together. I rang the ward sister for advice.
“You’ll have to ring your GP” she told me, “sounds like you have some ‘overflow’ so ring your GP tomorrow.” Hmm. If there was anything left of me tomorrow! I did just that. Spoke to a doctor who said that the District nurse would call. She called in the afternoon with one of the practice doctors. She gave me an enema promising that it would solve all the problems as I had some ‘stoma’ stuck which was causing the ‘overflow’ and once I had’ been’ all would be well.
Later that evening, the enema worked and I went. However, rather than solving everything, all that happened was it was like opening up the floodgates! I was still also being sick as well. Where was it all coming from? After all, I hadn’t been eating since my operation! If I hadn’t known better, I would have thought that whilst on the operating table, someone had filled my entire digestive system with water. Tons of it. I was slowly getting weaker and weaker. I felt drained. I looked terrible.
On the Wednesday we had an appointment to see Mr N at the McMillian unit at Halifax Royal. We had transport booked but I honestly was dreading it. Would I get there without having some kind of accident? When Mr N and the other staff saw me, you could see the shock on their faces. I was a mess! Mr N examined me and I told him everything that had taken place since arriving home. He concluded that somehow I had picked up an infection and I was placed straight away on two antibiotics to be taken over the next eight days. A sample was also taken to be sent for testing. I felt terrible and the whole hospital visit was a trial to endure.
I began taking the antibiotics as soon as I arrived home. It took a few days for them to begin to work, but slowly but surely I began to pick up. The ‘runs’ slowed down and then stopped. The sickness stopped. I began to feel better. My appetite returned. I began to feel better as each day passed. At last it was over and my digestive system began to return to normal. I did come out in an Eczema ‘flare-up’ everywhere, my body reacting as it usually does to anything it doesn’t like but that was no problem to cope with.
Trouble was, this set back ended up setting me back in my recovery, some two weeks or so as my planned ‘walks around the block’ etc had to be postponed whilst I was in that state. I’m thankfully on the mend now but the whole incident was like being in some form of endless nightmare. I asked Mr N had he had patients go though the same thing or was it just me and my ‘oversensitive’ digestive system? He assured me that yes, it did sometimes happen to others, I had been unlucky unfortunately. I think my digestive system just simply shut down. It stopped working. It went on strike. I’m just glad its all over!
On Thursday, our merry band of fellowship, brought together in comradeship; and kindred spirit for a few days and nights spent together in a closeness that many would never experience, began to break up. First to leave was Mrs C. We parted company with hugs and good wishes given as if we had known one another for a lifetime. Even her close family, who’s acquaintance had been made at visiting time, made fond farewells as if we were all close friends. It was strange. We would in all likelihood never see each other again.
Mrs C was soon replaced by C who, following the very swift cleaning of Mrs C’s bed following her departure, was soon its new occupant. We hit it off straight away. She was a teacher in Halifax at a High School, so really not all that far away from me in the grand scheme of things. In the meantime, M was very down. Remember that she had hoped to have keyhole surgery and therefore be returning home on Friday at the latest. As it had turned out, this was not to be, and she was very down and upset, Of course we other members of the Ward 8 fellowship tried our best to console her.
Personally I was not in a bid fat hurry to be discharged from the hospital. In practically the opposite scenario to M, where she had a large family who were all eager to get her home and would be no doubt assisting her, I would be arriving home to an empty flat until such time that I could arrange for K to return from respite. Not exactly a pleasant prospect I am sure you’ll agree. In fact the best day for me to be discharged would be Monday, as the Day Care staff could then collect K from respite and then bring her back home in the afternoon.
Br was the next to depart. And to M’s delight, she was also allowed to leave on the Friday, which left me and C the sole occupants of Ward 8. Mr N paid me a visit that day to announce that I could go home on the Saturday. I asked if it was possible for me to remain until Monday and explained my dilemma about being able to get K home. I was in luck. There were plenty of empty beds over the weekend and hardly any admissions, so I was free to remain until Monday. I would make the best of it and have a wonderful bath every day! With lots of bubbles!
C and I ( she had had her keyhole surgery on the Friday) were now firm friends. It was during one of our conversations about the fact that I would be having follow up chemo, that I learned that she had had chemo following breast cancer. She told me about the wigs you could have to wear, and showed me a picture of herself with long hair before her chemo therapy, one taken after she had her hair cut very short for the chemo, and a recent one at a wedding. All of her photos were on an iPhone. I was very impressed by not only the quality of the pictures but the iPhone itself. Hmm, I thought. I wonder if I could get one when our current contract runs out? I was very impressed.
During Friday night, we had a scare. The fire alarm went off. It didn’t scare me as I was already awake, but C nearly jumped out of her skin. It seemed ages before the fire brigade arrived to turn it off. It turned out it was a resident up in the Penthouse suite who had accidentally knocked the alarm whilst showering. ( Yes readers, this Burley Suite has a sort of hotel on the top floor where people can stay.)
The weekend flew by. I still wasn’t eating much, I still wasn’t sleeping very well, spending large amounts of time at night walking around the corridors and usually frightening the nurses as they sat at their station. Just a good job I didn’t have a white nightgown!
Both C and I were going home on Monday. After breakfast, we packed our suitcases and were ready for the off. My transport arrived and C and I promised to go for a coffee if we bumped into each other when she came to our town, as she frequently did.
The journey home was uneventful. The ambulance driver carried my suitcase upstairs for me, and I then spent time unpacking and putting all my things away. It was strange to be back home. I longed for K’s return in the afternoon. It was no fun being home alone.
True to their word, the next day our catheter’s were removed, all cannula’s no longer required were also removed from the back of our hands. One amusing incident with one of mine on my left hand involved my asking the first nurse that visited my bedside to remove it because it had been hurting so much during the night. “What Cannula?” she asked, looking at my cannula free hand. Where was it? It was no longer there! Either I had been so irritated by it during the night that I had removed it myself, or it had fallen out It was duly found on the floor at the side of my bed.
Firstly I was asked if I would like a bath. Would I? The nurse went off to prepare the bath and fill it with delicious bubbles for me to languish in. She then returned and escorted me to the bathroom, where I had to sit down on the hoist whilst she carefully removed my pajamas and fetching knee high socks which you all have to wear to stop blood clots forming in your legs. That accomplished, I was hoisted above the bath, the hoist was then lowered into the bubbles and the bath raised. I was given some wipes with which to wash myself with. My scar, reaching from my belly button downwards was covered in some kind of hard ‘lattice worked’ cover. I was assured that it was okay to get it all wet, in fact the bath would help to ease any pain and discomfort.
The nurse told me to take as long as I wished and left me with a push button with which to summon her when I was ready to get out of the bath. Oh what heaven! It was exactly the right temperature, I felt relaxed and could have gladly remained there all day but M was also due to experience this delight, and so eventually I pressed the ‘nurse’ icon on the button, and she returned to get me dressed. Returning to the ward, I did not get back into bed but instead sat thankfully on the high seat chair next to my bed with a pillow at my back for comfort.
In fact, I stayed out of bed and in the chair for most of the day. I was reluctant to get back into bed, and only did so if I felt really tired. We were also encouraged to slowly walk down to the dining area at meal times to eat, not that I felt like eating anything. I didn’t feel hungry at all. I did keep trying to eat, but the only food that I seemed to be able to enjoy at all was the ice cream and the rice pudding. Everything else tasted dire. I couldn’t drink the tea at all, or any of the fruit juice, I seemed to have permanent acid reflex in my throat and constantly there, and eventually had to ask for some ‘Gaviscon’ to help relieve it Everyone else seemed to be eating some of the meals, but I felt so full I simply couldn’t bring myself to attempt more than a few spoonful’s of anything.
I was at a loss what to drink. I had asked my sister and brother to bring me some of my favourite Grape Juice in, but this just seemed to add to the acid discomfort in my stomach. I told the doctors all about it. It did sometimes happen. The Gaviscon did help. I would just have to stick to plain water for mow which seemed to be the only thing I could drink without making the acid reflux worse. I also began to walk around the corridor whenever I could. Slowly at first, taking my time and holding onto the grab rail that ran all along the length. This I knew should help to get things moving internally which let’s face it, was the mainstay of conversation with every resident on there. Wind. It was as if we had all been filled with it whilst down on the operating table, like so many car tires blown up too far.
Now we were all paying the price. It had to be got rid of, it was the cause of our pain, staff also were preoccupied with the subject as well. Questions were asked. Had we heard any grumblings or rumblings? Had we passed any wind down below? Physiotherapists called with exercises for us all to do to help to get the whole thing moving along. ‘Lay on your back on your bed. Raise both knees up. Slowly rock both of your knees from the left to the right and back again. Try to go as far left and right as you can. Repeat about 10 times.
We also had a very enjoyable visit from a lady from McMillians who was a qualified masseur and who gave M and myself a hand massage and Br a foot massage. We couldn’t have the foot massage as it would have meant removing our stockings which was a task to be avoided at all costs.
Well, I should sleep tonight! I thought to myself after enjoying such a busy and energetic day. Of course I didn’t sleep any better.
“Sandra. Sandra! It’s all over!” Someone said. I opened my eyes. Several blue clad persons, including my lovely young student nurse were hovering in around my bed. There eyes were fixed on something behind me to the left. I was offered a drink of water from a straw clad beaker. My lips and mouth were dry. I drank it thankfully.
“We’re a little concerned about your blood pressure Sandra, its very low. We’ll have to raise it before we can take you back to the ward.” Hmm. My blood pressure is always low I told them. It never reaches 120/80. As I was to eventually find our later, the epidural also lowers your blood pressure. At one point as I lay there, it dropped to 65/ I was encouraged to drink more water. Eventually my blood pressure was high enough for my return to the ward. As my bed complete with me in it entered the ward door, I remembered to wave to my fellow companions. From that point it was an endless round of being constantly monitored, especially my blood pressure which again took a dip.
M still hadn’t gone down to theatre. I kept drifting into and out of consciousness. On my left hand were two cannulas with two more on my right. One of them on my right hand was really painful. I had a catheter attached to my bladder. From the waist down I was completely numb. I could feel nothing at all. B’s magic concoction of epidural pain killers certainly worked! Eventually, M left for her operation. She was hoping that Mr N could do a keyhole which would mean she would be home in a few days. I kept drifting off to sleep. I had told everyone not to visit today as I would be ‘three sheets to the wind’ I asked the others what time I had returned. Roughly about dinner time. I had been down a while then!
Various persons came to examine me, ward staff kept a constant vigil of checks blood pressure, temperature, breathing, oxygen levels, checks on my bladder function, etc and this continued into the night. Eventually M returned, some four hours or so later. Apparently following her op, her breathing had not been too good. She has Asthma, and in a similar law to my blood pressure, they would not return her to the ward until her breathing was stable. She and were kept a very close eye on all through the night, and were constantly monitored.
“In the morning, we will remove your catheter so that you can get out of bed and sit in the chair. You can also have a bath or shower as well. We want you to begin to move around as it helps to ease the wind pain.”
Blimey! I couldn’t wait. I wasn’t very comfortable in bed, there is only so much gazing up at the air conditioning outlet above your head that a body can take, and as nice as the recent bed bath by two of the nurses had been, the thoughts of being able to soak in a gorgeous mass of bubbles in that huge bath was really something to look forward to. Roll on tomorrow!
We came together four strangers, having never met before, to share for a few days and nights a closeness and comradeship brought about by the common experience we all went through. Ward 8. The fellowship of Ward 8. M across from me in the opposite bed arrived on the same day, and would have her operation on the same day. Br on my right hand side had been here some days, and was desperately trying now to eat and drink something and keep it down. Mrs C over in the far corner had also been here some days. She was helpful and filled M and I into the nuances of the ward, showed us where everything was, explained about baths, showers, meal times, and other tips for making life bearable whilst being part of this exclusive club.
On the Monday of our arrival, M and I were hardly left alone in order to have time to think. One body and another visited the side of our beds, taking blood pressure, temperature, blood, administering two, yes two enemas to each, one about tea time and the other later that evening. I was not concerned at all about tomorrows impeding operation, but I do hate waiting, so I was so glad to be informed that I would be the first down in the morning at 08.30am. That suited me fine! M was informed that hers would be later, about dinner time.
A lovely young student nurse came to ask me if I would mind her watching my operation? Of course I didn’t mind at all. I was also asked if the removed organs could be used in research and again I consented to this. Everyone seemed to be asking the same or similar questions as they filled in their paperwork. Mr N my consultant came to see me as did his registrar. All were polite and friendly and were willing to answer any questions or reassure you of procedures to be taken. Before you knew it, it was 22.00 and time for lights out. Hurray! ALL the lights were turned out including those along the corridor! It was nice and dark, my favourite state to induce sleep, and I turned onto my front and slept like a log on my tummy, because I was sure it would probably be a long time before I could do so again after tomorrow.
Before I knew it, it was 05.30 am and my usual time to wake up. I quietly tiptoed out to the toilet outside our ward door, and then had a circular walk around the H shaped ward simply for something to pass the time. I knew I wouldn’t get back to sleep, once awake that’s it. I made my way to the Day room and turned on the TV. I didn’t want to disturb the ladies in the next ward to the day room, so I had to keep the volume low. I watched the news. Another few turns around the ward to kill time and then it was soon time for me to walk down with my lovely student nurse to the operating theatre.
“I’ll give you all a wave on my return!” I told my three trusty companions on Ward 8. “See you soon!” I had been told I would be down there about two and a half hours or so. We walked down together chatting away about this and that, I remember a lift was involved somewhere along the journey. I was in a fetching gown tied around the back. On arrival at the preparation room, we were greeted by staff all dressed in blue hats, blue tops and blue trousers. I had to lay on a trolley type bed on top of a green ‘bag’ with grab loops at each side to enable them to lift me from there to elsewhere. My student nurse needed to change into her operation outfit and she went off to find one that fit her. She returned looking just the part though her top half was a different shade of blue to the trousers.
Next, I was wheeled into the anesthetic room where I met ‘B’ my anesthetist who was in a very jovial mood, cracking jokes left right and centre. He had me sit up whilst he administered his ‘concoction’ of pain relief drugs into an epidural in my spine, then I lay down whilst he injected the anesthetic into my hand. I drifted off to the land of nod.