Yesterday we enjoyed a wonderful walk alongside the canal in the gorgeous sunshine that we are all currently enjoying in the UK. In a way, it’s not the best weather to walk in, simply because you do tend to get rather hot, but we were all armed with plenty of bottles of water to drink in order to avoid getting dehydrated. After all meeting up in the bus station where we all distributed ourselves into various cars for the journey to the start of the walk, we set off at about 11.15am. It wasn’t too warm at this stage, and the side of the canal that we were on was well shaded by the trees. We have both missed going on the walks of late, and therefore K was having a real problem keeping up with the others. She has never been too good at walking on uneven surfaces, and this part of the canal does not have a very wide ‘walkway’, its just a narrow path with lot’s of uneven grass at either side.
I had a strange birthday yesterday. Spent having yet another new experience sat in a very comfortable chair, being stabbed with needles four times in total on the back of my hands resulting in some lovely blue bruises, (I shall be taken soon for an alien as I will no doubt end up blue all over) and receiving lot’s of different inputs ranging from Steroids, anti-sickness stuff to my two separate chemo’s. K sat diligently at my side, noseying as she always does at everything going on around her.
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!
For those of you who have been wondering why I have not been blogging of late, I had to go into Hospital for a major operation on the 31st January. I expected to be on the mend after being discharged home on the 7th February, but unfortunately on my return home, I took a turn for the worse, and was quite ill for well over a week or so. Quite how I would have coped without my lovely daughter I dread to think. She has been nursing me 24/7 throughout the whole time, sleeping next to me to be instantly on call with cleaning me up and I cannot praise her enough.
Her dedication and patience has been extraordinary, and has gone far beyond what anyone could expect a daughter to do when her mother is ill. When she was born, I can remember asking ( in my head) “ Why?” I now know the answer. To give me 150% and more of her caring, her love and infinite patience.
Of course, K being K she wants a new ‘Jaws’ t-shirt to add to her vast collection and also a CD and she will get them and more.
I am now at last on the mend and gaining strength day by day. The operation was a complete success but I will need to have quite a few Chemotherapy sessions just to ‘zap’ those strays and make sure its all eradicated.
The panoramic photo enclosed in this post were taken from our dining area on the ward at night when as usual, TG couldn’t sleep.
We enjoyed a very long walk yesterday from Shibden Park which took us past the beacon where we were treated to some breathtaking views of the whole of Halifax laid out before our eyes. One of the major reasons why I love living in Yorkshire is how far away you can see on a clear day, our hills and valleys afford such views. Views that you can’t possibly enjoy if you were to live anywhere where the Vista is flat. We thought we were too late to join the longer walk as it was supposed to begin at 09.45am, and we didn’t catch the bus until 10.00am but just as we entered the gates of the park, the others were coming towards us as they headed to the first climbing path up to the beacon, so we joined them.