Facing reality.

It has taken me a full week of indecision, of toying with ‘should I compose a post or shouldn’t I?’ questions. How to word it? How to explain how I feel about my current situation? Should I just keep quiet and keep it to myself? As I’m am a great believer in the old saying, ‘A trouble shared is a trouble halved’ and although I don’t know most of you personally, I am also sure that putting it all down ‘on paper’ as it were, might help to clear my thoughts and my mind, so here goes.

You see, the last three sessions of Carboplatin  I have received have not worked. Not only that, the cancer is now spreading into my bones in my spine. I never do anything by halves, and this particular cancer is a swine. Serous Carcinoma. You can Google it if you want to know more about it. It’s quite rare and a sneaky little so and so, wandering around via your blood stream or lymph nodes into other areas, and is seemingly immune to anything you throw at it.  I was told the news last week by my Oncologist, and although I have insisted on trying another type of chemo before throwing in the towel in defeat, she also advised me that I really needed to sort out Kerri’s future.  We had a heart to heart chat about how it may ‘pan out’ and she warned me that although I might be feeling okay now, once my liver begins to pack up, my deterioration will be fairly swift. Not painful she assured me, but occurring rather quickly, hence the advice that I must sort out arrangements for Kerri’s future.

It is this aspect that fills me with dread. We have been inseparable she and I, for so long and the thoughts of her leaving to go and live somewhere else fills me with a sadness I cannot explain to anyone. I don’t fear dying, its something that we all have to face sooner or later, its a part of living and will occur to us all as sure as eggs are eggs, but the thought of seeing my sidekick leave, knowing I face it all on my own without her is almost too much to bear. Yet, I have to do it, I must know she is settled and happy somewhere before I leave. Truth be known, I’ve been putting it off for so long, I should have encouraged her to move to a shared house years ago but she didn’t want to go, and I secretly didn’t want her to go either. We’re never apart, so much so that people in town who know us both pass me by without recognising me if I’m by myself. It’s come to the point these last few years, as I have begun to have health problems, that I need her as much as she needs me. But I have to be strong and unselfish and think of her and her future needs, not mine.

In the meantime, if the Taxol I am to be given in the next few weeks, doesn’t begin to shrink the little blighter, I will then continue fighting by myself by keeping myself fit till I drop with exercise and walking, and by eating a cancer busting diet. I won’t give in until my last breath, its not in my nature to do so. I shall also keep smiling and making the best of each day as it comes, although without my trusty sidekick that will be more difficult to do.

I will also keep blogging as long as I feel up to it, and as long as I feel the subject matter is interesting enough to write about.

Technogran

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Down the Tube….again.

Our transport is late.  Eventually I have to resort to ringing the ward to find out where it is. K has spent a fruitless watch at her bedroom window for what has seemed like hours, her coat already on, knelt up scanning the cul de sac outside for signs of our transport. Finally it arrives and we make the journey to Huddersfield Royal Infirmary and my eventual venue, Ward 3. It’s not a Ward in the true sense of the word, and seems to be divided into two entirely separate parts by a door half way along the corridor, the first part is the Oncology area and the other is for Haematology. A reception desk greets you as you enter staffed by a friendly receptionist who ushers me into a side room filled with comfortable looking recliner chairs, two of which are currently occupied a lady and a gentleman who, judging by the colour of the contents of the bags slung atop the pumping equipment are both receiving some blood.

We sit down to wait for one of the nurses to fit me with a cannula. I am already late. I note that these particular chairs are actually superior to the one’s in the McMillan unit’s chemo ward, they are higher backed and much larger. Trying out the controls, I am horrified when the chair begins to rise up in the air. It turns out after trying out the controls, that they ‘tip up to help you stand’ as well as reclining. S comes into the room and asks me to place both of my hands in a bowl of hot water in order to bring my veins to the fore. She’ll be lucky! I think silently to myself.  An attempt has been made to make the room look more attractive to be spending time in by the inclusion of two large prints on the wall, the right side has a poppy’s in a field print, and the other a very large map of the world which K is very interested in, spending her time asking me ‘Where’s Spain, or where’s Australia?” as we wait.

A lady of American origin complete with an enthusiastic smile comes bustling in to ask us if we would like a drink.  

“Coffee? Tea? Orange Juice?” she asks, and goes bustling out of the door to a trolley parked outside in the corridor. When our drinks arrive, K has  to resort to holding my cup to my mouth seeing as both my hands are otherwise occupied soaking in the bowl of hot water. At last S returns and pulls up a stool to sit in front of me, and after placing my left arm on top of a bleached white pillow, she begins inspecting my veins in the back of my left hand. She seems to be taking her time, tapping each one carefully as she goes.

“Its a large needle.” she offers in way of explanation, “and I need the best vein.”

“S, you shouldn’t have told me that!” I reply. Eventually she chooses to try a vein which runs along the side of my wrist, stating that it looks the best out of the bunch. I am left handed, but the veins in the back of my right hand went AWOL last year in protest at all of the cannula fitting they had to endure.

In order to take my mind off the ‘big needle’ I ponder to myself how we have become a like a kind of big happy family during the course of last year and this. The staff have become so familiar because they work here at the Huddersfield Royal Chemo department as well as at the McMillan unit, spending their time toing and froing between both, and their days are filled with fitting cannulas in various veins, supervising chemotherapy or blood transfusions for patients who are anaemic, and occasionally dashing to the aid of a patient who has had a bad reaction.  At last the cannula is fitted and the bustling American tea lady escorts us down to the CT department waiting room. (I am not familiar with this hospital, and certainly not this area we are currently in.)

I try not to move my hand because it hurts at the wrist bone where the cannula is inserted. There are a few other patients sat waiting along the sides of the small waiting area, a woman and her husband over in the far corner and whispering to each other, and an older black man. They are both having to drink the aniseed tasting liquid that I have also usually had to drink on my previous visits to have a CT Scan. I wonder if I will also have to drink some as I contemplate the old gentleman sat across from me. He is so thin that his skin looks like tanned leather stretched across his skeletal frame, his fingers as they hold the cup are more like long thin claws, and his legs look to be merely bone through his trousers.  Atop his head he wears a flat cap with small tufts of curly grey hair peeking out at each side, and because his face is so thin and skeletal, his eyes seem to be popping out as he gazes around him.

I am called in by one of the CT staff. They always wear maroon overalls. I don’t really notice much about this scanner, I don’t notice which make, or anything much about the room as I am ushered onto the bed. By now its an all too familiar routine. Head on the raised pillow. Arms placed behind your head.

I’m just attaching the contrast dye” she states “Let us know if it feels uncomfortable.”

The table containing my now prone body complete with hands stretched out above my head, moves backward and through the doughnut shaped contraption.  It begins to hum and spin around.  A familiar female voice states

Breath in and hold.” I comply. “Breath normally.” I comply. The table and I go forwards. The spinning slows. The hum lowers. The table and I again reverse through the doughnut.

“Breath in and hold” Again I comply. That’s strange! I think to myself, I haven’t experienced the awful metallic taste in my mouth and the feeling that my whole body is on fire when the dye is injected. Perhaps they use a different one here! “ Breath normally.”  I also ponder why these machines always use a female voice and why its the same voice no matter which make of scanner you happen to be under. Must be the same actress used by them all, or perhaps  its a certain member of the medical profession?  My heart sinks as one of the staff states over the tannoy,

I’m injecting the dye now Mrs L, so let me know if it feels uncomfortable won’t you?” I wonder to myself what they would do if I began screaming at the top of my voice. They would have to come dashing out of the room that they always retire to. I feel a cold sensation running past my wrist, a horrid metallic taste in my mouth and suddenly my whole body feels as if I’m stood in the middle of a fire. Its a good job that it only lasts a moment or two.

“ Breath in and hold” the machine instructs. I and the table move backward. A whirring sound and the doughnut is spinning above my head.  The whirring stops slowly. The spinning stops. My table containing me moves forward and out from under the machine.  A member of staff helps me to get off the table and I re-join K outside.  Although we are supposed to wait for the American tea lady to escort us back to Ward 3, my cannula is hurting and I need the toilet. We decide to throw caution to the winds and find our own way back.

SOMATOM Perspective

On our return to the ward, the lovely American tea lady bustles around our chairs, asking which sandwiches we would like for lunch, and which pudding, a jelly or a yoghurt? We choose a sandwich apiece, K chooses one of the jellies and I choose a yoghurt. She also brings us a drink in the form of tea. No one arrives to take my cannula out. No one seems in any hurry to see the back of both of us. We both eat our lunch, by now K has adjusted the chemo chair that she is sitting in so that the leg rest is up and I am pretty sure that once she had finished her lunch, she’ll be asleep. The lovely American tea lady is so helpful to everyone, I tell her that she can transfer to the McMillan unit.

I am thinking to myself that the reason why no one is in any hurry to remove my cannula is probably because they are waiting for the CT results to come through before allowing me home, and I prove to be right. Some time after lunch, the registrar visits me and informs me that he has got the CT result and yes, it shows blood clots on my lungs. I have therefore to continue with the daily Fragmin injections (sigh) until further notice and that he has given me a months supply, and also that he will inform my GP that I will need the injections in the future on repeat prescription. As is usual, I tell him that I am not keen on this make of injections, not that I had any love for last years Clexane, but these are not as easy to administer yourself seeing as the needle does not auto retract inside the casing, and I am going to have to be careful not to accidentally touch it when placing it in the sharps tub, and anyway, why have they changed it? (This is why medical staff aren’t keen on me, because I speak my mind on every occasion and ask endless questions about everything.)

It’s exactly the same thing, just a different make we have decided to use, that’s all.” he reassures me, probably silently thinking that he hopes to never have to deal with me again. He also informs me that because this is the second time I have had blood clots, when my chemo is completed I will have to take Warfarin for the rest of my life. Sigh. As soon as he has been to talk to me, S suddenly appears and promptly removes the cannula from my hand, and at last I am free to take a toilet break! We can now wait for our transport back home, and the receptionist kindly escorts us to the waiting area below. Eventually our transport arrives and we are taken home. That’s most of the day gone and I am back jabbing myself in the stomach every day for the foreseeable future.

(P.S. I am not really keen on doing blog posts about my cancer treatment etc, as I am pretty sure that some won’t be keen or interested to read about any of it. However, because its become such an integral part of my life at present, it equally seems silly not to mention it, and besides, some who might be having to begin the same fight might find it useful. I am willing however, that if my readers don’t particularly want to read about any of my treatment, to post all of my Cancer related stuff in a separate blog that you could go to and read if you wanted to, or ignore if not. Please can you all let me know, and then I will keep this blog for my other light-hearted moans and groans about other subjects? Thanks.)

TG

Another year over.

And for me, its been a very eventful one, where I have encountered many new experiences for the very first time. From journeying down a tube for an MRI scan, to having a major operation in a hospital I have never been in before, enduring chemotherapy and all that entails including making some new friends, ending with stabbing myself in the stomach daily with a needle following a blood clot and its been a very interesting year to say the least, and one that, although it had its moments, you will all understand I am sure when I say that I do not wish to repeat any of it again. During that time, my daughter has proved how resilient she really is, and also how she continues to demonstrate her ability to adapt to any situation no matter what.

I simply wouldn’t have coped with any of it without her by my side. She’s been my full time nurse, my companion, she’s been there to cheer me up during the darkest hours, and been strong enough to take the brunt of my moods when I’ve been down. Now I know why she was sent to me those thirty odd years ago when I asked him up there why, why me? when she was born, probably in exactly the same way as any parent does when the child they were expecting to receive hasn’t materialised, and they have received an entirely different child in its place.

And she is in her element when the tide is turned, when its her looking after me, calling the shots, being in charge and she is brilliant at it. I have always stated that had she not had learning difficulties or been saddled with the label ‘Down’s Syndrome’ that she would have gone into some kind of ‘caring’ role, as a nurse or some caring profession. Its in her nature to be caring, and she went above and beyond what many people  would have done whilst I was ill. She was ‘on duty’ twenty four seven at my side, and during that awful week that followed my return home after my operation, when (as it turned out) I had a septic infection, she became who she really is, a nurse nightingale, oblivious to her own needs and focusing only on mine.

TG

P.S  I’m sorry that I haven’t been blogging of late, but intend to return to my usual favourite pastime in the new year, when hopefully K and I can resume our gallivanting around the Yorkshire countryside on numerous adventures and quests, so back to normal! (I hope!)

In and out again in one day.

My latest excursion to hospital, and one that I will admit I was absolutely dreading, was for a kidney stent fitting. Owing to the septic infection I suffered, it had become blocked. Not completely, or it would have shrivelled up and died within three weeks or so causing me to loose the right kidney. Because I like to do my ‘homework’ about any procedure I am to be put through, I went online to find out more about what it all entailed and read some real horror stories of others who had had the procedure done, so as you can imagine, I entered the hospital with a sinking feeling and very reluctantly.

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My big fat leg.

Which leg is the fat one?

It weighs a ton weight. It’s stopping me from exercising. It’s twice the size of the other one. It refuses to bend at the knee. I can’t tie my shoes. I can’t lift it high enough to put my trousers on. I can’t put my socks on. It’s driving me insane. Go a short walk and I’m beggared and no wonder. It weighs a ton.

I have actually lost weight everywhere else. Without my huge leg I would probably be down to 9 stone but my leg weighs about two ton. Whilst the hospital and I argue over what exactly is wrong with my leg, I am getting no exercises and no stocking to wear and so no treatment. Tomorrow I have yet another scan to endure  to see if there is a blood clot causing the swollen leg.  I am beginning to loose count of all of the scans I have had. I must have laid under every type of scanner there is by now. The hospital must have pictures of every single organ, vein, and internal supply of my body you can think of. Well, apart from my brain and I don’t really blame them for missing that part out.  There would be very little to see.

It’s worse first thing after being laid down. K and I discussed whether I could go to sleep with my leg propped up against the wall.  We both decided that what I really needed was one of those hoists above the bed that hospitals use to keep your leg straight after a breakage when its in plaster. I could lay down and K would have to adjust the pulley to raise my leg into the air. I just hope that tomorrow I get some answers and therefore some treatment to bring my big fat leg back down to size.

TG

A brief moment in time. On the mend.

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?

Can it get any bigger?

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

A brief moment in time. A setback.

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!

TG