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| My blossoming lock |
Chemo 2 of session 2 - Wow...
I ended the my last blog on the words:
"I am signing off now and will post after next chemo, unless anything else happens between now and then :)"
Well I decided to keep the blog until after the second session of chemo. Everything went relativity smoothly this past two weeks, with a minor hiccough, mid way between chemo, I was called in for the baseline bone and organ CT scan. I have been waiting for this scan since I was informed about the residual cancer cells. The scan is one of those times that have you up and down emotionally. With all sorts running through your head while you wait for the results... it tends to build up in stages which I will describe as we progress through this weeks blog.
Following this first chemo I began to wonder if I had developed some form of Narcolepsy. I was dropping off to sleep at every given moment. At one point Gerry and I were talking, he turned to look at me for answer and there I was, head leaning back on the sofa, head lolling to one side, mouth hanging open on the verge of drooling, eyes shut and out for the count. Gerry put a blanket over me and that was me for the night. Unconscious. .. And no, I can't accuse Gerry of being boring. This was the scenario for the next three to four days after the chemo, sheer fatigue and exhaustion. I actually took this to be great. I slept through what could have been a vomit fest, more on that one later.
One week after chemo, the following Tuesday, I was back in for a needle aspiration. The nurse looked at the left operation site and decided that there was no more aspirating needed, that was good news for me. I am to keep an eye on the whole site as there is fluid that is increasing slightly causing the skin to pull tight and my muscles across my chest feeling like an expanding and contracting elastic band stretching left and right each time I breath, feeling like it could at any given moment snap in the middle, with skin feeling as thought it could tear right open. I hope you haven't just eaten your dinner as you read this, unfortunately this is the reality of what life is now like, fortunately I am here to tell you all, all about it, and hopefully, my experience will encourage you all, men and women to check your bodies, be it boobs, testicles or going for those dignity destroying cervical or prostate gland checks... yes lads, we had to find a test that you guys have to endure just as a little indication of what us women have to face on a regular basis. It is at this moment a t.v. advert from the 80's/90's springs to mind involving a finger of fudge ... OK I'll stop there ;P
The next day, Wednesday the 9th March, I was once again back in hospital. I was back here for my CT scan. Suzanne was very good and accompanied me to the scan. We decided to meet up for lunch first as the scan was not until 2:30 in the afternoon. I had checked that I did not need to fast before the scan, I didn't, so yes a nice lunch was on the cards. I just have to point out here that my anti-sickness tablets had at this point run out. I take very strong tablets for two days after chemo and one milder tablet for the next three days. They finished on Sunday. Today was now the following Wednesday. For the past couple of days I have felt slight nausea but have not actually vomited. Suzanne had picked me up from the house for the scan. We headed towards Dublin debating where we should stop for lunch. Was it to be pub grub, a little restaurant or a drive through. Neither of us fancied the pub, or restaurant, so as we were on the road I suggested a MacDonald's. Neither of us had had a Maccy D's for a long time, not since the scare mongering of pink slime and 8 legged chicken rumours were doing the rounds. Maccy D's it was then in Carrickmines. I was glad we were stopping for the food now, one thing about this chemo is that I do get hungry at meal times and feel weak if I don't get my food. Total opposite of the previous chemo I had been given. The last time I had a MacDonald's we ordered food from a person in one booth, paid that person and picked it up from the next booth. Now its talk to a person in the booth via a speaker of sorts, go to the booth to pay the said person to whom you were talking to via the speaker, and go to next booth to pick up meal. OK... very American, but why put a middle man in between you and the cashier seeing as it is the cashier you are speaking to anyway? Does it make sense? No! Only one explanation, you are to have as little contact with person in the booth, just in case you manage to get them to crack a smile and by the looks of it, that could be breaking company policy... who knows! Two Big Mac Meals, One coke, one milkshake and two Crunchy McFlurries. OMG food fest..... The burger was lovely, I only managed some of my milkshake as it was giving me cheek and jaw ache just trying to suck it up the straw. The mcflurry was pure indulgence - Ice cream with crunchy pieces in it. Lovely. Filling. We ate our food in the park up area, collected the empty wrappers and half drunk shake and mcflurry tubs. We put them into the bag ready to dispose of when we found a bin. That earlier feeling of nausea was making a little bit of a come back and heartburn was starting to kick in. OK... perhaps no more MacDonald's for a while.
There was still over an hour to kill before the scan, so we decided to head towards the hospital so that hopefully I would get in early, well on time anyway. We headed back to the Stillorgan Road and made our way to the hospital. There was now just over 30 min left to the appointment. I checked in at reception and Suzanne and I took seats in the waiting area. A nurse came out and called "Elaine Murphy!" I stood ready to go for the scan, Ah, Elaine, and she handed me a bottle of dye that had to be drunk prior to the scan, luckily I had a picc line fitted in my arm for the chemo, so there was no need for a cannula to be fitted for the extra dye that would be administered when in the scanner. I made my way back to the seat and looked with rolling eyes at the bottle of drinkable dye that was going to make my insides glow like the body of a crash test dummy from a nuclear plant. It was to be drunk over a period of an hour with 10 min spaces between each cup of gunk. I opened the bottle poured the liquid into the polystyrene cup and swigged it back, down it went, I set my phone for the 10 min intervals. I looked over at Suzanne,
"are you feeling at all hot?" I asked her
"No, I'm just right" Said Suzanne "Are you hot?"
"I am, I feel like I'm getting hotter and hotter, is my face red?"
"Yup, very... sit and relax to try cooling down"?
The beeper went off, and I poured another cup. I sipped it a bit slower, once again I felt it going down. I became even hotter than before. In fact, I felt like my head was going to burst open and I could feel my short hair sticking to my now soaking head. I started to feel very bloody restless too.
"Why don't you walk out by the balcony and see if it is any cooler" suggested Suzanne
I did... It wasn't! My legs were starting to shake.
I returned to my seat, poured the next cup of dye and drank it down, the bottle was now less than half full. As I drank it down, now I could follow its journey to my stomach down, down, down it went... Up, up, up I rose, throwing the content of my arms, bottle, cup, bag, glasses and book into Suzanne lap, sweating like a race horse, I charged to the toilet. As I entered, and locked the door behind me, I shoved my hand into my mouth to remove my false tooth - I don't want to be fishing that out of a public pan in a hospital, God knows what has been down there - and I quickly and manically leaned over the loo and projectile vomited into it, not once, not twice, not three times but four massive projectile vomits hitting that pan at the speed of light, bye bye, dye, mcflurry, milk shake and burger. Bye bye breakfast of toast, bye bye yesterdays tea. Now the one problem is, Since breaking my back nearly 13 years ago, and the life long nerve damage, I have the small problem that any stress on the bladder has dire consequences, unfortunately, I was not at home so could not sit on the loo and chuck into a bowl on my knee, ensuring that that all bodily fluids are flushed or washed away. So, here I was hurling for Ireland, legs crossed tightly, praying in my mind that my bladder did not synchronise itself with each retch of my emptying stomach. The waves eased and I straightened up. I flushed the toilet and turned to the sink, turned on the tap, my face and head were warm, I was just about to douse myself with water when... Oh God Nooooo..... I rapidly stood, turned to face the toilet, in this rotational movement my mouth opened and out shot the most violent of projectile vomit I have ever had, it did the perfect arc in the air, and nose dived into the pan, it seemed to last for ever. How in the name of all that is Holy, I did not decorate the walls and floor I will never know. In fact, If vomiting was an Olympic sport I would have been given platinum never mind gold. I just wish the 'Slow Mo' guys could have got that one, NOW I felt better. I flushed, washed my hands and face and and wet my head. someone was knocking on the door, I hope that they were not standing outside right now or I would be tempted to knock on their head, after all I am sure the entire hospital could hear my retching and gurgling. I opened the door and the knocker was gone. I returned to my seat, now looking quite pale. I still had just under half a bottle of dye to drink. I certainly was not going to tell them I had lost the other half to the sewage system of Dublin City, sure it would have already coated my insides on its way both up and down, there you go doubly coated. I finished what was left of the dye and by quarter to four was called in to the CT Scan room. I lay on the bed of the machine, arms above my head and was sent through the small tunnel for the bone scan, a different dye was now injected into the picc line, this dye makes your insides go all warm, well hot, and gives you the sensation of having urinated on the bed... O bugger, not again... lol... they waited a few minutes and once again I was sent through the tunnel for the organ scan. It was over before I knew it. I got up and was told that my results would be with Professor Crown in a week. This was going to be a long week.
I left the scan room and returned to Suzanne who was driving me home, we drove home in an unusually quiet car, the vomiting had left me feeling quite weak. We arrived back in Arklow, Suzanne stopped for a cuppa with Gerry and the boys and I sat on the sofa still quite weak. In my head I was telling myself that the scan would not show up any more cancer.
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celebrating the clear scan
with Suzanne |
The stages:
- The scan will be clear, it won't show up any more cancer.
- No, no more cancer will be found.
- What if there is cancer found?
- What if it has gone to either my bones or my lungs?
- How will I break the news to my family?
- I had better start making a will.
- I had better find and take out a burial insurance. Just in case!
- I had better sort out this mortgage and how the home will be kept if I do go.
- What if this cancer has spread and is no longer curable?
- Speak to those I want as executors of my will.
- Sort out a solicitor
- Jaysus Elaine, cop on, it may not have spread at all, (giving myself a good talking to)
- Friday (two days later) Yes all the above happens and escalates very quickly in your mind - contacted GP, is there any way you can get results from my scan as I have myself looking up the arse end of a jam jar here. (I worded it more politely than that). My GP is brilliant and is the most helpful, kindest and caring person, who does anything in her power to help you. By the afternoon, Dr. June Coates had contacted the hospital and they had informed her that the report from the scan was still waiting to be written up and Dr. Coates said that I was not to worry. We had a lovely chat and I came off the phone feeling a lot better. Jennifer and Mark were round tonight for a few drinks. Mark regaled us with his stories and had us all in fits of laughter. We are lucky to have them as our neighbours. When this is all over we will have them here again with our friends Jo and Paul McDonald - who so kindly brought me a bottle of wine when I was first diagnosed, with the guidelines for it to only to be drunk when I get the all clear. It is still here and still waiting folks. :)
- Saturday - the Scan will be clear - It starts again!
- What if it isn't
- How do I tell my family - images of the hurt and sadness fill every waking and sleeping hour. Nightmares, not of me dying but of the hurt this is causing my family and friends.
- Waking from my sleep sweating, sitting on the edge of the bed trying not to wake Gerry, He has woken far too many times in the night and knowingly put is arm over me when he sensed I was quietly crying. I creep downstairs and sit quietly. Trying to distract my mind with books, TV or going on line.
- Fall asleep on the sofa exhausted
- Sunday - repeat of Saturday
- Monday - Pre Chemo Assessment day - bloods, height, weight and blood pressure. All was going well until the blood pressure was taken 175/150 - phenomenally high. "Elaine is there anything bothering you or are you worring about anything?" "Yes" I said, "my scan results. I have had myself dead and buried 100 times over this last week." "I am not allowed to give out results, but this is different, Elaine your scan came back very clear, the cancer has not spread" I will re- take your blood pressure tomorrow.
- Wild relief, shaking, instant happiness and lighter in spirit, feeling free, feeling that there is a light at the end of the tunnel and this time it is not a train.... or ..... is it?
Referring back to point 16, The ripple effects on others that cancer has, besides the person who is carrying it, is devastating. In fact, in all honesty it surpasses any fear you may have of dying. Time seems to go by in a flash yet as you look around at people, as they go by carrying on with their daily routine, you feel strange. Not strange in a sick/ill way, but in a trance like surreal way. You see life so differently, you have a massive reality check on what is important and what is not. You feel 'detached' from the normality of what makes up everyday life. Of what makes you, you! In one sense you become more assertive. You have to. It is a time when you are extremely vulnerable in one sense yet extremely strong and assertive in another. A sense of acting practically, no matter how unconventional to others, has become a way of life. As I mentioned before, when others say "oh stay positive, don't talk like that" you feel like saying "When you have walked in my shoes, you tell me to be positive" because in reality what these people are saying is, "don't look at the 'bad' side it wont happen, just think of the 'good' side when you have the all clear!' In other words 'stick your head in the sand until it blows over'. The problem therein, lies in the fact that, what if this does not blow over, you have not got your house in order, you have left your husband and children with debt, no funeral paid for, no way of managing. No wills made, no safe haven for them, wolves at the door. No way! that is not happening here. I have been given a reality check. One massive one. I have seen first hand how the death of either the matriarch or patriarch of the family has torn families asunder, siblings at war, time and time again. Friends, colleagues, and some family. How greed, in-house fighting and tearing homes apart have estranged people and I won't have that happen to my children. No... everything will be in order. The reality is, that one day we all have to go, and when that day comes, yes it will be dreadfully sad for all involved, but it will also be unhindered by debts and worry. They will be looked after by me looking after the practicalities of my life. One we all have to face one time or another. My advise is, don't wait for that reality check. Do it now while you have the time, never make the mistake of thinking things won't happen to you. Because people, they do. I returned home on the Monday afternoon after my PCA (pre chemo assessment). I logged onto the PDST (Professional Development Services for Teachers) where I have been on line tutoring for the last couple of months and was marking some work that had come in. My phone rang.
'Hi is that Elaine?'
"Yes it is, who is this?"
"It is Helen from St. Anne's Day Ward, you were in for your PCA today."
"Yes I was!"
"Elaine, Your LFT's (Liver Function Tests) came back very high. I know you are in for half 8 in the morning for chemo, but I have now put you in for a liver scan for nine and I will be doing a Hepatitis screening test (bloods), a formality when LFT's come back this elevated"
"Oh OK, well will the chemo be given tomorrow?"
"As long as the hepatitis is negative it will. We just need to check that there is no liver problem"
"OK. I will see you tomorrow"
Well now, I ask you, Isn't that a surprise? I get the all clear from the scan, now there is a problem with my liver, yet again I am thrown another curve ball. I wonder, will this treatment ever go smoothly? As my friend and colleague, Geraldine said the other evening on the phone, If things did go smoothly I would be concerned. That is true as it would be so out of the ordinary at this stage.
Gerry and I headed for the hospital on Tuesday at 6:45 am. We arrived for half 8, the traffic was beyond chaotic. I checked in and we both took a seat waiting to be called for the hepatitis screening. At about 9:00 am the door opened, a head stuck in and muttered 'Elaine Murphy' ever so fast and disappeared again, nobody even saw who he was. I asked out loud "Did he just say Elaine Murphy?" some nodded others looked perplexed and said 'Not sure to be honest" I got up and left the room, not a sinner in sight. We couldn't even trace who he was, but we finally found out that It was time to go for the scan, Here we were directed from pillar to post, ultrasound sent us to liver scan, liver scan, sent us to another liver scan and ultrasound area. In I went and the scan was carried out, all was clear for damage or cancer. Back to St Anne's. Called for bloods to be taken from the picc for the hepatitis screening. We had to wait a couple of hours for the results so we went for something to eat. I had to fast for this scan so at this point I was ready to eat a horse between two mattresses. Then I recalled the projectile vomiting... Nope a chicken baguette with lettuce, sweetcorn, onion, and mayo will do, and a bottle of water to wash it down. Gerry had eaten at home so just had a danish pastry for now. We ate in silence, each of us with our own thoughts going on, then reading the paper and googling stuff on the phone... Then a thought struck me...
"Hey Gerry, I hope you have been washing your hands after the loo, and before preparing meals, It says here that hepatitis can be caught through the digestion of shit!" Holy God! when will I ever learn ... stop reading stuff of the Internet. I then started listing all the places I had eaten in and realised what a huge amount of trust we put into those preparing a meal for us. Dear God it could have been the shitty hands of the chef in the restaurant on Mothering Sunday. "That was pepper corn sauce wasn't it Gerry?" Bloody hell, I will be OCD before this is all over!
Back to St. Anne's Day Ward, Gerry and I took seats and Gerry watched the TV while I read. We were called out by the doctor who explained the elevated results are because of the chemo. My liver is having difficulty processing the chemo and the function of the liver is slowing down. I am to look at my skin, eyes and the colour of my urine and other. If one is too dark the other very light go to the hospital, if I become jaundiced looking go to the hospital. In the meantime chemo is to go ahead. 'Yay'.
Niamh the head nurse came in and told me to take my first anti-sickness tablet. I was directed to a chemo bed and the first bag was put up. A bag of anti-sickness fluid. The nurse came back with the first part of the chemo. This is the chemo that is put in through the pump (or large syringe), is is very strong and needs diluting for the veins to be able to tolerate it so a bag of saline is fed into the picc at the same time. Following this I was given another bag of flush through to clear the line and veins and Chemo two was set up. Whilst I was sitting patiently I looked down at my black top that I had on, What the heck, Where has all this hair come from? Yep it was me, moulting, yes my newly grown fluff was falling out. The timing could not have been better.... Oh well, at least I know it will grow back. Head shave when I get home.
Gerry and I left the hospital and headed home. Ms Cluskey from the boys school had offered to bring the boys home, so we were able to go straight home. I put the chair back in the car and fell fast asleep. Gerry woke me as we entered Arklow. He stopped at tesco for a couple of items and we headed home. I was shattered. The boys arrived not long after and decided to put a pizza on for themselves. Gerry had sandwiches and I settled for a pot noodle. Too tired for a meal. I was a bit restless, Gerry headed up to be and I remained in the recliner. I had slept so much in the day that sleep was now impossible. But it did come eventually and was comfortable and peaceful.
Gerry had a phone call this evening, he is to be admitted into hospital at 7:30 am Friday morning for part of his intestine to be removed because of a blockage in his intestine leading to his bowel. It will be a strange and quiet few days at home for me, while Gerry recuperates after surgery. I hope he makes a fast and full recovery, we will both be looking after each other now. Novena for a lottery win now so that we can get through this tough time. Fingers crossed all.
I was awake early, and tried to doze. I was up by 7 helping Gerry and the boys prepare for their day. They all left by 8 and I set up my corner for work. I took my anti sickness tablets and steroids. I could feel myself starting to feel drowsy. Suzanne called for a short visit and had a cuppa with me. We chatted about life and how things can change in the blink of an eye. My god, after all, who would have seen this one coming. After Sue left I felt my eyes closing. And close they did for almost 5 hours. I woke in time to finish my work as the course closed today. Everything was done and had gone very smoothly. I had put on a chicken for today, the veg was put in the pan and spuds peeled and cut so a lovely roast dinner was had. Our evening routine done, and I sat down to blog, but I am a funny old fish, Once I start something I can't stop until it is finished. It is now 1:41 a.m. So my wonderfully supportive readers I am going to bid you a peaceful good night, and in the words of the late, great Dave Allen "May Your God Go With You!"
Good night, and God Bless you all.
Hello all, I have left you in peace for a while as life has been flowing on. Considering that this chemo is particularly aggressive/strong, I am coping pretty well. Mind you, I am listening to my body and doing a lot of resting. The post chemo days are spent with plenty of sleep. I take strong anti sickness tablets for two days after chemo and these tend to work for the duration. I do have tablets on standby for the following days, but fingers crossed have not needed them. You can guarantee that I have just cursed that one so.... lol... This past two weeks a very nasty rash has appeared on the back of my head and neck. I have been given a cream to help them disappear, I hope they go soon they look disgusting. I have been keeping myself busy with a lot of activities of colouring, puzzles and ordering acrylic paint to take up painting once again. It is ages since I last did any painting, this will be something of a challenge.
