Suffocating or Drowning - is there a difference?
I know in my last post, I was at the beginning of telling you about our wonderful and lovely trip to South London and how it was all full of excitement and energy and it all sounded so hunky dory and then there was a lull. Followed on by an even longer lull until some of you who are on our address books or who access the forums got ominous texts and messages about my latest escapade so now what do I do? Do I carry on telling you about London, knowing I won’t have time to post about that and leaving you all waiting to hear what has happened since arriving at home or do I just go straight onto the drowning/suffocating drama?
I think the drowning/suffocating escapade wins as then someone else can always add the London bit on afterwards as they were there then and weren’t when my body was busy drowning itself.
I knew something was not quite right on Friday 31st October but thought nothing of it at the time. I don’t normally make a habit of missing trains whilst sober (- drunk - maybe another story) but not at noon and with a hubby and kids in tow!!!
We’d rushed down to the local railway station to start the journey home with a few minutes to spare to find that the train to London had been cancelled!!! We then spent the next 30 minutes sitting and waiting for the next train. That was fine and then we had 20 minutes to wait between the train we got off and the one taking us home. We were travelling on a group ticket so were supposed to be altogether. Hubby took Laura onto the train to save seats and I took the boys to buy comics which we did successfully and I sent them off to join hubby and daughter on the train departing for home. I never checked or don’t remember checking that they had actually got to the right platform. I was then supposed to get tea for us adults and get onto the train. As I got to the ticket gate, my heart missed a beat. That was my train to home just going round the corner. Had the boys got on the right train - platform 9? (Hoped there was no platform nine and three-quarters or else they may have gone off to Hogwarts). Had they gone off with my cross stitch and memory books safely and my new Nintendo DS?
After frantic phonecalls, we established that the family were altogether apart from me. The guard had advised them to stay on their train till home and the next train leaving London would be the fast one and if I caught that then they would only have about 15 minutes to wait for me.
I have no explanation of what I did after I sent the boys off to get the train. I’m just grateful they were sensible and got on the right one!!!
My journey home was also not without incident. I was a bit bothered that hubby was travelling with 3 children with only 2 tickets of a group save and I was alone with 4 tickets!!! The guard on hubby’s train was kind and understanding whilst mine was too agitated to notice I had the wrong kind of ticket!!!
I was sitting forward facing in a quiet zone carriage and was busy looking at my cross stitch. I’d noticed the guard seemed flustered as he was checking tickets and didn’t seem to want to wait around to see railcard’s but apart from that seemed OK. Suddenly, there was an announcement over the tannoy “this is the guard speaking. I need urgent police assistance”. I looked up as did everybody else in the carriage to see the guard talking to 2 young men who were not acting aggressively or speaking loudly standing in the doorway of the train. True, the train was due into Winchester in 5 minutes but I didn’t realise undercover cops actually did patrol trains or was this all some kind of stunt??
A man of about 40 started walking down the carriage carrying a Bag For Life - no leather jackets insight then. Undercover cops dress and seem different to when I mixed with them in the 1980s as a student nurse. The guard called over the tannoy “it’s OK. I can see a policeman now” but 2 other men with little rucksacks on their backs, carried on walking towards the lads and the guard. They told the single policeman they‘d handle the situation and sent him back to wherever undercover cops hang out on trains.
At this point, the young lads became a bit more agitated and were proud to announce that they were not allowed out of Winchester and were on probation and were refusing to buy tickets for the train. At Winchester, the 2 men grabbed the lads by their elbows and marched them off the station!!! So these questions sprang to my mind - are there always undercover cops on trains from London? Was this some kind of practice drill? Why was the poor guard sent up on his own? What was happening?
This occupied my time till I got to my home station where I did manage to get off at the right place and was greeted very enthusiastically by the family. The first thing Woody said was “it’s all my fault. I shouldn’t have left you. I would have made sure you got on the right train.” It was lovely to know he cares for me that much but I really don’t want him blaming himself for something that I did. He maybe growing up but it was not his fault that I’d missed the train.
We were home about 3pm and making spooky faces out of pumpkins and dressing up for Halloween so the usual routine.
They seemed to enjoy the making of the pumpkins but AJ and Woody were quick to come back as it was a bit cold and windy and I think they’d realised that they’d got as many sweets as they’d be allowed.
I unpacked a bit and went to bed about 10pm
Saturday 1st November - I slept through the morning. Hubby woke me at noon and however much I struggled, I could not keep awake, and so, at 1pm he tried again. This time I did manage a bit of breakfast before falling asleep. At 3pm I dragged myself out of bed after being woken again and found I had a temperature of 39 deg Celsius and felt as though I had a chest infection.
Of course, when I phoned the hospital wanted me in straight away. Luckily, our 2 caravanning friends were there at home so they took the children and hubby took me to the hospital.
I came straight into the ward by which time my temperature was just over normal - as usual - but my ankles and left arm were swollen. I had a chest xray which showed a chest infection and they took blood in case I had a line infection.
I just felt weak and not quite right but not anything you could put your finger on. I had the antibiotics and carried on weakly round the ward making tea for others and me and re-warming my wheat bag.
Monday night - I just went to bed with a feeling of dread and foreboding. I had no idea why or even if it meant anything.
Tuesday 4th Nov - 415am - went to loo - I know you really needed to know that part and then made a cup of tea and went back to sleep.
610am - woke up with a fright and couldn’t stop coughing and just felt as if I was being suffocated. I could not take a breath in. I could breathe out but not in. It was the same feeling that I had when I nearly drowned whilst canoeing in the Ardeche River in 1986 when I got caught in a stopper wave and when I nearly drowned when I was 7 when I was being taught how to swim in the sea. I could feel the water in my lungs and see these black face mask like things in my vision. I just either wanted someone to stop it all and just completely suffocate me and finish me off or give me a massive dose of oromorph to calm down. I really wanted hubby there as I knew he was the only person that could get me to breathe more slowly. I could hear myself make my little moaning, repetitive sound that I make when in pain and was rocking to and fro. I was also freezing cold. It felt as if I was all alone, and infact was temporarily as the nurse had gone off to get the machines to take observations. I hated being alone and this was the worst time in the day to be taken this ill. It was the time for intravenous antibiotics and observations and getting people onto commodes and not the time for someone to stop breathing!!
If I was frightened before, it was nothing in comparison to the newly qualified nurse’s face when she took my oxygen saturation measurement. That was 60% - rather a long way off the accepted figure of 95% and above. At that stage, I wasn’t sure what scared me the most - 60% or the look of sheer panic on the nurse’s face. She should have known better than to look so frightened - don’t they teach them anything about communication skills and body language now when they train.
Someone gave me a salbutamol nebuliser and the doctor was called who thought that maybe I’d been given too much fluid as it is known that my heart function is not brilliant and my ankles and left arm were really swollen and red. She gave me some diuretics (water tablets) intravenously and with that combination plus 100% oxygen through one of those re-breathe bags and at least I felt I was only mildly suffocating and not drowning.
I did manage to go back to sleep until about 830am when the same thing happened again but more mildly this time. I suppose as I was already breathing the oxygen, it helped and prevented it getting into a full blown drowning/suffocating scenario again.
They gave me more diuretic and nebuliser and my breathing settled but my heart rate and blood pressure bothered them. Well, a blood pressure of 84/42 and a heart rate of 146 is not very life friendly is it? They decided to do an ECG just incase I was having a heart attack but all that it showed was my heart was going too fast!!! They subsequently stopped the salbutamol by the nebuliser method - the high powered oxygen one but said I could have it by the usual inhaler way.
I saw my consultant about an hour after this who thought that it was probably an infection that caused the collapse of my breathing but they couldn’t rule out a further cancer spread. He seemed quite excited that I had had such an unusual way of becoming ill and went off merrily. I feel after over 3 years of us regularly seeing each other, we have finally got to feel comfortable with each and he knows I will not only challenge him on a medical or treatment issue, verbally but my body also has this knack of doing it anyway in the way it behaves with my cancer. Why am I always so different? I’m sure I started out in an ordinary fashion!!
He ordered a chest xray which I had done in my bed much to the radiographers surprise as he had only seen me walking around and laughing the week before so was rather surprised to see me so oxygen dependent.
The chest xray showed my lungs were full of fluid but on the inside and not between the lining of the lungs (pleura) and the ribs where most ‘normal’ people get their fluid and it can be drained off then - painfully but can be done. Trust me to get the sort where my lungs fill up like a sea sponge and so it can’t be squeezed out. The water tablets are the only option and the salbutamol nebulisers were helping more than the inhaler but there again, I can’t go around with a heart rate of 140!!!
The rest of the day went as a blur but I know they kept rechecking my blood pressure as it was still down in the 80s/40s all day and they were scared of giving me too much fluid in case it made things worse again.
Wednesday - the same thing happened at about the same time but at least this time I was already using oxygen so it wasn’t such a crisis. However, my blood pressure remained around 80/40 until Friday when it went back to a more normal 100-120/60-75.
I have no clear memory of Tuesday/Wednesday but I know I was too weak to get out of bed on my own and move without oxygen and according to my hubby, I was a bit confused and spaced out.
The nursing care again was not great and I was not offered any help with washing etc until Thursday. The cleanliness was even worse and the domestic/housekeeping side was so understaffed and even if they did turn up, they hardly put any effort in to their work. Infact, if it hadn’t been for my family and friends I’m not sure if I’d have had any care at all. They made me drinks and hubby or someone fed me as I was too dependent on oxygen to try to feed myself and get my oxygen back on my face on my own. My mum, sister and a couple of friends would ‘put me to bed’ each night. I suppose I made things harder for myself by insisting that I got dressed each day but mentally, it is so important to me to get dressed if I can.
The ‘putting to bed’ routine was literally helping me get into my pjs, teeth brushing and getting into the bed instead of being on top of it and sorting out my lymphoedema sleeve etc so hardly difficult.
All week, the specialist registrar seemed to be drip feeding me bad news. Firstly, that it didn’t look like it was an infection causing my breathing to be so poor but the cancer growing and then it was my blood proteins were too low and so the cell walls were breaking down which was why I had the swollen legs and fluid in my lungs. Then by Thursday night, it was that I would not be strong enough to have chemo and that I was at the end of treatment.
On one hand, I felt I could not go on, as physically I did not have the strength to go on fighting but Christmas was only just over 6 weeks away and I’d been so sure I’d get to that and now I wasn’t sure if I’d get to the end of the day. It felt so unfair after all this fighting to get chemo to suddenly be overtaken by an infection and not the cancer.
However, there was the weekend to get by/through and I wasn’t going to stop fighting yet. I was close to giving up but not yet - I’d promised I’d say goodbye to my children and I hadn’t done that nor had I finished the cross stitch for my hubby or would you believe, the memory books for my children - it’s a work in progress!!