I appear to have lost September

I've realised it's been well over a month since my last blog post. In terms of this blog I appear to have lost September completely! It's not as if nothing has happened in the last 6 weeks. Totally the opposite in fact!! There has been so much that I feel as though I haven't had a minute to stop and take a breath. If I haven't been madly rushing around then I've been asleep (or in pain) and just had no time to get anything written down about what's happening. Actually, that's a little bit of a lie. I have started two blog posts (both times in hospital but more details of that to come) but not had the energy, either physically, mentally or emotionally to finish them off. So I'm gonna try to give a whistle stop tour of life in my crazy world over the last month or so. 

Hospital

I've had 3 admissions in the last 5 weeks. The first two were because my Hickman line 'fractured' which is a medical term for split. It's a big deal because the tip of the Hickman line sits in the main vein leading back to the heart so if bacteria and/or foreign bodies got in they could very quickly cause a problem and make me super ill. On the first occasion the line was repaired. They literally cut off the bit that was broken, got another Hickman line and glued the two bits together blue peter style! I didn't think it would last and I was right. Within a fortnight the line had split again but because it had been repaired already there was no choice but to take it out and put a new one in. 

One out. One in. Sounds a simple enough procedure but it involves the old line being cut out of my chest and the new line being inserted through a small cut in the skin near your collarbone and the tip of the line being threaded into a large vein above your heart. The other end of the line is tunnelled under the chest wall (ouch!) and comes out on your chest where it is stitched in place to stop it from falling out. The whole procedure takes between 30-45 minutes and I insisted on being sedated. I've had a line inserted before with no pain relief (other than local anaesthetic) and it was one of the worst experiences of my life. I'll admit that it mentally scarred me and now I refuse to even entertain the idea of a line going in without the promise of some serious opiates!

Post new line pain 

The new line went in and for the first day or two it was very painful. If I knocked my arm or chest it would bring tears to my eyes. I expected the pain would die down as normal once the line settled in and the swelling went down. I kept waiting and waiting and 3, 5 even 7 days later the pain was still as intense. Not only that but I was unable to use the line fully and had noticed some small blood clots when I drew blood back into the syringes. However 10 days after the line was inserted I drew a very large clot back which blocked the line. I couldn't get it out and I couldn't get it to flush through. My first instinct was to get a pair of tweezers and try to pull it out but I stopped myself just in time. Tweezers could potentially introduce bugs and cause another line infection and would have been as stupid as the time I inserted a knife into the keyboard on my laptop when one of the keys got stuck. On that occasion the mother board blew up and I knew that my mother would blow up if I got a line infection from being so stupid. I had no choice but to call the hospital to ask their advice but I knew deep down that they would tell me to stop using the line and go in and that that in turn would probably lead to me being admitted. If the line is blocked then it can't be used and if it can't be used I can't have my fluids. And no fluids makes me wilt like a bunch of flowers left out of water in the height of summer. 

I rang and spoke to one of the night nurses who in turn advised me to come into the ward the next day so that someone could look at my line. Dutifully I did as I was told and the nurse tried to unblock it but couldn't. Because it was Saturday there was nothing that could be done until Monday as I needed to be done in a specialist imaging department  (role on the 7 day week NHS I say but that is a whole other blog post!) so rather than keep me in I was sent home to wait. Really I was sent home to dehydrate and by Sunday morning I was feeling ropey. I went to church with my family as I didn't want to not go and let on to the kids how poorly I was feeling. Towards the end of the service I stood up to get communion and as I was walking up the aisle- BANG - I hit the decks. 

I don't remember much about what followed but I do remember having a banging headache (not from banging my head, it's a symptom of dehydration) and feeling hugely embarrassed that I had collapsed in front of the whole congregation. I'm told that the service continued with me lying on the floor  waiting for an ambulance to arrive much to the disgust of some of the parishioners. Other than my pride nothing else was hurt so there was no reason for the priest to not continue but I was still admitted to hospital in order to have some IV fluids. On Monday I was taken to interventional radiology which is the X-ray department that performs minor procedures using imaging technology to assist the doctor. The doctor there unblocked my line in seconds. I had half expected to be told that the line was knackered and that I would need a new one so this was a huge relief. 

Back on the ward I knew that I was now able to go home and was itching to be discharged. However the cogs in the great wheel that is the NHS don't always turn as quickly as we would like so I made the decision to discharge myself. I was well, there was nothing life or line threatening now and I wanted to spend some time with the kids before bedtime so I told the ward nurses that I was going. I don't think that they were too pleased about it but I knew I would be seeing the consultant the following morning in a pre-arranged outpatient appointment so I really wasn't concerned. So I packed my bag, hopped in a cab and went home. 

Feeling down

Being back in hospital brings all sorts of memories and emotions flooding back. Even when I'm in for something as minor as a line repair in the back of my mind I am waiting for something to go wrong or for the doctors to find something else the matter with me and then end up really ill again and be in hospital for weeks or months. Being an inpatient really does mess with my head because certain smells or sounds can remind me of previous stays and bring back horrible memories. I'm told that this is completely normal for someone like me who has been through some seriously frightening, life threatening experiences but that doesn't make it any easier. I also find that when I'm in hospital I become quite introspective and I withdraw slightly from friends and family as it makes it easier to cope with being away from them. I'm normally a very sociable person but I had to learn to spend long periods of time on my own during my long stays in previous years and I had to get to like my own company. It's funny how quickly you revert to being institutionalised. Knowing the time of day by the drug rounds, the meal trolley or the tea lady for example.  And being very annoyed when one of them is late because it throws your whole day out! And as much as I hate being in hospital there is a certain comfort to being back in the familiar environment and being cosseted away from the real world. Especially because at the moment the real world contains so much stress, never ending to do lists that are as long as my arm and the seemingly impossible task of juggling all the things that need to be done within the constraints of my health. 

Moving house

Now this has been one of the causes of many a to do list and a major cause of stress. In between being in hospital Hubby and I have spent weekends packing the contents of our home and our lives into cardboard boxes. At first it was a very organised process with boxes packed with care and labelled up on each side with the room and a brief description of the contents. By the time moving day arrived stuff was literally being thrown into the nearest box and the last few onto the moving lorry were filled with all the crap that was left over and hasn't been packed in time. Leading up to moving day hours were spent on the phone to estate agents and solicitors and I began to dread the sound of my mobile. We moved out of our house on a Tuesday and prior to that we had spent the weekend in the house with the kids so that they could say goodbye to it. They had one last sleepover with Bestie and her kids and friends dropped in to say a final goodbye. 

Leaving was so, so emotional. I hadn't expected it to be as we had already left and been living in Nottingham for 4 months but this time it was final. There was no going back. We were leaving the house that we loved so very much. The place where our children had grown from babies into proper mini people. The place that was always full with kids laughing (and occasionally crying) and mums drinking coffee. The house was never empty and it always seemed to be the place that people congregated. I remember having the kids friends round for tea once, all 14 of them. We've had mega sleepovers for the kids and also for family when there's been an event that's seen them all migrate south. So it really was sad to say goodbye. 

As we walked around our empty home that Tuesday Hubby and I sobbed. At one point we clung to each other and questioned whether we were doing the right thing. Should we stay in Hertfordshire where we had actually been so happy? The house hadn't completed or exchanged so as much as it would have been a right bastard to do we could actually get the guys to unload everything off the lorry and put it back into the house and we could just say that we had made a mistake. An expensive mistake but a mistake nontheless. If we did it would make our friends in Hertfordshire happy but it would upset our family in Nottingham who had only just got used to us being back. This was actually one of the hardest decisions of my life but Hubby and I felt that we owed it to the kids, and ourselves to give Nottingham a chance. I think that one of the reasons it felt so sad to leave was because we didn't have a new house to go to. There wasn't the excitement of knowing that we would be moving into our own home later that day. Instead everything was going into storage and it felt so depressing. Locking the door on moving day was us literally closing that chapter of our lives. 

Setting off to Nottingham that morning I felt physically exhausted from everything that I had done in the house and emotionally drained. I had to say goodbye also to Bestie and another very good friend who had come to help me clean the house. They were superstars that day and I couldn't have done it without them but having to say goodbye was so hard. The only way I could really deal with it was to say "see you in a few weeks" as I planned to come down during the October half term. That way it didn't seem so final. 

A new normal 

Since moving to Nottingham life is very different from life in Hertfordshire. I've left the majority of the friends that I have have made during my adult life. These are the friends that saw me become a mum and then watched as I became a wife. These friends saw me swop my career to become a stay at home mum (and go a bit bat shit crazy in the process and want to go back out to work again!) The same friends that watched me become ill and were there when I reached lows in life that I thought only happened to other people. The friends that were the ones to take the kids to school and swimming lessons and beavers and football and gymnastics and fed them and tried to keep a sense of normality for them. The ones that picked me up, dusted me down and showed me that I could cope with rejoining the world after months of being in hospital. So saying goodbye to them has been an incredibly big thing. 

I can now count the number of people I can call a proper friend and that lives nearby on one hand. I'm attempting to reconnect with people that I haven't seen for a long time or only saw once or twice a year and having to put a lot of effort into making friends with the mums in the playground. But hardest of all is trying to find my feet now that I no longer have my best friend by my side. To go from seeing somebody three, four, five times a week (and sometimes more!) it seems so strange to now have this huge Lois shaped hole in my life. It's not that we ever did anything that exciting together. But that's the beauty of a best friend. They can make even the weekly trip to the supermarket fun and take the monotony out of yet another trip to the park with the kids. They make the day a little bit brighter just by being there. That's not to say that I don't miss any of my other friends and I don't want to do a disservice to them or their friendships but Lois and I spent so much time together. The kids miss her kids and I think Hubby misses the ally that he found in her husband. We are all having to adjust to our new life. 

Another massive change is the commute that Hubby now faces. Instead of living 5 minutes down the road he now drives 1.5-2 hours a day meaning that he leaves the house while we are all still asleep and very often gets back well into the evening. It didn't matter so much during the summer holidays but now the kids have to be in bed at a reasonable time he often arrives home at bedtime meaning that he's missed out on seeing them or to look at it another way, I've had to cope with them all by myself. At the moment living with Mum and Dad means that it's very rare that I'm ever truely alone but once we move into our new house the time between coming home from school and bedtime will be a one parent show. And that's scary. 

I guess I've always known that I had Hubby to rely on and that if I was unwell or anything happened to me or the kids he could be home in minutes. Now that's not the case and I wonder how on earth I will cope. I know that in his place I have both my family and his but when I'm ill or having a troublesome time with one of the kids the person I need and want is Hubby. And for the vast majority of the day I don't have him so my loneliness is magnified. I hope, no, I know that I will adjust to this new normal but it doesn't make it any easier right now. But one thing that I know will help is to get all of the millions of things going round in my head out and on paper or rather typed up in this blog. So no more radio silence. Even if I am exhausted I will try to get something, anything typed up to share so that I won't get texts asking if my blog is finished now. Because it's not. I'm just getting ready to write the next chapter. 

NB x