Tuesday, 13 November 2018

One year on...

Well, I posted a comment the other week about whether or not I should do an update to the blog and it seems that people would like to know how we're doing so here goes...

Sunday 28th October would have been Nat's birthday and we're only a week  away from the anniversary of her death, so I am inevitably thinking back to where we were a year ago. Although there are certain moments and occurrences which I will never, ever forget, if I'm honest it's a bit of a blur, and I've looked back over the last couple of blog posts to remind myself of what went on and give some context. 

Firstly, we're doing well, or at least I think we are. The boys started school in September, the same one that Thomas went to and Izzy is at (in fact their teacher also taught Thomas) and have taken to it like the proverbial ducks. Getting them all up in the morning is still a struggle, but I have no issues with getting them to go in on their own, they mix with the other kids well and love going to the childminder after school, where they also mix with other older children as well as Izzy. They still talk about their mum in a very matter of fact way; although I had warned the teaching staff they would do this, I think they were still slightly taken aback at quite how blunt they are about it. I'm very happy with this and am encouraging them to talk as openly as they want. They're growing into strong, confident boys though, and I am finally learning to accept that that might be something to do with me...(still struggling with imposter syndrome but not as much).

Izzy continues to blossom and grow. She's doing very well at school, is clearly intelligent but also very, very creative. She has the support of a counsellor, paid for by the awesome Team Verrico, and seems to be pretty sorted. I was disappointed earlier in the year when she decided she didn't want to keep going to the drama group on a Saturday; this is something she excels at, although i don't know where it comes from. However, she's going to be going back after Christmas I think as she has more confidence in herself now. We went camping in the summer to a small festival in Lincolnshire, very much family oriented, and on the Saturday lunchtime there was a talent show for the kids. I suggested Izzy might want to have a go but not to worry if she didn't want to. She put her name in anyway and when she was called, up she went and sang Fireflies by Owl City, one of hers and Nat's favourite songs. It was beautiful, and it took every ounce of strength I had not to have a total meltdown on the spot. It was an excellent weekend allround, apart from arriving in 32 degree heat to put the tent up, and take it down in 16 degrees and driving rain. English summers for you. The kids had a great time so we will be camping again. And she won, obviously...

Thomas is a typical 14 year old lad; he's nearly as tall as me now though, and fancies his chances a bit, so I have to keep reminding him who's in charge! He's doing much better at school, has a girlfriend and has gone back to playing football which I was very pleased about, not because I particularly enjoy football, but it gets him out of the house and off his Xbox... On the plus side we do talk, and I am doing my best to make sure that I'm available to him when he needs me. It's not always that easy; he can be an irritating little shit at times but his heart is in the right place and I know that this is a phase he will have to go through, teenage brain and all that. 

I had some very, very dark days, particularly in February and March, I had pretty much given up on Uni as I was struggling to engage with the subjects and those that I did were too triggering. I was in several Facebook "support" groups for widows but was finding them terribly depressing; I guess how you deal with grief depends on your underlying personality to a large extent, and we are all very different in our approaches, barring some common themes, but basically I didn't want to be reminded of how shit my life was every time I opened my phone. Although I was still going in to Uni to social events, to do my radio show and suchlike, there was no joy to it. Yes, it was very early days and I should have been easier on myself, but in the end I made a decision that something had to be done, I had to display some positive behaviour to the kids. Despite all my protests to the contrary, Nat always insisted that I would move on, so that's what I did.

Now, I'm not saying this was my greatest ever decision, but I put myself on Tinder, and Plenty of Fish. What. A. Nightmare. Being out of the loop so to speak for 20-odd years didn't help but shit those places are scary! I had a couple of coffees with some ladies, one of whom told me all about her gastric band surgery, and another I'm convinced was a man. My anxiety went off the scale, I couldn't eat or sleep properly and was convinced that I had done completely the wrong thing, I wasn't ready and should just be content on my own for the rest of my life. And that was only after two weeks...

Then I had coffee with someone I had been chatting with through the widows group. Then another coffee, then lunch, then more lunch and basically she has just this weekend properly moved in. I'm not in any way a spiritual person, neither is she, but it is like we were put in front of each other at a very specific time and under very specific circumstances. Her husband died of cancer 4 years ago, she has no kids, is nearly my age and we share the same taste in everything that is important, and most that isn't. The kids love her; I specifically didn't go out looking for a 'mother' for my children, this was supposed to be for me, but it just so happens that she's brilliant with them. We were very cagey at first, didn't want it to be weird for them, let them take the lead but she is such an engaging and warm person that I don't think there was ever any doubt that they wouldn't take to her. I had better be careful now, in case she ever reads this... Suffice it to say, we have had an extraordinary 6 months as a family, full of love, laughter, some tears and a lot of gin. I went back to Uni this autumn and have found it much, much easier to concentrate and engage with the subjects. I also do karaoke every week, but the less said about that the better, I just find it extraordinarily liberating, having not sung in public for about 25 years!

We're looking forward to Christmas now, we will be starting some new traditions as well as remembering the old ones and then onward and upward into the New Year. There's not an hour goes by when I don't think about Nat, but I'm not sad. I feel sad for the kids, that they'll not see her again and the twins won't know what an amazing mum they had, although we'll keep talking about her and remembering. I'm taking Thomas and Izzy out of school next Tuesday and we'll go to one of her favourite places, when the twins are older and better able to understand they'll come too. I'm still angry though; angry at the shitty horrible disease that put everyone through so much and, and I'm ashamed to admit this, angry at Nat for leaving me with these four. 

Here's what I struggle to get my head round the most; J and I have both been through a horrible period in our lives and have now come together as what can only be described as joyful. Had we not been through those times, there are no other circumstances in which we'd have met, so is this the Universe "rewarding" us for getting through it, or just a very happy accident? Or maybe I should just shut up and enjoy it while I can.

Makes you think though...

Peace and love everybody, and have a Happy Christmas and New Year



Andy x

PS If you have a couple of quid spare and are wondering what to do with it, please consider donating to either Team Verrico, a small charity who do extraordinary things, or Marie Curie; both these charities will remain in my heart forever.

Saturday, 10 March 2018

Hi everyone, this is Andy here again with what I hope will be a useful update for you.

The clock has just clicked over into Mother's Day. Right now I'm in a hotel room in a small fishing town in the South West of Scotland. On my own but that's how I wanted it. I came across yesterday to carry out Nat's final wish, to have her ashes scattered at a beach near the town where we got married and where we subsequently had family holidays which gave us so much pleasure.

I'll backtrack a bit. I didn't realise it was Mother's Day today when I organised to come over, but of course this makes it all the more wrought with significance which I have been trying to avoid. I didn't necessarily want to revisit the places we used to go or do things we had done before, but these things happen without you realising it. I had thought to stay at the hotel we stayed at 21 years ago but decided against it. As if to reinforce my decision, the hotel itself has fallen into disrepair which is probably a metaphor for something if I want to go that deep...

However, I did go into the pub nearest the hotel for a beer after my tea. I have my kindle with me so thought I would spend a quiet hour. It's Saturday night, what was I thinking? I sat in the backroom of the pub for a little while, something niggling at my memory before realising that this was the pub Nat had her hen party in. Although the decor had changed, the layout was the same. Shit.

I arrived over here mid afternoon and had a wander round the town before heading round the bay to the beach Nat had specified. It's very tucked away, you wouldn't know it's there and is about 3/4 mile from the road where I parked. I hired a car for the weekend, a little treat for myself which Nat would have appreciated. Friday had been a beautiful day at home but yesterday was dank and drizzly. I had bought a special container for scattering the ashes (who knew that was a thing?) specifically designed to be used with water. The container dissolves and releases the ashes gently into the water instead of the chance of having your loved one blowing in your face...I have kept some ashes back in a small urn to take with me wherever I end up and also some in a small bag in case the kids want anything made up in the future.

I got myself to the right place and spent some time just sitting and thinking. In the end I wasn't sure quite how to go about doing it; the tide was on its way out and there's a strong river current here so I just gently placed the container into the water and watched it float away into the current. The container did it's job and it wasn't long before it split. I played a couple of Nat's favourite songs to myself and said goodbye. As I started to walk back to the car, it poured down just as it had after the cremation service and within seconds I was drenched. I don't believe in mystical signs or anything like that; the probability of it raining in South West Scotland is quite high, but it did seem appropriate.

I did hope that being away from the kids for a night might, if nothing else, give me a chance to get a decent night's sleep, but it feels like that won't happen; I'm looking forward to getting back to them. I will drop in on my Mum on my way home, it's a nice drive from here, the bleakness of the scenery will suit my mood I think.

The kids are doing OK. I'm getting counselling to help deal with my grief and anxiety. Nat was a natural mother, I can't think of a higher accolade, and I struggle every single day to try and be even half the parent she was. I have terrible imposter syndrome and will never be dissuaded that the kids lost the wrong parent that day. The twins are growing daily, we talk about their Mum a lot and while the other kids were making Mother's Day presents at nursery, they both made one for me. It's fucking heartbreaking. Thomas is having a better time at school and we may be turning a corner, we do at least talk to each other which is something apparently. Izzy is a concern, she has lost interest in some of the things she used to enjoy but is still excelling at school, despite not wanting to go. I have arranged some counselling for her but I think most of the problem is she just wants to be near me. At the very least though they are secure in my love for them.

As for me, I'm learning that grief isn't the linear journey we have been taught to expect (erroneously as it turns out; the Kubler-Ross model was never intended to be linear, but that is how people have interpreted it. Check out the Psychology student!). I am up and down every day. There's no rhyme or reason, no pattern, just triggers which hit out of nowhere. It's like standing with your back to the ocean; you don't know if the next wave will lap round your ankles or knock you off your feet, you just know that there will be one. I've struggled to engage with Uni this term, particularly as the subject matter we have been covering has been fairly apposite. I'll get there though. I don't have a choice.

Peace and Love

Andy


Tuesday, 26 December 2017

Addendum: Christmas

Today is Boxing Day, 5 weeks and one day on from Nat's death. I have been mulling over whether or not to add to her blog, start my own, or just leave it alone. However, there were so many reactions to the "final post" that I recognised that some people may want to know how we have done, so here are definitely final thoughts, in no particular order. 

We have had "Nat's Christmas" this year, as a result of it being too close to Christmas to really arrange anything different, and my own lack of energy to change things significantly. I have been reminded this last week that Christmas was very much Nat's thing. She absolutely loved it. The tree had to be decorated just so, and you could see her fidgeting if the kids put a decoration in the wrong place, to be moved later when they weren't looking. There had to be many colours, except for the table which was white and silver, and tinsel on every available surface. I did my best, but in the end there was a lot less tinsel and silver. I always used to cook Christmas dinner anyway, so that wasn't a challenge, but I was more interested in just getting it on the table than making it look nice. One thing that was unusual was that yesterday was the first day since Nat died that I have struggled to get out of bed. Every other day there has been something to do, kids to school or activities, shopping to do, meetings, admin, funeral, Christmas shopping, etc but when it came to it yesterday I just didn't have the strength to get out of bed, despite the kids bouncing off the walls. 

The funeral went exactly as Nat had planned. She had wanted it kept simple; a plain white cardboard coffin was decorated with pictures of our life together and drawings the children had done. I went to see Nat on the Saturday at the funeral home. I had originally thought to take the kids, as some people had recommended it although others had not, but was pleased I didn't in the end. It totally freaked me out. I had a panic attack and couldn't stay in the room; the coldness of the room, the iciness of Nat's skin when I gave her a kiss, the absolute certainty she would open her eyes any minute. Not fun. It absolutely poured down on the day, there were so many people at the crematorium I didn't get a chance to speak to, as we made a run for the car, but the wake afterwards was good and I was able to catch up with a few. Sorry if I didn't speak to you, but rain and sobbing children didn't make a good combination. In the spirit of Nat's policy of being open and honest, there was some conflict over the eulogies which has resulted in my being blocked by someone, but I'll leave that there.

The kids have been coping OK, as far as I can tell. The twins have never known a time when their mum wasn't ill or in hospital and seem to have taken this in their stride. They talk about Nat often, in a very matter of fact way; they know she has died, but I'm not sure if they fully understand the finality of that. Little Miss H is fine as long as she has her tablet. Her friends at school made her a scrapbook of supporting comments while she was off and it is beautiful. Even at the best of times I think you would struggle to read it without getting something in your eye. Her teachers and childminders have been brilliant with her. Master H however I think has been taking advantage of my being distracted and has been involved in some low level disruption at school, not doing homework etc. Unfortunately for him his school recently introduced a fairly draconian discipline policy from which there is no hiding place, so we will be working on that in the New Year. Otherwise he is behaving exactly as you would expect a 13 year old boy to...

As for me, 95% of the time I am able to function normally, put a brave face on, all the cliches. The other 5% I am a mass of rage, fear, guilt and grief threatening to spill over at any minute. My counsellor commented that most of my "episodes" seem to take place in the supermarket. It occurred to me later that that is the only public place I really go at the moment, apart from school, and the exposure to familiar things seems to trigger a wave. But it can be anything. A song, a smell, a ball of wool found under the bed, French Fries crisps which she seemed to exist on when I first met her, pictures, driving her car back to the garage. I'm told that it's early days, that I need to be kind to myself, but for me it's nearly three years since Nat started getting the symptoms which we thought was her endometriosis returning. I thought I was grieving before, for what was lost, for our children, for our future together, but this is a whole other level.

My family and friends have been awesome, delivering food, taking the kids off my hands for a few hours, letting me sound off and letting me indulge my self-preservation tactic of inappropriate humour without judgement. And with that I'm going to stop. We're surviving. Nat told our friends to give their numbers to my Mum so she could phone them if she saw me struggling. She also told them all that I'm rubbish at asking for help so to keep offering it, and they have, in spades.

If anyone is interested, I'll put up a link to my eulogy and if I do decide to write a blog I'll also provide a link to that. 

Peace and love

Andy

Saturday, 2 December 2017

Final blog

Hello everyone. This is Andy here. As promised, I am going to attempt to finish off Nat's blog as best I can. The first thing I should say is that Nat was hopeless with bookmarks, and it's taken me ages to even find the page...

I have found the following short draft, which I'm guessing was written on 22nd October. It was the twins birthday on the 20th, and Nat had booked herself in to the hospice on the 16th for a few days to try and get her pain management under control. 

"Happy Sunday morning to you all.

Today I am writing to you from the hospice.  I came in for pain management initially, turns out I was poorlier than I thought.

The last blog saw us visiting the kids on their holiday with granddad.  A lot has happened since then mostly not good, a few hospital visits and another nasty infection.

I have been cancelling meeting up with friends a lot - cancer invading our life again

I have not spent any where near as much time with my family as I would had liked.

I have also had to accept that I am starting to slip down the slope that I have spent the last two and a half years clinging on very tightly to.

Mr H is back at uni and the kids are back at school.  I took this quiet time to record me reading story books to them.  Some old favourites some new favourites.

We also went to see a funeral director, that was an awful thing to have to do I can tell you."

Nat had mostly been at home through September, with visits to our Oncologist who had suggested that there may be one last course of chemotherapy which might prolong Nat's stay a bit longer, mixed in with infection and hospital stays. The main issue with this chemo drug was that it also pretty much destroys your immune system and as Nat barely had one to begin with I wasn't convinced this was the best idea.

Although the hospital were excellent as far as treating the infections was concerned, what tended to happen was that her pain management was buggered up as a consequence, and it always took a couple of weeks after a stay to gain some sort of equilibrium. I'm pretty convinced that when left to her own devices Nat would exceed recommended doses just to be out of pain as this was the main thing of which she was terrified. I think she felt by this stage she had nothing to lose.  

The twins had a birthday party arranged for the Sunday, but with Nat laid up in the hospice, and the chance that we may have to dash off at the drop of a hat, I took the decision to cancel it. We had a little party for them between ourselves and I'm fairly sure they didn't register the lack of a bigger celebration, although next year might be different. It was now half term, and we were supposed to be going down to Filey on the Thursday to stay in a caravan at Primrose Valley. It would be Nat's 40th on Saturday, and we both knew that this would be her last one, although I joked that she had already said that twice. The hospice were extraordinarily helpful in making sure we got away for those few days; arranging local support (Nat had a syringe driver for pain relief), providing a "goodie bag" of drugs for every eventuality. Her mobility had deteriorated severely at this point, and we made use of the wheelchair we had been provided with, although the twins insisted on calling it her wheelbarrow. I think she secretly enjoyed being wheeled about for a couple of days. We met up with her Dad and Step-mum and had an afternoon tea in Filey on her birthday. She loved it, being in a caravan, by the sea, with her kids, and a proper afternoon tea with all the trimmings.

I dropped her back at the hospice on Sunday evening, and things went even further downhill from there. On the Friday lunchtime the doctors called me in for a meeting; the cancer had grown and spread to her bowel, the infection was now resistant to virtually any antibiotic (there was one left to try, I think) and it was confirmed that we were now into end of life care. Nat was always delirious and delusional when the infection caught hold, but this was another level again. As it turned out however, this wasn't another bout of sepsis, but a combination of the painkillers (methadone now) and the cancer taking over. 

Friends would come over regularly to visit, talk to her, pray with her, bring treats or take away washing. Her Dad spent three weeks at the hospice,only going home at weekends,  her Mum came up for a few days and friends started arriving from further afield as we knew this was it. I kept the kids' visits going as long as I could, but there was a point where this became unsuitable for the twins, although Thomas and Izzy were able to visit in her last couple of days. She became very aggressive and delusional in her last week, convinced that the doctors were trying to kill her, that we all wanted her dead and that people were only visiting because they knew she was going to die and she wasn't ready for that. The painkillers and sedatives finally took over. I noticed something different about her and realised that for so long I had only seen her in pain and now she looked like the old Nat. I had the last Sunday with her to myself and I talked to her about all the things we had done together, but if she could hear me she wasn't letting on. Then on the Monday, just after some friends had been and talked to her, while her Dad and I were chatting next to her, she just stopped. No drama, no distress, she just stopped. 
                                                                                                                                        There are so many people to thank. I would like to pay tribute to the staff at the Marie Curie hospice in Newcastle who's care, attention and kindness not just to Nat but to the whole family was so amazing and made our lives over the last 8 months or so of Nat's life so much more bearable. To Team Verrico without whom we would be in a significantly worse place than we are. Their practical help was one of the major factors in Nat having those crucial few extra months. And to the army on social media who organised, coordinated, fund raised and were just there for us when we needed them. I hope to thank each and everyone of you personally but it might take some time. 

I don't know how to sign this off; it feels wrong to just end it here because that would be admitting that she's gone, but she has and I have to get used to that. The harsh reality is that I lost my wife to cancer in May 2015. I've been grieving ever since and I don't know if I'll ever be able to stop. 

Andy x                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                  
My tunes are chosen already.  I am ready to go. 

Friday, 8 September 2017

Bacon, Kleenex, cars and sand......

Hello all

I am writing to you whilst scoffing bacon sandwiches, lovingly made by Mr H, and watching Homes Under the Hammer (one of my secret pleasures). 

I'm sorry that the last blog was so bleak.  It was a blog that was already written it just hadn't been published.  It was always the most likely option being that miracles in my world seem to be highly lacking lately.

I told you we were going to go to Scarborough to visit my Dad, Step Mum and the oldest two Hunters as they are on holiday there.

Well we went regardless of the latest news.  I could be sat in my bedroom surrounded by boxes of Kleenex (other brands are available) feeling incredibly sorry for myself and not one person I think would begrudge me.

But we have severely limited time left so I want to spend it doing stuff the kids will enjoy.  That Mr H and I will enjoy.  Let the happy stuff cram in now ready to soften the blow later.

We have had to book to speak to funeral directors and will be getting Bob (my beautiful old 2CV) ready for sale as he will pay for my funeral. I will also have to arrange to hand my beautiful Fiat 500 (Luigi) in mint green with a soft top back to as I will struggle to drive him.

Anyhow back to how I am determined not to sit crying all day.

We got in the car early Wednesday morning and drove to Scarborough, well Filey, a small town close by.  We arrived and were greeted with lovely hugs and love from the oldest two.  The Twins were quite happy to see them too. 

We all hopped into the cars after a coffee and went to Peasholme Park, via a ride on a small train which delighted all of us, Mr H especially.  This is about trying to lessen the load.  Give us all something to smile about or distract us.

The ability of the seaside which brings back memories of a childhood well spent to heal the heart can never be underestimated.  It definitely helps me.

We walked about, had a coffee and cake and bought the children small gifts from the shop.  Today they were allowed to look at the toys and decide which one they wanted within reason.  I was determined they should get what they wanted.  The boys chose a fire engine, space shuttle, mini and go-kart respectively.  Little miss H chose something hidden in an egg.

The next day we took the children to the beach not just any old beach though, the same beach in Bridlington that my parents took me to when I was a baby.

It feels like things going full circle.  Although the weather was a bit dodgy it didn't stop us, being English and being on holiday.  The kids splashed about, build sandcastles and found odd and unusual stones (dinosaur bones).  We ate salty chips and had ice-cream then went to play on the amusements, just as I would as a small child, the penny pushes and ride ons (trains, cars merry go rounds).

Then we drove home late on leaving the others to the rest of their holiday.  I'm determined to fit in much more of time like this before I can't do it.

Cancer you are an absolute bastard but I will fill every moment I have left with joy, love and hope that a cure will be found for those still fighting and those yet to be diagnosed.


Tuesday, 5 September 2017

End of the line

Hi all

I'm home after another 8 days in hospital.  Basically once we were back from London the health professionals on my team up here felt that I needed to be admitted as I still had a temperature and my blood cultures were all over the place.

So in I went.

I was immediately put on a course of antibiotics and settled onto a small ward of four though there was just me and one other lady at this point.

I am not sure how much of how I feel now is still down to the sepsis.  My sense of taste has changed, food tastes strange and therefore I enjoy it less. I also feel like I am permanently thinking and seeing through a fog.  I sleep lots too.  Not like a little nap, I have an overwhelming sense of having to sleep almost like a narcoleptic feels I imagine.  It doesn't matter what I am doing or who I am talking to I just have to go to sleep.

For the next few days I slipped into the schedule of the hospital.  Mr H and the children visited a couple of times and I took the necessary medication.  My dreadful twitch has also returned so I have to be careful with touch screens as it can cause me bother.

Each morning I went I got a fresh coffee from the coffee machine as the hospital coffee was pretty rank and something extra for breakfast.  The rest of the day was spent reading the paper or watching the telly, not hugely productive I grant you but that is what I did.

London rang to tell me that they had the results of the CT scan and it wasn't great news, the cancer had grown so the immunotherapy was no longer working.  I finished the phone call and felt worried, previously I knew that my consultant was unlikely to offer me chemo so that meant no treatment to the cancer.

I continued with my new schedule waiting for my consultant to return from his holiday.  In the meantime my pain was starting to worsen and my bowels were totally misbehaving swinging from being bunged up to unstoppable..

Today my consultant returned and we sat down to talk.  I was right his feeling was that due to my tendency to get infected easily chemotherapy would be too dangerous as if I got an infection it could kill me.

He felt I needed to go home and spend some time not in a hospital and we would reconvene in roughly a fortnight.  This gives us the chance to drive down to the Scarborough area to meet up with my dad who has the oldest two mini Hunters on a weeks holiday, which we are going to do!

What does this mean for me? us?  It means that essentially they can do no more and that I have to accept I am at the end of treatment and the cancer must be allowed to do what it will.  I have come home to wait until I die, who knows how long I have left?  I certainly don't so we have already been proactive and booked to speak to some funeral care companies.

I am now scared and desperate for this reality not to be my reality at all but it is and complete it I must.

Thursday, 24 August 2017

Close calls and escapes

Where do I start?

I've had quite a time of it over the past fortnight.

We managed to get a week away, all of us without incident.  I had to remember to pack all my medical things (all new to me) but we made it.  We stayed in a little lodge in Northumberland and just relaxed, did a little sightseeing and laid in most days.

The children played outside in the big courtyard, it was nice just sitting watching them play on their scooters.  Carefree.

Some good friends visited the region once we were home, they have twin boys the same age so it was lovely for the boys to all play together and for us adults to talk and while the time away.  We also managed a lovely ride on a heritage railway together which the children thoroughly enjoyed with tea and cake afterwards.

By this point though I was starting to feel rough, I knew I wasn't right my temperature was spiking and I was feeling quite unwell.

I was due to visit London for my latest immunotherapy infusion so was determined to travel, I was prescribed some antibiotics for the infection and all was felt to be ok to travel.

My dad came with me this time and we caught the train down and went to the hospital for my routine pre-treatment bloods and to see the doctor.

We then went to the hotel and settled in for the night, however, I felt unwell before I went to sleep and woke up in the early hours with a temperature of almost 39.   At this point I was really feeling quite poorly so it was unfortunately a situation where we called an ambulance.

The ambulance arrived and assessed me, my temp was still up despite paracetamol and my blood pressure was very low which worried the paramedic team.  I was blue lighted with my dad up to the nearest A&E where I remember (at this point I think I was going in and out of consciousness) being rushed into Resuscitation which I knew didn't bode well.

My really low blood pressure was worrying the doctors intensely and my dad was informed I was very sick indeed with sepsis.

At some point over the next few hours I was transferred to intensive care where I was stabilised and given some medication to help raise my blood pressure, oxygen to improve my saturation and fluids to try to protect my kidneys.  As I understand it they were in a very poor way.

Over the next few days I remember small periods of lucidity, I knew my dad was with me (for which I was eternally grateful), I got to know some of my nurses (one on one nursing) and listened to some of the Doctors.  But other times I was entirely somewhere else and was informed this was normal and was down to the infection.

I lost my temper one day after being laid staring at a door for probably three days at that point? They moved my bed over to the window and I remember the relief I felt at seeing real people walking around below.  I had some awful nightmares during this period also and never wish to repeat them ever again, I have never been so grateful to wake up. Truly.

The temperatures that I kept spiking were awful, I was sweating so much, I had raging headaches, stiff neck and could just never seem to feel cool.

I was nursed carefully and thoughtfully through this awful infection and I am forever grateful that they saved my life.  I had been informed that it had been a close run thing and had we left it any longer to call an ambulance it may have been a different story.

During my time in intensive care I had some lovely visitors, some mum friends that I only knew from an online group took time out to come and visit me.  An old friend came to see me and my mum and almost step sister also visited.  All of these visits meant the world to me. My dad was a constant, there each day for hours on end, watching me sleep or talking to me.  Team Verrico made this possible and both my dad and I were so grateful for their help.  I was so scared.  I was scared to sleep.  Scared I was dying and having someone with me from home saved me from going totally under, mentally.

They eventually transferred me out of the Intensive care unit though once my bloods had improved enough to suggest I might have beaten the infection.  This is when things started to go wrong.

I was moved to an older building at another site and into a small side ward where I was with one other person.  The room was very small and the ceiling very low.  By this point my dad had had to return home and I was on my own.  My claustrophobia was also really affecting me and stopping me from relaxing or concentrating on trying to get better (I hadn't eaten in a week and had no appetite).

Luckily the lady I was sharing with was a truly lovely person.  She had had surgery in the pelvis and was recovering, unfortunately she suddenly began bleeding out and was rushed back into surgery.  I was so worried for her and her family they had been through so much, having recently lost their teenage daughter.  Despite this and her medical issues when I broke down with home sickness she got out of bed to hug me and console me.  She genuinely cared for me and how I felt and I felt so selfish that I was being so self orientated when others were dealing with so much more.

Again some lovely people came to see me to try to raise my spirits and it was good to see them but still I was very upset and beginning to feel unwell again. I had not seen a Doctor in all the time I was at this hospital and nobody had taken my bloods nor were they attempting to restore my pain relief to pre-sepsis levels (it had all been dramatically reduced to protect my kidneys).

I am afraid that I self discharged this week after trying desperately to get transferred back to my home hospital.  Mr H and I determined that in order to recover I needed to get home.  But that in itself was a real challenge, we needed childcare and Mr H who had himself been through a mental nightmare over the past week not knowing if I was going to make and not being able to come to be with me had to arrange to get down to me.  In the end it was decided that he would come down on the train and we would hire a car to get home.  This in practice was not so easy and Mr H struggled with his anxieties while we tried to get taxis and find the hire car that we had booked at the rail station.  All we then needed was for him to drive for roughly four hours to get home with a sick person on board who could at any point be taken even sicker and need a hospital.  We did make it and I am currently resting at home with my family around me and I do feel better for it but still not 100%.

I've have now also seen my own GP, had my bloods taken and we are now waiting to find out if I need to be readmitted for continuing treatment.

It has been a scary, harrowing time for me the past fortnight and I am so afraid that I will have to go through this again.  Essentially I am now at high risk of constant reinfection due to the fistula which they can't fix for fear of making things worse.  The infection is starting to evolve to be resistant to the antibiotics available to me and ultimately it is likely that this will be the thing that will take me.  I know I have had far more time than most from diagnosis but I want more.

I want more time to see my little ones grow up, I want more time to spend with the man I love.  I want to spend time as a family doing things families do, going for days out, being together and loving each other.

Very selfish of me but there we have it.  I know that this cannot happen though and I know I will never accept that my days are numbered.