Kay Posted January 14, 2018 Author Share Posted January 14, 2018 Thankfully I found my notes so this is my original SAH part 2 The CT scan I had at Basildon apparently showed that I had blood on the brain. I wake up the next day in Queens Hospital, I’m not at all surprised by this, and my immediate recollection is of cutting my finger open on the tin the night before. My memory of the following week is very fragmented. At first it was assumed that I’d passed out from cutting my finger and that I’d then hit my head and that was what had caused the bleed. That my brain would then just absorb the blood and I’d be able to go home in a few days. I didn’t eat much in the first week, everything tasted foul to me, especially this jacket potato I had (having read up on it I realise now that the bleed had temporarily affected my taste buds) I had an angiogram on the Wednesday to check that everything was going ok. On the Friday a doctor came in to tell me that they’d been looking at the angiogram and original CT scan and that they believe I had an aneurysm that had ruptured and that they’d like to take me in to surgery as soon as possible. I remember feeling quite numb and calm about it all. I asked him if I could just ring my fiancé because I’m only half taking in everything he’s saying to me. He was lovely, he gave me his mobile to ring Joe and then he explained to Joe everything that was going on. I remember before going in to surgery that someone came and marked a cross on the side of my neck near my jaw line so I was very surprised to wake up with a line of staples down my centre parting. They originally wanted to coil the aneurysm and that was what I was told they were going to do. I went into surgery on the Friday. They couldn't coil it though, at the time we were just told that the coiling failed. I only vaguely remember coming round and being informed that the coiling hadn’t worked; I think it was something to do with the location of the rupture (it was very difficult to get to). So I had to go back into surgery on the Saturday to have the aneurysm clipped, which was successful. (I only vaguely remember later being told that the aneurysm could only be partially clipped because of these blood vessels coming out of it). I don't know if it was the double dose of anaesthetic in such a short space of time, but I don't remember the time in between the surgeries. I was very groggy for the next week. Apparently I repeatedly asked things over and over again (I don’t recall this at all). When I woke up I kept asking over and over again about the staples in my head, I do remember being very curious about them, I just wasn't expecting them to be there and so was utterly confused and fascinated by them. I found it very hard sleeping in the hospital, even as a child I’ve needed complete darkness and silence to sleep (I can’t even have a ticking clock in my bedroom) so sleeping in the hospital was a nightmare for me I had ear plugs and a sleeping mask. The sound of the drip was driving me insane, so one of the nurses figured out for me that if I drank 5 jugs of water a day then I wouldn’t have to have the IV. I also recall that my sense of time completely went out the window; 10 minutes felt like an hour, it was so bizarre trying to keep track of time. I had to wear sunglasses most of the time because the light hurt my eyes, I could barely open them The side effect of the Nimodipine was that I felt warm all the time (this just happened to coincide with a very warm March) so I was constantly asking for the window to be opened, one night the wind was blowing so strong that it brought the blinds down, and so of course everyone was joking with me for ages that it was my fault. Now I have suffered from anxiety for a long time, I've even been on medication for it, but I was the calmest I have ever been, which I thought at the time was strange because this is probably one of the most stressful things that's ever happened to me. But I was completely calm even serene. After watching Jill Bolte Taylor’s TED talk I now understand possibly why this was the case. I was discharged on the 24th of March, which means I was in hospital for just under three weeks. Link to comment Share on other sites More sharing options...
Kay Posted January 15, 2018 Author Share Posted January 15, 2018 Yey, I'm now able to get up and down the stairs unaided. I had resorted to using the stair lift (Me and Joe live with his great aunt who is 87 and I'm basically her carer, she has dementia and a colostomy bag, not been particularly easy to deal with, with everything that's gone on, but I thought I should explain why there was a stair lift in the house). Anyway exceptionally proud of myself, I have defeated the stairs, took me a week but I've done it. Link to comment Share on other sites More sharing options...
Kay Posted January 23, 2018 Author Share Posted January 23, 2018 Going for my follow up CT scan tomorrow, fingers crossed the results declare everything is fine, no more stuff to deal with or sort out. Link to comment Share on other sites More sharing options...
Tinaw Posted January 23, 2018 Share Posted January 23, 2018 Good luck for tomorrow, Kay! I am going for my follow up angiogram (also tomorrow) so I feel the same way, hoping that everything is fine. Fingers crossed! Link to comment Share on other sites More sharing options...
Winb143 Posted January 23, 2018 Share Posted January 23, 2018 Good luck Tina and Kay for tomorrow hope all goes well and remember a nice cuppa afterwards !. Cake wont go amiss if you cannot eat it bring it to me lol xxx Good luck both xxxxxxxxxxxxx Link to comment Share on other sites More sharing options...
Chelle C Posted January 23, 2018 Share Posted January 23, 2018 Good luck Tina & Kay, Hope all goes well for you both, Love Michelle xx Link to comment Share on other sites More sharing options...
Kay Posted January 23, 2018 Author Share Posted January 23, 2018 Thank you Win and Chelle, and good luck to you too Tina. Definitely a nice cuppa afterward, actually I think a nice cuppa now wouldn't go amiss, think I'll get Joe on to it. Link to comment Share on other sites More sharing options...
Skippy Posted January 23, 2018 Share Posted January 23, 2018 Good luck ladies - really hope that all is good xx Link to comment Share on other sites More sharing options...
Tinaw Posted January 24, 2018 Share Posted January 24, 2018 Thank you everyone, everything went pretty smoothly even though angiograms aren't my favourite. Now it is definitely time for a nice cuppa, and probably some chocolates to go with that :). A couple of weeks of waiting for results, though, but the doctor told me that everything seemed to look fine at a first glance. Hope your scan went well too, Kay! Link to comment Share on other sites More sharing options...
Kay Posted January 24, 2018 Author Share Posted January 24, 2018 Glad everything went well Tina. Mine isn't until 7:30. I think at this point I've had 7 angiograms now, it always sends my vision a bit funny ,I assume it's the result of the dye going through the veins in my eyes, I always have a pretty lights show as well. Link to comment Share on other sites More sharing options...
Tinaw Posted January 24, 2018 Share Posted January 24, 2018 Thanks! I was also expecting the lights show, as I experienced that during my last angiogram, but this time I didn't react much when the dye went in. I thought it might be because the brain has had some time to heal, but I have no idea. Again, good luck with your scan tonight! Link to comment Share on other sites More sharing options...
Kay Posted January 24, 2018 Author Share Posted January 24, 2018 Scan done. We treated ourselves to a McDonald's on the way home, so we've just finished eating that, have not had a McDonald's in so long. Very tired now though. I think I've had the lights show every time, at least the ones I can remember. Link to comment Share on other sites More sharing options...
Winb143 Posted January 25, 2018 Share Posted January 25, 2018 Well done Tina and Kay, Waiting is the worst lol but all will be okay. Fingers and eyes crossed lol XXXXXXXXX Link to comment Share on other sites More sharing options...
Kay Posted February 26, 2018 Author Share Posted February 26, 2018 Next week will be my 1 year anni-versary, which feels really strange, it feels too soon. I suspect this is mainly because of being in hospital over Christmas and new year so I feel like I haven't been out of hospital that long, I'm only just getting used to the fact that it's 2018. Things are only really now beginning to dawn on me, over the last week the thought keeps popping into my head that last year I almost died twice, it feels too big to deal with at the moment, but I really do need to start dealing with it. I need to start getting my life back on track, I feel it's time, but it's very scary. Sorry for the glum post but I felt I just needed to get that off my chest. Link to comment Share on other sites More sharing options...
Daffodil Posted February 26, 2018 Share Posted February 26, 2018 Kay, I think you have had immense resilience and showed tremendous courage this last year and also during this scary time you also helped here. Bravo!! But SAH and brain surgery is a huge thing and it does take time for the emotional effects to really land. Don’t be afraid to seek help and I really recommend you ask your GP for counselling. I had CBT at a similar point to you, I had some counselling through a service from my occupational health in the inital months but it was a good year later that the realisation really dawned , I got checked and found I had PTSD and I needed help and the NHS found me a great counsellor who I saw weekly for a good few weeks. It was very very helpful to just talk it through. Don’t struggle alone. Come here, call a friend , chat with GP but the best way out is through , so reach for as many hands as you need. Bit of gloom and despondency is normal in the ups and downs but if it feels heavy and isn’t lifting then time to act. But 1year on is still cause to mark how far you have some and you have conquered some major challenges in the last twelve months. Keep on keeping on . Xx Link to comment Share on other sites More sharing options...
Winb143 Posted February 27, 2018 Share Posted February 27, 2018 I keep forgetting mine and when it has passed I think "Oh another year" but I am always late in remembering. In a way I am glad I have no memory of being ill, as my family went through it. Happy Anni~versary for next week Kay xxxx Link to comment Share on other sites More sharing options...
Tinaw Posted February 27, 2018 Share Posted February 27, 2018 I understand what you mean, Kay, for me it took a good while before it dawned on me what had actually happened. My husband tells me I was quite cheerful right after getting out of hospital, which certainly wasn’t the case a few months afterwards. It has been a rollercoaster of emotions since. I still haven't had my first anni-versary. But in these 8 months since the event I have learnt that it’s ok to feel emotional and sad about what happened. The important thing, I think, is that it doesn’t feel like that every day. If that is the case, I would definitely see a councellor as Daffodil suggested. I book an appointment whenever I feel that I’ve been down for a while, and that helps me stop my mind from going in a downward spiral of negative thoughts. Also, I try to do things that I used to do before the event, even though I do them more slowly than before. Things that make me feel a bit better and a bit more confident each time I manage to do them, like taking yoga & meditation classes, travelling or even just getting out of the house for a while, having coffee with a friend etc. Happy anni-versary to you, and I hope you feel better soon! Link to comment Share on other sites More sharing options...
Louise Posted February 27, 2018 Share Posted February 27, 2018 Kay I think a most of us (or a lot of us) felt/feel like that coming up to the first anni-versary its a land mark... Maybe a trip to your GP ask about councelling would be a good idea for you... but yes come on here to off load we all understand.. take care.. Link to comment Share on other sites More sharing options...
Skippy Posted February 27, 2018 Share Posted February 27, 2018 Kay - I panicked like a good 'un thinking that as it was the 1st anni then surely something had to happen - it's not like my brain has a warranty that's going to run out. It does get easier as they anni-versary's pass, but you have made great progress and, as said, shown tremendous resilience and courage. Well done you xx Link to comment Share on other sites More sharing options...
Kay Posted February 28, 2018 Author Share Posted February 28, 2018 Thank you to everyone for all your understanding and encouragement. Hopefully this is just a glitch brought on by the upcoming anni-versary. Some sort of counselling I think might be a good idea at this point On 2/26/2018 at 21:48, Daffodil said: the best way out is through I really like the sound of that, I need to keep that in mind, very proactive. Something else I really need to do is make myself go out more. I did actually go out for lunch today with a friend, almost cancelled it but forced myself to go through with it, glad I did, despite the chilly weather. It's reassuring to know I'm not the only one who's freaked out a bit at this stage. I have an appointment with the neurosurgeon on March 19th and a long list of questions again, i'm hoping it will help me feel like this event is finally at an end, that it's completely over with now, absolute confirmation that there is no more aneurysm, no more surgery, just a 'go home and carry on recovering' would be nice. Link to comment Share on other sites More sharing options...
Skippy Posted February 28, 2018 Share Posted February 28, 2018 Hey Kay I truly hope that that is what he will tell you - love Daf's advice - definitely the best way out - and going through will affirm just strong and resilient you actually are. We are all survivors - that's the thing that makes us unique! Link to comment Share on other sites More sharing options...
Susan Posted February 28, 2018 Share Posted February 28, 2018 Hi Kay I've never replied to one of your posts yet, but I have been reading them all with interest - you have gone through such an extraordinary amount of uncertainty over this past year, and coped with it all so bravely. I just wanted to say I hope you get all good news on March 19th and can finally start looking forward. Xxx Link to comment Share on other sites More sharing options...
weedrea Posted March 17, 2018 Share Posted March 17, 2018 On 05/06/2017 at 17:23, Kay said: I didn’t eat much in the first week, everything tasted foul to me, especially this jacket potato I had (having read up on it I realise now that the bleed had temporarily affected my taste buds) This made me laugh...when I was in hospital the poor woman in the bed opposite me (who was immobile and couldn't really speak after a stroke) had a baked potato and cheese for lunch and dinner every day for the 10 days I was there! The nurses were always worrying that they weren't really communicating with her to understand what she really wanted. But finally her daughter put their mind at easy by saying she had baked potatoes every day before she was ill! And as for Nimodipine - uggg that was awful. I too was in during the summer and it was SOOOO warm that I was asking for ice packs at night. I suffer from v. cold hands and a constantly freezy nose (Raynauds) and the Nimodipine made all my extremities hot....and my nose itches constantly for 3 weeks. Nearly drove me mad!!! I later found out sometimes they give people with Raynauds Nimodipine as a treatment.....ahhh that'll be a no! Happy to stick with the cold nose! Link to comment Share on other sites More sharing options...
Winb143 Posted March 17, 2018 Share Posted March 17, 2018 The reason my husband and Daughter didn't want me left alone was they saw a young woman who couldn't feed herself puree food. They used to put note would not eat it but the poor girl could not do it. It made my husband dubious and he made sure I was never alone after seeing that !! I think Carers should make sure people who cannot care for themselves get the right treatment. There for the grace of God etc etc !! Link to comment Share on other sites More sharing options...
Kay Posted June 22, 2018 Author Share Posted June 22, 2018 I believe an update is long overdue. I had the appointment with my neurosurgeon on the 19th of March, everything is good, he wanted me to have an MRI and CT scan, just to double check that everything had settled back down around where the cyst was in particular. I was unable to have either scans because I found out I'M PREGNANT, we are absolutely thrilled, I'm now around 13 weeks. I had a letter from my neurosurgeon congratulating us and saying not to worry about the scans that they were in no way urgent and can wait until after the birth. ? Link to comment Share on other sites More sharing options...
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