I'm not sure where to begin, well I do really, I am so sorry its taken so long to update everyone. It has been two weeks of ups and downs and missing days but on a whole it has been great to be home. I could have written three blogs with what's been going on so sorry if its jumpy or a bit long winded. I suppose I should start symptom wise and I'll update later on some specific things and emotions I've been going through. I started to gain more feeling back in my legs and abdomen. Still can't move them but It feels like they are cold numb and I get tingles where I'm being touched. Which is a long way from the surgeon stabbing me with a pin and I couldn't feel anything. The muscles in my legs are spasming like I'm wearing one of those abs machines, its funny, its like my muscles have a life of their own just start moving. randomly i just suddenly start groaning esp if its my abdomen that tenses or my leg starts jumping, keeps me up at night now too but I'll take it as it indicates the radiation decreased the size of the tumours which has given uses much relief as a family. I did check if I could get more radiation since it has worked but unfortunately not I got the max I could get already. It's great to get a sign they shrunk though and has eased my anxiety a bit. I was so afraid I would deteriorate in days of getting home but so far signs are positive, and I feel a lot of that is from the positivity and support from others. So thank you for all the prayers and positive energy being sent our way x The practical things has been quite smooth. The care team I have are amazing and I have built up an amazing relationship will all of them, but also Ross and the boys have, which is so important as we see them daily. I know I keep saying it but its like they are a different level of amazing in my eyes! They keep such a close eye on my, emotionally and with medication, physical symptoms, they wash me, my hair, take care of every inch of my skin. I am so dependant on them, they make it work and without them it would make it all so much more difficult. Pain wise, I'm still feeling great. I did loose a few days last week to a codine haze. I have had codine before and been fine but this time I was out in a drug haze. Although great sleep it was really stressful for my famiy to see how less engaged I was. Thankfully a few tweaks and I'm back to a more natural energy level although with pretty strict planning for fatigue depending on what's on. Week one was crazy, trying to plan my day for appointments and rest too while getting used to a new routine. Looking back it wasn't a routine, it was more getting through the craziness of it all! Organising my wiil, Power of Attorney, bank accounts, pensions and also the funeral. Strangest shopping I ever done! However Ross had seen a flyer with ecocoffins made with sustainable and fairtrade material which I thought was quite cool. Then there is music , poems, prayers….I'm still not there but its nearly organised! I managed to see some of my family from Scotland and Ireland, I hadn't even seen my in laws for the whole time, but even then they are so good and making sure I have enough rest. It's not been perfect but I'll write another update on that….frustrations of being in a bed, emotions seeing and saying goodbye is a blog on it's own. I also hurt by bicep on the right and then the left, on top of sleeping through the codine days they had no strength, it was really painful and so frustrating. I had no strength to even lift them. Again nurses were fab and got me a daily exercise plan to keep there strength up and although not full rang of motion and strength I am managing to keep doing as much as I can. I can't lift them off the bed for long or lean my laptop on my stomach so I got a pull over laptop table delivered yesterday which is fab, I'm down to one hand typing but I'll take that. Blog writing with my favourite company
1 Comment
Sarah
21/3/2021 09:06:47 pm
Love to you all, such tough times. So good to hear from you. Sending all positive energy and prayers from all. 💖
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