It's been a really tough few days for me. I have found being in a bed increasingly frustrating, and as a result a lot more snappy with people. Running joke is I'm the old grumpy guy in the chair that lost his filter….but the shitty part is I'm not old am I? and I don't want to be stuck in a bed. I can't stay positive about it all the time, I am only human.
The first realisation I guess was a Saturday night, date night with Ross watching a movie and I just realised I will likely never wake up beside him in a bed again, to have that feeling of comfort and protection taken away really upsets me. After a chat and I eventually stopped crying he disappeared to the bedroom for the duvet and pillow and said "I may not be in the same bed but you can certainly wake up beside your husband when ever you wish" Ross had been working his butt off for days doing an amazing job and we were just casually discussing how he needs to look after himself, go have a shower and we will have an early night, all he said was "a shower seems like such a chore" and I felt an overwhelming feeling of jealously. To feel water around my body again, to be in a bath or just to feel completely clean. I am…clean that is, I get cleaned daily but a bed bath is no comparison to the real thing. It's then really hard to get yourself mentally out of the trail of thought, what your frustrated with when you physically can't move, you can't physically distract yourself either. I started to sleep more and more each day, again without physically moving its hard to wake your body up, but you then worry is it lack of stimulus or is it the cancer. I have however thankfully lost all my focus on time, the longer I'm at home and got more things done I feel less pressure, I have still so much to do, but if it doesn't get done I can rest easy. A lot of this is to do with the community outreach and the support you have shown me and my family. It has exceeded anything we had thought possibly could happen and has made a huge impact on us over the past few weeks and will do going forward with the boys. "Do you know where……nope…nope I don't, I don't have a clue where anything is! Not going to lie it's 50/50 whether I want to laugh or cry with this one. It has been 3 weeks now and I have no idea what's going on in my house! Nobody tells me where things are but the ask me! I get this, I totally do and sometimes it is funny as normally I would organise the shopping etc so I would know if there was something in the freezer or where the black bin liners are but now I really don't have a bloody clue and sometimes it really gets to me. Everyone is getting used to raking now though, but then there is a tendency for people to think things should go elsewhere and when Ross go's to look for it it has been moved and he gets really frustrated, I try not to find this funny but I feel like it's karma for all the years of asking where things are! Even with all the moody crap they get from me they still show up and support….they have been amazing, I'm just learning to take a step back as well myself, it's been a steep learning for us all. Can I just say I have a new found respect for anyone with restricted mobility even babies….It is so bloody boring seeing the same walls day in day out and not being able to move. Family and carers coming in are great, break up your day but your head and body can be in the same position for hours, felt like I was getting a pain on my scalp just from not moving…It is so frustrating not being able to move or not having the energy physically and/or the motivation to move what you can, for me, my arms. Cups of tea going cold because the idea of lifting a mug seems too much trouble or effort, I would lie there thinking about the tea but not doing the simple act of reaching over to drink it. I can't sit up to support my body so it's using the bed and then lifting my neck….always knew cardio wasn't my thing but that’s bad even for me. I wake up in the morning and in my head I am in a nice comfy ball, cuddled into my duvet, but when I wake up more I realise, no, you are in the exact same position you were placed in last night because you can't fecking move ya twit! Like in my sleep I will get my movement back or something! My Cinderella story, you can move till midnight! So I started off my day moving the bottom of my bed, well Ross did, about a foot to the right, and even just this little change, my head is at a different angle, I'm looking to the left more to look outside so my neck is moving more. We moved the table to the left and although my weaker side I've been using that arm more. I done more exercises and for the first time in awhile I can lift my hand to the top of my head, Ross looked like a baboon yesterday scratching my scalp! I have my brother over from Ireland and I felt so much more present and engaged with them and the kids so it has been really a positive day for me mentally, the medication change may help this too so I'm going to continue to make what changes, even though small so I can to help too. Or at least try. Night night my lovely people Ross gets the boys up for a pee and tucks me in at 11pm so I finished just on time!
3 Comments
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 companyFeeling good when writing this evening, neighbours have an open fire, so I'm here in front of my sitting room window with a lovely hint of fire smoked air! Reminds me of the many a night spent in front of a fire at my dear friends the Edwards....
So yes I am home, and what a relief and joy it is. I can just feel the calm it has had over my family and myself aswell. The ladies in the hospice were amazing there, but also the support in getting me here...you are my angels! And to the men who got my in the house my knights! Thankfully the transport was four muscle men, cause lets face it I'm not the smallest of people, in my head I was thinking "light as a feather, light as a feather" but in reality its more a slab of dead meat(Gentle reminder can't move chest down!). Honestly after a rather uncomfortable ambulance journey, the rest was mostly open laughing. There are 14 steps into my flat, I knew it wasn't going to be easy. It started with knight ones belt buckle getting looped into my front door handle, chair wasn't going anywhere as it was already in, so step one, was undoing his belt right behind the chair, well I couldn't help it, the inappropriate comments started between myself and the others! Once un-looped and redressed the were fab and got my upstairs. be it with a bit of heavy breathing. Positioned in front of the bed for a swift swoop across, 1,2,3...the sheet had another idea and wrapped around the chair so I ended up with my head on one knights lap and my legs on the other....still dignified it was very graceful...but we all just laughed and spoke of our instant bond! The jovial atmosphere spreading to the four palliative care team who were here waiting for me and my husband, Laughs and giggles all round, and suddenly there I was lying in a hospital bed my sitting room in a blubbering mess, tears flooding my eyes and freely rolling down my face.....all I could say through my ugly crying was "I promise these are happy tears". I knew how much it meant to me but it was such a flood of relief and happiness I was so overwhelmed. I pull myself together in time to shout thanks to the men who were making their swift exit, but I hope they know I will be forever be grateful for what they have given me. The mood quickly went back to smiles and giggles, one lady who I meant in the hospice on Monday night had said she was in the community and had popped in that morning to say she would be there to meet me, and there she was welcoming me home. Some settling in, removing of the most unglamorous nappy (no other words to describe it) from my traveling...care plan discussed and off the ladies went leaving Ross and I at home. Ross was like a jack rabbit. Jumping to attention making sure I had everything I needed, everything to hand, he really is just awesome. Got a call from the school saying Noah had a sore tummy so of course I sent Ross straight up to get him, I couldn't help it! The plan was to have an hour or so ourselves, but Noah later admitted he saw the ambulance and thought it was me coming home, so maybe the tummy was real, maybe it wasn't but one thing is for sure you can't get anything past my boy! He got a quick cuddle from me before Oscar arrived home for his cuddles and I could just feel the tension release. I was smart yesterday I rested all morning knowing it would be a full afternoon and I'm glad I did, although tired I wasn't as bad as I had been even the day before. Today was busy speaking to banks, pensions, council, funeral directors, and of course, doctors and nurses but really productive so taking it easy this evening. We managed to speak to the boys too, Noah was asking pretty much as soon as I arrived yesterday so timing wise I am so glad we spoke to Catriona for family support when we did. We are focussing on saying that mummy has a disease, that it is not contagious, covid is a great comparison, just so they know if Daddy gets sick it's not the same thing, or I can't give it to others. That although mummy got better before I can't get better this time, that we don't know why, and we don't know what that will look like but we will talk to them and tell them when we do, so its very much focusing on where I am with the illness and so far it seems be what they need. A few questions but mainly they just say they are happy to have me at home for cuddles and so they can see me first thing in the mornings! We have all agreed turns on the bed is better, thankfully, but lets wait and see how long that lasts. Noah has been a bit more tearful and Oscar has been trying to push boundaries to see how far he can get away with, but even only two days home and some chats it's starting to improve, we are just figuring out our new norm I guess. Our story was in the local paper, Dunfermline Press today and I'm really happy how Clare put it across, it's still overwhelming the support and the attention it has caused. I wasn't expecting the cover either. My cousin described picking up the paper in Asda this morning and glancing and the cover and seeing our pictures and I could just see how it affected him, it's still sometimes all surreal, even for me. We really didn't expect it, I do worry what will be said to the boys in school and nursery by other kids, so we spoke to them a little about that as well. People close to me feel the blog beside it has brought people in on the journey with us. I hope it is the case, that I am showing you maybe the ups and of course the lows, that was the point of this was to communicate with whoever wanted to know what was happening and also for me to process my thoughts and make sense of what I can just by going through the process. However the outpouring of support, in words, faith, gifts and donations and people genuinely wanting to help my family, I truly feel like I have an army behind us and it has made such a difference to this experience. Symptoms wise, cold sweats seem to have stopped and as I said feel more energy than a few days ago. My right foot has started in involuntarily moving, not sure what that means, doctors aren't saying anything when I mention it, but although it can be very annoying, in my head I am thinking positive thoughts that the radiation has effected the tumours and given me time closer to the months prognoosis....I haven't had any update scans so I am holding onto faith and all the positive vibes coming my way! I think my family and I deserve that. Comfort wise I'm still good mostly pain free. Still trying to control bowel movements, probably the most embarrassing thing about the whole thing but everyone is amazing at making me feel comfortable. I've increased my meds try and stop them moving and then we can time them when to move, that's the plan anyway! Luckily I have my lovely scentsy warmer on to mask the smell....see I told you I would tell you the good the bad and the ugly or as Oscar says smelly lol! A four year old will just tell you how it is, but gives you a kiss and cuddle after and says, but I still love ya mom! Noah's tooth fell out tonight at bed time, and I was here to celebrate with everyone, we have all been watching this tooth for weeks, but he refused to let his dad aid the process! It was that moment I decided to write tonight, such a simple thing to be part of but I am just so happy I am here for it. So that is why for the poem, to try and find the beauty and happiness in the small things, because they can happen daily, sometimes you have to look for them, but they're there, even the smell of burning wood and a little baby tooth! So I am away to the land of nod, because my kids are up at 6am every morning, but I wouldn't rather be anywhere else in the world. x x Creina I watched a video before by Jay Shetty, look him up, he is an amazing speaker about self awareness, I think he used to be a monk, anyway he is on Facebook, it was about energy. How you have a limited amount of energy and you choose where you spend that energy, and how much energy to spend on what aspect of your life. That has really come to the forefront of my mind the last two days. I have noticed a mark decrease in my energy levels. Talking to the doctor it's likely due to the decrease in my steroid drugs. Unfortunately I cannot stay on the dose I had and I have been having to rest more during the day. I have been really busy with physio and meeting support people as well as organising personal things so I feel its a combination of everything but it still concerns me since there is so much I want to do. It is my plan is to listen to my body more and hopefully manage it better than maybe I have been. Therefore I have taken a step back from messages coming in via social media. I am still having amazing connections with friends and family and others going through a similar story which I love, but not so much the "how are you today" messages, so for that I am sorry but I need to manage my needs and where I am spending my energy, Please do not feel I do not care or your message is unwanted, it is, buy I cannot reply to them all I am afraid. I really wish it wasn't the case and I had the gusto I had just a few days ago, I will continue to update my blog as long as I can so everyone is getting updates which saves me replying to individual messages coming through asking for the same information. I just feel today that energy pot is a lot less than it was a week ago and I need to be sensible. I am still pretty much pain free and in good spirits though, that hasn't changed and I am loving all the pictures and comments coming through. Your support in unwavering which is appreciate so much. Thank you to all who have been in touch about my last blog, your experiences hearing and not hearing the words of loved ones and the effects this has, has been insightful to hear.
|
Go Fund Me PageMy amazing friends and family have set up a Go Fund me page to help towards financial and funeral expenses https://gofund.me/c9319754 Thank you so much for all your love and support. Archives
March 2021
Categories |