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!
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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.
I wasn't sure if I was going to blog today, but the hospice tea and toast has kicked in and I am a bit more awake. The power that be Facebook informed me that it was today 4 years ago I got my mole, later to be melanoma removed. Crazy to think what has happened in that time, I honestly thought it was longer, and honestly, I know people have said it to me but you know what they were right, I have been through a pretty shit time and it has been exhausting.. Maybe I am just having a moment I don't know but I know I have put my loved ones though so much and they have loved me through it and I them. We done not bad, we made it a good 4 years, but if I told my husband three months before on our wedding day....so you know when we say in sickness and in health...well. I spoke previously about the guilt leaving them, but tonight I am feeling the guilt to have put them through so many hospital visits, operations, chemo, radiation, 999 calls, hospice visits....It's just a lot. They will say it's ok and I know it is, this isn't a pity party but this is my blog where I try and be honest in the moment and in this moment this is how I feel. I think it is important for them to know that I know they have been through this too, and there were just as part of this journey, they have the same right to feel angry and unfair and scared and just tired. I know we would do it again in a heartbeat and we will keep doing it for as long as we can, so I guess I want to say thank you for making this part of your journey, and I honestly think you are all so strong for doing so, and I love you. Its quite funny actually, I have spent most the day trying to get myself home as quickly as I can, feeling a bit two-faced right now because of it! It's looking like it may take till the end of next week at the earliest and I am feeling pretty stressed about missing my window to be able to manage to be at home so I guess you can say I am being a bit of a mixed bag tonight, but that 4 year notification has really thrown me. Don't get me wrong I am still wanting to go home, everything I said before it still true I want to be home with my family. The boys came today and it was much more relaxed, just chilling sitting on the bed, still kisses and cuddles and normal chat about school and nursery. Noah happy to be back with friends and was worried about his friend that was missing home. Oscar about the really funny kid that was new so he didn't know his name yet but he was the funniest boy ever apparently, but I think he is, but I am biased of course! I had the doors open watching them play and it just felt right. So I won't be changing my mind about going home, I guess they will just be around for the journey a bit longer, and I know they wouldn't have it any other way! I have had people ask about myself and symptoms etc. I have had involuntary movement in my feet, but nothing I can control, and I still can't move anything from the chest down so no indication yet of the tumours shrinking. Pain I am usually at a 2, so really comfortable. I have a weight on my chest as I have no muscle support so sometimes have to take a bit of a bigger breath but again not uncomfortable. The nurses have been amazing and I guess the hard part is probably more pride....luckily I am a 'It has to be done so lets just do it' kind of person, but I am being washed by these amazing people. I have passed faeces infront of too many people to count at this stage, which they are delighted about, "We cheer about these things in this job lovey" honestly nurses are a special type of person an actual gift, but still I try and just compartmentalise that part of my day and forget about it as quickly as I can. There are hoping to use medication to make it a regular thing, as in planned using suppositories when I am at home. I was having bowel problems after my first surgery so Ross has already been there and has been amazing, I couldn't be more lucky as this is a major factor in me getting home. I have never gained control over my bladder but the catheter hasn't caused any issues thankfully. My skin apparently is good and intact, I had a foot massage at the hospital, good for skin and circulation but I couldn't feel a thing which I thought was funny, but had a lovely chat with the lady. She studied at Napier University as well after she started massage to help her son with autism try to have a restful night, I also got some scent sticks as well which I have been using to relax and for breathing exercises, I have a soft spot for scents so I think she was excited about my enthusiasm and I got a couple extra popped on my table. So as long as things stay like this I should be good to get home. I am speaking to Children and Family services on Monday to help us, and help us talk to the boys. I have memory boxes and cards here that I am working on as well, so I am keeping busy with the things I want to do. I am paranoid about my mental state changing quickly and there is many things I want to do but I am not putting pressure on myself to do it, what will be will be, I can't stop time. I was thinking today about time, as you prob can tell, and how I turned to writing when my mum died and went back to writing now, and then I thought of my favourite Shakespeare Sonnet I guess I feel that is writing, I can beat time, my words and thoughts will last. I am wanting to write letters to the boys but its hard to imagine them at 18 when to me they are 4 and 6! I also then thought about the blog. I am putting a lot of my life and thoughts out there, but it is not just mine. My family are quiet, we are not loud people and here I am putting our lives out for everyone to see. I will have left this life but my family will still be here. I spoke to my husband today about it and he is 100% supportive, that it is my story and if I want to share it I should feel free to do so (I know right, he really is awesome!) but that is now, where at this time it seems all consuming, which in truth it is, but it would be with or without the blog. This way we are so open with our feelings, we have opened conversations that are difficult to start, and I still feel sharing my, our story was right at this time. However in the words of the sonnet my words will last, what will it be like for my husband, for my sons to read them, 2, 5, 10 years down the road. It was a question I was thinking about today. I would love to hear my mother and fathers thoughts when they battled cancer, I was a teen and very much sheltered from the situation, but I am curious in nature. What if my kids want to know but not necessarily want everyone to know? Well I guess I buggered that if it is the case, sorry boys your mum is a talker! No secrets here I'm afraid. At least I have kept it real, not like my Facebook updates, sometimes I look at them and just internally squirm, for many reasons but I have missed many an important time in friends lives because looking at their Facebook their lives seem happy where actually thy are going though it, sorry can't help but write a lecture somewhere in here! So if this blog comes back and causes any family any bit of grievance, I am sorry but I thought about it and wrote it anyway so I guess I have to put my big pants on and say this one is on me, my choice, but you choose to read it!
What a crazy 24hours it has been. I am back in Kirkcaldy in a lovely room garden view and amazing people looking after me, but this is not where I want to be. I was told the hospice is easier for visitors but not really with covid. I can see one person, the same person each day. I was able to get a request in to see they boys today and that was amazing, but I am unsure if that is a regular thing. So I have spoken with the doctors and nurses and we are trying to work on a plan to get me home. This is not a moan or a complaint this is more a declaration that I'm just not hear yet. I am wanting to live what I can and not watching daytime tv and the next meal time to pass my day. It does worry me, the speed at which deterioration can happy, I have seen it with my parents but I also want to be brave enough not to hide away when I know there is so much more quality and love I can give my family. I know if I do get back when I leave again that will be me, but I hope I get to have the time between now and then. Most importantly though, I saw my boys today and it was amazing!!!! A lot of lumps in my throat with the over whelming love I have for them and just how sweet they are, they said all the lovely things I wanted to hear. They miss me, I am their best friend they love me so much, honestly I don't care if bribery was involved, I soaked it all in and felt every word. Soon enough we were giggling and playing, making videos, which further cemented my want to be at home. The hospice gave they boys a teddy each that I cuddle and charge with love and cuddles so when they are at home they can cuddle the monkeys and it was like getting a cuddle from their mum...well that was it, me and ross were trying to hold it together but it was such a lovely thing to do. Noah found it difficult to leave and there were tears, he didn't want to leave me....it was really hard to see, you want to protect your kids and be there for them, but we cannot lie and say don't worry, because his feelings are justified, we are all scared and I know they feel it. We just said it is ok to cry and to be scared, thankfully his dad messaged to say he was feeling a bit better not long after leaving. We have never hidden things from them but we haven't told them yet that mummy has to leave but we are getting support as to how to have that conversation with them. There will be many difficult conversations, but at least it is conversations we can have with them and I think it will help. Kids are so resilient and they have an amazing support network, I know they will be ok, but we a big supporters of mental health and we are speaking with Children and Family Services here to help us, and help the boys both now and after x For me, and Ross really, he has been saying the same thing, we have been overwhelmed with the support we have had from our friends and family, and others that we maybe do not know as well but have been in contact with words of love and support. It has been a while for me to be a practising catholic but to hear from local pastors and that members of the church are including me and my family in their prayers have been a true comfort. I have had some amazing conversations with people that would not have come about in any other circumstances and for that I am grateful to have had this opportunity. I have had photos that I have never seen before and spoken to school friends that have meant so much to me in my life. Lovely words about my parents and how in some ways I have impacted peoples lives. That in itself is amazing, they say to think about your legacy and what you let behind and I can be happy with what I have done. I also feel I am not done though, I an 36, can't move from the chest down but I have so much more I want to do. I may be dependant on time and people but there is many people living like this. So please include the disabled members of your community. It is so hard to be restricted when all you want to be is immersed in the people and community around you. I know covid has made it harder but I urge you connect with people after, when we can be near each other again. I have enjoyed my family covid bubble, thinking about my little frog pond, I wonder will the frog come back. Thinking about my bulbs, will I see them, my garden will like its sponsored by Gardeners World in a few weeks lol, its hard planting so many bulbs! It was nice though because they boys helped me plant them and we were talking about them today. I am lucky I did enjoy small things in life. I wasn't one for looking over at the greener grass, I learnt to appreciate what I had. Sure I liked good coffee and didn't eat meat from a tin but meat from a tin is just strange! The practical things about this situation is strange, no one can give you answers as we don't know how this will develop. You talk about resuscitation and level of treatment, where you want to pass away and funeral arrangements. Quality of life is my focus and I think is best for me and my family. No movement yet from my body, so no indication the tumours have shrunk but it is still early days, so keep up with those prayers, but there is no further treatment available to me. Mentally I feel good and strong. I have had amazing food and decent coffee brought to me, I have had a date night with Ross which was fab, miracle we managed to pick a movie we agreed on but couldn't go wrong with some Bad Boys lol. I saw my boys and hopefully it will get easier the more they visit, but hopefully I will get home. I will continue to write when I can. I know there are many families going through so much and also going through similar situations to myself so I want to say thank you for supporting me and my family. Also it is not about the money but I cannot not mention the support you have provided. I have a lot of guilt leaving behind my family but this has truly helped my financial concerns for my funeral etc and feel less of a burden on them. Thanks to you we can make a change to our bathroom to help me in getting home and we are humbled and grateful for your generosity. Thank you all so so much Creina x x So strange to be back here again, I was just looking back on my blog and it seems both like yesterday and yet so much has happened since. Life was good I graduated with my bachelors of science and although couldn’t use it yet during covid myself and Ross was managing to work, even tried to buy a house more suitable for the boys but the mortgage offer was tiny due to covid and we were advised to wait a year. I set up my little craft business planted my garden with 225 bulbs and was looking forward to 2021 like everyone else.
I noticed a change to my scar in July and after antibiotics and monitoring and then a biopsy it showed the cancer had returned. I was terrified as anyone would be with a stage 4 diagnosis but had the surgery in my leg in October and had my all clear scan in Dec, it was such a relief and I was starting immune therapy to prevent recurrence as much as we can. I was frustrated but we managed to get through it again. With weekly sometimes multiple hospital visits a week I was relieved to be discharged mid January, just another bump in our road. We still had all our 2021 hopes and dreams and we were going for it! It changed quite quickly a week later I was suffering with some back ache, not really concerned thought maybe I was sitting strange, esp since I had a clear scan 3 weeks before. I woke up 31st Jan with numbness between my legs, off I pop to the Vic, was discharged to follow up with oncology, severe pain on the 3rd Feb, they thought it was constipation, but unfortunately a MRI showed the cancer had spread to my spine. It must have happened just before the surgery and it was too small to show on the scan. If only I pushed for a biopsy sooner, but tbh I don’t think it would have mattered. I mean we felt the morning of my surgery some change lower in my leg the week before scan didn't show so we removed so much more tissue than planned and everything happened so quickly and efficiently I honestly can’t see anywhere where this could have been prevented, and I hope that provides some comfort to people. I had my T10 decompression surgery 2 weeks ago and amazing apart from my bladder not working I walked out of the hospital with a cane and was happy back in my own home again. Not really knowing what was in store as I knew the cancer had spread but I was focused on hopefully regaining more mobility At this stage we were looking at 12months life expectancy but we were looking at it with hope and adventure, creating memories with the boys, lots of smiling photos, I really regret not taking more photos with me in them. I was managing a lot of pain, and wasn't able to lie down, sleeping in a sitting position and pacing for hours to try and relieve lactic acid and nerve pain in my legs, It was exhausting looking back. On Sunday I had called the hospital as I had new weakness in my thighs but I would still move and I had my appointment at the western the next day to start treatment so I was to call back if any changes, I was able to lie in the bed for the first time and I took the nice tablets that send me off to sleep and settled in for the night. I woke up after having the best night sleep didn't wake once and was pain free, reached over for my phone and thought, right kids are back at school we are at the western lets get going, and then realised I couldn't move. It was like there was a line across my chest and everything below was just numb. It was so strange I was just lying there and I felt a sense of relief and almost a new calm energy, which was maybe why I didn't freak out. I called Ross calmly and told him and I just said I am calling the cancer team because our main focus was we need to get to the western for treatment and how we were gonna get out of the flat without help was impossible. Thankfully some very strong ambulance men and Ross and a door taken off the hinges, managed to get my out of the flat and to the Vic, where further scans showed a mass growth on my T2 spine but also the T10 growth had already regrown despite being removed 2 weeks prior. Quick transfer to the western in Edinburgh I have completed a strong blast of radiation to both areas in the hope they will at best shrink the growth and I can regain some mobility back. It's strange to say and I am sorry most are finding out through this blog but best case scenario at the moment I will have a couple of months left here with you fine people and I will continue to be comfortable for the majority of it, but who knows what can happen, and how quickly things can change. Its strange knowing you are going to die and how you deal with that news, Its very surreal. I tried googling but it is all bucket lists or metaphorically speaking. I guess all I can do is do what's right for me, I am as always focussing on the positives, I can text and type, I can eat and drink good food and enjoy conversations, I can talk to my boys which I am hoping to speak to macmillan tomorrow about and support them for as long as I can and I can tell people do you know what, yes I will have regrets, I wanted the house for the boys, I wanted to leave us better financially, wanted fecking life insurance but also that I am so so happy with my life, I have experienced so much love and support from friends and family. Ross, truly is my best friends and makes me laugh more than anyone, I have two amazing boys who won't always make the right choices in life but have people who will love them and support them. I feel self worth which is hard to find, I do try and be nice to people and see their cross they carry and not compare it to mine, hey I am far from perfect I have hurt people in the past, but I am happy to where I got. I can let my family know what I want going forward and I can to an extent make it a bit easier with what's to come. Anyway while I can I will continue to write updates and no doubt some rambles but feel free to read or not to read and please comment if you would like. Thank you to my sisters who have set up a go fund me page to help with the coming months and funerals costs etc and to everyone for your emotional support and messages although it is hard to reply to you all as I said it feeds my soul hearing from you all x x gf.me/u/zkgbjs I would appreciate giving my family time to process everything that's going on, as I know not everyone would have shared this socially like I have chosen to do but I also want to make the most of this opportunity to talk to people while I'm here and able x x Lots of Love, and be kind to each other. Creina x x Happy to announce I have received the all clear, I heard at the start of the week but I have been so busy I have not really “announced” it, which I probably should have as I know there is blog followers who have been waiting to know, for that I’m sorry. How do I feel…I’m relieved that nothing showed in my scan, but I don’t feel relief. Hopefully that’s something that when it sinks in, the feeling will emerge. As I want to feel relieved, I want to feel better and feel I can put cancer behind me in some way.
Ross my husband has had his surgery and was in bed for the last 2 weeks, thankfully now is a bit more mobile, for his on sanity and mine. It was hard caring for the boys and him, so bloody hard. Having him in bed not able to help at all showed me how much of a support he actually is. In some ways I could have helped myself, gave him the washing to sort while in bed, pair socks, things like that, but I didn’t and do you want to know why? I wanted to brag about myself, to myself and all that I had to do and done, nothing is better than self-praise, right? This was all sub consciously I would like to point out, until now, when I was trying to think of a reason why, Absolute eejit that I am! So, I’ve not sat down and watched the six nations rugby, I’ve watched the highlights of the winter Olympics and it’s my own fault! However, thankfully I started a blog and now I can tell everyone all I have done, aren’t I such an awesome human being, wife and mother! Physically, I’m doing better in some areas than others, my hair is coming in pretty thick (on my head!!) Seems to be similar color and texture to what it was before. I’m bridesmaid in April so as I got the chance for another wig I went for a long one so I could pin it up and have a bit more variety. Its stunning but a lot harder to manage. I had it in a low pony tail to the side last week when I went to lunch with my family, I noticed a woman looking at me a bit strangely. Didn’t think much of it, to be honest my youngest was cranky and tired so I thought she was watching his tantrum unfurl. It wasn’t until I went to the ladies about 20 minutes later I realised the wig had shifted while I was up and down picking up toy cars and crayons in the restaurant. The temple bit was up by my forehead and the side parting was at the opposite side of my head! Thankfully I easily shrugged it off but if this was my first wig I don’t know if I could have been so blasé. My short wig doesn’t have the weight so is much more stable. Also, it matts so much more due to its length so as I was advised when I first went, short wigs are much more manageable. I have been out without a wig quite a bit. I usually wear a hat going to and from nursery (that doesn't really account as my head is covered) but I had a night out at a friend house and decided to just have my short hair and it didn’t faze me as much as I thought. My skin is still dry and thin, feet are really bad and lips are very cracked. Nails keep bending and breaking quite low down and I even lost half a toenail (but has grown back!). Energy has improved though and I am awake much later into the night, not exhausted by 5pm. So, I can see positives and I know my skin and nails will improve with time, I can handle temporary. I watched a Facebook video about the professor filling the glass with golf balls and then stones, sand and then beer, have you seen it? It’s about how full your life is and with what. I found it very inspiring. I knew I had been neglecting my friends for years, and I used life as a reason, like I’m the only person with kids! However, it brought it to the forefront of my mind. Thankfully my friends have always been there, but really stood by my side through the last year and what this has shown me is, yes, I am a good mum and wife, but I am a crap friend! I’m always so busy with life I never made time for a chat, a coffee or a phone call. Friends have moved to several houses and I’ve not seen them, have got jobs after University, and honestly, I can’t tell you what they do, unless they have announced it in Facebook! Facebook, that is probably the enemy of friendship. I think what is on their profile is what is happening in their lives, but the Facebook persona created is what you want people to see, from colleagues to cousins, your close friends know better and I lost that. I have decided to make the best of what I can control and focus on people, my family and increasing the circle of people around me but also be around them. I have had a few blog readers reach out to me recently for information and just to chat and I have loved being that support someone wanted to turn to and to think that this blog has helped people makes me so proud. I started it for me as my outlet and it has turned into so much more. Thank you to those who have got in touch with me and to anyone that would like to please, just message me, I’d be so happy to hear from you. Any friends old and potential new want a cuppa I’m up for that too! And there it is, last chemo session done. Strangely it was like any other. I don’t know what I was expecting. Fireworks, bunch of flowers? A card? I didn’t want a fuss so to be honest damned if they do damned if they don’t. The truth is chemo became the normal for us. We are so used to bloods and chemo every second week. Day of rest on the Wednesday, sick till about Saturday/Sunday and repeat! What do we do now???? I’m quite a particle person so automatically I want to arrange “a recovery plan”. It’s like I need something in place, for sanity maybe? Went to my trusty pal Pinterest and there was nothing really about what I should do next physically so I googled it. A number of board chats and blogs came up about the emotional recovery after cancer. Do I ignore my emotional needs on purpose? I never even considered what it means to me emotionally to be finished. Who likes to deal with emotions anyway! There was a lot of discussion about staying strong during treatment and all your emotions hit you when it’s over. Feelings of isolation and loneliness. People not understanding why you’re not happy you’ve beat cancer. I can’t say about others but for me I guess it’s not that I’m unhappy but I know it was there, in you once, it can happen again. Remission doesn’t mean gone forever. I always thought I would get cancer (when I was a bit older) Just because there is so much cancer in my family, but when you know your body has produced cancerous cells/tumours, you feel vulnerable. I guess I feel the fight isn’t over, but then I never felt that way. When you have someone close to you fight cancer or if you lose someone to cancer, you fight it every day. I don’t think you have ever beat cancer because it is a fear, an emotion, and a memory before it ever was a part of me, physically. Emotionally it has been a lot harder seeing someone else go through it than do it myself. The recovery physically can take months, some side effects don’t go away and yes naturally there will be a decline in support, but that’s life. The world still moves regardless and maybe that’s a lesson I learnt and struggled with when I was a teenager, and these people are learning it now. Harsh lesson to learn. Onto my practical rant. So yes, my last chemo was like any other. Until I had to ask the question, what happens next, what do I do with my medication? What’s my recovery plan with haematology? The nurse didn’t know, she asked the pharmacist about mediation, so I just continue with that until I finish what I have, it’s only antibiotics, so happy to continue to give my immune system time to recover. I was given a doctor appointment for a months’ time after my scan and that was it. I know a lot of the details will be discussed with my doctor, well actually I doubt a lot of it will be discussed but will wait and see in Feb. I kind of got a glimpse into the lack of support though. There is definitely a gap in support, on your last day you want as much information as the first but then I guess everyone’s last day can mean different things and technically I don’t have the all clear officially yet, but I was left wanting. What I googled the past week….hair growth serums, eyelash treatment, eyebrow growth, dry skin care, dry foot care, encourage nail growth/ brittle nail care. Exercise to strengthen legs and wrists. Low impact exercise and fake tan for dry skin. I got side-tracked a few times but didn’t buy any potions yet! Castor oil seems to be a good home alternative without making myself bankrupt. One hair growth serum was like £58 recommended to use the complimenting shampoo and conditioner, of course! I didn't lose all my hair, its very short but I will have a pixie cut for the summer but it is very limp so looking it help it as much as I can. My dry skin "everywhere" can go do one, its a nightmare, But now I can use nice products and natural products instead of the bland, PVA glue smelling lotions I was using. So I’m looking into what’s best for me now. I feel like it’s New Years, resolutions, trying to be organised (I wish I was more organised). I have a doctor appointment to discuss supplements and diet this week. I have a hair appointment to pick a new wig, (I'm a bridesmaid in April), and I will be booking a dentist appointment, as I need the hygienist desperately! I picked up the courage to log into Uni. I passed my assessment and I have two exams in May that I need to study for. Toxicology terrifies me, but I’ll get there. My hubby Is getting surgery soon also on his Achilles tendon, will be off his feet for a good few months. Which won't be easy for him, cabin fever!!! More than one day inside he starts getting irritated! Our marriage survived cancer but watch this space(kidding of course!!) I still need to get my Gallbladder out this year also, so 2018 won’t be all good health wise but it can’t be as bad as 2017 surely? Hopefully some fun times ahead. Will likely continue to blog as I have really enjoyed writing down thoughts and experiences, and just think, future life events will include wine! Ohh I wonder when I can have wine???? 1Writing for the first time on a chemo day. Usually I’m in my bed by now but I’ve been sleeping for a few hours and then lying awake at night for the past three nights. So, trying to stay awake till about 9 maybe 9.30pm, I’m so rock ‘n’ roll!!!
It’s been all Christmas spirit in my house, organised for weeks and have been doing some Christmas crafts, with and without the kids. This is all because I now have limited pain in my hands and arms. An “old school” nurse at the ward suggested flushing all the drugs from my arms and it has worked. No more rocking in tears and restricted movement. I’m very weak in my arms and legs, I can tell when opening bottles or climbing stairs but I can work on that when it’s over. Also, they are doing an extra flush for I think three more patients who have been suffering with pain now, so I’m so happy it has helped others. It does mean another hour on top of a three, four-hour chemo day but it is worth it. I had my first dermatology follow up, sometimes I forget that I had two cancers! So much time has passed that further surgery on my lymph nodes is likely not to have any benefit at all. If the cancer was to spread it will have done so by now! The funny, not so funny thing is, that chemo is so specific to each cancer, ABVD chemo will not kill skin cancer. Ironic that 6 months of chemo and another cancer could be happy on its way! It’s not all glum as remember I have had a PET scan and nothing is showing up. I’m glad I know my ending no waiting for further tests and results, slowly going insane! I will have a further CT scan week Feb 5th, but again this is routine. Seeing the end now, two more treatments to go! The appointment was uneventful, was told to get undressed and then dress again. This woman must see a lot of naked people every day! Had a proper moan at the dermatologist too. DRY SKIN…. how do ladies, or men deal with this! My body is soaking up moisturizer. When I put makeup on, my nose, it’s like polka dots, how do you put foundation on dry skin without it looking, and feeling like a buildings foundation. Hoping I go back to my combination skin, and I will never moan again. Anyway, the dermatologist gave me a prescription for a wash, and a moisturizer, Ego, Qu I think is the brand, but seriously I could have been getting this on prescription!!! I have been gifted so much body lotion and bought a lot myself, I didn’t know I could be prescribed it! Downside, it is the opposite of feeling special as you can go. It smells of a new plastic toy, texture is a but slimy and no lather in the wash but it’s because there is no harmful ingredients, it basic because it is meant to be, I prefer my Aveeno, I think I will continue to use this product after cancer. I can usually find it on offer but regardless it’s money and cancer is expensive, chemo care is expensive and I hope it helps people knowing, yes, a prescription is an option and I wish I knew sooner and not weeks before I finish my treatment. I still don’t know if I should moisturise my head btw! I’m bald again, my hair growth was very limp and dull and resembled a greying black dog’s hair. So, bored, sitting on the toilet for the 8th time that day (happens a lot chemo week) I got my husband’s clippers and just shaved it. I had worn my short hair out a few times, so I feel comfortable enough to think I can wear a short pixie cut when I start growing it bac. I’ve not worn a bald head out yet! Another cut at the end of Feb and then it should be drug free growth. I’ve almost had a product detox, hair products, skin products, I have no idea where my ghd’s are but it’s been refreshing. Whether I will become obsessed when it does grow back is another thing! My mums anniversary was the 17th Dec, and I had a lovely day, my brother was visiting and my sister and I all went out for shopping and coffee and chatting, it was a really nice way to spend the day, but I thought a lot about her today during chemo. Like, I wish I was there for her more but she sheltered me, she didn’t speak about it. I’ve been battling my own guilt, but I was young and didn’t understand, or didn’t want to understand as we were all scared. I remember my whole family being scared but never talking about it, well to me because they thought they were protecting me. I have had so much support and love given to me since this all started, I couldn’t imagine doing this on my own, I didn’t think I would have managed or been so positive. My dad also passed away from cancer, it will be his anniversary on the 30th Dec. The gentle giant he was called by those who knew him. Maybe a pint in the pub just to mark the day, but they are both always with me. So the blog will be changing slightly in the next month, turning into a life after cancer, good hair days and bad hair days kind of blog. More about my life full of follow up appointments and daily hilarity. I’m not saying goodbye yet but we are so close to this chapter of my life ending. Just to leave you with a smile, I got a Christmas card wishing me health and happiness for 2018…..I’m telling you now, it better be an improvement at least! |
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March 2021
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