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!
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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 |
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
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