A few people suggested I start a blog after I was diagnosed. Mostly because it's a good way to vent and it means you can look back and see how far you've come and how things have improved. I Agree that writing your thoughts down is an excellent way to vent frustrations without moaning to loved ones, it's also a good way of putting order into your thoughts to help you think clearly when you're head seems to have too much flying around in it all at once!
However, I didn't see the point in a blog as I felt it was a personal thing to do and no one else need be concerned with it. Instead I bought a lovely little leather bound notebook and i've been keeping my notes in there.
Since then, I've realised why a blog is a good idea. Whilst searching for hope on the internet I came across a few blogs of people who have been battling synovial sarcomas. The positive attitude and courage in some of these people when facing what they have to face has inspired me and lifted my spirits so many times now. I always thought my story was a bit too doom and gloom to bring to anyone's attention as most people are looking for success stories. I feel now that with all the twists and turns, my story is worth telling as it might give others hope and strength to stay strong and carry on when the outlook is bleak!
I've just started what I think is the final stage of my treatment, hence the 'better late than never'.. So I shall summarise the whole escapade and see how it pans out.
Tuesday 19 April 2016
Day 20 in hospice.
I never thought for a second I would have been here 20 days! And I certainly never thought that 20 days after arriving I would be breathing a little easier and moving around a little more than I was when I arrived. I think myself and everyone else fully expected my health to continue to decline. It did at the beginning and then something changed. I began to stay stable which I think is what I could hope for at best.
Now I'd say things are improving. I don't fully understand why as I obviously have tumours which are progressing and compromising my heart and lung function but for whatever reason I am breathing and moving A LITTLE easier. I still cannot move around easily without needing oxygen to recover. But its a little progress, and when you're taking life a day at a time thats a great thing. I mostly notice it when reading to Robin at night. It just feels like I can get more words in the sentence out. So I am pleased :) I definitely don't need the oxygen as much at all.
Still wrestling with the emotions of "why can't we just give this treatment a try" but I think that's only human. Acceptance is still at the front of my mind.. there's just a little "what if i'm getting better enough to carry on with my treatment plan?" creeping up there sometimes too. So I emailed my oncologist.. She wrote back and say she'd be happy to see me, but if i wanted to continue with my treatment plan I would have to be "getting around under my own steam" for most of the day again, otherwise I would be too unwell for treatment. Which makes sense to me. I don't know if I could get there, but stranger things have happened I suppose.
So today the doctors stopped some of the meds in my pump to give me by tablet if I need, them, we're thinking of getting me off the pump all together and if I need painkillers just to take them in tablet form. After that that it's really just my breathing thats holding me back, which is improving but I'll fully understand if it can't get back to normal. All in all, things are getting better little by little. And even if its just to give me more time at hospice enjoying my family, that's great too! In all honesty though I'D JUST LOVE A RIGHT GOOD DOSE OF RADIOTHERAPY TO THE TUMOUR AT MY HEART PLEASE AND THANKS! To take the pressure off and let me get healthy enough to have trabectedin :)
So I went outside today!! I cannot believe it's been three weeks, I have never been inside for more than a day! It was a beautiful day and just so good to see that I can do it. Now I'm thinking of where we could escape to in the van for a quick visit with the wheelchair :) I just went out to the grounds around here, and planted some of our veg for the garden round at our van. It was amazing to feel the sun on my face again and see Robin running around. I LOVE just watching him do his little thing. Everything about him amazes me. For someone so small he has such a big heart and soul. Tonight I was talking to Davy about some anxieties I have, Robin listened in and he got out of bed and came over and just hugged and kissed me, for a little guy he's so in tune with how others feel and how he can influence that. Best wee dude ever! x
Now I'd say things are improving. I don't fully understand why as I obviously have tumours which are progressing and compromising my heart and lung function but for whatever reason I am breathing and moving A LITTLE easier. I still cannot move around easily without needing oxygen to recover. But its a little progress, and when you're taking life a day at a time thats a great thing. I mostly notice it when reading to Robin at night. It just feels like I can get more words in the sentence out. So I am pleased :) I definitely don't need the oxygen as much at all.
Still wrestling with the emotions of "why can't we just give this treatment a try" but I think that's only human. Acceptance is still at the front of my mind.. there's just a little "what if i'm getting better enough to carry on with my treatment plan?" creeping up there sometimes too. So I emailed my oncologist.. She wrote back and say she'd be happy to see me, but if i wanted to continue with my treatment plan I would have to be "getting around under my own steam" for most of the day again, otherwise I would be too unwell for treatment. Which makes sense to me. I don't know if I could get there, but stranger things have happened I suppose.
So today the doctors stopped some of the meds in my pump to give me by tablet if I need, them, we're thinking of getting me off the pump all together and if I need painkillers just to take them in tablet form. After that that it's really just my breathing thats holding me back, which is improving but I'll fully understand if it can't get back to normal. All in all, things are getting better little by little. And even if its just to give me more time at hospice enjoying my family, that's great too! In all honesty though I'D JUST LOVE A RIGHT GOOD DOSE OF RADIOTHERAPY TO THE TUMOUR AT MY HEART PLEASE AND THANKS! To take the pressure off and let me get healthy enough to have trabectedin :)
So I went outside today!! I cannot believe it's been three weeks, I have never been inside for more than a day! It was a beautiful day and just so good to see that I can do it. Now I'm thinking of where we could escape to in the van for a quick visit with the wheelchair :) I just went out to the grounds around here, and planted some of our veg for the garden round at our van. It was amazing to feel the sun on my face again and see Robin running around. I LOVE just watching him do his little thing. Everything about him amazes me. For someone so small he has such a big heart and soul. Tonight I was talking to Davy about some anxieties I have, Robin listened in and he got out of bed and came over and just hugged and kissed me, for a little guy he's so in tune with how others feel and how he can influence that. Best wee dude ever! x
Thursday 14 April 2016
Time is a funny old thing.
So i'm STILL here! Over two weeks since my doctor suggested I brought my son up to say my goodbyes and more family huddled round to do the same. I'm still just.... here. Which I am obviously very very pleased about! I almost feel bad about putting people in to a panic and then here we are now! Like I have to explain "sorry for the alarm, I'm not sure why but i'm still here and doing good!" However, with all the passing time I find the quiet acceptance of dying soon that I had when I arrived at hospice after having danced a little with death, waining. Little questions of "what if i'd agreed to that treatment on that day when I got my last results, would that have stopped things coming this far so quickly?" "Why can't I just start treatment now and try to stop things growing or shrink them a little again for a while?" I was so close to starting treatment again, had I realised a few days could have made such a difference of course I'd have acted differently and accepted it right away... I could never have known though, no one could. I'm pretty sure my oncologist was just as surprised to see me in the state I was in so suddenly as I was.
But aye, I''ve been letting these little things creep to the front of my mind despite knowing there's no point! Its just how it is now, and how it was always going to be. I just need to remember the bigger picture, why i'm lucky and what to be thankful for and that acceptance is key.
In the grand scheme of things at the moment, it's still going very well. I'm living in my little room, making things, spending time with Robin, putting things in order. I'm so grateful I can do all this. It is wearing a little thin and getting a little frustrating being in bed so much. I'm amazed at how quickly muscle deteriorates. My arms seem ok cause of the mammoth crochet sessions but my legs and back are all but giving in. After only two weeks? I've began moving from the bed to a chair, very exciting, saw the room from a whole new perspective, haha :) It actually DID make my day to move a little and be beside the window. The next time it's sunny we're going to see about getting me in a chair and getting me outside! The doctor came to see me yesterday and she was pleased with how my lung sounded. Obviously its hard just with listening and no imaging but it does sound clearer and the lung is taking air in low down where the fluid was. I suppose one of the worst case scenarios was the fluid building back up rapidly, that's definitely not happening :) So hopefully it can continue like this and who knows how much time I could have. I've said this before but health is not the absence of disease but the presence of vitality and overwhelming wellbeing! Not that I feel full of vitality by any means, I do feel strong in a way though, not physically, but mentally I feel vitality. I definitely do have an overwhelming sense of wellbeing though thanks to everyone in here and around me. The staff, my family, my friends. I feel well, comfortable, healthy to a degree and very happy!
I do wonder exactly what it is that stopping me being able to breathe and move around. Im guessing it must be the pressure on my heart from the tumour which is obviously still growing, and it was going fast before. Its different in hospice where your care is based mostly on how you are feeling and how you are coping. Where as before it was based on what images were telling us were happening despite feeling fine my images were bad. Now I have no images to explain why I can't move around anymore. It's flipped. But they are taking good care of me and I feel very comfortable. '
Robin has been a little sweetheart. He's been here most nights holding my hand and watching films, jumping in or cuddles in the morning! Tonight when I was reading to him I asked Davy to take over as I was only getting about three words out between breaths and Robin said "No mummy, i like you reading it, it's ok if you can't breathe, I don't mind waiting to see whats happening!" Which I thought was really very sweet and so I continued on! He does miss home though and I feel bad about that. I'm not sure what would be the best balance for him, staying with the family in the hospice or a mixture of going home for sleepovers with grandparents and staying here with us.
Yeah it's been a funny . When time is so precious you just want to seize the day! Thinking of ways to seize the day from a chair by a window in a pair of pyjamas is quite a challenge:) So far, making things is the only plan I can some up with. Until Robin arrives back and then no plan is needed!
I spent time today thinking of lots of things I'll never seen again, it quickly turned in to time thinking of things i've seen and experienced. It was a nice way to spend some time. I've been so many places and experienced so much its unbelievable. Spending time outdoors, travelling and time spent with the people I love are definitely the best things in life. I'm so glad I was surrounded by family and friends I loved, opportunities to experience nature in some pretty special ways and being able to travel to toally different cultures and experience them first hand. WOW. Its just been such an amazing life. I wish I'd taken more photographs!
Oh, and all the sunflowers have popped already :) Its MID APRIL! Need to get the veg in.
But aye, I''ve been letting these little things creep to the front of my mind despite knowing there's no point! Its just how it is now, and how it was always going to be. I just need to remember the bigger picture, why i'm lucky and what to be thankful for and that acceptance is key.
In the grand scheme of things at the moment, it's still going very well. I'm living in my little room, making things, spending time with Robin, putting things in order. I'm so grateful I can do all this. It is wearing a little thin and getting a little frustrating being in bed so much. I'm amazed at how quickly muscle deteriorates. My arms seem ok cause of the mammoth crochet sessions but my legs and back are all but giving in. After only two weeks? I've began moving from the bed to a chair, very exciting, saw the room from a whole new perspective, haha :) It actually DID make my day to move a little and be beside the window. The next time it's sunny we're going to see about getting me in a chair and getting me outside! The doctor came to see me yesterday and she was pleased with how my lung sounded. Obviously its hard just with listening and no imaging but it does sound clearer and the lung is taking air in low down where the fluid was. I suppose one of the worst case scenarios was the fluid building back up rapidly, that's definitely not happening :) So hopefully it can continue like this and who knows how much time I could have. I've said this before but health is not the absence of disease but the presence of vitality and overwhelming wellbeing! Not that I feel full of vitality by any means, I do feel strong in a way though, not physically, but mentally I feel vitality. I definitely do have an overwhelming sense of wellbeing though thanks to everyone in here and around me. The staff, my family, my friends. I feel well, comfortable, healthy to a degree and very happy!
I do wonder exactly what it is that stopping me being able to breathe and move around. Im guessing it must be the pressure on my heart from the tumour which is obviously still growing, and it was going fast before. Its different in hospice where your care is based mostly on how you are feeling and how you are coping. Where as before it was based on what images were telling us were happening despite feeling fine my images were bad. Now I have no images to explain why I can't move around anymore. It's flipped. But they are taking good care of me and I feel very comfortable. '
Robin has been a little sweetheart. He's been here most nights holding my hand and watching films, jumping in or cuddles in the morning! Tonight when I was reading to him I asked Davy to take over as I was only getting about three words out between breaths and Robin said "No mummy, i like you reading it, it's ok if you can't breathe, I don't mind waiting to see whats happening!" Which I thought was really very sweet and so I continued on! He does miss home though and I feel bad about that. I'm not sure what would be the best balance for him, staying with the family in the hospice or a mixture of going home for sleepovers with grandparents and staying here with us.
Yeah it's been a funny . When time is so precious you just want to seize the day! Thinking of ways to seize the day from a chair by a window in a pair of pyjamas is quite a challenge:) So far, making things is the only plan I can some up with. Until Robin arrives back and then no plan is needed!
I spent time today thinking of lots of things I'll never seen again, it quickly turned in to time thinking of things i've seen and experienced. It was a nice way to spend some time. I've been so many places and experienced so much its unbelievable. Spending time outdoors, travelling and time spent with the people I love are definitely the best things in life. I'm so glad I was surrounded by family and friends I loved, opportunities to experience nature in some pretty special ways and being able to travel to toally different cultures and experience them first hand. WOW. Its just been such an amazing life. I wish I'd taken more photographs!
Oh, and all the sunflowers have popped already :) Its MID APRIL! Need to get the veg in.
Monday 11 April 2016
Tea, toast and tenna lady!
Tea toast and tenna lady!
Just a few of the fabulous free things you get in here. I am totally sold on the tenna lady, never going back to normal pants again. Why would you? Little follow through? No biggie, just rip em off. Going for a shower and forget to take them off? Just rip em off in there and bin them! Travelling? Just take your TLs with you, more room for smuggling wine on the way home and less washing to do! I love them!
The tea and toast is great too but I'd trade it all in for a day at home in my own clothes, being able to walk around my house. Get Robin ready for bed, read his story and cuddle him in his little bed. It's funny to think of all the simple things I didn't often think about that seem so big now I know we've done them for the last time. Picking him up from nursery, bathing him, waking up alone with him and sitting in our jammies until it's time for nursery.
Anyway, spilled milk and all that, here is where we are and where we are is here. I finished my blanket today which made me more happy than I think anyone will realise. Having something to leave that Robin watched me make for over a year and suddenly turn in to something over a week in here. He loves it too, and I love that it's something that will bring him comfort and warmth like a mother should :)
Two days ago there was definitely a marked decrease in my breathing again. No scares, just a quiet progression. The fluid had risen a little again in my pleura but not by much. Given the fact they though I might get no relief from draining and I've now had almost two weeks of stable good days to spend with my loved ones it's amazing! But yeah, a wee change two days ago that seems to have stayed that way. I guess that might be how it goes, little decreases here and there. There's no telling.
Robin has stayed four nights now and they've been amazing. We usually watch a film, then I breathlessly read three words at a time of his book while he patiently waits and listens to the story then we all hold hands for a while (robins idea) then go to bed! The morning snuggles in his pants with thunderbirds on and the nurses bringing him breakfast in bed are the highlight for me though. Something we never did at home as we have no tv in bed and no one bringing breakfast. Also it's just so good to feel his little skin against me again.
I really can't believe I got this much time from the draining after discussing it being too much of a risk to bring any benefit! I know I just said that but I'm so happy about it I'm saying it again! I really was a goner with that fluid in there, I wouldn't be here today. I've sent out the appropriate thank you's for this precious time.
It's frustrating as well as precious. If I didn't have that blanket I think I'd have divorced my whole family and fell out with everyone at the hospice. Lying in bed is HARD! I need to start a new project I think. Something therapeutic like crocheting but not so big that the race against the clock is making me neurotic about having a darning needle waiting at 7am as soon as I wake up!
I wonder how Davy tirelessly just IS, all the time. He's my oxygen concentrator mover, my body mover, my bed fixer, my get me on to the chair man. And when he's not here I get nervous and ask him to hurry back. He must be demented but he doesn't let it show. He carries on with such grace and fortitude, you couldn't find yourself a better man. Well maybe one that talked a little less about trees, and lights, and some other stuff... Or maybe just less talking in general! I'm kidding... Sort of.
It's sunny again, and I'm alive :) x
Just a few of the fabulous free things you get in here. I am totally sold on the tenna lady, never going back to normal pants again. Why would you? Little follow through? No biggie, just rip em off. Going for a shower and forget to take them off? Just rip em off in there and bin them! Travelling? Just take your TLs with you, more room for smuggling wine on the way home and less washing to do! I love them!
The tea and toast is great too but I'd trade it all in for a day at home in my own clothes, being able to walk around my house. Get Robin ready for bed, read his story and cuddle him in his little bed. It's funny to think of all the simple things I didn't often think about that seem so big now I know we've done them for the last time. Picking him up from nursery, bathing him, waking up alone with him and sitting in our jammies until it's time for nursery.
Anyway, spilled milk and all that, here is where we are and where we are is here. I finished my blanket today which made me more happy than I think anyone will realise. Having something to leave that Robin watched me make for over a year and suddenly turn in to something over a week in here. He loves it too, and I love that it's something that will bring him comfort and warmth like a mother should :)
Two days ago there was definitely a marked decrease in my breathing again. No scares, just a quiet progression. The fluid had risen a little again in my pleura but not by much. Given the fact they though I might get no relief from draining and I've now had almost two weeks of stable good days to spend with my loved ones it's amazing! But yeah, a wee change two days ago that seems to have stayed that way. I guess that might be how it goes, little decreases here and there. There's no telling.
Robin has stayed four nights now and they've been amazing. We usually watch a film, then I breathlessly read three words at a time of his book while he patiently waits and listens to the story then we all hold hands for a while (robins idea) then go to bed! The morning snuggles in his pants with thunderbirds on and the nurses bringing him breakfast in bed are the highlight for me though. Something we never did at home as we have no tv in bed and no one bringing breakfast. Also it's just so good to feel his little skin against me again.
I really can't believe I got this much time from the draining after discussing it being too much of a risk to bring any benefit! I know I just said that but I'm so happy about it I'm saying it again! I really was a goner with that fluid in there, I wouldn't be here today. I've sent out the appropriate thank you's for this precious time.
It's frustrating as well as precious. If I didn't have that blanket I think I'd have divorced my whole family and fell out with everyone at the hospice. Lying in bed is HARD! I need to start a new project I think. Something therapeutic like crocheting but not so big that the race against the clock is making me neurotic about having a darning needle waiting at 7am as soon as I wake up!
Having a snuggle under the finished blanket, which I think we're both pleased with :)
I wonder how Davy tirelessly just IS, all the time. He's my oxygen concentrator mover, my body mover, my bed fixer, my get me on to the chair man. And when he's not here I get nervous and ask him to hurry back. He must be demented but he doesn't let it show. He carries on with such grace and fortitude, you couldn't find yourself a better man. Well maybe one that talked a little less about trees, and lights, and some other stuff... Or maybe just less talking in general! I'm kidding... Sort of.
It's sunny again, and I'm alive :) x
Wednesday 6 April 2016
Living, loving, healing and accepting!
Hospice!
So the shit hit the fan last Friday. I woke up as normal, started cooking an omelette for my beautiful son and felt chest pain. Nothing major but I knew it wasn't right and wasn't going away. I took myself to A&E where we decided I could come back the next day for a scan (it was the easter holidays) the next day the scan showed some fluid in the lining of my lung and I was sent home as long as it was manageable and I could meet with my oncologist the following week.
I went home and enjoyed something I will never ever take for granted and the very thought of it makes me well up with joy and sadness all at the same time. For the last time, ever, I got my son ready for bed. Put on my own pyjamas (trousers and and t shirt, which believe me I miss!) Lay beside him and read him a story. I couldn't lie back, I knew I probably wouldn't last the night at home so I let him stay up late in bed and we watched a movie on the laptop and cuddled. Absolute bliss!! Later when my beautiful angel was asleep beside me I told Davy that I had enjoyed our little night together so much but I couldn't stay there. I called my mum to come and be with Robin and we were going to go to hospital but I couldn't make it to the car. I could not breathe enough to walk from my house to the car.
We managed to get me down stairs to where the ambulance wouldn't disrupt my beautiful boy and there I waited to leave what we affectionately know our home as "the top of heaven" for the last time.
I was taken to hospital. Given oxygen although my breathing got worse. Eventually I was moved to the cancer hospital and had "the chat" with my oncologist that after five and a half years my cancer had caught up with me. I had Robin brought to my room and we shared what I thought was our last evening of kissing, laughing, hugging and chats of love and death.
Soon a wonderful man came to aspirate the fluid in my lung for some relief. (Something my onc was very nervous about trying) Very risky as I only have the one lung but he didn't grand job and we got 900ml. Unfortunately a while afterwards things took a turn for the worse and we thought that was it. After lots and lots of morphine and a very hazy day of I love you's and I wish I told you mores with my family I came out the other side! That happened a week ago.
Since then I have been in hospice. I have had one more bad turn where my breathing would not function and we don't know why. Other than than I have been very peaceful In this beautiful little place full of angels. It's only five minutes from my house so Robin visits every day. I cannot move from my bed to a chair. But I can lie down and talk and crochet and hug my son and tell him I love him and that's what I've been doing. I'm not sure how much time I have left but at he moment I am savouring it. I feel a little at peace knowing it's the end now. However still very much in fear of asphyxiating again.. I think they would get it (meaning my path to death) under control fairly quickly but the last two times have been my least favourite experiences of my life.
I have been feeling mostly peaceful, a little sad, quite scared but more than anything grateful for this time with my family and when reflecting on the life I've lived!
I've been utterly overwhelmed by how my family and friends have come together to make my passing as I'd like. From respecting my wishes to just be with immediate family, to sending food, gifts, books to help with acceptance, helping me get affairs in order that I cannot do.. Printing photo albums for robins memory box, writing letters to my son about me for his memory box, collecting loose ends I should have collected a while ago. I am surrounded by the most wonder friends and family anyone could ask for and I cannot begin to express how grateful I am!
I am feeling very loved. Very blessed! I can't say I'm not sad and scared but I can say love and blessings are outweighing the fear and sadness!
I'm obviously biased and I'm sure a lot of people feel this way before death but my life has been absolutely amazing and I could not have asked for more. I have experienced more in five short years with my son than many people get to in a lifetime. I have a family (and I'm including my friends in this) whose unconditional and unfaltering love shines through the darkest moments. I have a job I love more than people love their best hobbies. I could go on but I won't.
I am truly blessed and full of gratitude... Is the bottom line basically, for now!
The tumour behind my heart it making it hurt to breath and I can feel the pressure, we'll see how long we can squeeze some days out to finish robins blanket and tell him I love him some more! x
These aren't particularly beautiful pictures to anyone other than me but they are of huge significance as they were the last moments with my family on those nights of close calls! And one of us planting our sunflowers for this year which I'm so glad I got to do!
Our last night at home :)
My emergency room which I thought Robin might like :)
Robin taking pictures when he came to say bye.
Another of Robins
Planting this years sun flowers.
Watching a film and making Robins blanket in the hospice!
My beautiful boy!
Our last night at home :) 
My emergency room which I thought Robin might like :) Robin taking pictures when he came to say bye. Another of RobinsPlanting this years sun flowers. Watching a film and making Robins blanket in the hospice! 
My beautiful boy!
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