Living when you're dying.

I've always hated the idea of "battling cancer", or people saying they "kicked cancers ass". There's no battle.. if cancer wanted to take you out it could do so with ease. If you have an aggressive cancer and don't die of it you've been spared. I don't think I could ever kick cancers ass, but science can. I hope no one says "after a battle with cancer..." when i'm gone. No one wins, and no one loses. You just keep on keepin on, there's no fighting.

I feel like so much has been taken from me that I can't actually be me anymore. I can't do anything I want to do, go anywhere I want to go. I've been feeling so frustrated recently. The weather has been amazing and in any other circumstances we would have dropped everything and taken the camper van up the north west coast. Or i'd be at work, checking the owl boxes in the sunshine. I feel a bit bad for being so agitated about it, it is what it is and I have to accept that. I spent a day in my garden and we had some music on, had a BBQ whilst Robin played around and Davy planted up the veg patch a bit. It was a wonderful day but I just had to sit there in my wheelchair and couldn't move and it just made it all so bitter sweet. It was a lovely way to spend an afternoon, but just a reminder of everything i'm going to miss this summer. Cancer can take a lot from you but it can't take your love. So I think that's the main thing I should focus on, love. And focus on the things I CAN do. I can spend time with my family, even if it's just sitting around. And I have been. We've been to the beach, we've been for ice cream, we've been out for sushi (it was really romantic cause my tumour is pushing on my oesophagus so i often choke and then have to throw the food back up... well that happened) we've been home enjoying our garden, went to my mums for family dinner. Just... living.

Collecting Robin from Forest School... my beautiful boys! 

Sushi in the park (shortly after I puked in a cup)

It was really easy to LIVE with a terminal diagnosis when I could just function as normal.. or knew after treatment i'd be back to normal and could plan to live life to the fullest then. And thats what I did, I made the most of my time when I felt good. But living when you're actually in the process of dying, like your body is stopping working... is hard!

I listened to the first playing of the new radiohead album the other day. MUSIC! I've not been listening to enough music in hospice. And as soon as I do I kick myself because it's so good for the soul. So, when my cancer first came back, I had bought some tickets to see Arcade Fire's last gig of their Reflektor tour. We'd been to quite a few of their gigs in the UK and volunteered in Laaandaan for a night. Every single show was different and they hit it out the park every time. Being at an AF gig is my happy place. The night at the barrowlands!!! Anyway, So the last show was in Montreal, and we had tickets to the show and flights and everything (we were going to visit family over there) and then I had to cancel it all to start treatment again. So one of those amazing pals i mentioned earlier (Meg!) contacted her 'people' and managed to get me a get well soon card, thanking me for volunteering over the years and it came with a jumper and some badges and stuff! It totally put a smile on my face when I was at a bit of a low point.

That seems like a lifetime ago! Fast forward a year and a bit and i've been living with the cancer for ages and we've got quite used to each other... I'm functioning and living a normal life on pazopanib. So, much to my delight I see that arcade fire are coming to Europe and playing at a festival with Radiohead!! So i instantly bought two tickets and flights and got excited. Then.... my cancer went ape shit and spread. I think every time i buy tickets to an arcade fire gig in another country I GET CANCER somewhere... in my body. I've been to loads of gigs in the UK with no cancer dramas. So twice, some lucky bugger has got my tickets for free cause I've not been able to make it and given them away. Anyway... So i just turned 30, and Meg worked her magic again! She gave me a card that I was convinced Lisa had written saying it was from the Acrade Fire mob.. and they'd sent me one of my favourite tunes on vinyl (Sprawl II) a reflektor t shirt, a wee mini disc and a HUGE poster. What an absolute bunch of legends :) Especially Meg! 

In other news.. I had a scan on Monday to see if I could have some radiotherapy to take the pressure off my heart. I was very excited about this.... had visions of me being able to walk around on my own again.. meaning I was well enough to start the chemo I was about to start, starting that and living for the summer, giving me enough time to have an awesome summer with my boys and either win the lottery to pay for a 3D printed rib cage and having surgery OR find a clinical trial that would completely cure me :)  I went to get the results today. Not quite what i'd hoped (but quite what I'd expected) Everything has progressed very quickly, its spread, its getting ROWDY! (have I bought some arcade fire tickets recently?!)

So no radiotherapy as the tumour is pushing right on to my lung and when you've only got one wee lung thats not working at full capacity you don't want to blast it with radiation.  The scan report was insane though, it mentioned my stomach had collapsed like that was nothing,,, what does that even mean?!? I've got "satellite tumours" on my tumours. Fluid in my stomach, cancer near my pelvis, in my lung, in between my ribs, and my two main tumours are doing very well for themselves. So.... aye. This is where I am, and where I am is here. I feel OK at the moment. Davy seems to think its a bit of a shock and I'll be sad tomorrow but to be fair I did KNOW it must be growing. And i feel better knowing rather than being in limbo. It's easier to accept. This is how we dealt with that news.....

                                            

Also, i had a sneaking suspicion as i'd felt my breathing getting harder the last few days, moving around taking it out of me more :o/ 

We shall see... xx

Planning FUNerals

Why is it so hard. I'm thinking cause it's a funeral everyone expects and a FUNeral I want. I know I don't want everyone watching my old shell being lowered in a box in to the ground. I've never liked that about funerals. Like the body is of any kind of importance?! It really isn't. What I want is for my body to be put in the ground in the quickest composting Vessel possible and no one to witness it like it held any reverence. Then, when that's done, people can then be invited to say by if they wish by coming to share in the joy of creating the new life my old body will nurture (in my case a cherry tree). I want people to celebrate the amazing and blessed life I was lucky enough to have. Not mourn a future I never had a right to in the first place. Of course people will be sad. If it were younger members of my family I know I'd be mourning the loss of something that could still have had more to give! I just don't want that to be the focus. I want the focus to be a celebration of a life. 

We've bought a little plot in a woodland burial site not far from the back fields of our home. I feel good about this. We've also bought a native cherry tree (which, if i don't hurry up and die will end up going in to shock if they have to plant it after it's went in to flower) The planting of a native tree, some plants and then a good old knees up with some music stories and pictures afterwards to celebrate the life that was. I think this would be a good thing for Robin too, rather than everyone in black and him knowing mummy was in a box but not knowing why that was what we we're focusing on. I'm sure for him focusing on the memories and the future for him will make more sense. 

Still getting stronger, although it seems to have plateau'd which is fine.  I’m not entirely sure what the hell is going on. I just can’t understand why one day I was climbing Ben Lomond and the next I couldn’t walk the length of myself.. how can something like that not be gradual? Now I don't need my oxygen, have no pain pump and no catheter. So I've been able to escape for the day which has been amazing for my mental state! I've felt like i've been having some quality time with Robin which is what it's all about :) 

I miss home! I do love the hospice for what it is though. The staff are all amazing, they care about my entire family. I’m sure after i’m gone my family will do what they can to help raise money for this place. Its costs £2 million to run it for a year and its only half funded by the NHS, the rest of the money has to be raised. Its such an important service!! I can’t imagine how i’d be feeling right now if I had been in hospital for four weeks with visiting only allowed a couple of hours a day. Instead I can have my family around me all the time, my beautiful boy sleeping beside me. Safe in the knowledge i’m surrounded by people who specialise in end of life care for when that time comes. They gave us tickets VIP tickets to Disney on Ice, which had been donated to them. So we had a lovely night out as a family which felt nice, Robin really enjoyed it and it was great to see his wee face light up! I've been here for five weeks now. I'm wondering if it's some sort of record. I would love to go home. If i had no stairs in the house, i'd be home right now! Depending on the scan results I think we might try and get home if it looks like I might have weeks left. They said we could do a trial just to see if we can make it work, with the toilet being upstairs and everything. My only concern is I definitely want my end of life care to be here, after talking to them about the differences between dying at home and in here. But if i go home there's no guarantee i'll be able to get back in here when I need to, thats my main concern about leaving. Its like a big family here, we've become quite close to a lot of the staff and I think they're just as keen to be looking after us at the end as we are to have them looking after us. They are so sweet, every time we're leaving its like having four mums fussing over us.

May the 4th be with you - we celebrated with breakfast in bed and a Lego starwars Marathon! 

I also used my new found freedom to go to clinic and meet my oncologist. We spoke about radiotherapy. She said she'd be keen to try it if i had some pain that couldn't otherwise be controlled. I said I'd be keen to try it to take some of the pressure off my heart and perhaps let me be able to walk around and get a bit of normality again. She said there's no guarantee that would happen, however I have always responded well to RT before. Last time my tumour was visibly smaller in just three days! So she was saying would it be worth one or two weeks of feeling WORSE and then not being guaranteed to recover to e better level afterwards. I say yes. I'm just sitting around a lot anyway, so if i get RT i'll just be sitting around feeling more tired... but still able to cuddle and read and play games with robin which is all I do anyway. Then after the side effects wear off I'll either be back to where I was or hopefully in a better position where my heart isn't compromised and I can breathe easier and walk again. Go home!! Cook food! Bath Robin! A little bit of normality.  I think it's worth the risk as the side effects shouldn't be too bad and the potential benefit could be great... OR... just not much different. So, she said OK lets get  CT Scan and see what's what. We need to make sure it's even an option before we go any further. So thats where I am just now, just waiting on a scan. I had an X-ray and my lung was clear of fluid and the tumour in my lung wasn't visible so i guess it's kind of behaving. I think we could see a bit of the tumour behind my heart. And i can see with my own eyes and feel with my hands that the tumour at the bottom of my ribs is growing FAST! I'm not sure how much of a concern that is, it just depends where it's growing i guess. No point in speculating. I'll just need to hope things stay stable until the scan and take it from there. Trying not to get my hopes up about RT... which is hard, as I'd LOVE a good dose. She said it would only be five days too which is good. Five days of a higher dose. It's always been five or six weeks of a lower dose before. Not so secretly, I hope that I can get RT, and it makes me well enough to get some more chemo. That would be the absolute best case scenario. Maybe get to hang around for the summer. It's unlikely though, I don't even think it's that likely I'll get RT.

I've been up and down over the last few weeks. I get really low initially. I spend almost three weeks in bed, unable to move around much. Then I was able to get out of bed and sit on the chair. Then things just kept getting better and better. Once I was able to get outside it really helped with my mood. I had been pretty low being stuck in here, feeling like I was just waiting to die and not really having much quality time. Robin and Davy were in the other bed and I was stuck in mine with my driver and catheter tubes everywhere. I couldn't even read robin his story because I couldn't breathe well enough. Now we share my bed, i read to him every night, usually after watching a movie and having a hot chocolate together. He's getting pretty spoiled in here and thats ok. It won't last forever and we're having a nice time together. I love watching him fall asleep and waiting for him to wake up in the morning. He's a ball of sunshine ALL the time. I was worried, when i was stuck in here that he was seeing me cry too much.. You know I came here with an acceptance it was time to go, i'd said my goodbyes like the doctors suggested and I was leaving this earth in deep gratitude. Then it just dragged out but I couldn't keep myself busy as usual and found it hard to be so idle. I just had way too much time to think about what I was leaving behind. It's better now though, i've felt happier since being able to spend better time with Robin and get out. And my sister reassured me, kids remember what people talk about.. and no one is going to say "Remember that time yer maw cried fur three days?!" haha.

Anyway, today I feel OK. So... that's good! Just hang in there wee heart until we get a scan! And if yer upfirit tumours, just stop growing for a bit, take it easy!

xx

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

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.

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!

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

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! 

The end is nigh.

So.. I turned 30 last week. This in itself is an amazing feat. I had terminal cancer at 24! Smashed it!! Then at 28 it came back, and since then i've been living WITH it... we're not good friends but we've been hashing it out for a long time and I feel lucky to have come this far. I think by aggressive synovial sarcoma standards, having an active tumour for almost two years would definitely be considered lucky. However, the inevitable has finally happened.

On my 30th birthday, I woke up and got dressed and went to hospital to get my scan results. A scan I had brough forward cause i thought I felt my tumour growing. Turns out I was right. I was worried i'd be right and would have to get trabectedin. How naive was i? Whats actually happening is... it IS growing, I DO need trabectedin.... but also, there's a new tumour. Surprisingly its grown to the same size and my other one, in under six weeks (in other words its grown fast as fuck) and unfortunately, its sitting directly behind my heart. Apparently that explains my intense fatigue and crushing feeling in my chest when I bend over. I also have a cluster of something in my bowel that has doubled in size in 6 weeks.

OK, so trabectedin then. When i applied for pazopanib there was no doubt I'd get it... but recently another dude at my hospital was refused his funding for trabectedin. I'm wondering if its because its the end of the financial year? They've overspend and need to cut back? I've no idea. Anyway, they're not too hopeful about me being granted the funding.

SO..... Its all over the place, and I don't think i'll be getting treatment. Its takes three weeks for a decision and then if they say no you can appeal. I said to my onc "three weeks then appeal? My tumour has grown this big in less than six weeks, i probably won't have time to appeal!" and she just smiled and nodded :/

So here I am.

What are you supposed to do when you potentially have weeks to live? I've been making a blanket, photo albums, thank you cards, letters... Also I watched a movie called P.S I love you... I was thinking of copying that but switching it up so it wasn't quite as exciting and just leaving notes saying things like "Did you put the fucking lid back on the jam??" "Why have you not done the dishes?" hehehe.

I DON'T KNOW WHAT I'M SUPPOSED TO DO!! I don't want to do anything. Any advice would be much appreciated.

xx

It's the final week of my twenties! I'm feeling VERY grateful to have made it to 30 (as long as I don't fall in front of a bus or something in the next few days!) Something I never thought I would do after my last two diagnosis'. I think as far as persistent synovial sarcomas go I'm actually really lucky. I was diagnosed over 5 years ago, i've had active (aggressive) cancer for 1 year and 8 months... which is good going! The six months thing was batted about a bit when I found out I wasn't getting surgery so anything more than that is a blessing. Well all of life is a blessing yadda yadda... Anyway, aye... I'm quite lucky!

Its a weird month. I'm quite sure my tumour is growing, I let my oncologist know and he scheduled me in for a Scan when I got back from holiday. So i had that Scan today and get the results next week (on my birthday). He felt it, and wasn't sure, but he must spend a lot of time looking at peoples lumps so I doubt he'd remember mine particularly well, it's not a particularly special or memorable lump! Anyway, time will tell. And we'll see what this little cluster of 4mm mystery blobs are up to. I've been getting quite bad heartburn and had a bit of trouble swallowing, i'm wondering if it's something to do with those wee blobs! Could also be acid reflux due to taking 9 pills for breakfast every morning and not drinking enough water :o/ No point in stressing about it... but I will anyway. Cause that's how I roll.

We got away on our holiday which was wonderful. Spent most of the time in Switzerland (which wasn't even a planned stop when we left but it was just too beautiful and then we didn't leave until we HAD to). We spent three days tobogganing around the swiss alps. These runs were amazing, some as long as 15km down mountains, maintained purely for sledging! Here's wee Robin on the slopes (thats the eiger in the background.. which we sledged down the next day)

 

So I've decided to do something for Sarcoma UK again this year, I want to do it ASAP as i don't know if i'll be starting chemo again soon or not. I was brainstorming with my chum and she's very into climbing and such like and we agreed on doing the three peaks. The highest mountains in Scotland, England and Wales. (the three peaks challenge is all three in 24 hours but i most certainly will not be doing THAT!) So this weekend it was beautifully sunny, my husband and I went out to try and climb the nearest munro, Ben Lomond. It was... disappointing and a reality check. I used to climb hill like that with no effort. I struggled a lot more than I thought I would an hard to turn back 20 minutes from the summit because we were losing light :( Bummer! I've been on treatment a year and a half now, my energy levels are LOW. I'll keep at it though. And I WILL do the three peaks.

x

Now

One of my good friends is having a baby!! Davy was saying to them about how much time has passed since we told them we were having a baby and how it's gone so fast! 

It got me thinking about how things changed when we had Robin/I got sick. In the short years we had together before then, everything was about NOW, with occasional sweet dreams of the future. Once you get a terminal diagnosis the best thing you can do is be in the NOW (unless that now royally sucks, i've been there, but most of the time my now is extremely pleasant)... but what actually happened to me, was, life stopped being about now and started being about the future. Not dreaming about the future like we used to. But trying to plan for the future, which was short and bleak. It became about making sure everything was in place for what our now CERTAIN future held. A future we were not moulding together anymore... but trying to mould ourselves to deal with. It started being about the scan in two months time, then three months time, then six... because it was after these scans we'd have the freedom to make our own little plans for a short while. Almost wishing away the little time I'd been given to find out how I was doing. Instead of being in the NOW.. which for me has mostly been great. My health has rarely been dismal, my family and work are wonderful. Most of my nows are perfect. And the main cause of my (many, many, all too common) dark times is due to my concern of the future. 

At the moment, there is no future, there is only now. 

So here I am.

Smiling. 

Until the next time I forget this and worry about the future.. which will probably be soon.. infact.. now that i mention it..... :op 

Scan results.

So I went for my scan results... convinced I had a brain tumour, heart mets, lung mets, breast cancer and something wrong with my stomach! (HA!)

Luckily... i was wrong. I have no heart tumour, my little left lung (best lung ever) is clear, brain.. well that wasn't scanned but probably clear and just suffering from so much chemo, stress.... and if i'm honest lack of exercise, and to be fair.. i've never been that bright! However, there's something in my stomach.. well my onc said there were 4mm lesions in my bowel somewhere (I can't remember where). On the scan report the radiologist suspected metastasis, my oncologist however said he wasn't confident that was what it would be. It wouldn't be unknown, but very unusual for it to spread there. He said also it was near lymph nodes and mentioned something about haemorrhaging due to my current treatment. I asked him if he was playing it down to stop me worrying until it was big enough to investigate further which i think, fairly, he took offence to and told me his job is to be truthful with patients. So he's not too worried. I am. Just have to wait and see if it grows.

Also, I have something in my breast. It's not the first time this has been mentioned, they noted it in PET scans, first time it's been mentioned in a CT though. I have a history of "breast mice" so i'm hoping its just another one of them. However, i'd went to the hospital planning to mention the discomfort i'd been feeling in my breast so, both of these together has prompted me to go for an examination. What are the chances i'd be THAT unlucky? Probably not far off the chances of having a synovial sarcoma (accounts for what, 1%of cancers?) in my pleural space (not unknown but one of the m ore uncommon places for this rare subtype of a rare cancer)... But, aye. Unlikely.

So, all in all... I saw it as good news. As far as I'm concerned lung mets are the worst case scenario. And I have none. In fact I have no confirmed mets. So I'm free to go bumming around europe in my van... to the forests, mountains, towns and cities of holland, germany, switzerland, italy and france. :)

My heart and mind are a little heavy, but i think i'll be able to push it back and have an amazing time. I think if they weren't a little heavy i'd be... in complete denial or an absolute nutter!

Next scans April.

WAIT!! SO, I don't ALWAYS look at the sarcoma forums etc, but one day I did... and someone asked about how they could determine if pleural thickening could be malignant or not. I said what about a PET (as I have pleural thickening that lights up a PET and is therefore considered to be cancer). This person then told me about a paper, which tells of numerous patients showing PLEURAL THICKENING WHICH LIGHTS UP ON PET SCANS FOR OVER TEN YEARS AFTER A TALC PLEURODESIS (causing people with pleural thickening to be wrongly suspected of having malignancies after talc pleurodesis)  which her husband had had, and therefore it couldn't be determined that way.             This is a massive deal to me, because i currently have an operable tumour... which will not be operated on because i have PLEURAL THICKENING LIGHTING UP ON A PET SCAN AND ASSUMED TO BE MALIGNANT which cannot be operated on. And i had  TALC PLEURODESISA FEW YEARS AGO! So basically.. that pleural thickening could be nothing and my tumour could be removed.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2729238/

Moral of the story... keep up to date with the folks on forums! They know their stuff!

I mentioned it to my onc in an email about something else and he said "that's very interesting... Have a good holiday!" I'm  not sure if that was sarcastic or not, ha! He must have LOADS of patients be like "i saw this/that on the internet!!" but i really think it could be relevant to my case.

Lots to think about.. for me. But for now, i've got the all clear to go on holiday. Life a day at a time. Looking forward to seeing bit of the world with my beautiful little family :) x

Scanxiety.

It's that time again. I got my appointments through. Had an MRI today and i'm having a CT on Thursday. Hoping to get my results a week on Thursday so we can take off just after. Is it just me or do you feel aches/pains/differences more... so much more... around scan time? I should write it down, the stuff I freak out about as i'm sure it's always the same. "I have this weird feeling in my chest, I don't usually have that!" always seems to be my chat around scan time. Hopefully, once again, it's just in my mind.

I often feel like i'm dealing with things alright. Then when i'm waiting on results I start thinking about how "this can't be the one where it's spread, i've still got loads to do!" At some point it IS going to be the one where it's spread, or the dormant bits are growing again, and i'm not going to have a lot of time. I really need to get prepared. It's hard to feel like preparing for death is a high priority because I feel fine (to an extent). But, like what happens to a lot of people, all of a sudden things will change. No matter how unprepared I am and what I still "have" to do. I think i'll try and spend one hour a day doing the things I want to do before it's too late. Finish making the big blanket, make some more family albums, write the letters I need to write. The main thing I want to do though is enjoy my time and spend it with Robin, but the other things are important too and I need to remember that. Those things will be all that are left for him as the memories won't last, he's too little. I was thinking today about how my nana died when I was around 12 and I can hardly remember her. I remember funny little things like how she clicked her nails, but I can't remember HER, or anything we did, or how she spoke. Robin is only five. So its important to take time out to try and leave something for him. My good friend who lost his mum when he was little told me the thing that is dearest to him is her diary, because he can't remember her and It's a way to get to know her. He loves the bits where she mentions him. I don't keep a diary, I should!

Here's something that heart breakingly funny... So I read a lot about whether or not you should speak to a five year old about having a terminal illness and the general consensus is yes. So i did. I told Robin that just now we're keeping my cancer at bay but its a smart disease and one day it will figure out how to grow again and there won't be any other medicine I can try. He asked if I would die and I said yes. I told him I felt sad I couldn't be there for him growing up but that he'd have daddy who is super cool and loving. Robin tells me "That's ok mummy, when you die Daddy will marry someone else and I'll get a new mum."Haha... thanks wee man. To be fair I'm glad he wasn't upset, but I also felt a bit put out! (not seriously, he's five!). He has a rugrats DVD about a kid who doesn't have a mum and its all about his dad meeting a nice new woman so he can have a mum so i'm guessing that's where he got it from! To be fair though, I hope Davy does meet someone that will grow to love Robin, so that he has a woman in his life growing up. Someone who cares about him and loves him like a mother. Some of my friends are step mums and their step sons are lucky to have them. I can only hope Robin is that lucky!

Roll on next thursday so I know the score and I can hopefully get excited about our trip. The dog has his doggy passport, the van is almost complete. We're good to go... just need a route... or do we?

M x

Ok, enough break, can I have a scan please.

I'd love to say I enjoyed my christmas "break"... well I did I suppose. We got a house up north with our families and spent some time with our friends and it was all good. Most importantly Robin had probably the best christmas ever because his cousins were there to share the level with him. So for that i'm very pleased. I think my family enjoyed it too. For me.. robins birthday/christmas/new year (like I said in the last post) are a weird time for me. I find it hard to feel happy. Its when all this shit started and its also a time that really makes me think "is this the last birthday/christmas/new year we'll spend together?" So i'm glad it's over and its back to just normal days that we're not expected to be overjoyed about. However... as christmas and birthdays go, they were good ones for all involved I reckon. I'm just having a hard time due to the aforementioned crap and the fact i'm in limbo again... the worst place to be with cancer! I don't know how my radiotherapy worked, i don't know what (if any) options I have next, I don't know where and how big my cancer is... and i'm losing the plot! I've to get scans... well now I think but i've had no appointment through. And all of the above is making me CRAZY!!! I've been really down, in a dark place twice in my life.. i can't remember when the first time was i just remember thinking "fucking hell, i didn't realise you could get this low".. and the second time is now. Like crying in the car, shower (anywhere no one see's) and acting-like-a-fucking-psycho-and-trying-to-blame-others-cause-i'm-fine" kind of low. (only in front of my poor husband davy though). I am not dealing with. this. shit! I'm lost and numb. The worst part is... I'm AWARE of what an ass i'm being. I know this is a massive waste of time and energy and since life is so fleeting i should be making the most of the little time i have, being grateful, rejoicing, immersing myself in LIFE. But i'm not. I'm staying in all day, keeping my mind otherwise occupied with documentaries and useless crap. And i know what i'm doing is wrong and pointless.. but still, I'm not fixing it. Which just makes me feel like an ever bigger ass.

Five years of this bullshit makes it all wear thin. I'm sure i'll pick myself up soon.. I always do. And despite the above failings... I still count me blessings every day, feel like i'd rather live 29 years in this life than 89 in any other, relish every moment of my bedtime stories with Robin, look at the sky and feel absolutely blessed to be on earth... and all that jazz! I just feel a bit sad too at the moment.

Here's hoping my appointments come in soon and being good news. I'm hoping to drive to italy in my van through holland, germany, switzerland and france if i get good results. How amazing would that be for the soul? A few weeks together with no tv, no internet seeing europe in winter? If all goes well with the scans I'll leave in three weeks so we can celebrate our five year anniversary on the road :)

Inshallah - as they say in arabic.

P.S Robin can go his bike like a BOSS! coolest dude ever.