It's a broccoli.

Richard has been in hospital for a long 12 weeks now, what seems like the longest time ever too. My mum brought him a toy broccoli, in hoping it would cheer him up. It;s done just the job and kept us amused for the rest of the day <3  He also had another Blood Transfusion today as well, hoping he will feel a bit more perkier tomorrow morning. 

          

Intensive care // septic shock

This week has probably been the most hardest week of my life. It's effected me so badly, and yet for the first time I feel as though I actually can not cope with this much longer.
I never thought that he would ever end up in this situation. It was scary, not as scary as web he thought he was duin a few weeks ago and then proposed to me ( I'll add update on that soon) but two very different scary moments I can't compare and found them both horrible. He's been in hospital for 10 weeks next week, which has been the longest trip he's ever had in the past 4 years. It egging harder and harder as time time goes on and the longer he is on there. I don't remember any time we've had together. I don't feel close to him or feel we're in a relationship. I feel a though we have become very close lovely friends rather than that relationship. Just because he's in hospital and been cares for by the nurses more than I see him- it's making things hard. It shouldn't st all but with him being in intensive care and having to have personal care has really bothered me too. I feel as thought the whole world has seen him naked and nothing underneath him is all mine anymore. It sounds so utterly stupid. I shouldn't at all feel this way but i suppose it just because we've had no time together for so long I feel pushed away and that I'm not his love anymore? I don't understand how I've become to feel this way. At the end of the day the nurses are doing there job and looking after him so why should it bother me? I just don't know whyz

it's my Birthday tomorrow, spending it with out Richard.... Again.

It's my Birthday tomorrow, and yet once again I am spending it a lone with out him :( this is the 3rd birthday of the 4 years we have been together that he has missed. The very first birthday was very hazy, Poor Richard got bad news about his Dad the week before. Where he was diagnosed with terminal lung cancer, i remember the text he sent me like it was yesterday. Absolutely heartbreaking, wishing it was all wrong and that they had a made a mistake. I didn't spend an awful lot of time with him, which makes me sad. But he taught me to believe in my self and to go out there and do it. Have Faith and Do it. He was very wise and in a way gave me some confident to do stuff i wouldn't have done. I remember going to the game fair one year, where we went to do some shooting. I was like, no i can't do that and would never do so, but he was like no have a go do it, and it was just so good being pushed to do things and come out of this bubble that i've always been trapped behind. I can see that Richard really misses him, and so do I to be honest. He became a bit of a father role i never had and i do miss his funny comments to this very day.

So,  Last year Richard was in hospital having his stem Cell transplant, and this year is is currently fighting the graft versus host diseases, He's been back in hospital for 5 weeks now. This is becoming his longest stay with in the 4 years of battling his lymphoma. I'm so sad I am missing another birthday with out him again, I just hope that he recovers and we've got plenty of years to make up for everything that we keep missing out on.

Things are so hard for him, he's really struggling and tonight he told me, that if it wasn't for me he wouldn't be  would have given up by now, for some one like him who is so up beat and gets on with it, this is such a sad thing to hear. he;s just getting to the stage where he is so fed up, so grumpy, angry and tired that I can't a;ways cheer him up all the time. :( 

Tiredness and strain. Cancer sucks.

I'm still really doomed that things wont  be back to normal anytime soon. I feel quite empty and spaced out. I can't help wondering if things will ever get better. I can't help to think what if we're still like this in 4 years time and things are still the same. What kind of quality of life is that giving me/us. I don't mean to sound selfish but when your poorly it's different because you simple can't do anything, where as me I can. The thing that worries me is that I'm going to be so attached to Richard's care life that I don't have my own life any more. I feel as though if he is still in the same boat in another 4 years, I wont be doing anything with my life. Would I of moved out? I'll be 31, and I'm so worried that I'm constantly missing out of things that i will regret not doing the things I've wanted too. I'm so worried about the future. I don't even have a good circle of close friends any more. In fact sometimes that's easier because they don't understand, and try to tell me it will be okay, but the truth is, No one knows he will be okay. And trying to make it all okay is the most annoying thing any one can do. People just have no idea how it's change my life and everything has changed. The longer it goes on the longer I just feel like we're just friends and I am a carer. There is hardly any bond between us any more. This cancer is draining our relationship so bad now, and again I went to visit Richard yesterday. He was too tired to talk to me but he happily sat up and chatted to nurses asking them questions. Every time I tried to encourage him to talk to me he just pulled faces so in the end I was that fed up and I went home. I'm not going to take my time out to visit him, where I have to drive an hour to get to him, queue in the massive long wait to queue in to the car park for him to annoy me like that. It's just not fair. I try not to let it bother me I really do, but it does. I get compliments off other people at how amazing I am for what I do and despite everything going on I am still smiling and yeah those people are right but with Richard it's just a totally black out world. I have my own problems going on, along side of him and he is never there to support me. I feel so lonely and am desperate to be in a loving relationship where I get all the support I should. He always seems to forget I have all the other drama going on and expects me to fully concentrate on him, but i really can't. He has become one the most selfish people I know. Even when my grandad had his accident I needed him at the other end of the line- what did he do, he went for dinner as his female friends house... It's just he never stops to think, yet always does what he wants yet when things go bad for him I have to ditch what I am doing. Its never fair and always one sided and it is making  me really miserable. I want to  be able to go out and have fun with out him digging at me or making me feel bad. I don't do anything to upset him or piss him off and yet he's moaned at me for dressing up for my sisters birthday. So typical. It's like because he emails  the nurses,  it almost makes him paranoid of what  I am  doing and picks a fight! It's so petty. I am so fed up of his selfishness. He never used to be this bad at all. He used do anything for me but now he's so grumpy and rude all the time I'm just so fed up and so sad all the while he never gives me a reason to be happy any more.

Happy Memories // RICHARD

just adding some photos of my wonderful Richard, i just noticed this blog has a lot of writing these days and not so many photos. I think i will have to change that :) 

DONOR LYMPHOCYTE INFUSION // RICHARD

It's been some time since i have written on here again, I don't seem to know where the time goes. Saying that i am just so busy, i very rarely get to sit down and get on here.

Life has been pretty hard, i miss my grandpa like crazy, and I've been running around like a yo yo machine, I now work full time, at last, and run the farm, look after Grandma, still don't go round as much as i used to but i find it so hard with out Grandpa there. I try to spend as much time with Richard too, but as like tonight, i am missing out on snuggle times, as unfortunately was kept in at the hospital and is staying in over the weekend.

He had two lots of radiotherapy this week, yesterday (Thursday) and Today. And then having his DLI tomorrow, which is an infusion of the Cells from him Donor. Really hope this works, if this doesn't there is nothing else they can do for me. It gets scarier every time and every day. I wish it would go away. Richard has been poorly since the very beginning  i just want us to have a normal relationship now, that we have never been able to have. It's so heart breaking, we have this amazing future we want to have toegther, and i now i feel likw it's never going to happen, and that we will never get to do what we want. Life is so unfair, why does it always nig at the Nice people. Please work, pleaseee.


xxx

A New Beginning? ....

First of all, I am really sorry for my lack of writing recently. Life has become so hectic  now that i have two jobs and a farm to run. Richard has been doing okay, having a lot of problems with his tummy, but other wise he is doing really well.

We got the impression we were going to get his results ect before Christmas, but after seeing the top specialist on Wednesday ( November 29th), we brought his appointment early by a week as he wanted to discuss about the results, and about his tummy. It's been giving him such a hard time, he wanted it sorting out. So really, we just went over to see about that really. We came home on the high, they have reduced some more tablets but they have decided to leave the results now until the New Year. They don't want to radioactive him any more, so for now, he's been told he can start going out again and can go to the Christmas party//events we have coming up. This is just perfect, they are really pleased with him and basically said his Transplant is now 100% donor, so there is no more of Richard's stem cells left. They are all now German. He's done lucky, as his hair colour is still the same and bits so am really happy for that. The only odd thing is, is sometimes, i don't feel like its my Richard, sounds so silly i know but sometimes i feel like im holding a strangers hand? i don't know it that is possible or if i'm imaging it. But Either way, I do not like it....

We off to Harlaxton Manor on Thursday for Christmas singing, food and wine. I can not wait, i'm finally really looking forward to spending some time with me man :) and most of all having some fun again.


Amy

xxx

it's so hard.

I went out on Saturday night for my sisters birthday and i forgot just how much i miss having a normal life, having a social life, going out, being normal again for one night, and most of all forgetting that everything is happening... But at the same time made me realize at why some relationships just don't last though these phases and hard times. It's an awful thing to say, but again, it's something people can not judge or comment on unless they have been through it them selves. You can never say, well if i was in that situation... bla bla, no you really can't because unless you are actually going though it, there is not a slight chance  in the world where any one can even try to understand, the strain, pressure and pain. nothing.

Part of me just feels so insane, i want to be with Richard i do, but i feel so helpless and so miserable. Were never happy anymore, we always bicker and always fall out. It's just getting to the stage were we fall out of such silly things. For example, om Saturday night i wore some leather look leggings as i was dressed up as Sandy from Greece. Richard has this thing and wanted to see me in them first before i went out, its just a pair of leggings but he still had a big moody about it and then was funny with me all night and all Sunday. All the constant silly things is just fading things away, there's no spark or anything  to be excited about any more.  

Poorly Richard

The weather is changing, and winter is most defiantly on its way. All the illness are popping out and naughty Richard sat in bed watching tv with his brother. Alan had a sore throat and wasn't very well- Richard caught it and now I've got it. Of course im okay with it but with Richard he can't risk catching so now he's been told to go to hospital today. Means I can't go see him till I am better :( this is rubbish- naughty boy should have told me he had the sniffles then I wouldn't have caught it and I wouldn't have to stay away from him :(!
Hope he feels better soon.

Hickman line // cancer

The Hickman line has been removed. What should have been a simple removal ended up taking a very long time. It tutned out that the surgeon who put the line in had put it in quite deep, and because the skin heals around the tube, they have to cut the skin to take it out. Normally and most people only need one stitch, but unlucky for richard he ended up with 3, and has been in a fair bit of pain for the past few days.

On a positive note, it's great to have it out, no more things poking me or getting in the way. Here are a few fun photos i thought id share.

         

Lymphoma // Andi Bull

It's been the most random day today. I have a friend called Chris  from the Northampton chicken forum lend me a mink trap last night, he popped round the farm today to have a look at the mysterious holes and poo's. Lets hope i've caught something in the morning, just hope i'm prepared in-case it is a horrible looking mink.

I mentioned my Boyfriend couldn't help me because he's got cancer and that he's not allowed out door, straight away he came out with 'stem cell transplant' for the first time, i felt like i wasn't on another planet and someone new what i was saying and i didn't need to say anymore. Some one knew just what i was on about it was great. Didn't think any more of it, then sent me a link to look at....


http://www.andibull.org.uk/

His Brother lost his battle to Hodgkin s Lymphoma on 20th November 2010. He fought long and hard for the four years after being diagnosed in Septemeber 2006. I can't say how sad i am, i don't even know the chap and my eyes have been set in to tears. It's so sad to hear that he didn't make it. I know just what his family have been though, i feel the pain, the anger, the hope, the wish for him to get the better. No one will ever understand unless they have been through it. They say it's supposed to be the most easiest Cancer to cure, and in some case, some people who Richard has met, have been lucky. They have had one set of treatment and it all went, unfortunately for other people they go though it all and don't even get better. Life is so cruel.

Results day tomorrow // Richard

It's Richards Results tomorrow and i should be spending the night with him, instead im stuck at home miserable as anything trying to come to terms with yesterdays, as i would call it a horror movie scene.

As always i popped down the farm to feed the animals, it was only about 9am if not a bit later than that, that i discovered poor rupert dead, i opened the pen to go in and look at him. My first intention was, that she had died in her sleep or vice versa and the rats//crows had started to eat at her... realizing how quiet it was and then realized i couldn't see any ducks in sight. normally my 3 months old camp-bells would have come over quacking away, very talkative, no where to be see. Find another dead duck at the far end pretty much eaten, i look to the right and see poor freddie stuck in between the chicken wire fencing with no head, walking around i then found the two campbell drakes behind the hutch. I was deverated, it was like i was in horrow movie. I bursted in to tears dropped the freshly cooked vegetable (as the ducks love them) and food and ran out. I phoned my dad in tears, Im still so upset about it tonight. Its so heart breaking because, what ever it was wiped all 7 ducks, freddie and the other one were old, but were okay and poor rupert loved to sit in the washing up bowl instead of the big bowl? They were my world, What took me by shock was that the two chickens were fine, not a stratch on them, event he teo geese were okay. One looked like she had put up a fight as she has a limp and funny eye but other than that i couldn't believe it.

the only thing we can conclude was that it could of been a mink- which is really scary. 

Day 100 // transplant

Day 27. A trip to the hospital.

A week today Richard was allowed home and today we have come back in- not as bad as it sounds though. We are only here for a phosphate infusion.
Just means we will be here all day- its 9.30 am and apparently can take up to 12 hours- eeeek what a long day sitting in hard Uncomfy chair. Think I'll have to go for a wonder or something. Maybe I could pop over to the Leicester tigers ground and spend my Christmas vouchers seeing at its only over the road. Would pop in to town and do some shopping, if only I worked full time and had some pennies. Never mind.

So, Richard had his check up yesterday. All went really well, said his white cell counts have jumped a bit but they didn't seem concerned to what Richard said so I am guessing that is okay. He was told he didn't need to go back now until next Monday, when you get to 30 days you only need to go in once a week which is great. So Richard was all happy and thought a whole week of not going in. To ect a phone call later on to say he's got to go back in for a infusion because his phosphates are too low. Oh bugger. I don't know what these are but Richard did some research and basically if you have no phosphates you can die. Sounds scary.

Richard is all connected to his drug now, they said they will keep it going until 5pm and for from there. That's not too bad, I'll have to have a sleep or something. :)

day 25. time just keeps flying by.

can't believe its been 10 days since i last wrote about Richard's last updates. It's been such a mad manic week, i can't believe how quickly the days have flown by...


I didn't get to see Richard over last weekend. I went to spend some time with my little sister over in Northampton, along with my friend Emma. Just needed something to do and a bit of time out space. People don't realize how tiring it is, having to be in my place. Had a relaxing time, and then my sister had a jewellery party on the Sunday- was nice to kind of feel normal for a bit again. But, not one minute goes by that i don't think about Richard or his situation.

Anyway, Richard mum and brother went to visit him on Sunday as it was Janet's birthday ( rich's mum), was hoping to get over too but i was late home and i felt so tired and sick, the minute i got home i went straight to bed. Unfortunately i didn't even get to see him on Monday either as i had to take my dad to his PET Scan at Glenfield, which went all okay. Were just awaiting for the results now, i hope for gods sake its all okay. I really cant cope with this again, not yet anyway.

Good news though, Richard texted me on Monday saying he would be coming home that week, possibly Tuesday or Wednesday depending on how he is doing and how his results are. He started getting pains with his  stomach acid, because they took him off his acid tablets. they did this to try and get his stomach to near as normal as possible. something to do with the medicine kills of his friendly bacteria that he needs, if this happens it makes things worse in the long run??? yeah i don't get any of it tbh. Poor Richard though, his acid is giving him so much grief he was struggling to eat.

On Tuesday  morning. he found out that his neutrophills were 5.4, anything above 5 means fab. This means his body should be makings everything work again properly :) The doctors were then going to put him on steroids and take him off is antibiotics... he's was finally starting to show some improvements again, it was such an up lifting moment :) he was happy, you could tell it, in his voice.

Richard is also at his Graft V Host as well, this is all good. However they can only let it happen so much. If it goes over board then its not good.

During all this time, we have both also been looking for engagement rings, its been sad because we cant go shopping together to choose one, means everything will have to be done different, but that's okay. I can cope with that, it might not be my ideal dream that we all have when we grow up, but i guess this makes it extra special in away.

Found out on Tuesday morning that Richard was allowed to go home  very unexpected, i couldn't believe it. Meant in me having to do a last major car hoover so i could actually bring him home for once and for the first time. Couldn't have been more happier. So anyway, i went over to see him at normal time, helped him pack the last bits and took what seemed like the longest trip back and fourth to the car with his stuff. Anyone would think he'd just got back from holiday, seeing it all loaded up in my car. I did it though and after a long day, he finally got his tablets at 6.30 and off home we went. :)

Wednesday i was finally going to see richard at home and finally get snuggles in bed again, even though i was pretty scared like. Today was Alan's Birthday (richy's little brother) and was a litte visit from the queen in satmford, Which my gran and i went to see. Oh, she was so beautiful, had a police man standing in front of me, more to the left so was able to get a good view of the queen heading my direction. Took a guess at taking a photo and took it a tiny bit too early, but, it was take a good photo and risk not seeing her looking, or just  take a quick piccy, and make sure i see her. Which now i am glad i did, because her face was so lit up with her smile, and even though it would had made the best photo, seeing her was more important. After all, not like you get to see her everyday hey. Shen was gone before i knew it, so quickly i had to question my self to whether i had actually seen her or not. Her big smiley face is still as clear in my memory.

some how i can't save the  zoom on the photo, but when you see it, you can see her very well :) 

Spent the night at Richard's on Wednesday night, was so so nice to have him back and snuggles in bed again. I can't believe he is home, i can't believe how quickly the last 4 weeks have gone. Seemed like yesterday when it all started happening, but then in some ways, it doesn't.

Richards been on the internet and found a lovely engagement ring that we both like the design on, we've been chatting about it and decided on either sapphire or Emerald.  i love both colours so that turns out really well. Richard found a lovely jewelleries on the internet and rang them about the ring. He had an appointment with the designer on the Thursday to discuss and design the ring to fit his budget, style and ect.  Turned out that emerald isn't a very good stone, now i should have remembered this from working in a jewellery shop for a year. emerald is a really brittle stone, and breaks easily. Not suitable for my way of life, which means i would constantly have to keep taking it off, well that's not worth it for an engagement ring that should be worn all the time. 

Richard had a check up on friday, all went okay, got to go back on Monday for the next check up.Apparently it will be a long while yet before we even know if this transplant has worked or not... we just have to hope that the 3 months scan doesn't show any worse than the last scan or it's going to be very upsetting, it will mean it's not worked. It's okay, if they still see a few bits showing up as there is still plenty if time for the new cells to fight it off. So, it will be more nearer the 6 months to when we will know more. More waiting around an more gambling. He's also got to be very sensible, and not mix with too many people and do as he's told and he should be okay. He's got to go back twice a week for the time being..... 

...... 

night night. time for bed. 

sad news.

Everything was going so well, Richard has been doing so well, we've not had any bad times that I've not had anything to write about. For once it seemed like life has been normal, He even got the all clear. Cancer free, the american treatment had worked. Every one was happy, Richard was happy, I was happy. It was a big weight of the shoulders.

Sadly yesterday we found out that Richards Cancer has grown back, and it has grown quite rapidly since his last treatment dose. His last treatment day was 21st March, and he had his scan which showed it was all gone and cleared. His Transplant is due on the 23rd may. He goes in to hospital on the 15th may, so the sad bit is he will miss my b'day. My birthday is on the 16th, and i cant even really go and see him either, as he will be having his hipmen line put in and then he will start his chemo treatment. He will have this everyday up until his transplant. It's brilliant the the Bone Marrow Transplant is going ahead at last, but so scary because its come rounf so quickly and now richy and i cant really do much and i feel like we've missed out on the free fun time we should have been having, and we haven't/ Now its too late to do that, as he cant risk getting anything before he goes in.

I am so devastated, I'm so scared, I've been trying to block it out for so long. It seemed so easy to just forget about it and carry on. But now it has the all go ahead, everything is in place, i feel like I'm on a break down. I feel  so lost, the thought of all of this is so frightening. And the worse bit is that people just dont have any idea, they try to help but sometime i wish they didn't open their mouth. They cant tell me its going to be okay, they don't know. 

cancer.

I hate cancer so much. It doesn't just change the little things in life, it changes everything and I mean everything. Even you friends forget about you, your life changes over night, nothing is the same, normality goes out of the window. People think it is so easy to just say, "its going to be okay, he will be okay" but the truth is, no one can say that. No one sees what goes on and happens every day, no one sees anything. People think its so easy to go through all of this, and believe me its not.

its tiring, its so stressful, we argue all the time, its so tense, we get cranky, we snap, we fall out, we make, up, its a constant yo yo. Life doesn't get to be fun any more. Cancer takes over everything, your mind, your thought, your daily routine. People think its so easy to say "don't let cancer do that to you", but you have no control and even when you want to, it's impossible and it doesn't work.

Sometimes I just want to get up and leave, get back to my normal life, have a social life again, be a young adult, do what i'm missing out on, but at the same time i can't because Richard needs me. Its so easy for people to turn around and call em selfish, but unless your in my boat, you can't say a thing. No one has the slightest idea. We don't even get to have a normal relationship, its so complicated than people realise, nothing can be a normal relationship. its so hard, all the hospital trips, appointments, sudden illnesses, its just so unfair.

poorly richard

So as I thought everything was going really well suddenly went so the opposite.

Poor Richard wasn't very well on Monday, just thought it was something little. Had a early night sleep, which didn't go very well as he was up most of the night going to the toilet and having very bad cramp. we woke up really early on tuesday morning, i was wide a wake at 7am, which is very un usal for me. I am not an early bird, but i could see poor Richard hasn't slept brilliant and that he was suffering with cramp and had a poorly tummy, not only that but his breathing started to sound funny. I said he should phone the hospital but he wanted to see how felt and if he felt okay later on.

we watched an episode of 24 and he seemed ok for that, then we went on to the next one, started watching that and he was just really distracted. he kept falling alseep but waking up suddenly and not able to breathe, saying that his lung felt as though it was closing up... By now his breathing was getting worse and it wasn't looking good. he had a few moments where he picked up but then he went really down hill. His temperature was up and down, like a yo yo.

In the end he rang the hospital, called for an ambulance. Packed his bag and it wasn't long until the paramedic turned up. He wasnt happy with richard's lungs so when the ambulance men came he told them to get him to hospital asap.
Whilst been examined, his blood pressure was low, normally its high, and his oxygen was also low. Improved on a bit of oxygen... before i knew it he was in the chair and put in the ambulance and off he went :(

i have never cried so much ( well i have but not at Richard), packing his bag and seeing him go off in the ambulance was heartbreaking- just standing at the door trying to not cry my eyes out, even though i did.
I drove home and cried and cried, i just wish i had climbed in to the ambulance but i just felt having me and him mum there would have been to much in the state he was in. Makes it a pain when the nurses come in and out and so on...

Richard had very low blood sugar levels, low glucose, was put on the highest oxygen level, put on fluid and had an x ray, and a CT scan this morning. I went to visit him today and doesnt seem much has changed, well its on and off, his oxygen was on 4 and the highest is 10 so even though 4 is high its not as bad as 10. He was tired but seemed perkier, had a giggle and saw another family of a young lad who was diagnosed when he was last in hospital.

Poor richy all hooked up on fluid, drugs and oxygen...

A new Beginning.

Today is a new begining and a new start. Richard starts the new chemo drug today. i really hope it is as good as they say it and that he starts to feel better sooner rather than later. he needs it so much. 


today is where it all begins, the long road to recovery has begun.....

Cancer

Being with some one who has cancer is a big scary emotional rollercoster. You just never know what's going to happen, what it will be like or what to expect. You never know what they're going to be like, if there going to be full of energy, or too tired to get up, whether they are going to be happy, sad, angry or fed up. You never know what to say or do to cheer them up because deep down nothing does the trick. You never know what to expect when you go to another hospital visit, whether it is good news or bad. You just never know what's going to happen in that second, that minute, that hour, that day, that week, that month or that year. You never know how to smile because you know deep down or they think about is cancer and nothing else.