Hey everyoneWell a pretty uneventful day really in terms of medical stuff. Woke up at 6am to the usual obs; blood pressure, sats and temperature and also had bloods taken, through my new line I might add lol! All in working order. Then I dozed for a bit, surfed the internet via my phone and spoke to Becky on the phone just after elevenish. It was good talking to Bex and she seems good at the moment, apart from a nose bleed! Thats me and Bex last Sunday when I first came into hospital. We watched the FA cup game in the Day Room!
Mum and dad arrived then and I had a rather nice - by - hospital - standards beef roast dinner which I ate all of! Steroids eh! The on-call doctor was pleased with me and was glad to see the steroids had had an easing effect. The nurse I had today was nice enough again, a male guy I haven’t had before, not very chatty but then to be honest I haven’t really needed anything doing today!
I can’t stop itching though which is annoying! It’s a symptom of the lymphoma but it’s just so irritating! Itchy arms and legs and back! The weirdness of this disease is just bizarre! Stitches and wounds from both lines are all itching too which is a good sign as it shows they must be healing up. My back pain has been kept at bay today, slight twinges but nothing significant and I’ve not had painkillers since 7am which is a record in the last 2 days! I was on them every hour! The steroids have eased my breathing and although I’m still pretty much bedridden I can climb out of bed easier and be wheeled to the toilet at least! I’m still on and off oxygen to ease things and I can still feel swelling in my face but it’s nowhere near as bad as I felt yesterday and the day before. My leg is less sore from the line as well which is helping movement.
Then this afternoon I had some friends from uni visit, thanks to Bex, Mark, Andy, Nat Sarah and Steph who all came, I really appreciated it and I liked the chocolates, cake and juice!! So thanks again, it really does help seeing familiar faces and I can’t say enough how much I enjoyed seeing you all there! And for making the effort to come! It really does show how great everyone at Aston has been throughout all of this. Please feel free to visit again whenever, I can’t stress enough how much I enjoy seeing people.
I spoke to Rachel on the phone after that for about an hour or so and it was great to catch up, even if the news isn’t the greatest to tell I find it better being open and honest with people and I think it was good for us to talk about it all and what happens now. It’s better to be realistic as hard as it may be to face. I think I’m coping ok with everything at the moment which is maybe helping everyone else, I dunno if that sounds bigheaded! But I mean like I’m not shutting myself away into a depression and I’m being quite hopeful and taking each day at a time and not focusing too much on the what ifs and the future so it makes it easier to be normal and focus on getting through each day. I’m being realistic but I still have to have the hope that the unrealistic will happen if that makes sense! Maybe my tumour will suddenly decide to respond for the amount of time I need, u never know! But at the same time I have to be realistic so I’m not let down dramatically if it does go wrong again. Its about balance. And maybe if I’m like that and get that right it helps other people deal with it a bit more easily as well, I dunno if I’m explaining this very well! Lol. Anyway the gist of that was it was good to chat to Rachel! And I missed the weekend in Reading but I was there in spirit guys!! It sounds like you had a good time anyways so that’s cool!
After that mum and dad came back, I spoke to nan on the phone. I can tell a change in nan now, I can’t put my finger on it but she seems to finally be living in the real world with this illness and realising how serious it is and I think it worries her (well obviously) but she is still treating me normally and is still hopeful which is good and is what I need but I can tell she is beginning to accept the truth and everything now which is good also I think. The problem is she doesn’t have anyone at home now to talk too now my granddad is gone so it’s harder for her to get constant reassurance and I think she needs that from us more now. But I spoke to her and I think she appreciates it and was glad to hear that I was doing better today.
After tea I watched dancing on ice which I don’t think is as good as in previous years actually but its something to keep an eye on! I think Suzanne, Gareth Gates and Chris from Hollyoaks are the best and that girl who used to be in Coronation Street too isn’t bad. Glad Aggie went though, she was really crap to be fair!
I also phoned Hammad tonight as I had promised to today as he got back from skiing and obviously had only just found out the weeks events! We concluded in future when he leaves the country or goes on holiday he should pre-warn the hospitals I’ll be in as something is bound to go wrong! But we chatted for a good hour, glad to hear skiing was good and obviously we chatted about what had happened this week. Bit of a shock to come back from holiday too but Hammad is always easy to chat too and says the right things so it was good again, like Rachel, to get everything out and be honest. Like he said I’m trying to keep things as normal as possible and keep the problems physical rather than letting them completely take over mentally and he seemed to think I was doing well with that so I’ll take his word for it and as a compliment! One day at a time and not letting it take over in a depressive way is the way forward. Obviously I have my sad moments and my depressing moments but at the moment they are rare and I am actually quite surprised at myself at how I’m managing to deal. I keep expecting me to like have a moment where it all just hits me and I end up in tears but it just hasn’t happened yet! I plan to just enjoy the days when I can do stuff and get through the days when I’m weaker. I’ll make the most of what I can do each day. Reality will hit me soon enough and I’ll have a down day I know I will but I’m ok at the min and trying to keep it that way! Steroids help!
There is an organisation called the Willows Foundation and it’s an organisation that arranges special days for young people with life threatening illnesses, so like they’ll pay for you to go to a West End Show or something or a football game. Anyway I’ve decided to apply for a special day and I should qualify no problem as I match all the criteria. My original idea was to have a day at Anfield watching a league match there but I don’t think that’s gonna be realistic and with match days only being on certain days etc and the travelling required I just don’t see it happening. Plus that is something I could pay for myself and organise in the future if it is possible.
So I have decided to apply for a social afternoon with my friends and family, say between 20-30 people, I would hire out a hall in Burton (I have somewhere in mind) and there would be a meal and some catering put on and I would be able to invite family and friends and have a kind of mini party I guess! It’s something I haven’t been able to do, like go out and socialise properly with everyone together and it would be a chance for all my close friends from uni and home and my family as well to enjoy a day together and just generally have a good time. I wouldn’t have it as an alcoholic thing, like I would have wine or something with dinner but the idea wouldn’t be to come and get pissed as that’s not what it would be about. Plus I can’t drink and I’m selfish! I would apply for them to pay for the price of the hall, the food and the travelling expenses of anyone coming from far away such as people from uni, obviously I don’t know how much money I’ll get but it should cover most people’s costs. It would be done at a weekend and I would give people plenty of notice. Obviously I can’t invite everyone as much as I would love too but I’ll sort that out nearer the time about who can/couldn’t come etc. But yeh that’s my plan for that. I’m gonna send the form off in the next week or so. Hopefully it should all work out and it gives me something to look forward too as well!
Aside from that I’ve done nothing else today. Think Chemo should start tomorrow or Tuesday latest I would I think so I guess we’ll find out everything in the next few days. I don’t know much about the regime at all really in terms of how long I’m connected to the drip and stuff. I’ll ask tomorrow. Guess I’m slightly nervous about it cos its strong stuff and I dunno how ill I’m gonna feel but to be honest as long as it starts to make my symptoms disappear I’ll cope with the side effects cos I know they are temporary! Hate this whole not being able to breathe properly malarkey! My belly injections continue as well and they still sting but I think I’m getting used to it! The nurses all have different ways of giving them, some put them in slowly which hurts more, others like jab them in like a dart which sounds more painful but actually isn’t!! Just had some lovely oramorph to ensure the back pain stays away overnight! Hate the stuff but it does the trick!
Messages and visits are still appreciated as are texts which I have had plenty of so thanks again! Watched Match of the Day tonight without knowing the scores, shocked by Villa score! That’s the only thing I don’t have here….sky sports! But I can cope without! I’m settled here now and realise this is home for the next 3-4 weeks and I know I couldn’t be at home right now so that’s fine! Anyway that’s me done for tonight. I finish the evening as I started the day, with obs and a blood sugar test!
Night Night xxxxx
I can’t stop itching though which is annoying! It’s a symptom of the lymphoma but it’s just so irritating! Itchy arms and legs and back! The weirdness of this disease is just bizarre! Stitches and wounds from both lines are all itching too which is a good sign as it shows they must be healing up. My back pain has been kept at bay today, slight twinges but nothing significant and I’ve not had painkillers since 7am which is a record in the last 2 days! I was on them every hour! The steroids have eased my breathing and although I’m still pretty much bedridden I can climb out of bed easier and be wheeled to the toilet at least! I’m still on and off oxygen to ease things and I can still feel swelling in my face but it’s nowhere near as bad as I felt yesterday and the day before. My leg is less sore from the line as well which is helping movement.
Then this afternoon I had some friends from uni visit, thanks to Bex, Mark, Andy, Nat Sarah and Steph who all came, I really appreciated it and I liked the chocolates, cake and juice!! So thanks again, it really does help seeing familiar faces and I can’t say enough how much I enjoyed seeing you all there! And for making the effort to come! It really does show how great everyone at Aston has been throughout all of this. Please feel free to visit again whenever, I can’t stress enough how much I enjoy seeing people.
I spoke to Rachel on the phone after that for about an hour or so and it was great to catch up, even if the news isn’t the greatest to tell I find it better being open and honest with people and I think it was good for us to talk about it all and what happens now. It’s better to be realistic as hard as it may be to face. I think I’m coping ok with everything at the moment which is maybe helping everyone else, I dunno if that sounds bigheaded! But I mean like I’m not shutting myself away into a depression and I’m being quite hopeful and taking each day at a time and not focusing too much on the what ifs and the future so it makes it easier to be normal and focus on getting through each day. I’m being realistic but I still have to have the hope that the unrealistic will happen if that makes sense! Maybe my tumour will suddenly decide to respond for the amount of time I need, u never know! But at the same time I have to be realistic so I’m not let down dramatically if it does go wrong again. Its about balance. And maybe if I’m like that and get that right it helps other people deal with it a bit more easily as well, I dunno if I’m explaining this very well! Lol. Anyway the gist of that was it was good to chat to Rachel! And I missed the weekend in Reading but I was there in spirit guys!! It sounds like you had a good time anyways so that’s cool!
After that mum and dad came back, I spoke to nan on the phone. I can tell a change in nan now, I can’t put my finger on it but she seems to finally be living in the real world with this illness and realising how serious it is and I think it worries her (well obviously) but she is still treating me normally and is still hopeful which is good and is what I need but I can tell she is beginning to accept the truth and everything now which is good also I think. The problem is she doesn’t have anyone at home now to talk too now my granddad is gone so it’s harder for her to get constant reassurance and I think she needs that from us more now. But I spoke to her and I think she appreciates it and was glad to hear that I was doing better today.
After tea I watched dancing on ice which I don’t think is as good as in previous years actually but its something to keep an eye on! I think Suzanne, Gareth Gates and Chris from Hollyoaks are the best and that girl who used to be in Coronation Street too isn’t bad. Glad Aggie went though, she was really crap to be fair!
I also phoned Hammad tonight as I had promised to today as he got back from skiing and obviously had only just found out the weeks events! We concluded in future when he leaves the country or goes on holiday he should pre-warn the hospitals I’ll be in as something is bound to go wrong! But we chatted for a good hour, glad to hear skiing was good and obviously we chatted about what had happened this week. Bit of a shock to come back from holiday too but Hammad is always easy to chat too and says the right things so it was good again, like Rachel, to get everything out and be honest. Like he said I’m trying to keep things as normal as possible and keep the problems physical rather than letting them completely take over mentally and he seemed to think I was doing well with that so I’ll take his word for it and as a compliment! One day at a time and not letting it take over in a depressive way is the way forward. Obviously I have my sad moments and my depressing moments but at the moment they are rare and I am actually quite surprised at myself at how I’m managing to deal. I keep expecting me to like have a moment where it all just hits me and I end up in tears but it just hasn’t happened yet! I plan to just enjoy the days when I can do stuff and get through the days when I’m weaker. I’ll make the most of what I can do each day. Reality will hit me soon enough and I’ll have a down day I know I will but I’m ok at the min and trying to keep it that way! Steroids help!
There is an organisation called the Willows Foundation and it’s an organisation that arranges special days for young people with life threatening illnesses, so like they’ll pay for you to go to a West End Show or something or a football game. Anyway I’ve decided to apply for a special day and I should qualify no problem as I match all the criteria. My original idea was to have a day at Anfield watching a league match there but I don’t think that’s gonna be realistic and with match days only being on certain days etc and the travelling required I just don’t see it happening. Plus that is something I could pay for myself and organise in the future if it is possible.
So I have decided to apply for a social afternoon with my friends and family, say between 20-30 people, I would hire out a hall in Burton (I have somewhere in mind) and there would be a meal and some catering put on and I would be able to invite family and friends and have a kind of mini party I guess! It’s something I haven’t been able to do, like go out and socialise properly with everyone together and it would be a chance for all my close friends from uni and home and my family as well to enjoy a day together and just generally have a good time. I wouldn’t have it as an alcoholic thing, like I would have wine or something with dinner but the idea wouldn’t be to come and get pissed as that’s not what it would be about. Plus I can’t drink and I’m selfish! I would apply for them to pay for the price of the hall, the food and the travelling expenses of anyone coming from far away such as people from uni, obviously I don’t know how much money I’ll get but it should cover most people’s costs. It would be done at a weekend and I would give people plenty of notice. Obviously I can’t invite everyone as much as I would love too but I’ll sort that out nearer the time about who can/couldn’t come etc. But yeh that’s my plan for that. I’m gonna send the form off in the next week or so. Hopefully it should all work out and it gives me something to look forward too as well!
Aside from that I’ve done nothing else today. Think Chemo should start tomorrow or Tuesday latest I would I think so I guess we’ll find out everything in the next few days. I don’t know much about the regime at all really in terms of how long I’m connected to the drip and stuff. I’ll ask tomorrow. Guess I’m slightly nervous about it cos its strong stuff and I dunno how ill I’m gonna feel but to be honest as long as it starts to make my symptoms disappear I’ll cope with the side effects cos I know they are temporary! Hate this whole not being able to breathe properly malarkey! My belly injections continue as well and they still sting but I think I’m getting used to it! The nurses all have different ways of giving them, some put them in slowly which hurts more, others like jab them in like a dart which sounds more painful but actually isn’t!! Just had some lovely oramorph to ensure the back pain stays away overnight! Hate the stuff but it does the trick!
Messages and visits are still appreciated as are texts which I have had plenty of so thanks again! Watched Match of the Day tonight without knowing the scores, shocked by Villa score! That’s the only thing I don’t have here….sky sports! But I can cope without! I’m settled here now and realise this is home for the next 3-4 weeks and I know I couldn’t be at home right now so that’s fine! Anyway that’s me done for tonight. I finish the evening as I started the day, with obs and a blood sugar test!
Night Night xxxxx
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