Hey everyone, hope you all had a fantastic Christmas! mine was good, but uneventful,was nice just being in the same country as my family and friends.One reason the festive period was so quiet is down to the exhaustion that now dominates my waking hours. I have experienced drowsiness from medication before, but chemo cranks it up to a whole new level! From the moment I wake up I feel shattered, I frequently doze off in the afternoon, and reglarly pass out in front of the TV in the evenings. I often wake up in bed with my lamp and TV still on as I fell asleep before turning them off!On top of my mobility problems, the tiredness makes walking a dangerous business, I can easilly miss my step, and have fallen over twice in the last fortnight (thankfully indoors).
I did hoever get out on Wednesday(28th) for a pre-booked trip to the Maddermarket theatre in Norwich to watch "AChristmas Carol" with my mother, my brother drove us both there so walking was kept to a minimum, and I managed to stay awake during the whole performance- bonus!!
My new years Eve plans are also going to be quiet, I will stay home with my parents ( rock 'n'roll!!!) and probably watch the big ben chimes with a drink or two- this is if I manage the almighty task of ataying awake til midnight!
I hope you all have a great time tonight, Happy New Year and all the best for 2012!
Saturday, 31 December 2011
Tuesday, 20 December 2011
Why I will be having a HAPPY Christmas
being diagnosed with cancer does funny things to people, not to me, but to other people. I get asked " how are you? but if I answer "good thanks" , I seem to get an incredulous look as if I'm lying. actually that question often changes to "how are you apart from the obvious..? " as if talking about my illness will somehow destroy me- trust me, I'm egocentric enough to talk about myself for hours!!!
At this time of year, I get a llot of "I hope you can try to enjoy Christmas..." or "Have a happy Christmas(if you can..)" The fact is I've always liked Christmas and don't see why this year should be any different. Last year I spent Christmas in Taiwan; a country which does not generally celebrate Christmas, during my last few weeks out there, I was really looking forward to a Christmas with my family and friends, so I'm really glad to be here. I'm not remotely religous, but this time of year alwaya seems associated with hope and love and (~not wishing to get too sentimental!) , these are both pretty important to me right now. plus it's a busy time for me, iyt's my parents' 43rd wedding anniversary tomorrow and , thankfully, I feel well enough togo out for lunch with them tomorrow to celebrate. Then Christmas day itself is also my brother's birthday, so am looking forward to a drink or two to celebrate! Christmas is the one time we can put our worries on the back-burner and just enjoy ourselves which I fully intend to do!
Happy Christmas everyone
At this time of year, I get a llot of "I hope you can try to enjoy Christmas..." or "Have a happy Christmas(if you can..)" The fact is I've always liked Christmas and don't see why this year should be any different. Last year I spent Christmas in Taiwan; a country which does not generally celebrate Christmas, during my last few weeks out there, I was really looking forward to a Christmas with my family and friends, so I'm really glad to be here. I'm not remotely religous, but this time of year alwaya seems associated with hope and love and (~not wishing to get too sentimental!) , these are both pretty important to me right now. plus it's a busy time for me, iyt's my parents' 43rd wedding anniversary tomorrow and , thankfully, I feel well enough togo out for lunch with them tomorrow to celebrate. Then Christmas day itself is also my brother's birthday, so am looking forward to a drink or two to celebrate! Christmas is the one time we can put our worries on the back-burner and just enjoy ourselves which I fully intend to do!
Happy Christmas everyone
Sunday, 18 December 2011
The not-so-perfect start to the day...
had my hospital appointment on Friday, where I picked up my bumper bag of chemo drugs.
Turns out it's not as simple as just taking the darnthinngs; cchemo takes military procision. For starters they have to be taken on an empty stomach.At the same time every day. For most people this means first thing in the morning, as most people rarely have all their meals at the same time every day. So starting yesterday (Saturday), I wake up at 7am (with help from Mr Alarm clock) and take two anti=sickness tablets, then I have to wait 30 minutes before taking three chemo tablets, then wait an hour before I'm able to eat. Given I'm not working (and I'm knackered all the time!), I generally have a sleep during this hour! yesterday was the first dose and absolutely clobbered me! I was fine until I started my breakfast, which I couldn't even get down.Learning from my mistakes, I decided that from now on milky cereal is not a good idea! I felt sick for a couple of hours, but by lunchtime, I was fine, all-b-it tired. Today has been a lot better. Lightly buttered toast proved much better, and I've been okay, so I'm keeping my fingers crossed, that it stays this way, and I'm one of those lucky few that doesn't suffer too badly, or if I do it's only in the mornings.
In other news, sadly the mobility's becoming more of an issue: I'm having flashbacks to ten years ago, when I could barely walk! My left leg (like my arm) is now very weak, so walking is a real effort.I've started using a stick outside again, as I don't feel very safe, which is a real nuisance.
otherwise I'm honestly doing okay, just get a bit grumpy now and again! Glad to be home for Christmas too, especially as being inTaiwan meant I missed out last year!
Turns out it's not as simple as just taking the darnthinngs; cchemo takes military procision. For starters they have to be taken on an empty stomach.At the same time every day. For most people this means first thing in the morning, as most people rarely have all their meals at the same time every day. So starting yesterday (Saturday), I wake up at 7am (with help from Mr Alarm clock) and take two anti=sickness tablets, then I have to wait 30 minutes before taking three chemo tablets, then wait an hour before I'm able to eat. Given I'm not working (and I'm knackered all the time!), I generally have a sleep during this hour! yesterday was the first dose and absolutely clobbered me! I was fine until I started my breakfast, which I couldn't even get down.Learning from my mistakes, I decided that from now on milky cereal is not a good idea! I felt sick for a couple of hours, but by lunchtime, I was fine, all-b-it tired. Today has been a lot better. Lightly buttered toast proved much better, and I've been okay, so I'm keeping my fingers crossed, that it stays this way, and I'm one of those lucky few that doesn't suffer too badly, or if I do it's only in the mornings.
In other news, sadly the mobility's becoming more of an issue: I'm having flashbacks to ten years ago, when I could barely walk! My left leg (like my arm) is now very weak, so walking is a real effort.I've started using a stick outside again, as I don't feel very safe, which is a real nuisance.
otherwise I'm honestly doing okay, just get a bit grumpy now and again! Glad to be home for Christmas too, especially as being inTaiwan meant I missed out last year!
Thursday, 8 December 2011
"Nice" chemo
I had my appointment with my oncologist, Dr R today, so now am a little clearer on everything. My main tumour actually looks smaller than last time. The problem is that there are two small groups of cancer cells away from the tumour, so if they operated, it would be hard to remove all three bits without causing damage. Hopefully chemo can blast the whole lot! I am going to be put on what Dr R described as a "nicer"chemo. Rather than intra-veinous via lines and needles, mine is a tablet form called temozolomide. I will take it for five days once a month. It has milder side effects than other forms, I will probably be tired, but severe sickness is rare, and it's very unlikely that I will lose my hair- result! Feeling quite positive at the moment, just waiting for the green light to get started!
Tuesday, 6 December 2011
Don't Panic!!!
Feel like I had to use the title, as what I am about to say has already caused a somewhat mixed reaction from the people I've told. Basically , there has been a change of plan.
I was phoned yesterday evening by the neuro team at Addenbrookes. They'd looked at the contrast scan (I had a week ago) and decided surgery was not in my best interests.
To clarify, that doesn't mean they can't operate, rather that they think I can be better served by other treatment, in my case Chemo. I already knew I'd be having chemo, this means I don't need yet another risky operation, which I'm choosing to see as a positive! Plus I can have all my treatment at Norwich under the supervision of my lovely oncologist who I've had the last three years- no horrible long trips to Cambridge!
In other news, think the steroid might have finally started to kick in, as for the first day in the last two weeks , I haven't felt dizzy- results all round!
Will as ever keep updating, please keep donating to BT Buddies via my just giving page
I was phoned yesterday evening by the neuro team at Addenbrookes. They'd looked at the contrast scan (I had a week ago) and decided surgery was not in my best interests.
To clarify, that doesn't mean they can't operate, rather that they think I can be better served by other treatment, in my case Chemo. I already knew I'd be having chemo, this means I don't need yet another risky operation, which I'm choosing to see as a positive! Plus I can have all my treatment at Norwich under the supervision of my lovely oncologist who I've had the last three years- no horrible long trips to Cambridge!
In other news, think the steroid might have finally started to kick in, as for the first day in the last two weeks , I haven't felt dizzy- results all round!
Will as ever keep updating, please keep donating to BT Buddies via my just giving page
Monday, 5 December 2011
When meds go bad.... & giving consent
The dark side of drugs...
Have just had a hideous weekend of illness which we attributed to side effects from one of the three medicine I hasve been instructed to take prior to my surgery on the 12th. I woke up on Saturdaay with the worst headache I have ever experienced, and then proceded to be sick pretty much every hour until bedtime. The dsy was a right-off, mostly spent in bed watching TV and falling asleep! As I was not eating anything, I stopped all meds for the day, and on looking over the side effects (you know that bit of paper in the pill box that nobody ever reads?!) worked out the culprit; ironically the "stomackh settler" you take along with the steroid to prevent stomach ulcers or gastric problems. I felt marginally better on Sunday- at least I was able to eat a little food and take my other meds, although I still felt headachey and lacking in energy
Today I am much better, although getting increasingly frustrated by the dead left arm malarky- takes an age to put your hair up with only one hand! Plus feels more than a little pathetic that at the age of 33, I have to ask my mother to help cut up my dinner!
Consent...
It occurs to me that those of you who are lucky enough to have never needed surgery may not kno how weird the whole consent process is. I have now had to do this several times. During the aftermath of my accident, the resposibility fell to my parents, as I was not capeable of talking let alone understasnding and signing my name, but about a month into my hospital stay I was more concious and approached for consent regarding the plastic surgeryy to my leg. Then three months after I left hospital, I agreed to an operation on the achilles tendons in my right foot. However consenting to brain surgery is a different matter. For starters the list of possible risks is vast and these are explained in detail by the surgeon to make sure you are fully informed. To be honest you have to take an enormous leap of faith and hope in your case you'll be okay. I think it helps to weigh up the alternatives. For me not having surgery has never been an option.
The time is getting closer to the big day now, will be glad in a weeks time when the scary part is over!
Have just had a hideous weekend of illness which we attributed to side effects from one of the three medicine I hasve been instructed to take prior to my surgery on the 12th. I woke up on Saturdaay with the worst headache I have ever experienced, and then proceded to be sick pretty much every hour until bedtime. The dsy was a right-off, mostly spent in bed watching TV and falling asleep! As I was not eating anything, I stopped all meds for the day, and on looking over the side effects (you know that bit of paper in the pill box that nobody ever reads?!) worked out the culprit; ironically the "stomackh settler" you take along with the steroid to prevent stomach ulcers or gastric problems. I felt marginally better on Sunday- at least I was able to eat a little food and take my other meds, although I still felt headachey and lacking in energy
Today I am much better, although getting increasingly frustrated by the dead left arm malarky- takes an age to put your hair up with only one hand! Plus feels more than a little pathetic that at the age of 33, I have to ask my mother to help cut up my dinner!
Consent...
It occurs to me that those of you who are lucky enough to have never needed surgery may not kno how weird the whole consent process is. I have now had to do this several times. During the aftermath of my accident, the resposibility fell to my parents, as I was not capeable of talking let alone understasnding and signing my name, but about a month into my hospital stay I was more concious and approached for consent regarding the plastic surgeryy to my leg. Then three months after I left hospital, I agreed to an operation on the achilles tendons in my right foot. However consenting to brain surgery is a different matter. For starters the list of possible risks is vast and these are explained in detail by the surgeon to make sure you are fully informed. To be honest you have to take an enormous leap of faith and hope in your case you'll be okay. I think it helps to weigh up the alternatives. For me not having surgery has never been an option.
The time is getting closer to the big day now, will be glad in a weeks time when the scary part is over!
Thursday, 1 December 2011
becoming unbalanced...
Disability is already a huge part of my day-to-day existence, infact it has been a grim reality for the last 10 years. When I was hit by a car back in 2001, I broke both my arms, my left thigh (femur)and shattered my pelvis in seven places. Following extensive surgery, I had metal put in both arms, my left leg, and pelvis. Those of you who have known me a while already know this, others who have met me more recently, probably know I had an accident, but don't know the full extent of the injuries.You see, just by watching me walk, it's obvious that something is... well... not quite right. As well as all the fractures, I had a lot of permanent muscle and nerve damage leading to an obvious limp and a deformed left foot which is turned inward. I wobble on uneven ground, and need help going up and down stairs where there is no hand rail. I have been living with this for so long, I'm used to it. However, with this added left-sided weakness (caused by the tumour), I am feeling more disabled than ever. I am sure that not being able to use your left hand would be disconcerting for the most able-bodied person, but in my case, it takes away one of the ways in which I balance myself, so I feel even more unsteady on my feet. My cognitive functions are also impaired at present, I spend most days feeling a bit foggy brained and increasingly stupid!I also keep forgetting my left hand is useless, until I go to pick something up and it just slips through my fingers.
I guess on a positive note, having already had a disability for so long, I'm already used to adjusting activities and work out how to do things another way, but it is so ANNOYING. THe scariest thing (and something I'm trying not to think about), is that they can't guaratee things will get better after surgery, so I could get stuck with only one fully-functioning hand, but as I said to my surgeon; weakness isn't life threatening, so I have to have surgery and hope for the best.
I guess on a positive note, having already had a disability for so long, I'm already used to adjusting activities and work out how to do things another way, but it is so ANNOYING. THe scariest thing (and something I'm trying not to think about), is that they can't guaratee things will get better after surgery, so I could get stuck with only one fully-functioning hand, but as I said to my surgeon; weakness isn't life threatening, so I have to have surgery and hope for the best.
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