I have just checked the calendar to see how many weeks it has been since chemo and its......2, it feels like at least 5!?! 15 days is that really it! Looks like this may be a long few months! Roll on summer I say!
Saying that 15 days after chemo and all my side effect symptoms have now gone. so that's good. I get a normal few days before we start again. I only hope the next cycle goes as smoothly as this one.
I was expecting to be chucking up for a good week, lying in bed with Rick mopping my brow while feeling desperately sorry for myself. I did the lying in bed thing, but bar one or two painful moments it was very bearable.
I in fact got no nausea which was nice as I'm not sick often and I'm sure that's because my body knows I don't really like it! I took my anti sickness medication 'just incase' for the first 6 days then forgot after that and by the time I remembered I figured I didn't need it!
I have definitely felt tired, so much so I have even enjoyed a few siestas which I haven't done since before I had Madeline when I could quite easily nod off on the couch in an afternoon. Enforced naps aren't always as nice as naps when you feel 100% well but some days it was just nice to pass some time. The days have seemed very long when they don't seem to have much purpose. A couple of months ago I could only dream of having this much time on my hands but now I have I have lost all inclination to do all the jobs I had lined up. They are all still waiting!
On day 10 I thought I was in full blown labour! My stomach had swelled up and was really tense even putting my hand gently on it was really painful. Later that day I started getting really bad 'contractions' which had me doubled over in pain they got worse and worse over night and the pain made me vomit and sweat.
By the morning I decided to call the gp out ( as typically it was a Saturday). I was really hoping that they weren't going to say I just needed a big trump and it would be sorted! The GP came and she was really lovely, she said I had a bad case of bowel colic and made me feel better by saying they only thing on a par in regards to pain was labour, gall stones and renal colic. So I went from being miserable in pain and feeling very mard to being equally in pain but smug and slightly proud that I was actually a big brave girl. She prescribed buscopan ( an anti spasmodic ) which she promised would help within 12 hours and did. The contractions went away but for about 5 days I was left with a tender raw feeling abdomen. Day 15 this has just passed and I'm enjoying feeling normal again! Feels like it went on for ages!
All the fast growing cells in my body, the cancer cells but also some of my normal cells are killed off.'The place this normally affects is from your mouth all the way down, through and 'out'. This makes everything In between very raw. I had a sore mouth with a few ulcers and funny scar like lines.
This coincided with my neutropenia ( where my white blood cell count was knocked down very low, specifically my neutrophils ). I guess this was a side effect too and during these 4 days or so I was extra tired but it was painless enough. I just had to avoid any infections in this time as my body couldn't fight them and I'd be hospitalised :(
My only other side effect is that my scar on my chest I had ( from my biopsy back in December ) isn't healing. It was looking so good but since chemo it's all broken down and I've pulled random big bits of thick internal stitches out of the holes! I thought it was just a hair so grabbed and pulled and this thick acrylic/ wire like thing came out! Then about 6 hours later another one worked its way out of the hole. The day after the other end broke down and a bit of stitch came out that end too! luckily I stopped unravelling and my holes closed up. When I checked with the Dr at the hospital he told me off for tugging my internal stitches out and picking my scabs ( I couldn't help it! I had waited a whole month! ). He also said that unfortunately while I'm on chemo my scar won't heal and may get worse and worse. The added problem that I have is that area is then going to receive at least 3 weeks of radiation ( frying ) which will make it even worse or in the doctors words: you will be left with a big bit of 'funny skin'. I can choose at the end to have it all cut out and start again and hopefully the next scar will heal nicely?
Don't suppose I should be moaning about a scar, it's just a shame it is slap bang in the middle of my chest ( to left of my sternum over top of heart ) so 80% of my tops and 100% of my dresses are out and I will need to invest in some granny turtle necks! Another quick moan tho! It wasn't even from surgery to remove the blasted thing it was only a biopsy but they needed to open my up spread my ribs dig in my chest so scar is quite sizeable :(
Ok moan over! Roll on the next cycle if its as 'easy' as that!
Tuesday 29 January 2013
Sunday 20 January 2013
Steroids, my miracle drug!
Who would have thought I would be raving about drugs! Rick has to force paracetamol down me when I'm in pain as I much prefer just taking myself off for a sleep! Unfortunately the sleep tactic had stopped working after Christmas and I had found myself not really in pain but breathless when got out of bed or tried to maintain a conversation for more than a couple of minutes, ( hard to believe I know!! ).
My heart was being squashed to its limit giving me the weirdest sensations. It beat so irregularly it felt like it was stopping every so often then bouncing round my chest the other time! If it was your foot or toe that was hurting then its easier to ignore but once my heart set off being funny it felt like I was in the middle of running a marathon. No matter how much I deep breathed or though of relaxing thoughts it made no difference. This used to happen for hours at a time where all I could do was lie down looking very relaxed but inside I was doing lots of strenuous activity!!
Many a time rick urged me to go to A&E as he was un nerved being alone with me! Feeling or listening to my pulse was also rather scary as there was many missing beats and it used to bounce so much you could see it against my chest. I found it more impressive but I know if it was happening to Rick I would have been having kittens!!
I was also having night fevers, these are classic B cell lymphoma symptoms but running a temperature of 39 each night not only made me sweaty, but also very restless and disturbed my sleep.
Because my PET scan was still weeks off I knew I could not carry on so the hospital started me on 50mg ( 10 tablets ) of prednisalone ( a steroid ). I took them one morning and by tea time I was a different person!! I was truly amazed.
As I continued on the steroids for the 2 weeks prior to my PET scan I felt better and better ( surreal really when inside getting worse ) and then got the steroid munchies! They were great! Not only did I fancy eating everything I could actually fit it all in too.
Another interesting fact about steroids in lymphoma is they act like suicide bombers and the steroids make the and normal lymphocytes kill themselves so can actually (to a point) reduce tumour size and manage symptoms.
Once I started my chemo I doubled my steroids and took 100mg ( 20 tablets a day ) and I'm currently weaning over the next few days till I'm on none! I'm not allowed to just stop as apparently il have a big drug withdrawal and end up in bed with shakes and sweats, I'm down to 6 tablets tomorrow and hoping I wean off without my body missing them too much!
I have really loved these things! I get 5 days of 100mg ( 20 tablets ) at each chemo cycle so il still have little tasters. Maybe now I will loose the 3kg I've gained just from being on steroids and the food shopping bill will also go down accordingly.
My heart was being squashed to its limit giving me the weirdest sensations. It beat so irregularly it felt like it was stopping every so often then bouncing round my chest the other time! If it was your foot or toe that was hurting then its easier to ignore but once my heart set off being funny it felt like I was in the middle of running a marathon. No matter how much I deep breathed or though of relaxing thoughts it made no difference. This used to happen for hours at a time where all I could do was lie down looking very relaxed but inside I was doing lots of strenuous activity!!
Many a time rick urged me to go to A&E as he was un nerved being alone with me! Feeling or listening to my pulse was also rather scary as there was many missing beats and it used to bounce so much you could see it against my chest. I found it more impressive but I know if it was happening to Rick I would have been having kittens!!
I was also having night fevers, these are classic B cell lymphoma symptoms but running a temperature of 39 each night not only made me sweaty, but also very restless and disturbed my sleep.
Because my PET scan was still weeks off I knew I could not carry on so the hospital started me on 50mg ( 10 tablets ) of prednisalone ( a steroid ). I took them one morning and by tea time I was a different person!! I was truly amazed.
As I continued on the steroids for the 2 weeks prior to my PET scan I felt better and better ( surreal really when inside getting worse ) and then got the steroid munchies! They were great! Not only did I fancy eating everything I could actually fit it all in too.
Another interesting fact about steroids in lymphoma is they act like suicide bombers and the steroids make the and normal lymphocytes kill themselves so can actually (to a point) reduce tumour size and manage symptoms.
Once I started my chemo I doubled my steroids and took 100mg ( 20 tablets a day ) and I'm currently weaning over the next few days till I'm on none! I'm not allowed to just stop as apparently il have a big drug withdrawal and end up in bed with shakes and sweats, I'm down to 6 tablets tomorrow and hoping I wean off without my body missing them too much!
I have really loved these things! I get 5 days of 100mg ( 20 tablets ) at each chemo cycle so il still have little tasters. Maybe now I will loose the 3kg I've gained just from being on steroids and the food shopping bill will also go down accordingly.
Saturday 19 January 2013
The long awaited PET scan
The long awaited PET scan! Since being seen on the 27th dec by the lymphoma team the plan had been to have a CT scan, PET scan and bone marrow then I could start a treatment plan.
Unfortunately after the world moving beneath me at the previous hospital, meaning I didn't have to wait for anything, I was to have no VIP perks here! I got my date through for the 15th Jan which sounded so far off. Especially as my symptoms were now coming thick and fast and my heart was really objecting to being squashed!
The problem with a PET scan is that there isn't many scanners around and accordingly to my VKR ( very knowledgeable radiographer ) they get 6000 people a year needed one at this centre. Without this scan we would not have a baseline and being able to see when I'm in remission would be very difficult.
Luckily I got a cancelation on the 11th and was able to be seen a few days early meaning I could crack on with treatment. I had gone from stalling wanting treatment, just to feel normal for a few more days to desperately wanting to start at one end of the process so I could start counting days until at the other end.
Knowing i needed cannulating prior to the scan we rang our lymphoma nurse and asked if it was at all possible to come cannulated ( ricks a nurse! ), if he was to do it I don't worry as he never misses! The answer phone message we got back was that although this was not possible a very kind and thoughtful research nurse had arranged for a complimentary therapist to give me a massage during the cannulation?! What!!!! How embarrassing and how to make an issue out of it for the poor person having to cannulate me!
Luckily for me I turned up a little early and was ushered straight through and decided to omit the information about my forthcoming massage! My front sheet did say "NEEDLE PHOBIC BRINGING ASSISTANCE" I denied all knowledge of this saying I may just have been a little misunderstood!!
The radiographer looked so confident with the cannula and was but we still managed a miss, was a gentle miss though. Then a lovely passing lady said "lets just use a butterfly in your hand" yippee!!! I love those things!! So with I little butterfly in I was injected with my radioactive sugar tracer and then left to sit in a dark quiet room for 50 mins.
Apparently talking to a relative or reading in this time alters the images but listening to music was ok? I'd typically brought duff ear phones so ended up watching the clock instead hoping that was within the 'rules'.
I was then led through to the scanner and strapped on. It looked very much like a CT with a deeper donut. I initially felt comfortable and relaxed into my 45 min scan. The problem was that when someone tells you you can't move you start getting really uncomfortable! Lying flat on a hard plate thing did nothing for my back and lying flat with my chest tumour altered all the blood flow in my neck so that felt like I was being choked! To then be fed through a donut machine in silence for 45 minutes was a little testing! I can't imagine how people manage if have issues with space? I would have appreciated some human contact in the time, even just someone telling me I was half way through over a speaker would have helped as I had no concept of time at this point!
PET ( positron emitting tomography ) uses the sugar they have injected me with to see where the cancer cells are. Because the cancer cells are so high energy the sugar tracer sticks to them and they glow red on the image ( or look black on a still image ) it's all very clever!
Afterwards I was given some lucozade and a cheese butty as I had had to come starved for the scan so the cancer was 'hungry' for the sugar. I was advices not to go within 2meters of young children for the day, difficult when I had one at home!!
One of the doctors rang me later that day to say they had seen the PET scan and I have more disease than initially they had seen on CT ( this is to be expected as its so aggressive will have grown lots in the wait for a scan and also PET scans more detailed ). Unlike solid tumours haematology cancer grading isn't as scary sounding. A grade 4 solid tumour eg lung would mean you have a metastasis somewhere and the disease would be very advanced. In blood cancer grade 4 means that its traveled round in your blood and more areas are affected but these aren't true metastasis. It made no difference to my treatment plan or drug choice. So there were the results and I got to see my impressive pictures. I could now physically see my grade 4 primary mediastinal diffuse large B cell non Hodgkin's lymphoma and very impressive it was too!
Pics 1 a scanner ( not mine don't worry I didn't go in taking pictures! )
Pic 2/3 my scan results. My brain and bladder should be black the other bits are all lymphoma
Unfortunately after the world moving beneath me at the previous hospital, meaning I didn't have to wait for anything, I was to have no VIP perks here! I got my date through for the 15th Jan which sounded so far off. Especially as my symptoms were now coming thick and fast and my heart was really objecting to being squashed!
The problem with a PET scan is that there isn't many scanners around and accordingly to my VKR ( very knowledgeable radiographer ) they get 6000 people a year needed one at this centre. Without this scan we would not have a baseline and being able to see when I'm in remission would be very difficult.
Luckily I got a cancelation on the 11th and was able to be seen a few days early meaning I could crack on with treatment. I had gone from stalling wanting treatment, just to feel normal for a few more days to desperately wanting to start at one end of the process so I could start counting days until at the other end.
Knowing i needed cannulating prior to the scan we rang our lymphoma nurse and asked if it was at all possible to come cannulated ( ricks a nurse! ), if he was to do it I don't worry as he never misses! The answer phone message we got back was that although this was not possible a very kind and thoughtful research nurse had arranged for a complimentary therapist to give me a massage during the cannulation?! What!!!! How embarrassing and how to make an issue out of it for the poor person having to cannulate me!
Luckily for me I turned up a little early and was ushered straight through and decided to omit the information about my forthcoming massage! My front sheet did say "NEEDLE PHOBIC BRINGING ASSISTANCE" I denied all knowledge of this saying I may just have been a little misunderstood!!
The radiographer looked so confident with the cannula and was but we still managed a miss, was a gentle miss though. Then a lovely passing lady said "lets just use a butterfly in your hand" yippee!!! I love those things!! So with I little butterfly in I was injected with my radioactive sugar tracer and then left to sit in a dark quiet room for 50 mins.
Apparently talking to a relative or reading in this time alters the images but listening to music was ok? I'd typically brought duff ear phones so ended up watching the clock instead hoping that was within the 'rules'.
I was then led through to the scanner and strapped on. It looked very much like a CT with a deeper donut. I initially felt comfortable and relaxed into my 45 min scan. The problem was that when someone tells you you can't move you start getting really uncomfortable! Lying flat on a hard plate thing did nothing for my back and lying flat with my chest tumour altered all the blood flow in my neck so that felt like I was being choked! To then be fed through a donut machine in silence for 45 minutes was a little testing! I can't imagine how people manage if have issues with space? I would have appreciated some human contact in the time, even just someone telling me I was half way through over a speaker would have helped as I had no concept of time at this point!
PET ( positron emitting tomography ) uses the sugar they have injected me with to see where the cancer cells are. Because the cancer cells are so high energy the sugar tracer sticks to them and they glow red on the image ( or look black on a still image ) it's all very clever!
Afterwards I was given some lucozade and a cheese butty as I had had to come starved for the scan so the cancer was 'hungry' for the sugar. I was advices not to go within 2meters of young children for the day, difficult when I had one at home!!
One of the doctors rang me later that day to say they had seen the PET scan and I have more disease than initially they had seen on CT ( this is to be expected as its so aggressive will have grown lots in the wait for a scan and also PET scans more detailed ). Unlike solid tumours haematology cancer grading isn't as scary sounding. A grade 4 solid tumour eg lung would mean you have a metastasis somewhere and the disease would be very advanced. In blood cancer grade 4 means that its traveled round in your blood and more areas are affected but these aren't true metastasis. It made no difference to my treatment plan or drug choice. So there were the results and I got to see my impressive pictures. I could now physically see my grade 4 primary mediastinal diffuse large B cell non Hodgkin's lymphoma and very impressive it was too!
Pics 1 a scanner ( not mine don't worry I didn't go in taking pictures! )
Pic 2/3 my scan results. My brain and bladder should be black the other bits are all lymphoma
Tuesday 15 January 2013
Another day in paradise!
Day 2 and I'm still an inpatient, and still on my fluids while they flush out the initial tumour break down ( to avoid tumourlysis ).
It's been another nice day and I haven't felt too roughy at all? Again the only thing I can compare it too is waking up after drinking a lot the night before and having a dodgy tummy and feeling a bit tired? I assume that's a hangover feeling anyway, as I'm lucky enough to not get many of them!
I woke up, took my 20 steroid tablets, 5 others and followed that down with some rice crispies and the chewiest piece of toast I've ever had! Note to self...... Skip the toast tomorrow!
With a full tummy and a pair of dozey eyes I settled down with day time tv and a little complementary therapist appeared for me! She has been trying to track me down since the research nurse had contacted her to explain my irrational fear of bloods from my ACF ( elbow crease ) and cannulas! I wish if kept my mouth shut!!
I then lay in my 4 bed bay full of visitors and patients while the therapist ran her hands over my aura to relax my veins and channel my energy?!?!? Very sweet and nice thought but I had to try hard not to giggle! After this I was lay down with my eyes shut while she did some relaxation and breathing techniques with me followed by a foot massage! Was very nice but felt a bit of a Plonker in front of a room full of people. Especially when my 'fear' just makes me a moody cow and Rick gets his ears chewed off the night/morning before. At the time of stabbing I'm a big brave girl!
Next I tucked into my lunch of gammon and wedges, not exactly the light lunch I thought I would be forcing down but while my steroid induced body wanted it i had to oblige! Was yummy and had ice cream to follow!
Finally for some company. Rick came and we had a walk to get a Starbucks ( on site ) and bumped into Bill Roach ( Ken Barlow from Corrie ). Luckily for rick I didn't demand a pic and embarrass him to much!! We had an hour sat in the conservatory and tiredness hit me like a brick, could have happily curled up and slept there for a bit but we came back so I could beat Rick at card games instead! We watched the sun set from my bed and then my time was up. In out busy lives that's classed as a full on proper date! Bonus!!
Tea time; sweet and sour chicken and trifle followed by a few hours slob on the bed with entertainment from mum and David . I walked them out and jumped straight back into bed for supper and now it's bed time!
It's before 11 and lights are off! So I'm off to bed. Wow just realised I've got the end of my days blog and not mentioned blood needles or cannulas, ( directly! ). My original cannula is still going strong even though it throbs at times! The phlebotomist went in my ACF which I had covered with Emla that was fine, and a nice nurse kindly used a butterfly in my hand tonight. I may be getting brave. Ok so I'm not getting brave but I can see an end...... Tomorrow afternoon and no one will stab me for 10 days how amazing is that!! Its the small things that make the difference
Nighty night xxxx
Pic is sunset from my bed today
It's been another nice day and I haven't felt too roughy at all? Again the only thing I can compare it too is waking up after drinking a lot the night before and having a dodgy tummy and feeling a bit tired? I assume that's a hangover feeling anyway, as I'm lucky enough to not get many of them!
I woke up, took my 20 steroid tablets, 5 others and followed that down with some rice crispies and the chewiest piece of toast I've ever had! Note to self...... Skip the toast tomorrow!
With a full tummy and a pair of dozey eyes I settled down with day time tv and a little complementary therapist appeared for me! She has been trying to track me down since the research nurse had contacted her to explain my irrational fear of bloods from my ACF ( elbow crease ) and cannulas! I wish if kept my mouth shut!!
I then lay in my 4 bed bay full of visitors and patients while the therapist ran her hands over my aura to relax my veins and channel my energy?!?!? Very sweet and nice thought but I had to try hard not to giggle! After this I was lay down with my eyes shut while she did some relaxation and breathing techniques with me followed by a foot massage! Was very nice but felt a bit of a Plonker in front of a room full of people. Especially when my 'fear' just makes me a moody cow and Rick gets his ears chewed off the night/morning before. At the time of stabbing I'm a big brave girl!
Next I tucked into my lunch of gammon and wedges, not exactly the light lunch I thought I would be forcing down but while my steroid induced body wanted it i had to oblige! Was yummy and had ice cream to follow!
Finally for some company. Rick came and we had a walk to get a Starbucks ( on site ) and bumped into Bill Roach ( Ken Barlow from Corrie ). Luckily for rick I didn't demand a pic and embarrass him to much!! We had an hour sat in the conservatory and tiredness hit me like a brick, could have happily curled up and slept there for a bit but we came back so I could beat Rick at card games instead! We watched the sun set from my bed and then my time was up. In out busy lives that's classed as a full on proper date! Bonus!!
Tea time; sweet and sour chicken and trifle followed by a few hours slob on the bed with entertainment from mum and David . I walked them out and jumped straight back into bed for supper and now it's bed time!
It's before 11 and lights are off! So I'm off to bed. Wow just realised I've got the end of my days blog and not mentioned blood needles or cannulas, ( directly! ). My original cannula is still going strong even though it throbs at times! The phlebotomist went in my ACF which I had covered with Emla that was fine, and a nice nurse kindly used a butterfly in my hand tonight. I may be getting brave. Ok so I'm not getting brave but I can see an end...... Tomorrow afternoon and no one will stab me for 10 days how amazing is that!! Its the small things that make the difference
Nighty night xxxx
Pic is sunset from my bed today
Monday 14 January 2013
Day one of chemo all done
I'm sat awaiting my MRSA admission swabs at 23:00 ( despite being in hospital 14 hours?! ) then the lights may finally go out and I may actually sleep!
Today's been great, as well as I could have hoped for I guess!
I'm lay in bed not feeling too bad at all, I wonder if its the calm before the storm or whether I am actually superwoman?
After being admitted onto the haematology day unit I was allocated an actual bed ( apparently that's very VIP), right in the middle of the unit! My nurse today was super sweet and obviously good at her job and finally someone that's great at cannulating too! First time in, very gentle and all ready to go! Even needed some bloods and she was kind enough to do gently in my hand, perfect!
I'm not sure what I expected the chemo to look like but it was just pre drawn up in a syringe and slowly pushed in? My first part of the cocktail was bright red and the nurse informed me this was my super toxic one, doxyrubisin. The one that will make my hair fall out and give me the most side effects, on the other hand though its the bad boy that will do its magic in me too!
Before my chemo I has some piriton ( antihistamine ) so I then spent the day feeling I had had vodka cocktails for breakfast. So while happily watching the world go by I got all 4 of my chemo drugs in and felt ok.
The last of my poisons was rituximab ( prob spelt totally wrong ) which is a monoclonal antibody which will generate an immune response so my body can kill off the cancer. Because this can cause a big reaction it starts as a very slow infusion gathering speed till 500 mls has all gone! After about an hour I felt like someone had stuck a big splinter in my throat and my voice went all croaky so I had it turned off for 20 mins. After this it all went smoothly and after about 3 hours I was all done!
I think that I felt a bit weird by the end but couldn't decide!? So just forgot about trying to work it out!
I was promptly delivered to the ward and hastily tucked into my yummy tea of pasta bake and vegetables and manchester tart. Did feel slightly guilty as my 3 neighbours were trying really hard to force down half a cup of soup!
Rick stayed with me all day and then mum, David ( brother ) and Katy came to keep me company till I chucked them out to watch Coronation Street! Sat and munched some mint matchmakers and that's about it!!
I think I might feel a little dodgy now but maybe I just need to go sleep? My neck feels very full and i am sure it's as thick as Frankenstein's?
Well it's 23:15 now and the lights gone out! Finally. Still not had swabs but may just go sleep?
Nighty night!
Pics on way to hospital / waiting for lights out end of the day
First bit of Cocktail going in
Today's been great, as well as I could have hoped for I guess!
I'm lay in bed not feeling too bad at all, I wonder if its the calm before the storm or whether I am actually superwoman?
After being admitted onto the haematology day unit I was allocated an actual bed ( apparently that's very VIP), right in the middle of the unit! My nurse today was super sweet and obviously good at her job and finally someone that's great at cannulating too! First time in, very gentle and all ready to go! Even needed some bloods and she was kind enough to do gently in my hand, perfect!
I'm not sure what I expected the chemo to look like but it was just pre drawn up in a syringe and slowly pushed in? My first part of the cocktail was bright red and the nurse informed me this was my super toxic one, doxyrubisin. The one that will make my hair fall out and give me the most side effects, on the other hand though its the bad boy that will do its magic in me too!
Before my chemo I has some piriton ( antihistamine ) so I then spent the day feeling I had had vodka cocktails for breakfast. So while happily watching the world go by I got all 4 of my chemo drugs in and felt ok.
The last of my poisons was rituximab ( prob spelt totally wrong ) which is a monoclonal antibody which will generate an immune response so my body can kill off the cancer. Because this can cause a big reaction it starts as a very slow infusion gathering speed till 500 mls has all gone! After about an hour I felt like someone had stuck a big splinter in my throat and my voice went all croaky so I had it turned off for 20 mins. After this it all went smoothly and after about 3 hours I was all done!
I think that I felt a bit weird by the end but couldn't decide!? So just forgot about trying to work it out!
I was promptly delivered to the ward and hastily tucked into my yummy tea of pasta bake and vegetables and manchester tart. Did feel slightly guilty as my 3 neighbours were trying really hard to force down half a cup of soup!
Rick stayed with me all day and then mum, David ( brother ) and Katy came to keep me company till I chucked them out to watch Coronation Street! Sat and munched some mint matchmakers and that's about it!!
I think I might feel a little dodgy now but maybe I just need to go sleep? My neck feels very full and i am sure it's as thick as Frankenstein's?
Well it's 23:15 now and the lights gone out! Finally. Still not had swabs but may just go sleep?
Nighty night!
Pics on way to hospital / waiting for lights out end of the day
First bit of Cocktail going in
Sunday 13 January 2013
A little bit about me
When I started this blog, I though a few of my Facebook friends and family would be reading it, but after logging in yesterday and noticing that 2219 people had indeed read ( or briefly glanced at ) it. How bizarre?! I was thinking id get about 30?!
So this was a little post about me minus and cancer stuff for those people reading that haven't got a clue who I am!
I was born and have lived all my life in Manchester, England. I have a younger brother David and my parents ( although split ) still live local as do the majority of my family so I have always grown up with family close.
I sailed through school and then went straight onto college to do my A-Levels. From an early age I knew that I wanted to be a neonatal nurse ( just like my mum ) so I chose appropriate subjects at school and then got a place at Manchester university to do my children's nursing degree.
At Uni I met my now husband who was a nurse on the course too ( adult ). I lived with 3 girls on the course and Rick lived with Jimmy another nurse from the course, ( the guys were totally out numbered and so had to stick together! ) .
Over the first couple of years at uni we fell in love and Rick finally conceded and became my 'boyfriend'!
After Uni I got a job on a regional neonatal unit and Rick at the same hospital on a haematology unit: both the jobs we had wanted.
We were soon engaged and bought a house the following year, we filled it with 2 puppies and 4 kittens and were married the next year.
Soon after getting married, we had some fertility treatment and were lucky enough to get pregnant with our super, wonderful and special baby girl. We spent the next 9 months talking to my belly not realising that this was as quiet as life was ever going to be for ....... Well for ever!?
Madeline was born ( eventually, 13 days late after a 3 day induction ) and we both fell in love with her instantly. Life then became focussed around this little bundle of baby, juggling house work, and enjoying life.
When Madeline was 6 months old I went back to work. I started at a district general hospital on a neonatal unit there. I had had lots of placements there in my training and it had always seemed a lovely unit, plus my mum worked on the unit and had done for years, ( lots of years! ) so I knew a lot of people there. I'm still there now and still love my job.
I'm glad that my career choice I made as a child had turned out to be just what I had hoped it would. I could never imagine doing anything else. I love all aspects of my job. I have met some wonderful families and babies over the year and feel special to think I was part of their early days.
That's about me really! No big exciting stories but I wouldn't swop it! I'm not the sort that wishes I took a gap year or did some travelling etc. I just wanted to be a wife and a mummy and then go to work and try and make a difference. I achieved this nice and early and was enjoying the contentment of life. Of course some more money and more holidays would have been nice but life was good!
So this was a little post about me minus and cancer stuff for those people reading that haven't got a clue who I am!
I was born and have lived all my life in Manchester, England. I have a younger brother David and my parents ( although split ) still live local as do the majority of my family so I have always grown up with family close.
I sailed through school and then went straight onto college to do my A-Levels. From an early age I knew that I wanted to be a neonatal nurse ( just like my mum ) so I chose appropriate subjects at school and then got a place at Manchester university to do my children's nursing degree.
At Uni I met my now husband who was a nurse on the course too ( adult ). I lived with 3 girls on the course and Rick lived with Jimmy another nurse from the course, ( the guys were totally out numbered and so had to stick together! ) .
Over the first couple of years at uni we fell in love and Rick finally conceded and became my 'boyfriend'!
After Uni I got a job on a regional neonatal unit and Rick at the same hospital on a haematology unit: both the jobs we had wanted.
We were soon engaged and bought a house the following year, we filled it with 2 puppies and 4 kittens and were married the next year.
Soon after getting married, we had some fertility treatment and were lucky enough to get pregnant with our super, wonderful and special baby girl. We spent the next 9 months talking to my belly not realising that this was as quiet as life was ever going to be for ....... Well for ever!?
Madeline was born ( eventually, 13 days late after a 3 day induction ) and we both fell in love with her instantly. Life then became focussed around this little bundle of baby, juggling house work, and enjoying life.
When Madeline was 6 months old I went back to work. I started at a district general hospital on a neonatal unit there. I had had lots of placements there in my training and it had always seemed a lovely unit, plus my mum worked on the unit and had done for years, ( lots of years! ) so I knew a lot of people there. I'm still there now and still love my job.
I'm glad that my career choice I made as a child had turned out to be just what I had hoped it would. I could never imagine doing anything else. I love all aspects of my job. I have met some wonderful families and babies over the year and feel special to think I was part of their early days.
That's about me really! No big exciting stories but I wouldn't swop it! I'm not the sort that wishes I took a gap year or did some travelling etc. I just wanted to be a wife and a mummy and then go to work and try and make a difference. I achieved this nice and early and was enjoying the contentment of life. Of course some more money and more holidays would have been nice but life was good!
Saturday 12 January 2013
Pre chemo hair chop
I'm not sure how with so much time on my hands I've not managed to write more blogs? I'd planned to be all upto date before going into hospital on Monday for day one of chemo but somehow haven't had chance!!!
I'm now lay beside Madeline ( my 3 year old ) while she tries to turn her over stimulated brain off and sleep and thought this was an ideal opportunity to get in another quick one!
The first thing people think about as a side effect of chemo is going bald, ( well maybe they don't but I did ). This wasn't as scary a thought as I had initially worried it may have been. Being bald wasn't that bad surely?
Saying that I had never even had short hair, so it was going to be a super change! I didn't want to go from long hair to nothing so as I way of trying to gain some control over the situation I decided to have a pre chemo chop! I wasn't quite up for GI Jane quite yet, but short was bearable!
My lovely friend had got me a voucher for a cut and style so with no time like the present. I booked in for the day after and off I went! The lady that cut my hair was very sweet and I think she anticipated I would be more emotional than I was. She asked how I wanted to do this, tie it in a bobble and chop it off? collect it in an envelope? Turn away from the mirror? None of these options i had given any thought to, and didnt feel the need to make it into a ceremony.
Looking in the mirror as my hair was chopped off was ok, a little bizarre to think the bobble round my wrist would no longer be required for the next year or so! As more and more hair came off i couldn't help thinking I looked more and more like Dr Pixie McKenna ( from channel 4's embarrassing bodies ).
Soon i was off on my way, convinced everyone was looking at me thinking I looked a little odd!
I would never have chosen short hair and much prefer my old hair but hey it's done now and it's an opportunity to try it out and see what it looks like! Not as bad as it could be!
Il stroke and 'appreciate' it for another couple of weeks and then il have a nice shiny head!
Pics are 3 days before getting ill 2 weeks into being ill ( and a random pic from couple of years ago ) and my chopped hair
I'm now lay beside Madeline ( my 3 year old ) while she tries to turn her over stimulated brain off and sleep and thought this was an ideal opportunity to get in another quick one!
The first thing people think about as a side effect of chemo is going bald, ( well maybe they don't but I did ). This wasn't as scary a thought as I had initially worried it may have been. Being bald wasn't that bad surely?
Saying that I had never even had short hair, so it was going to be a super change! I didn't want to go from long hair to nothing so as I way of trying to gain some control over the situation I decided to have a pre chemo chop! I wasn't quite up for GI Jane quite yet, but short was bearable!
My lovely friend had got me a voucher for a cut and style so with no time like the present. I booked in for the day after and off I went! The lady that cut my hair was very sweet and I think she anticipated I would be more emotional than I was. She asked how I wanted to do this, tie it in a bobble and chop it off? collect it in an envelope? Turn away from the mirror? None of these options i had given any thought to, and didnt feel the need to make it into a ceremony.
Looking in the mirror as my hair was chopped off was ok, a little bizarre to think the bobble round my wrist would no longer be required for the next year or so! As more and more hair came off i couldn't help thinking I looked more and more like Dr Pixie McKenna ( from channel 4's embarrassing bodies ).
Soon i was off on my way, convinced everyone was looking at me thinking I looked a little odd!
I would never have chosen short hair and much prefer my old hair but hey it's done now and it's an opportunity to try it out and see what it looks like! Not as bad as it could be!
Il stroke and 'appreciate' it for another couple of weeks and then il have a nice shiny head!
Pics are 3 days before getting ill 2 weeks into being ill ( and a random pic from couple of years ago ) and my chopped hair
Tuesday 8 January 2013
Home from my CT scan with a belly full of gastrografin and 2 bruised arms
A quick update from my CT scan today;
I was offered the opportunity to join a research trial ( REMoDL-B ) into a new drug in lymphoma called Bortezomib. It wasn't a hard decision to make as the drug is used in other cancers such as myeloma and have been shown to work really well. Also I would have standard chemotherapy (RCHOP) either way with extra Bortezomib or not depending which group I was randomised too. It helps that Rick is running this trial from his hospital so knows a lot about it.
In order to get onto trials you need to jump through some hoops and today was hoop jumping day. I needed a CT scan, bloods, ECG and a physical examination so off I went this morning at 845.
Yes I know I'm repetitive but I wasn't looking forward to my canula! I had been very brave and calm about it, I'd even bought some rescue remedy and went in cool as a cucumber. I have 2 wacking great veins that no one could miss....... Surely??
After a heat pack and a random stroke from the nurse she went for a random tiny vein which proceeded to work for almost a minute before giving up. After a wiggle and a poke it was clarified it was knackered so out it came and we moved onto my other arm. Luckily that one was more successful but the damage had already psychologically been done. Day one, canula one and a miss.
That turned me into Mrs Mardy Bum ( secretly for mine and Ricks benefit only of course ). Luckily for the staff they don't have to be introduced to that side of me or I may get chucked out of the place!
Grumpy me was then sent for my CT, 'Nearly home time' I naively thought! I was met at CT by a chirpy radiographer clutching a litre of gastrografin ( contrast dye ) I needed to drink over the next hour.
Hang on a minute! What? Why!? I'm in a mood and you can't spring things like that at me. I don't like nasty surprises, I don't like nasty drinks!
Smiling nicely I took the blasted thing and went and hid in the corner of the a canteen forcing this nasty aniseed gloop down into my grumpy body that just wanted to go home! Remind me why I wanted to go on this trial again!!
Smiling nicely I scuttled back to scan and was loaded into a bed which fed me through a big plastic donut while speakers gave me instructions; 'breathe now', ' hold your breath', 'don't swallow'. Then I was injected with 100ml of more contrast dye. Luckily the radiographer had warned me that I was about to feel like I was wetting myself! That avoided any awkward patting myself down just to check I hadn't totally embarrassed myself!
The contrast flows down your arm and you feel a hot flush from your face to your bladder and then the feeling you have just wet yourself? Bizarre but ok! I was then sent on my way with my empty contrast pot and had to wait 15 mins to get my canula out. Finally it was out and I skipped off home, (Ok so I didn't skip and I was still Mrs Moody Bum but I escaped 4 hours after I got there for a 20 min scan?!)
Now in bed with my friends home made steak pie, vienetta and a new stack of books I'm feeling much better! I'm in a long sleeved top and refuse to acknowledge that I have 2 bruised arms and a blood blister, and that i need to repeat this process on Friday for my long awaited PET scan. This is a similar process but longer. I go in starved and get another canula to give me muscle relaxants and a sugar solution before spending a couple of hours in a dark room not talking before going through another scanner.
Can't wait!!!!
I was offered the opportunity to join a research trial ( REMoDL-B ) into a new drug in lymphoma called Bortezomib. It wasn't a hard decision to make as the drug is used in other cancers such as myeloma and have been shown to work really well. Also I would have standard chemotherapy (RCHOP) either way with extra Bortezomib or not depending which group I was randomised too. It helps that Rick is running this trial from his hospital so knows a lot about it.
In order to get onto trials you need to jump through some hoops and today was hoop jumping day. I needed a CT scan, bloods, ECG and a physical examination so off I went this morning at 845.
Yes I know I'm repetitive but I wasn't looking forward to my canula! I had been very brave and calm about it, I'd even bought some rescue remedy and went in cool as a cucumber. I have 2 wacking great veins that no one could miss....... Surely??
After a heat pack and a random stroke from the nurse she went for a random tiny vein which proceeded to work for almost a minute before giving up. After a wiggle and a poke it was clarified it was knackered so out it came and we moved onto my other arm. Luckily that one was more successful but the damage had already psychologically been done. Day one, canula one and a miss.
That turned me into Mrs Mardy Bum ( secretly for mine and Ricks benefit only of course ). Luckily for the staff they don't have to be introduced to that side of me or I may get chucked out of the place!
Grumpy me was then sent for my CT, 'Nearly home time' I naively thought! I was met at CT by a chirpy radiographer clutching a litre of gastrografin ( contrast dye ) I needed to drink over the next hour.
Hang on a minute! What? Why!? I'm in a mood and you can't spring things like that at me. I don't like nasty surprises, I don't like nasty drinks!
Smiling nicely I took the blasted thing and went and hid in the corner of the a canteen forcing this nasty aniseed gloop down into my grumpy body that just wanted to go home! Remind me why I wanted to go on this trial again!!
Smiling nicely I scuttled back to scan and was loaded into a bed which fed me through a big plastic donut while speakers gave me instructions; 'breathe now', ' hold your breath', 'don't swallow'. Then I was injected with 100ml of more contrast dye. Luckily the radiographer had warned me that I was about to feel like I was wetting myself! That avoided any awkward patting myself down just to check I hadn't totally embarrassed myself!
The contrast flows down your arm and you feel a hot flush from your face to your bladder and then the feeling you have just wet yourself? Bizarre but ok! I was then sent on my way with my empty contrast pot and had to wait 15 mins to get my canula out. Finally it was out and I skipped off home, (Ok so I didn't skip and I was still Mrs Moody Bum but I escaped 4 hours after I got there for a 20 min scan?!)
Now in bed with my friends home made steak pie, vienetta and a new stack of books I'm feeling much better! I'm in a long sleeved top and refuse to acknowledge that I have 2 bruised arms and a blood blister, and that i need to repeat this process on Friday for my long awaited PET scan. This is a similar process but longer. I go in starved and get another canula to give me muscle relaxants and a sugar solution before spending a couple of hours in a dark room not talking before going through another scanner.
Can't wait!!!!
Thursday 3 January 2013
How did I get so many friends?!
Today I'm surrounded by so many amazing people! So many lovely people being so kind and caring to me it's overwhelming! Since this diagnosis people have gone out of their way to make sure I feel loved and supported and have the sweetest and kindest words!
Who would have thought I could be so popular!
Popularity was never my strong point at high school! I somehow just seemed to stick out like a sore thumb? I wasn't sporty, I wasn't into the 'in' things, I wasn't blonde and skinny and for some reason I never seemed to attract people that wanted to be my friend! I attracted a lot of attention but usually this wasn't all that complementary!
Luckily as I moved up through high school I became less and less bothered and I found people became more tolerant of me , and although I didn't have people queuing up to be my friend, I just gate crashed my cousins friends, or anyone else that happened to look up for some conversation. Eventually by the time I left school people actually liked ( or at least tolerated me ).
Even now I don't quite get what was up with me?! No I wasn't going to change who I was to get friends, and no I didn't want to loose 5 inches off my legs to avoid 'she's a man' jibes I just wanted to be me!
Even at University I managed to rub some people up the wrong way and attract unhelpful comments and opinions of me. I'm sure people just had me misunderstood?! By this point I couldn't care less, I had surrounded myself with people that were willing to give me a chance and realised I was actually quite nice really!
That's how life tottered on, I had great friends but somehow always attracted some busy body that wanted to make me seem 'weird', 'too big for my boots' and just a general fool.?'
It's a shame you have to walk through life sometimes constantly trying to shake people off your ankles that are just trying to pull you down in an attempt to make themselves look better or so they can try and climb over you to get what they want. More fool them!
In life I've realised you have to just grin and bear stuff, allow people the opportunity to try and break you. It's their own energy they are wasting not yours, the only thing you have to do is hold your head up, be yourself regardless and then enjoy life while they waste their energy and only make themselves look bad.
Now I've come full circle and at the grand old age of 29 people like me!! In fact everyone likes me ( ok maybe an exaggeration but that's what I tell myself! ) and I have found myself wrapped in so many nice people that are genuinely my friends, enjoy my company, care for and love me its lovely!
It's such a nice place to be! If I needed anything; tea making, a lift to the hospital, someone to watch Madeline, a chocolate bar or a chat I would have people queuing up to help. How lucky am I!
Since being ill I have received so many lovely words from so many lovely people. Yesterday I received a lovely letter from a mum of a baby I cared for years ago who told me how wonderful I am ( she did honest! ). Being a bit if a hoarder I'm keeping all my kind words and then I can keep getting them out and reminding myself that you should be yourself and eventually it will all pay off! Also it doesn't hurt to be told repeatedly how wonderful you are.
I have the most wonderful husband and we made the most perfect daughter and she's half of me and I wouldn't change any of her, even my half! That's the bit that makes her unique and quirky. I have the loveliest circle of friends from all over the place.
So now surrounded contentedly by all my amazing friends and family I will put my feet up and lap up the love
Who would have thought I could be so popular!
Popularity was never my strong point at high school! I somehow just seemed to stick out like a sore thumb? I wasn't sporty, I wasn't into the 'in' things, I wasn't blonde and skinny and for some reason I never seemed to attract people that wanted to be my friend! I attracted a lot of attention but usually this wasn't all that complementary!
Luckily as I moved up through high school I became less and less bothered and I found people became more tolerant of me , and although I didn't have people queuing up to be my friend, I just gate crashed my cousins friends, or anyone else that happened to look up for some conversation. Eventually by the time I left school people actually liked ( or at least tolerated me ).
Even now I don't quite get what was up with me?! No I wasn't going to change who I was to get friends, and no I didn't want to loose 5 inches off my legs to avoid 'she's a man' jibes I just wanted to be me!
Even at University I managed to rub some people up the wrong way and attract unhelpful comments and opinions of me. I'm sure people just had me misunderstood?! By this point I couldn't care less, I had surrounded myself with people that were willing to give me a chance and realised I was actually quite nice really!
That's how life tottered on, I had great friends but somehow always attracted some busy body that wanted to make me seem 'weird', 'too big for my boots' and just a general fool.?'
It's a shame you have to walk through life sometimes constantly trying to shake people off your ankles that are just trying to pull you down in an attempt to make themselves look better or so they can try and climb over you to get what they want. More fool them!
In life I've realised you have to just grin and bear stuff, allow people the opportunity to try and break you. It's their own energy they are wasting not yours, the only thing you have to do is hold your head up, be yourself regardless and then enjoy life while they waste their energy and only make themselves look bad.
Now I've come full circle and at the grand old age of 29 people like me!! In fact everyone likes me ( ok maybe an exaggeration but that's what I tell myself! ) and I have found myself wrapped in so many nice people that are genuinely my friends, enjoy my company, care for and love me its lovely!
It's such a nice place to be! If I needed anything; tea making, a lift to the hospital, someone to watch Madeline, a chocolate bar or a chat I would have people queuing up to help. How lucky am I!
Since being ill I have received so many lovely words from so many lovely people. Yesterday I received a lovely letter from a mum of a baby I cared for years ago who told me how wonderful I am ( she did honest! ). Being a bit if a hoarder I'm keeping all my kind words and then I can keep getting them out and reminding myself that you should be yourself and eventually it will all pay off! Also it doesn't hurt to be told repeatedly how wonderful you are.
I have the most wonderful husband and we made the most perfect daughter and she's half of me and I wouldn't change any of her, even my half! That's the bit that makes her unique and quirky. I have the loveliest circle of friends from all over the place.
So now surrounded contentedly by all my amazing friends and family I will put my feet up and lap up the love
Contemplating my image?!
I went to the shop today as I felt I needed to compensate for loosing my hair and I suppose my normal physical "me". i tried to find things that some how made up for the fact I wouldn't look like "me" any more.
I thought it may be really hard but actually I happily went round buying over sized earrings, head bands, jackets and tops I wouldn't usually wear and I guess embraced he fact that I'm now 'changed' and 'different'. It didnt seem to matter that the normal me wouldn't ever wear these sorts of things?
Feeling super drained I only managed 1.5 shops and grabbed and ran, but was amazed when I got home and tried on all my new clothes and they all fit! Now that never happens!!!
I briefly tried to find clothes that would hide my scar but then the hem just rubbed on it or i had to raid the granny area! I guess people are just going to have to look at it as I'm not wearing turtle necks to avoid other people's discomfort! I don't really care, even in its red lumpy not quite healed state it's hardly going to give small children nightmares??
So now I have drawers filled with bright coloured scarfs, an array of earrings in all sizes and shapes and even 2 new wigs so I can really mix myself up! Quite liberating really and not only can I slap my 'face' on I can slap on all sorts of things to make myself ready to face the world with a smile and a new found confidence ( or at least that's the plan ).
I have never been one for drawing attention to myself before and my hair is usually scraped back, I forget my make up and try and sneak through the day hoping no one notices me! Not now!
Tomorrow is my hair chop stage one! Slightly nervous as there is no going back but I am going to do this at my speed. Not at a speed dictated to me by doctors and drugs as to when my cells die and hair begins to fall out, I will not be picking clumps of hair off my pillow I will be buzzing all my hair off long before that day!!
I thought it may be really hard but actually I happily went round buying over sized earrings, head bands, jackets and tops I wouldn't usually wear and I guess embraced he fact that I'm now 'changed' and 'different'. It didnt seem to matter that the normal me wouldn't ever wear these sorts of things?
Feeling super drained I only managed 1.5 shops and grabbed and ran, but was amazed when I got home and tried on all my new clothes and they all fit! Now that never happens!!!
I briefly tried to find clothes that would hide my scar but then the hem just rubbed on it or i had to raid the granny area! I guess people are just going to have to look at it as I'm not wearing turtle necks to avoid other people's discomfort! I don't really care, even in its red lumpy not quite healed state it's hardly going to give small children nightmares??
So now I have drawers filled with bright coloured scarfs, an array of earrings in all sizes and shapes and even 2 new wigs so I can really mix myself up! Quite liberating really and not only can I slap my 'face' on I can slap on all sorts of things to make myself ready to face the world with a smile and a new found confidence ( or at least that's the plan ).
I have never been one for drawing attention to myself before and my hair is usually scraped back, I forget my make up and try and sneak through the day hoping no one notices me! Not now!
Tomorrow is my hair chop stage one! Slightly nervous as there is no going back but I am going to do this at my speed. Not at a speed dictated to me by doctors and drugs as to when my cells die and hair begins to fall out, I will not be picking clumps of hair off my pillow I will be buzzing all my hair off long before that day!!
Wednesday 2 January 2013
Introducing my phobia!
Where do irrational phobias come from??
I can cope with, and handle most things that life throws at me with a head down and get on with it attitude....... Except blood sampling and Canulas!
Where does that fear come from? I have no idea!!
I had never had a Canula until I was induced with Madeline so isn't a childhood thing? Didnt even have blood taken that I remember?? So why the fea?!
I put it down to really sensitive veins, maybe I have a genetic malfunction meaning my veins are full of nerves and have the ability to ache and hurt!
If I could guarantee that the needle would go straight in with no digging around, and I could guarantee they wouldn't push the needle through my vein as they applied pressure with the cotton wool I might be able to cope better? The unpredictability kills me, will they hurt me will they not???
Over the years I've had loads of rubbish nurses digging in my arms and hands and I blame them for adding to my irrational fear!
Not only do I have to deal with the panic associated with the pre stab, the actual stab/dig, to top it off I'm left with a hole in my hand to look at for days/weeks :(
My last canula was 16 days ago and I can still see and feel 2 holes and a bruise and if I catch my hand it really bothers me. I currently have a huge scar from my operation..... Thats fine i can knock and catch that and it's fine but knock my hand and it makes me nauseous even now.
Ok that's my irrational phobia admitted to, the problem is I am now a haematology patient. This basically means that Everytime I go to hospital someone will pounce on me and pull me into the blood room and Sig in my veins. The thought makes my arms contract and physically ache and I can't even touch my ACF ( crease in arm where they typically take blood ) without feeling nauseous.
Luckily to the outside world I appear totally normal and stroll willingly into the blood room and smile nicely and make polite chit chat and the nurses would be non the wiser but as anyone who had to spend any time with me prior to that I'm a bit of a nightmare!
So while other more normal people out there are worrying about chemotherapy, radiotherapy, loss of hair, sickness, fatigue etc I'm just panicking someone is going to spring a blood test or a canula on me!
Unfortunately for me I need bloods thw day before chemo, canula for chemo, canula for 48 hours of fluids after my 1st chemo, canula for my scans and if I get a temperature at any time I go straight into hospital for Iv antibiotics and a canula. so I have all of those to mentally process and I know they will spring so many more at me!
I can have the cheats way out and get a tunnelled jugular central line put in ( only after 2 blood tests, 2 canulas, 1 chemo cycle done. This is because my lymph nodes in neck are blocking the way for now! ) and I am currently weighting up this possibility!
This morning I was a big brave girl and thought " no it's only a few needles " but after being in Christies for 4 hours today thinking every person that came within a metre of me was going to tell me I needed blood taken, maybe a line would be a good idea!
So there we are guys you now know I'm not super human I am a wimp really!!! Xxxxxxx
I can cope with, and handle most things that life throws at me with a head down and get on with it attitude....... Except blood sampling and Canulas!
Where does that fear come from? I have no idea!!
I had never had a Canula until I was induced with Madeline so isn't a childhood thing? Didnt even have blood taken that I remember?? So why the fea?!
I put it down to really sensitive veins, maybe I have a genetic malfunction meaning my veins are full of nerves and have the ability to ache and hurt!
If I could guarantee that the needle would go straight in with no digging around, and I could guarantee they wouldn't push the needle through my vein as they applied pressure with the cotton wool I might be able to cope better? The unpredictability kills me, will they hurt me will they not???
Over the years I've had loads of rubbish nurses digging in my arms and hands and I blame them for adding to my irrational fear!
Not only do I have to deal with the panic associated with the pre stab, the actual stab/dig, to top it off I'm left with a hole in my hand to look at for days/weeks :(
My last canula was 16 days ago and I can still see and feel 2 holes and a bruise and if I catch my hand it really bothers me. I currently have a huge scar from my operation..... Thats fine i can knock and catch that and it's fine but knock my hand and it makes me nauseous even now.
Ok that's my irrational phobia admitted to, the problem is I am now a haematology patient. This basically means that Everytime I go to hospital someone will pounce on me and pull me into the blood room and Sig in my veins. The thought makes my arms contract and physically ache and I can't even touch my ACF ( crease in arm where they typically take blood ) without feeling nauseous.
Luckily to the outside world I appear totally normal and stroll willingly into the blood room and smile nicely and make polite chit chat and the nurses would be non the wiser but as anyone who had to spend any time with me prior to that I'm a bit of a nightmare!
So while other more normal people out there are worrying about chemotherapy, radiotherapy, loss of hair, sickness, fatigue etc I'm just panicking someone is going to spring a blood test or a canula on me!
Unfortunately for me I need bloods thw day before chemo, canula for chemo, canula for 48 hours of fluids after my 1st chemo, canula for my scans and if I get a temperature at any time I go straight into hospital for Iv antibiotics and a canula. so I have all of those to mentally process and I know they will spring so many more at me!
I can have the cheats way out and get a tunnelled jugular central line put in ( only after 2 blood tests, 2 canulas, 1 chemo cycle done. This is because my lymph nodes in neck are blocking the way for now! ) and I am currently weighting up this possibility!
This morning I was a big brave girl and thought " no it's only a few needles " but after being in Christies for 4 hours today thinking every person that came within a metre of me was going to tell me I needed blood taken, maybe a line would be a good idea!
So there we are guys you now know I'm not super human I am a wimp really!!! Xxxxxxx
Bone marrow day!
Well although its not something I was looking forward too, it wasn't something I was dreading that much!
Luckily I was landed with a really gentle nurse who was a lymphoma specialist and is my new point of call for all my needs!
I opted for the no Canula related pain relief as the Canula would be worse than the bone marrow!! ( and may have finished me off! ) I opted for local anaesthetic and gas and air.
The local felt like a bee sting, well 3 bee stings really! Just as I thought I was numb she went deeper and deeper before tapping the needle on the bone to see if it was numb, weird tapping feeling?!
I naively though that would mean I was virtually numb and would just feel pressure. 4 sucks on the gas and air and I could feel the pressure building and in the strategically placed picture on the wall I could see the reflection of the nurses arm corkscrewing into my back......nice view!
Just as I was thinking " this is ok" she screwed through my nerves...... Ouch Ouch Ouch. After holding my breath and contorted my face at rick I was nearly there! I didn't anticipate that the whole of my right leg felt like it was being electrocuted that was prob worst bit. Then she screwed needle other way and took out some core! And it was all over and I could breathe again!
Was it better or worse than I expected? I'm not sure!!? I'm not sure i anticipated the intensive nerve pain that literally took my breath away but it was over relatively quickly so wasn't that bad really! Apparently because I'm young ( well in the lymphoma world! ) I have more nerves around there so I was actually well hard!
Hopefully there will be nothing lurking in it so it won't need repeating! If It does then I certainly won't be loosing any sleep about it!
Luckily I was landed with a really gentle nurse who was a lymphoma specialist and is my new point of call for all my needs!
I opted for the no Canula related pain relief as the Canula would be worse than the bone marrow!! ( and may have finished me off! ) I opted for local anaesthetic and gas and air.
The local felt like a bee sting, well 3 bee stings really! Just as I thought I was numb she went deeper and deeper before tapping the needle on the bone to see if it was numb, weird tapping feeling?!
I naively though that would mean I was virtually numb and would just feel pressure. 4 sucks on the gas and air and I could feel the pressure building and in the strategically placed picture on the wall I could see the reflection of the nurses arm corkscrewing into my back......nice view!
Just as I was thinking " this is ok" she screwed through my nerves...... Ouch Ouch Ouch. After holding my breath and contorted my face at rick I was nearly there! I didn't anticipate that the whole of my right leg felt like it was being electrocuted that was prob worst bit. Then she screwed needle other way and took out some core! And it was all over and I could breathe again!
Was it better or worse than I expected? I'm not sure!!? I'm not sure i anticipated the intensive nerve pain that literally took my breath away but it was over relatively quickly so wasn't that bad really! Apparently because I'm young ( well in the lymphoma world! ) I have more nerves around there so I was actually well hard!
Hopefully there will be nothing lurking in it so it won't need repeating! If It does then I certainly won't be loosing any sleep about it!
Tuesday 1 January 2013
Testing Testing 123.......... Well i think i have done it!
I have officially started a blog? Its not going to be the wittiest of blogs and im sure it will have hundreds of gramatical and spelling mistakes in as English is not my strong point! Well actually English i guess is, however writing it down comprehensively is not!
This isnt meant for the world to see just a way for me to moan and waffle about stuff without filling everyones facebook news feed!
To be continued.............
I have officially started a blog? Its not going to be the wittiest of blogs and im sure it will have hundreds of gramatical and spelling mistakes in as English is not my strong point! Well actually English i guess is, however writing it down comprehensively is not!
This isnt meant for the world to see just a way for me to moan and waffle about stuff without filling everyones facebook news feed!
To be continued.............
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