3.8.16
Ive just been for an hours dog walk! Get me. I started dog walking about 2 weeks ago and it seems that walking is an acceptable form of exercise for me. I get a bit puffy, but thats expected. The only problem is this........ i can't put socks on. I remember having arthriticky (i do love making these words up) joints after my first lot of chemo a couple of years ago. It went off eventually. I wish i had taken more notice of when it settled down a bit. Well its happened again. Hips being the worst affected joints. Im thinking of selling tickets to watch me putting my socks on, its quite entertaining, although the air gets a bit blue at times. Im trying to train my little dog Loki to become an 'enabling dog'. Ive got as far as training him to pick up the sock. He then runs off with it and i have to start 'potholing' under the table to retrieve it.
I saw Dr Jack a couple weeks ago. He thinks its ok me having all my issues considering how much he poisoned me. Nausea, retching, headaches and the difficulty in opening the mouth has become clear. Also arthritis.
Ok. I hear ya. Shut your mouth. Keep it shut. And don't open it, not even for food.
My appetite has returned, as have my taste buds. I haven't sampled Prosecco yet. Ive not had the calling.
I have dumped the soft toothbrush (needed when the mouth was sore) in favour of my electric one. Some days i feel rough, others not so bad. When i think back to day 10 when i was discharged from hospital..........i'm so much better.
The biggest but not most important problem.......the hair. Or lack of. Im as bald as an eagle. I have a thin covering of 2mm white hair. I have taken to eating a square of jelly a day, known to be good for hair and nails. This is the baldest I've ever been. The first time it just thinned. I had to shave it off cos it looked weird. And during the salvage chemo which started in february this year it thinned again. It had started to grow back, and quite thick, but the BEAM chemo cleaned me out completely.
I have been out a few times. Coffee here and there, but without the coffee. Usually black tea or hot chocolate, but even that isn't enjoyed at the mo. Cakes aren't, i repeat, aren't, on the agenda yet. Im not interested. Something seriously wrong there!
And so sad.......the weight hasn't dropped off me as i hoped it would. Ive lost some, but nowhere near enough, despite the small portions i'm having at meal times. And my tummy is so swollen. I presume from the mucositis (inflammation of the digestive tract).
The sun has been shining a fair bit. I don't like it! It makes me hot and sweaty. If i have any head gear on, my head turns into a water feature. I am not allowed to sit in the sun forever and ever and ever again! Although the shade is ok. Sun cream is advised, which also makes me feel clammy and uncomfortable. So although i watch all the TV programmes of house hunting in France, Spain and other mildly exotic places, it aint gonna happen! Leave me be in damp Dorset. And the wet weather doesnt affect me whilst i am bald. No bad hair day here.
Wednesday, 3 August 2016
Monday, 11 July 2016
11.7.16
Over 2 weeks since my last blog. You could quite rightly accuse me of being negligent.
So why not, i hear you shout!
Ive been busy. Out and about. Having a fab time. Coffee and cakes. Prosecco. Lovely walks along the beach........if only.
I have done nothing of note. My main mission in life at the mo is to recover from the treatment. Its even slower than i thought. Maybe I'm trying to run before i can walk, after all, it took me a good year to get over the last lot of chemo, and this recent stuff was a real humdinger.
I have attempted to go out. Ive been to tesco express, and the vets, twice, and the pharmacy. I must say how boring it is being home all day watching tv and playing on my laptop.
So what can i tell you?
Im day 34 today.
I received a lovely appointment from Sammie, the nurse specialist. I thought she was nice......now I'm not so sure. An appointment for a bone marrow biopsy!!! And on my birthday!!! Thats apparently day 100 +1. Its to check my bone marrow, and for statistics! Sod that!
I have spoken to Clare, the nice nurse specialist (i don't mean that Sammie!) this morning and she has talked through a few things with me. If i talk to Dr Jack he may let me off the biopsy. I think with my brand of charm, he may. But the silver lining is, if i do have it, i can have some Midazolam (a sedative) to knock me out. And i do love Midazolam. Its like being on holiday, laying on a sunbed, in the warmth with the waves lapping on the shore. It does mean a cannula, but thats nothing compared to a bone marrow biopsy whilst you're conscious.
Other than that, i asked her why i still have nausea, retching weekly (how flipping odd!), headaches, indigestion to die for, problems with opening my mouth, and other stuff, etc. She thinks I'm just taking a while to recover, its unusual to still be like this, but it has been known. I just need to settle down! Does anyone have a magic wand?
My worry is, all the fun things i have booked into my diary. Im hoping i will be able to enjoy them as they arrive on my social calendar. As long as i carry a bucket, tissues, meds, an oxygen tank (exaggeration used in excess there), a blow up bed, digestives (for anti sickness), a fireman (i think this is a necessity), ice cold water, and spaghetti hoops, i'll be fine.
Over 2 weeks since my last blog. You could quite rightly accuse me of being negligent.
So why not, i hear you shout!
Ive been busy. Out and about. Having a fab time. Coffee and cakes. Prosecco. Lovely walks along the beach........if only.
I have done nothing of note. My main mission in life at the mo is to recover from the treatment. Its even slower than i thought. Maybe I'm trying to run before i can walk, after all, it took me a good year to get over the last lot of chemo, and this recent stuff was a real humdinger.
I have attempted to go out. Ive been to tesco express, and the vets, twice, and the pharmacy. I must say how boring it is being home all day watching tv and playing on my laptop.
So what can i tell you?
Im day 34 today.
I received a lovely appointment from Sammie, the nurse specialist. I thought she was nice......now I'm not so sure. An appointment for a bone marrow biopsy!!! And on my birthday!!! Thats apparently day 100 +1. Its to check my bone marrow, and for statistics! Sod that!
I have spoken to Clare, the nice nurse specialist (i don't mean that Sammie!) this morning and she has talked through a few things with me. If i talk to Dr Jack he may let me off the biopsy. I think with my brand of charm, he may. But the silver lining is, if i do have it, i can have some Midazolam (a sedative) to knock me out. And i do love Midazolam. Its like being on holiday, laying on a sunbed, in the warmth with the waves lapping on the shore. It does mean a cannula, but thats nothing compared to a bone marrow biopsy whilst you're conscious.
Other than that, i asked her why i still have nausea, retching weekly (how flipping odd!), headaches, indigestion to die for, problems with opening my mouth, and other stuff, etc. She thinks I'm just taking a while to recover, its unusual to still be like this, but it has been known. I just need to settle down! Does anyone have a magic wand?
My worry is, all the fun things i have booked into my diary. Im hoping i will be able to enjoy them as they arrive on my social calendar. As long as i carry a bucket, tissues, meds, an oxygen tank (exaggeration used in excess there), a blow up bed, digestives (for anti sickness), a fireman (i think this is a necessity), ice cold water, and spaghetti hoops, i'll be fine.
Monday, 27 June 2016
24.6.16
My time at home has been filled with happiness but also symptoms that i thought had gone. Sadly they have returned. Its only normal. What did i expect after that awful week of chemo? Still onwards and upwards.
My lovely friends have rallied round. Ive had visitors galore. Gifts, mainly food, which is always nice.
Food has been a problem. My mouth doesnt open to its full capacity at the moment. I know that will shock some of you! And there is only certain things i can eat, and keep! Mostly soups. I do have a few portions of cottage pie in my freezer. That has hit the spot on 4 occasions so far, and i still have 4 more to look forward to. Im not too keen on sweet stuff. Although a rhubarb crumble has gone down a treat with some custard.
Drinking has been the biggest problem. I can't drink water. Absolutely can't do it. Tea and coffee have also left the building. Hot chocolate, half a cup at a push. And my recent liquid 'amuse bouche' is honey and lemon. I can't taste it as normal so I'm sure if anyone else tasted it they would probably suck their cheeks in at the sharpness of it.
It is all getting better slowly tho.
Well let me tell you about yesterday. All my troubles seemed so far away.....
Kickman line removal day.
I had a long wait until doctor Matt came to prep the area (anaesthetise it) ready for Dr Jack to come and pull my line. He normally pulls my leg!
Dr Fenella arrived and grabbed hold and pulled. And pulled. And pulled and pulled. But it was going nowhere. She warned me if a little bit breaks off it could go into my circulatory system and i would have to go to X-ray or ultrasound for them to find it, maybe from the femoral area. It can't stay in there.
She pulled again, and it snapped off.
She grabbed hold of the end (under the skin) so it couldn't be sucked in and Dr Jack was summoned urgently.
The cavalry.
NOW they anaesthetised me. Dr Matt had intended doing it but was told it wasn't needed!
Dr Jack tried to get hold of the end under the skin. It had shredded somewhat.
He decided to try the centre hoping to pull one end through and then the other end through. More anaesthetic.
It seemed my body had adhered itself all the way along the line from top to bottom so no amount of pulling was gonna shift it.
Blood spurted in my face. I was tugged at. More anaesthetic. Different cut through packs. Scalpels. Forceps (hanging on the part of my line so it didn't disappear). It was not nice. Slits along my chest. Sutures needed, for removal in 7 days. Extra anti biotics.
Then hurrah, the top part of the line came free after slicing up the sides. It wasn't too much longer before the bottom half came out.
And all the way through it Dr Jack entertained me with his smart ass remarks and humour. As usual, he was lovely, as was Matt and Fenella.
At one stage i remember commenting on my scars and Dr Jack replied, 'i like a woman with scars.' I absolutely roared with laughter which was dodgy cos i was trying to keep still.
So stitched up like a kipper i was able to escape.
All in all, a really stressful procedure was lightened by humour.
My time at home has been filled with happiness but also symptoms that i thought had gone. Sadly they have returned. Its only normal. What did i expect after that awful week of chemo? Still onwards and upwards.
My lovely friends have rallied round. Ive had visitors galore. Gifts, mainly food, which is always nice.
Food has been a problem. My mouth doesnt open to its full capacity at the moment. I know that will shock some of you! And there is only certain things i can eat, and keep! Mostly soups. I do have a few portions of cottage pie in my freezer. That has hit the spot on 4 occasions so far, and i still have 4 more to look forward to. Im not too keen on sweet stuff. Although a rhubarb crumble has gone down a treat with some custard.
Drinking has been the biggest problem. I can't drink water. Absolutely can't do it. Tea and coffee have also left the building. Hot chocolate, half a cup at a push. And my recent liquid 'amuse bouche' is honey and lemon. I can't taste it as normal so I'm sure if anyone else tasted it they would probably suck their cheeks in at the sharpness of it.
It is all getting better slowly tho.
Well let me tell you about yesterday. All my troubles seemed so far away.....
Kickman line removal day.
I had a long wait until doctor Matt came to prep the area (anaesthetise it) ready for Dr Jack to come and pull my line. He normally pulls my leg!
Dr Fenella arrived and grabbed hold and pulled. And pulled. And pulled and pulled. But it was going nowhere. She warned me if a little bit breaks off it could go into my circulatory system and i would have to go to X-ray or ultrasound for them to find it, maybe from the femoral area. It can't stay in there.
She pulled again, and it snapped off.
She grabbed hold of the end (under the skin) so it couldn't be sucked in and Dr Jack was summoned urgently.
The cavalry.
NOW they anaesthetised me. Dr Matt had intended doing it but was told it wasn't needed!
Dr Jack tried to get hold of the end under the skin. It had shredded somewhat.
He decided to try the centre hoping to pull one end through and then the other end through. More anaesthetic.
It seemed my body had adhered itself all the way along the line from top to bottom so no amount of pulling was gonna shift it.
Blood spurted in my face. I was tugged at. More anaesthetic. Different cut through packs. Scalpels. Forceps (hanging on the part of my line so it didn't disappear). It was not nice. Slits along my chest. Sutures needed, for removal in 7 days. Extra anti biotics.
Then hurrah, the top part of the line came free after slicing up the sides. It wasn't too much longer before the bottom half came out.
And all the way through it Dr Jack entertained me with his smart ass remarks and humour. As usual, he was lovely, as was Matt and Fenella.
At one stage i remember commenting on my scars and Dr Jack replied, 'i like a woman with scars.' I absolutely roared with laughter which was dodgy cos i was trying to keep still.
So stitched up like a kipper i was able to escape.
All in all, a really stressful procedure was lightened by humour.
Friday, 17 June 2016
18.6.16
Im home!
Don't worry, you havn't mislaid a blog somewhere. I was told a couple of days ago that i could go home if my bloods recovered. Thursday my neutrophils were 0.4 and friday they were 2.3. That is epic. So i was so excited about going home, making plans, talking to people to arrange things, that i had no time to blog. So its all in this one.
So it was a question of whipping through observations, blood tests, IV antibiotics, drugs, trying to eat and drink, trying not to go to the loo, etc etc etc. And i did all that, and now I'm home.
So Jane collected me about midday. She's a twinkle. Dropped everything on her day off to ferry me and all my stuff around. We, and when i say we, i mean she, got all my stuff in the car, i think i thought i was there for a month...... oh yes i was supposed to be there for a month!
Once in the car i had a cry. No reason, i just felt i should. It wasn't a crying cry, it was a laughing, excited, amazed cry and Jane kept laughing at me. It was elation! I was going home.
For so long now I've lived under the black cloud of a stem cell transplant, now i was going home. No better feeling in the world for me.
We got home and Jane unpacked. Jane made me some soup. Jane took stuff upstairs for me. Jane was a star. After a cuppa and a chat she left so i could have a well earned snooze. Doing nothing is very tiring.
Then Den arrived with a lovely bunch of flowers and a big smile.
She made me a cuppa and then we sat and gassed for a couple of hours. It was lovely. Then she left me for another snooze again.
Then Sam arrived home with the shopping. We sat and gassed for a bit and then it was time for bed.
My own bed.
Spider removed from hanging from the ceiling at the end of the bed, lights off, pillows arranged.....and sleep.
Night terror!
How rude. Ive not had one of them since before i went in for my treatment. Half an hour after falling asleep, as usual. They're very manageable now tho, not so much a night terror as a night irritation these days.
But nothing can dampen my spirits at the moment.
So I've woken this morning after a lovely long sleep, no interruptions. Ive been downstairs and made a cuppa tea, sorted my meds, washing up (i forgot the tap was running and it overflowed!), put my washing on, folded up Sams washing, and back in bed with my tea and a bowl of cornflakes. I forgot i wasn't 'normal'. The cornflakes didn't work, but the tea did.
And how did i manage to do the things i did downstairs? Im supposed to be helpless, weak and feeble, needing lots of rest. Otherwise i'll just crash and sleepzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Im home!
Don't worry, you havn't mislaid a blog somewhere. I was told a couple of days ago that i could go home if my bloods recovered. Thursday my neutrophils were 0.4 and friday they were 2.3. That is epic. So i was so excited about going home, making plans, talking to people to arrange things, that i had no time to blog. So its all in this one.
So it was a question of whipping through observations, blood tests, IV antibiotics, drugs, trying to eat and drink, trying not to go to the loo, etc etc etc. And i did all that, and now I'm home.
So Jane collected me about midday. She's a twinkle. Dropped everything on her day off to ferry me and all my stuff around. We, and when i say we, i mean she, got all my stuff in the car, i think i thought i was there for a month...... oh yes i was supposed to be there for a month!
Once in the car i had a cry. No reason, i just felt i should. It wasn't a crying cry, it was a laughing, excited, amazed cry and Jane kept laughing at me. It was elation! I was going home.
For so long now I've lived under the black cloud of a stem cell transplant, now i was going home. No better feeling in the world for me.
We got home and Jane unpacked. Jane made me some soup. Jane took stuff upstairs for me. Jane was a star. After a cuppa and a chat she left so i could have a well earned snooze. Doing nothing is very tiring.
Then Den arrived with a lovely bunch of flowers and a big smile.
She made me a cuppa and then we sat and gassed for a couple of hours. It was lovely. Then she left me for another snooze again.
Then Sam arrived home with the shopping. We sat and gassed for a bit and then it was time for bed.
My own bed.
Spider removed from hanging from the ceiling at the end of the bed, lights off, pillows arranged.....and sleep.
Night terror!
How rude. Ive not had one of them since before i went in for my treatment. Half an hour after falling asleep, as usual. They're very manageable now tho, not so much a night terror as a night irritation these days.
But nothing can dampen my spirits at the moment.
So I've woken this morning after a lovely long sleep, no interruptions. Ive been downstairs and made a cuppa tea, sorted my meds, washing up (i forgot the tap was running and it overflowed!), put my washing on, folded up Sams washing, and back in bed with my tea and a bowl of cornflakes. I forgot i wasn't 'normal'. The cornflakes didn't work, but the tea did.
And how did i manage to do the things i did downstairs? Im supposed to be helpless, weak and feeble, needing lots of rest. Otherwise i'll just crash and sleepzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Thursday, 16 June 2016
13.6.16
Ive not been up to blogging for a few days so now i have the task of 'catch up'.
Ive felt flipping rough. I never knew being neutropenic was so bad. Let me try and list a few symptoms.
My mouth is hideous. Mucositis to the nth degree. A white and brown tongue. I can barely open my mouth its so tender. Theres a constant awful taste which makes me feel nauseous. And theres an abundance of thick saliva - sorry if you're eating your brekky!
My oesophagus. Also severely mucositis-ed. If i swallow it feels like a bolder is blocking the passage. Needless to say i am not eating or drinking. I have attempted a few spaghetti hoops and they are able to slip down, unlike water, which causes no end of distress for me.
My tummy, also mucositis, is causing its own problems. I won't go into details.
I have fungal areas all over. Itchy, prickly areas.
My hands are so shaky and I'm so weak. When i go for a shower each morning I'm shattered afterwards, and just lay on the bed for the rest of the day.
My head feels like its been kicked in.
Anxiety. I have nothing to think about but my health so every thing done to me is hyper. I worry about air bubbles in the giving set (you need 16mls of air for it to kill! Don't know who they tested that on!). I worry every time i have a drip. I watch it drip and it makes me nauseous. I feel nauseous when i say the name of the chemo drugs I've had! I worry when they inject a drug into my hickman. I feel i will react to everything. The saline can be a little cold and that makes me cringe. When they take blood. When they give me jabs in the tummy. When they give me my tabs. When i lay down, when i get up again. This is all psychological. Strangely i no longer have night terrors! I suppose theres only so much stress/anxiety a body can have.
Tablets. I have buckets full, slightly exaggerated, but there might as well be buckets full for all the trouble they cause me. How do you swallow a tablet, and some are big buggers, when you can't swallow and you can't drink.
Nausea. Ive had constant mild nausea, which peaks on a few occasions into 'I'm gonna throw up' mode. This was the bit i was dreading, but i seem to have mastered it. I don't bother with the anti sickness tabs cos they have an effect on the rest of my body. Some make me shake and shiver, but make me drowsy. Another makes me so drowsy i can't keep my eyes open. And i still vomit. So whats the point of taking them. Ive always been one to take as little medication as i can. So it seems twice a day, usually when i try and rinse my mouth out, i retch and retch to the point my tummy muscles have braided themselves.
Observations every 4 hours. These are the latest readings. Pulse 120, BP 70/48, Temp 37.4. O2 normal!
When the pulse is up they're not happy with me. When the BP is down they're not happy with me, and they take it again and again. 'Try another machine', 'Try another arm'. And its always low.
'Drink more they say'. 'I can't cos i'll be sick'.
So then they start an intravenous infusion for a few hours to top up my fluids.
When my temp is up.....well thats a different story.
This means i have an infection. Not a good place to be when you have no neutrophils at all to fight it off. All hands on deck. Blood cultures taken. Loads of blood from each lumen of my hickman and also from a vein in my arm. All in the off chance they grow something and they can find out where the infections is. Normally a 50/50 chance they find that. Strong IV antibiotics started and every 6 hours. These have a wonderful effect on a body!!!! Lets just say i get plenty of exercise!
And because I'm in isolation i have to ask for everything that i need. I hate that and feel so guilty. They're all so busy, and so many times it gets forgotten and then asking again i feel worse. Luckily they are all lovely here. I was lucky to be put on the best ward.
Transfusion after transfusion. £200 a bag, and thats not including the giving sets and flushes etc. Ive had 5 now!
And now........my hair is starting to go again! Luckily its only about a centimetre long. Its gonna get chilly.
And the thing that makes me smile is seeing Dr Jack. He always reassures me. He tells me I'm doing well, but with a bit of flirting, teasing and humour. He told me today I'm made of steel girders! I think that means I'm doing well.
Ive not been up to blogging for a few days so now i have the task of 'catch up'.
Ive felt flipping rough. I never knew being neutropenic was so bad. Let me try and list a few symptoms.
My mouth is hideous. Mucositis to the nth degree. A white and brown tongue. I can barely open my mouth its so tender. Theres a constant awful taste which makes me feel nauseous. And theres an abundance of thick saliva - sorry if you're eating your brekky!
My oesophagus. Also severely mucositis-ed. If i swallow it feels like a bolder is blocking the passage. Needless to say i am not eating or drinking. I have attempted a few spaghetti hoops and they are able to slip down, unlike water, which causes no end of distress for me.
My tummy, also mucositis, is causing its own problems. I won't go into details.
I have fungal areas all over. Itchy, prickly areas.
My hands are so shaky and I'm so weak. When i go for a shower each morning I'm shattered afterwards, and just lay on the bed for the rest of the day.
My head feels like its been kicked in.
Anxiety. I have nothing to think about but my health so every thing done to me is hyper. I worry about air bubbles in the giving set (you need 16mls of air for it to kill! Don't know who they tested that on!). I worry every time i have a drip. I watch it drip and it makes me nauseous. I feel nauseous when i say the name of the chemo drugs I've had! I worry when they inject a drug into my hickman. I feel i will react to everything. The saline can be a little cold and that makes me cringe. When they take blood. When they give me jabs in the tummy. When they give me my tabs. When i lay down, when i get up again. This is all psychological. Strangely i no longer have night terrors! I suppose theres only so much stress/anxiety a body can have.
Tablets. I have buckets full, slightly exaggerated, but there might as well be buckets full for all the trouble they cause me. How do you swallow a tablet, and some are big buggers, when you can't swallow and you can't drink.
Nausea. Ive had constant mild nausea, which peaks on a few occasions into 'I'm gonna throw up' mode. This was the bit i was dreading, but i seem to have mastered it. I don't bother with the anti sickness tabs cos they have an effect on the rest of my body. Some make me shake and shiver, but make me drowsy. Another makes me so drowsy i can't keep my eyes open. And i still vomit. So whats the point of taking them. Ive always been one to take as little medication as i can. So it seems twice a day, usually when i try and rinse my mouth out, i retch and retch to the point my tummy muscles have braided themselves.
Observations every 4 hours. These are the latest readings. Pulse 120, BP 70/48, Temp 37.4. O2 normal!
When the pulse is up they're not happy with me. When the BP is down they're not happy with me, and they take it again and again. 'Try another machine', 'Try another arm'. And its always low.
'Drink more they say'. 'I can't cos i'll be sick'.
So then they start an intravenous infusion for a few hours to top up my fluids.
When my temp is up.....well thats a different story.
This means i have an infection. Not a good place to be when you have no neutrophils at all to fight it off. All hands on deck. Blood cultures taken. Loads of blood from each lumen of my hickman and also from a vein in my arm. All in the off chance they grow something and they can find out where the infections is. Normally a 50/50 chance they find that. Strong IV antibiotics started and every 6 hours. These have a wonderful effect on a body!!!! Lets just say i get plenty of exercise!
And because I'm in isolation i have to ask for everything that i need. I hate that and feel so guilty. They're all so busy, and so many times it gets forgotten and then asking again i feel worse. Luckily they are all lovely here. I was lucky to be put on the best ward.
Transfusion after transfusion. £200 a bag, and thats not including the giving sets and flushes etc. Ive had 5 now!
And now........my hair is starting to go again! Luckily its only about a centimetre long. Its gonna get chilly.
And the thing that makes me smile is seeing Dr Jack. He always reassures me. He tells me I'm doing well, but with a bit of flirting, teasing and humour. He told me today I'm made of steel girders! I think that means I'm doing well.
Monday, 13 June 2016
9.6.16
Today i received the news I've been waiting for. Im neutropenic. That means i have no neutrophils, nothing to fight off any infections. This is the time i will start to feel rough but its the means to an end. I am now waiting for my bloods to recover so i can go home! That won't be in the next week unfortunately. This is also the time i am put in isolation. No mixing with germs for me thank you very much. Apparently it is inevitable i will get an infection and they have to act quickly to get it under control. I have my wee tested every day, bloods daily, my temp, pulse, BP and O2 saturation rate every 4 hours in the hope they catch anything sooner rather than later. So this doesnt really sound like good news, but it is. It means they've achieved what they set out to do, kill my bone marrow, in the hope of killing off any cancer in my body. The other good thing.... my platelets have dropped so much i don't have to have the heparin jabs (used to thin the bloods so as not to form clots) anymore. I flipping hate them jabs. They are painful for such a tiny needle and they turn my tummy into a colour swatch of blues, purples and greens.
However....
Maddy, one of the nurses, has just come into 'stalag 13' and informed me I've been written up for GCSF jabs!
Do you remember these from past blogs of mine? The ones i had 3 of every night to count my stem cells and then again before the harvest. Luckily its only 1 a day, and hopefully it won't be for too long if my bloods start to recover, and that jab should help with that, which should get me home quicker hopefully.
Theres a lot of use of the word hopefully here today!
Ive also been given some Nystatin Suspension to swirl round my mouth and swallow. It smells of almonds, which i love, but cos I'm Mrs Queasy from Queasyville at the mo, I'm a bit wary of trying it.
My mouth is a problem but I'm sure you've heard that before. Its that old devil called mucositis. Inflammation of the mucous membrane from the mouth down to the derriere. Causes no end of trouble. Pain, difficulty in swallowing, indigestion (big problem), nausea and of course the old deli belly.
Anyway, lets see what happens next.
Today i received the news I've been waiting for. Im neutropenic. That means i have no neutrophils, nothing to fight off any infections. This is the time i will start to feel rough but its the means to an end. I am now waiting for my bloods to recover so i can go home! That won't be in the next week unfortunately. This is also the time i am put in isolation. No mixing with germs for me thank you very much. Apparently it is inevitable i will get an infection and they have to act quickly to get it under control. I have my wee tested every day, bloods daily, my temp, pulse, BP and O2 saturation rate every 4 hours in the hope they catch anything sooner rather than later. So this doesnt really sound like good news, but it is. It means they've achieved what they set out to do, kill my bone marrow, in the hope of killing off any cancer in my body. The other good thing.... my platelets have dropped so much i don't have to have the heparin jabs (used to thin the bloods so as not to form clots) anymore. I flipping hate them jabs. They are painful for such a tiny needle and they turn my tummy into a colour swatch of blues, purples and greens.
However....
Maddy, one of the nurses, has just come into 'stalag 13' and informed me I've been written up for GCSF jabs!
Do you remember these from past blogs of mine? The ones i had 3 of every night to count my stem cells and then again before the harvest. Luckily its only 1 a day, and hopefully it won't be for too long if my bloods start to recover, and that jab should help with that, which should get me home quicker hopefully.
Theres a lot of use of the word hopefully here today!
Ive also been given some Nystatin Suspension to swirl round my mouth and swallow. It smells of almonds, which i love, but cos I'm Mrs Queasy from Queasyville at the mo, I'm a bit wary of trying it.
My mouth is a problem but I'm sure you've heard that before. Its that old devil called mucositis. Inflammation of the mucous membrane from the mouth down to the derriere. Causes no end of trouble. Pain, difficulty in swallowing, indigestion (big problem), nausea and of course the old deli belly.
Anyway, lets see what happens next.
Friday, 10 June 2016
7.6.15
Happy re-birthday to me.
Todays the day. Technically its not my re-birthday yet as I've not received my little life savers yet, but they are in da house!
Lets go back to this morning. I have spent all morning trying to catch up on missed sleep. It makes me very crotchety if i don't get my sleep.
I would like to thank the bright spark who ordered in metal pedal bins. All I've heard all morning is 'bang, bang, bang'. People knocking on the door. Trolleys up and down the corridor which i know can't be helped. But those bins.........
So im in stroppy ish mood. My mind wandered towards food. What delicacy have i ordered today? A light bulb moment. As I've been disconnected from the drip until my cells are ready, i decided to take a visit to Costa. I may be neutropenic soon and i won't be able to leave my room for 3 weeks.
So off i trot, huffing and puffing all the way. Did i say, I'm very very anaemic. My Hb is 81 and it should be 120 ish. Thats why i was so puffy, as well as the chemo. I stood in front of the sandwiches trying to find the sausage and balsamic onion toastie. Took me a while but there it was. I was elated. Took it to the counter for toasting. £3.90, but i don't care. I throw caution to the wind when skipping hospital food.
And then there was the lovely Linzi who also recognised my head from behind (Dr Jack said that to me when i had an appointment with him 2 weeks ago!). She was armed with pineapple for the benefit of my poorly mouth. Not too bad at the mo, hoping the darned ice pops did the trick.
So here is a pic of my wonderful lunch.
And yes, it did cause happiness. And the fingers of pineapple did too.
So here i sit feeling satisfied, knowing my cells are ready and waiting. Not sure how long it will take, how many bags i will get, how it will affect me, but its another step forward.
So here goes.
And this is what happens when the lid is removed.
Paul and Sammie doing the admin.
The cells are placed in a boiler to defrost.
Happy re-birthday to me.
Todays the day. Technically its not my re-birthday yet as I've not received my little life savers yet, but they are in da house!
Lets go back to this morning. I have spent all morning trying to catch up on missed sleep. It makes me very crotchety if i don't get my sleep.
I would like to thank the bright spark who ordered in metal pedal bins. All I've heard all morning is 'bang, bang, bang'. People knocking on the door. Trolleys up and down the corridor which i know can't be helped. But those bins.........
So im in stroppy ish mood. My mind wandered towards food. What delicacy have i ordered today? A light bulb moment. As I've been disconnected from the drip until my cells are ready, i decided to take a visit to Costa. I may be neutropenic soon and i won't be able to leave my room for 3 weeks.
So off i trot, huffing and puffing all the way. Did i say, I'm very very anaemic. My Hb is 81 and it should be 120 ish. Thats why i was so puffy, as well as the chemo. I stood in front of the sandwiches trying to find the sausage and balsamic onion toastie. Took me a while but there it was. I was elated. Took it to the counter for toasting. £3.90, but i don't care. I throw caution to the wind when skipping hospital food.
And then there was the lovely Linzi who also recognised my head from behind (Dr Jack said that to me when i had an appointment with him 2 weeks ago!). She was armed with pineapple for the benefit of my poorly mouth. Not too bad at the mo, hoping the darned ice pops did the trick.
So here is a pic of my wonderful lunch.
And yes, it did cause happiness. And the fingers of pineapple did too.
So here i sit feeling satisfied, knowing my cells are ready and waiting. Not sure how long it will take, how many bags i will get, how it will affect me, but its another step forward.
So here goes.
So this is the container used to transport the cells, full of dry ice.
The bag of cells are frozen solid and have to be held with special gloves.
And here they are. They have to be used within 15 minutes or they turn toxic. The amount of cells needed is 200000000 (200 million). If you recall, i was superwoman and made absolutely loads of the beggars. In this bag alone there is 450000000 (450 million), and i have 2 more bags frozen with the same amount. I believe i signed a form to say they could be used for research if theres any left that i don't need. I think i should reimbursed for all my efforts!
So thats me done. Ive been grafted. Now time for the cells to do their thing and make me better again. The sooner the better!
Subscribe to:
Posts (Atom)