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.
Monday 27 June 2016
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!
Tuesday 7 June 2016
6.6.16
Done it!!!! Im so happy i could do a dance, but it would make me too dizzy!
Ive finished chemo.
I started with a diuretic (to make me wee loads to flush the drug out!), hydrocortisone which helps with nausea, recovery and other things but i can't think what at the mo, and anti emetic, also for nausea. All through my Kickman, so no needles.
I did a little twerking during the IV hydrocortisone. It gives you a sensation of prickly ants running round your undergarments! Really, it does. So i twerked, much to Paul, the charge nurses distress!
Ice pops. I had 10 of the little lovers.
Done it!!!! Im so happy i could do a dance, but it would make me too dizzy!
Ive finished chemo.
I started with a diuretic (to make me wee loads to flush the drug out!), hydrocortisone which helps with nausea, recovery and other things but i can't think what at the mo, and anti emetic, also for nausea. All through my Kickman, so no needles.
I did a little twerking during the IV hydrocortisone. It gives you a sensation of prickly ants running round your undergarments! Really, it does. So i twerked, much to Paul, the charge nurses distress!
Ice pops. I had 10 of the little lovers.
And heres me enjoying my favourite, a red one.
I flipping hate them now.
And then as i lay there recovering about 3 hours later, i see someone in the corridor that i thought i recognised. I managed to get out of bed and walk the corridor to find a lady who used to teach me belly dancing. Now no laughing, i know i have a belly to die for at the mo, but i was a fair bit trimmer in those days. Her hubby also has HL and he's relapsed too. We've had the same treatment and he has his SCT the end of this month.
It was so lovely to see her, and him. But what a blast from the past. She hasn't changed a bit, I'm sure she's not saying the same thing about me!
Sadly my dancing mood didn't stay for too long. The steroids stopped me sleeping. I was up from 12mn till 2am chatting with the nurses on duty. Even then i couldn't sleep for at least an hour. I spent that time thinking of what I'm gonna do when I'm let out of hospital and I've recovered. The world will be my oyster. The only trouble is, I've forgotten what i decided.
Monday 6 June 2016
4.6.16
Day -3. My son Chris's 30th birthday and I'm not there to share it with him. This could be the first birthday I've not been with him. Feel like i have a limb missing! His reply would be, 'its not brain damage though, is it?'
I look forward to the time i can celebrate with him. It may not be his actual birthday, but it will be special to me especially cos he says he's taking me on a spa day with Chloe at Centre Parcs Aqua Sana.
Other than that, Sam visited me and brought me a quarter pounder meal from McD's. Then Linzi arrived bearing gifts, 3 x scratch cards and some little candles in china animals, so sweet.
After they departed i went for a wander upstairs on the ground floor and i spied a Costas. I dashed (whatever!) back to my room to get my purse and headed back there to see if there was something nice to eat for tea. When i got back to Costas i was informed it wasn't open till monday! Bummer.
Back to the ward and dinner was served. Sweet and sour veggies with rice. Oh good golly Miss Molly, it was amazing, but i was still stuffed from the burger! Tomorrow is another day.
I was lucky enough to be pointed in the direction of the veggie menu by Glenn on the ward. What a fab idea. The food is so much better, although no meat obviously.
Day -2. Woke up feeling tired and jaded, and itchy. Im wondering if Beryl has something contagious as she's been complaining of an itch for days. She's been complaining of a few other things too. Sunday morning is special when you're woken up by a few bowel sounds! A treat for the ears and the nose! Oh god, move me into my single room quickly!
I am now covered all over in a red spotty rash, very becoming. At least if i get bored i can do a dot to dot.
On the plus side, i enjoyed a vegetable curry and rice, and the 'small' portion was enough for me and my visitor! Im sticking with the veggie menu from now on. Result!
So my penultimate chemo tonight, and mango flan tomorrow. Dr Jack assures me its nowhere near as bad as the first day! But then he also told me i have scabies! He's such a card!
Sadly the ward have just run out of hot chocolate......thank goodness Costa opens tomorrow!
In my excitement, i have fashioned some slippers out of bed pans. A little uncomfortable, but beggars can't be choosers. I wonder what the dress code is in Costa's. Is paper mache foot attire acceptable?
Day -1. Still itching like mad this morning. HCA has arrived with her bucket load of perfume on which normally i hate, it makes me feel sick, but today she has come in mighty handy. Feral Beryl has 'performed' after 6 days. Wafting the HCAs perfumed body round our bedroom has cleared the aroma! I must say Beryl is very sweet. She entertains me during the day with her funny little quips. But this side of her is unacceptable!
Anyway, fluids to be erected at 10 for 'Mango Flan' at 11. Any of you that tune in regularly to my blog will know mango flan is the final chemo drug, Melphalan. Ice pops starting at 10.40. Luckily its a sunny day to enjoy ice pops. I am, however, feeling slightly anxious.
My mouth also is starting to 'go'. Its feeling a bit numb and the mucous membrane feels thick, as if its about to drop off. Oh joy! But every second is a second nearer to going home.......and repeat.
Day -3. My son Chris's 30th birthday and I'm not there to share it with him. This could be the first birthday I've not been with him. Feel like i have a limb missing! His reply would be, 'its not brain damage though, is it?'
I look forward to the time i can celebrate with him. It may not be his actual birthday, but it will be special to me especially cos he says he's taking me on a spa day with Chloe at Centre Parcs Aqua Sana.
Other than that, Sam visited me and brought me a quarter pounder meal from McD's. Then Linzi arrived bearing gifts, 3 x scratch cards and some little candles in china animals, so sweet.
After they departed i went for a wander upstairs on the ground floor and i spied a Costas. I dashed (whatever!) back to my room to get my purse and headed back there to see if there was something nice to eat for tea. When i got back to Costas i was informed it wasn't open till monday! Bummer.
Back to the ward and dinner was served. Sweet and sour veggies with rice. Oh good golly Miss Molly, it was amazing, but i was still stuffed from the burger! Tomorrow is another day.
I was lucky enough to be pointed in the direction of the veggie menu by Glenn on the ward. What a fab idea. The food is so much better, although no meat obviously.
Day -2. Woke up feeling tired and jaded, and itchy. Im wondering if Beryl has something contagious as she's been complaining of an itch for days. She's been complaining of a few other things too. Sunday morning is special when you're woken up by a few bowel sounds! A treat for the ears and the nose! Oh god, move me into my single room quickly!
I am now covered all over in a red spotty rash, very becoming. At least if i get bored i can do a dot to dot.
On the plus side, i enjoyed a vegetable curry and rice, and the 'small' portion was enough for me and my visitor! Im sticking with the veggie menu from now on. Result!
So my penultimate chemo tonight, and mango flan tomorrow. Dr Jack assures me its nowhere near as bad as the first day! But then he also told me i have scabies! He's such a card!
Sadly the ward have just run out of hot chocolate......thank goodness Costa opens tomorrow!
In my excitement, i have fashioned some slippers out of bed pans. A little uncomfortable, but beggars can't be choosers. I wonder what the dress code is in Costa's. Is paper mache foot attire acceptable?
Day -1. Still itching like mad this morning. HCA has arrived with her bucket load of perfume on which normally i hate, it makes me feel sick, but today she has come in mighty handy. Feral Beryl has 'performed' after 6 days. Wafting the HCAs perfumed body round our bedroom has cleared the aroma! I must say Beryl is very sweet. She entertains me during the day with her funny little quips. But this side of her is unacceptable!
Anyway, fluids to be erected at 10 for 'Mango Flan' at 11. Any of you that tune in regularly to my blog will know mango flan is the final chemo drug, Melphalan. Ice pops starting at 10.40. Luckily its a sunny day to enjoy ice pops. I am, however, feeling slightly anxious.
My mouth also is starting to 'go'. Its feeling a bit numb and the mucous membrane feels thick, as if its about to drop off. Oh joy! But every second is a second nearer to going home.......and repeat.
Friday 3 June 2016
1.6.16
Its June already, and possibly the most challenging month of the year for me. I am waiting for a phone call to tell me what time to be in hospital to start my last (hopefully) cycle of chemo. The worst cycle I've ever had. I wonder how i'll cope with it? Will i breeze through it? Or will i struggle this time? Time will tell. I'll let you know how it goes. Now I'm gonna enjoy a decaf coffee and some scrambled eggs. Catch you later.
Its not a good start! Ive just put all my tabs in my little pink dosset box only to tip them over and mix them all up. Im guessing which ones are which, fingers crossed! Then i got back upstairs with my coffee only to realise id left my hot water bottle downstairs (feel a bit chilly today, maybe anxiety induced?), and now my laptop is about to die and my charger is downstairs! They say things happen in threes!
Just to explain, instead of day 1, day 2, etc, the days are -6, -5, heading for the transplant that will be Day 0. Forewarned is forearmed!
Day -6. Well I've arrived! Ive been put in a room with a dear little lady with dementia. She's constantly laughing and chatting with herself. She keeps asking where her biscuit has gone. And now her ear seems to have dropped off and she can't find it, and nobody seems to be doing anything to help! She's just shouted, 'oh shoot'. She's a dear little thing but i would rather be somewhere with a little bit of peace and quiet. Hoping to be moved to another room later.
Not seen anyone yet except for one HCA who came in and weighed me......you have to get your priorities right don't you?
Well I've had the first lot. The karma sutra drug. Wow. That was horrid. The first 45 minutes were ok but suddenly my nose blocked up, my eyes were stinging and my throat was throbbing. Almost like that feeling when you eat a really hot chilli. It was so uncomfortable, almost unbearable. Its going off now the drugs finished. Thank god i only have that once.
So this is me before karma sutra.....
Its June already, and possibly the most challenging month of the year for me. I am waiting for a phone call to tell me what time to be in hospital to start my last (hopefully) cycle of chemo. The worst cycle I've ever had. I wonder how i'll cope with it? Will i breeze through it? Or will i struggle this time? Time will tell. I'll let you know how it goes. Now I'm gonna enjoy a decaf coffee and some scrambled eggs. Catch you later.
Its not a good start! Ive just put all my tabs in my little pink dosset box only to tip them over and mix them all up. Im guessing which ones are which, fingers crossed! Then i got back upstairs with my coffee only to realise id left my hot water bottle downstairs (feel a bit chilly today, maybe anxiety induced?), and now my laptop is about to die and my charger is downstairs! They say things happen in threes!
Just to explain, instead of day 1, day 2, etc, the days are -6, -5, heading for the transplant that will be Day 0. Forewarned is forearmed!
Day -6. Well I've arrived! Ive been put in a room with a dear little lady with dementia. She's constantly laughing and chatting with herself. She keeps asking where her biscuit has gone. And now her ear seems to have dropped off and she can't find it, and nobody seems to be doing anything to help! She's just shouted, 'oh shoot'. She's a dear little thing but i would rather be somewhere with a little bit of peace and quiet. Hoping to be moved to another room later.
Not seen anyone yet except for one HCA who came in and weighed me......you have to get your priorities right don't you?
Well I've had the first lot. The karma sutra drug. Wow. That was horrid. The first 45 minutes were ok but suddenly my nose blocked up, my eyes were stinging and my throat was throbbing. Almost like that feeling when you eat a really hot chilli. It was so uncomfortable, almost unbearable. Its going off now the drugs finished. Thank god i only have that once.
So this is me before karma sutra.....
and this is me after 45 minutes.
Face all red and swollen. I have been likened to a swan vesta! Luckily its gone off now and normality is restored! Its amazing what these drugs can do.
And I've found out the drug is a derivative of mustard gas! That explains a lot.
Day -5. Feeling ok. Waiting for 2 infusions in the morning and another 2 in the afternoon. It turns out i had the first lot at 11am so the second lot can't be till 11 tonight! Hopefully ill sleep through it. Cant say I'm feeling wonderful after the first lot, and feeling very tired.
Day -4. Same old, same old. Theres a few bright things on the horizon today. Paul, the charge nurse, is on duty today and theres a bit of banter between us. A visit from the lovely Dr Jack, although his phone kept going off and he had to keep leaving me. So rude! The nurse said he's on call but I'm sure its another woman! He didn't have much to say other than to liken me to a squirrel today as i was all curled up on my bed whilst having chemo. He's gonna visit me over the weekend apparently. Hope he brings flowers! And then one of the chief executives came onto the ward to see how things are going so she came for a chat with me. I was asking how much all this treatment has cost. From last november and the PET scan, through an op to remove the gland, to a biopsy under ultrasound, to eventually having chemo x 2 admissions, all the stem cell growth stimulating jabs and district nurse visits, stem cell harvest, CT and radiotherapy, and now more chemo and stem cell transplant. And theres ongoing hospital visits and treatment. They will try and find out a rough idea but won't be able to tell me the whole cost. We are so lucky with the NHS. I never realised as much as i do now how lucky.
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