Day two of stem cell harvest
Woke up again at 6am for bloods to be done. The health care assistant who has done them the last few mornings is the best. Today I didn’t even feel the needle go in! Amazing. I have got a bit of a name for myself on the ward for not having good veins however the good staff can find them and the blood and transplant team taking my blood cells said I had got good veins! 

Hooked up to the stem cell harvest machine at 9:30am and done by 1pm. It has totally wiped me out. Needed a porter and wheel chair to get me back to the ward. I came over very weak and tired. Ate a cheese sandwich and a Bourbon biscuit with a coffee to try and perk me up. A nice relaxing bath and take away is in order for tonight at home. 

Some good news the blood and transplant team managed to get 8.9 million stem cells today so added to the ones yesterday day over 10 million! No wonder I feel wiped out; my blood has been pumped out of my body 3 times over and put back in.

Some more good news White blood count is now 12.9 And Neutrophils – 10.2; which means I’m out of danger of infections. Obviously I can still catch colds and things but it shouldn’t be as concerning as it would have been when my levels were so low.

Finally I am allowed to go home!
Walked in to a beautiful bunch of flowers at home from my work colleagues – they are the best.

Then the bestest thing was when my children came running in to give me a cuddle. And you will never guess what clothes jay passed on for max to wear…. another bloody Christmas top!! I couldn’t believe it.

Might be a bit quiet over the next few days plenty of rest to be had.

Had the phone call saying all systems go – I would be on the machine at some point today. So I made my mum straighten my hair otherwise definitely wouldn’t have been any photos taken. 

They came at about 11.00am. I had an anti anxiety tablet (can’t remember what it was called) because I was quite nervous. Not sure whether it worked because I was really anxious about having cannula needles – one in each arm. So now I’ve got 3 cannulas, one for the antibiotics up on the ward – the nurses here won’t use that because they dont want to upset the doctors from P ward. And 1 for stem cell collection and 1 to put the blood back in.

My stem cell count this morning was 13. 10 is the minimum to enable collection to take place so Ive only just made it for today. They don’t expect to be able to collect sufficient cells today so I expect to be back on the machine tomorrow to finish off.

The nurses said they found some juicy veins for the canulas; that didn’t seem to alleviate my anxiety! I was crying before the first needle even went in. Mum told me to use my Hypnobirthing breathing. That’s so easy to say from the other side of the room! But then as soon as it was done I said ‘oh, is that it then’.
I felt even more stupid when someone came in as a stem cell donor; but I don’t think I could do that.

My arm with the needle that is taking the blood has to stay straight. And apparently the needle in the other arm is meant to be able to move. But I darent! Using the commode is interesting.

Got a picture message from Jay this morning; Max is dressed in a Christmas jumper! That is why I choose their clothes.

Back on the ward; one more lot of GCFS injections to stimulate more cells ready to go back on the machine tomorrow. Yey!  Another 2 canulas to go in!

Had confirmation that they collected 1.9 million stem cells today, the minimum they needed was 2 million but they’d realistically like more than 2 million if they can get them. So back on the machine tomorrow at 8.30am for another 3 hours. So close but yet so far. Never mind. I have also had confirmation that I will be going home tomorrow afternoon. Whoooo

So time to get some rest ready for the morning

Never have I been so happy to have pain, but first an update on yesterday (Wednesday).
Yesterday was disappointing; couldn’t harvest the stem cells because even though my neutrophil count had started to rise, it wasn’t high enough to have made stem cell collection possible.

But then, throughout the night I was having mild back pain. I was very happy to have this pain as I was told to expect it because it meant the stem cells were being realised out of my bone marrow into my blood ready for harvesting. Some have said the pain is like labour pain. Please see diagram below, I would have said labour was a 7-8 however this was 3-4 so manageable.

6am came, was in a really deep sleep and was woken up by someone coming to do my bloods; this is to see if my white blood count has gone up and whether I have enough stem stem cells released into my blood. There were so many bottles they needed to fill. I’m getting fed up of being stabbed now as my veins sometimes collapse which means they have to go in again, sometimes deeper than before! The number of bruises I have is crazy.

Neutrophil count came back as 0.6 which is an improvement to the day before which was 0.05. Unfortunately it needs to be over 1 to go ahead with the harvest or go home. So another bit of disappointing news however I have stopped getting my hopes up and trying to go with the flow. I haven’t asked when I’m likely to be going home, I know there is no point until after stem cell harvest.

On reflection I can now tell it was the right decision when I was admitted to hospital; I had symptoms of my MS flare up slightly and I should know that when that happens I’m getting poorly. I’ve had MS for 10 years you’d think I’d recognise it but I think I chose to ignore it as I always do and carry on. The symptoms were numbness down the fronts of my legs in to my feet and my walking had changed and become more unsteady. I can tell now that am feeling better and the anti biotics are working as I no longer have these symptoms. I know what some of you who know me are thinking – when will she ever learn and listen to her body? The answer is, probably never!

Another lesson I have learned is to always say a proper good bye to my babies when leaving for a hospital appointment as you never know when they will keep you in unexpectedly. Not that I think they’ve noticed I’m not there. They’ve been having too much fun with daddy, grandma, grandad and uncle Rob. Not sure how fun they’ve found it, probably more stressful than anything haha. Oh and I’m sick of jay being told that he is Dad of the Year, (his ego doesn’t need massaging anymore). He was told this by the mums at Frog Phonics because he told them that he had to take them both straight to swimming after phonics; just something us mums do on a regular basis!

So feeling more positive. Hoping for harvest today but will let you know.

Bye for now.

Too tired to write a blog today. Still in the hospital on the ward.

I have been told I have an infection but they are unsure where. Being treated with IV antibiotics. Blood pressure, temperature and pulse are all ok.

Mum visited today she brought fruit and a curry she had made. Dad visited later on and brought lattes and cookies…….

Jay had both children, I think he may be a little stressed lol.

Hoping all is ok for the morning to get my stem cells harvested.

Back to the hospital today for routine blood tests to check white blood count. I was thinking it would be like Saturday; in and out, but oh no, not this time! First the nurse asked if I needed to wait to see the doctor after I’d had my blood test I said not as far as I’m aware. So off I toddled for my bloods to be taken only to be told I had to wait for the results. Great! Jay was hoping to get back to work – unlucky.

Half an hour wait white blood count came back. Neutrophils are 0.5 which means you have to say in as you are at greater risk of infection- open the flood gates – couldn’t stop crying as I was not prepared for that!

On Saturday my white blood count was 3.5. Anything below 1 and the protocol is to keep me in hospital to be safe. Professor Snowdon prescribed a course of IV anti biotics and the nursing team were ringing the wards to find me a bed. Meanwhile Jay rushed off home to pack me a bag. My mum had both children and I was worrying that I hadn’t packed their outfits in day order.

Finally on a ward. Got taken for a chest X-ray and was told the doctor would come and see me later. Hooked up to more IV antibiotics. I asked how many courses of this have been prescribed; I like to know what’s going on, how long I’m likely to be in for. Nurses struggled to give me an answer and stated the doctor will be round tomorrow now as he has gone home already (5:30pm). Nurse said as I have an infection I will be on antibiotics throughout my stay. I stated I have not been told I have an infection and that my temperature was 36.1 degrees.

Communication and information isnt great here, and neither is my patience!

Ok, rant over for now. Hopefully tomorrow will be a better day!

So, been at home the past couple of days. 
Nothing major to update. I have been feeling pretty ok other than very tired.  My scalp has been a bit itchy at times but not too bad so far.  No sign of my hair falling out yet but it is early days. 
We have made extra efforts to guard against the risk of infection but that isn’t easy when you’ve got 2 young children and a dog. Molly (the dog) stayed at Mum and Dad’s for the first couple of days but she’s back now.  Extra use of hand sanitiser etc. 
Max, my youngest, who is 6 months old also stayed overnight with Mum and Dad until the weekend so Jay could go back to work without leaving me with 2 children to get ready in the mornings. Archie was in nursery as well so that made things a bit easier. 
Between Mum, Dad and Jay, they have rotated child care so that I’ve been with the children but not had to do much so that has been great.
I have tried to eat as healthily as possible; Mum doesn’t give me much choice in this matter!  Archie thinks he’s going to a cafe when we go there but it’s definitely not your homely afternoon tea type of cafe. There are no delicious aromas of freshly baked cakes like you get in ‘normal’ grandma’s homes;     but the smell of roasting vegetables is mouthwatering – NOT!

I felt really tired on Friday but I had booked a session for Max and Archie to do Christmas hand print baubles and I really wanted to go. Mum was going to take them but at the last minute I forced myself to get ready and go with them. I was so glad I did because going out really helped and we all had a great time. In the evening I went to a Temple Spa party as well. I avoided using any of the products because of the risk of infection. I was pretty exhausted by the end of it and was ready for bed but it was nice to get out. Being cooped up in the house all day isn’t good for my sanity.

Yesterday I had to go back to the hospital to collect my GCSF injections and have a routine blood test. The injections are to help release stem cells in to my blood stream ready for harvest on Wednesday. Jay learnt how to stab me with a needle, which I’m sure he secretly loved! Going to the hospital at the weekend is the best; easy to park, didn’t have to wait long for the lift and the day ward was very quiet. We were only there for half an hour at the most – and that included a cheeky stop at the cafe to grab a hot chocolate – sshh… don’t tell Mum!
I have been told these injections could have side affects which could cause flu like symptoms, so will watch out for those.

So for now I will continue with day to day life 🙂 
X

Had to stay in an extra night which was frustrating. This was partly because I had a couple of minor setbacks, but also because the day nursing staff lost my prescription list for 4 hours which delayed me continuing my fluids for 4 hours! It was very frustrating at the time but I’m over it now and definitely going home today.Both cannulas are out so I’m literally just waiting to be discharged.

The minor setbacks were related to a rise in my temperature and a major reduction in me passing urine. My temperature rose to 38.1 so I was put straight on to an antibiotic drip and then another drip of something to make me pee more; and my goodness, it certainly worked!

Also the luxury of a private double room was short lived yesterday; never have I been more grateful for the invention of headphones. I had to have a midnight snack last night because I was starving. The nurse got me a turkey sandwich – it was so good. I must say I really like hospital food, no cooking and waited on – brilliant.

As for how I feel, just tired from lack of sleep and hungry lol. I think the hunger is due to the high dose of steroids that I’ve had.
Another MAJOR setback; and this was my own fault! I sent my overnight bag home with my dad last night. Now I’ve had to shower without my nice toiletries and I’ve got no leggings to wear; I will be walking out of hospital in a pair of donated hospital pyjama bottoms. But I’m not bothered; I’m going home!

Next back in to hospital on Saturday 16th to pick up the injections to release my stem cells, which I will administer at home myself before coming back in on 20th to harvest the Stem cells.

So bye for now X

Today I went to Sheffield Hallamshire hospital to start my HSCT journey. The chemotherapy that is given is cyclophosphamide which is used to suppress the immune system. Along with the hydration infusion for 27+ hours, I had a lot of anti sickness drugs and steroids. I had to stay in overnight whilst hooked up to an IV of fluid to wash the toxicity of the chemo out of my body.
Three days before I started the chemo I went on a fasting mimicking diet which rejuvenates your stem cells and releases new ones. It is also known to lessen the side effects of the chemo. So three days before, one day during the chemo and one day after I fasted eating a plant based calorie controlled diet.
Arrived at hospital at 8am got hooked up to the drip machine and I don’t think I realised how much fluid I was going to have! I was hooked up to hydration fluids for 5 hours then had a short burst of steroids and anti-sickness drugs to support the bladder and prevent water infection, before the chemotherapy was eventually hooked up and administered. I was then moved to a ward where I continued to have hydration fluids for 24 hours. The number of times I have been to the toilet is ridiculous! And every time it had to be in a disposable toilet pan so the ratio of fluid input and output could be measured.
The only side effect I seemed to have was a funny under water feeling in my nose whilst it was administered.Obviously I know a longer term side effect is hair loss so I have had it cut short in preparation.
Hoping to be out of hospital tomorrow (Tuesday 12th) and not return until 16th when I will start injections to release my stem cells into my blood stream ready for harvest. Anyway enough about that, I’ll save it for another post.

Bye for now X