Home time finally after 8 days since being re-admitted.

I was only re-admitted due to blood level being too low and being at risk of infection; it seems I was at more risk of infection in hospital! Unluckily, the infection I picked up (burkholderia) was rare and quite hard to treat but after three different antibiotics it’s finally killed it. My neutrophils and white blood count have risen drastically and therefore I can go home.

I am also flu free :).

I have been given a date to come back to start the process again 2 weeks from now, so, see you soon O1 – haematology Ward. But for now I am off to see my babies and spend lots of time playing and having cuddles – someone else can change the nappies- have to give germs a wide birth!

So an update over the eventful last couple of days.

Friday 10th January – neutrophil count 0.18Spent all day Friday in my room as expected nothing to report on that day.

Saturday 11th January – neutrophil count 0.04Woke up feeling fine; had a shower, breakfast etc and then wham! All of a sudden I was frozen, shivering uncontrollably, and teeth chattering. The nurse tried to take my pulse along with other obs but because I was shivering so much the clip wouldn’t stay on my finger! My temp at that point was 37.6 so obviously going to start to rise. The shaking and shivering lasted about 40 mins; my temp then rose to 39 degrees but I couldn’t have paracetamol until they had done blood cultures from my line and my arm for infection checks. I eventually stopped shivering but was burning up and not feeling good at all. Fever peaked at 40.2 and they were struggling to get it down but finally a combination of paracetamol drip and fast flush fluids eventually brought it down. Inevitably, some of my MS symptoms flared up as well and for a while I couldn’t even walk to the toilet.

Sunday 12th January – neutrophil count 0.05I was slightly better I seemed to be able to go longer in between paracetamol doses, no more shivering and I had more energy and was able to eat something. What I found funny was that there is a medical name for the shivering and shaking – rigor. So the nurse said to me, ‘you were rigoring’! I said that sounds like a term used for people that are coming off drugs – I probably looked like someone coming off drugs to be honest.

Monday 13th January – neutrophil count 0.94Received confirmation that an infection has grown in the blood samples that came out of the line. The infection is called burkholderia and it’s quite rare. Don’t know how I got it. After some deliberation they decided the line had to be removed. I was a bit anxious about this happening but it wasn’t as bad as I expected. What was interesting was that they had to press on a vein in my neck to stop it bleeding after the line came out. This was in the same area that I experienced painful cramping spasms when I was at the height of my fever so it was obviously the infection from the line that caused those neck cramps.

Neutrophils have started to rise today to 0.94. So 48 hours of anti-biotics and then hopefully my blood counts will be high enough to go home on Thursday and re book another date to start it all again.

Bit of an update over the last few days.

I got to go home on 7/1/20 which was lovely to get home and see my children. I still have the Hickman line in so I was very cautious of that as it’s still held in with stitches and I have two wires dangling. Also I need to be careful it doesn’t get infected as that happens often. Archie was obsessed with looking at my ‘poorly’ and was very careful and aware of it when giving me a cuddle. When I was discharged I was given an outpatients appointment for Thursday 9th to have my bloods checked and to be reviewed by the doctor.

One day at home yesterday and I think I was quite good and rested quite a bit – well for me I did anyway.

9th January came to Hallamshire for Blood reviews. Surprise surprise, my neutrophils have dropped to 0.29 and I am being kept in because I am at risk of infections. I did expect this but it’s still upsetting when you’re told. I tried to prepare Archie for this as well by telling him I was going back to hospital today so he knew but I’m not sure how much he listened to me.

The stem cell transfusion I had on the 6th will help me to recover from the chemo but will take roughly 10 days to start to work. So for now it’s back in to an isolation room till my neutrophils rise to higher than 1.

Today they are giving me back some of my stem cell to help me recover from the flu and chemo this time. Luckily when my stem cells were removed they got a lot more than needed so we are able to use some ‘extra’ ones and save the rest for the main transplant.

Minor inconvenience of having to move rooms as the filtration system needed changing in the room I was in. So packed up and moved to a different ward but still in an isolation room.

Pririton and steroids given again through my line whilst my stem cells are defrosted in a ‘bath’ in my room. Then the stem cells were put in through my line. That was a bit of an anti climax. Apparently I was told during this process the room will smell of a tin of sweet corn but I won’t be able to smell it. I couldn’t smell it as expected and jay said he couldn’t either. But a nurse walked in and said ‘ohh stem cell smell’ that was about an hour after the transfusion.

Another bit of good news I was told today is that if all my obs stay fine and no rise in temperature over night then I could be going home tomorrow. I will still have to come back for my bloods to be checked at least twice a week though. I will also be prepared that if my white blood count drops again then I know I will probably be re admitted. That’s because I could be at greater risk of picking up more infections.

Today it’s jays birthday and unfortunately for him he got to spend it all day with me in my hospital room. He will be having a cake at my mums with the children tonight though.

Aunty Becky (or aunty Baz as Archie calls her) and Uncle Mark have, over the last 5 days,helped out loads with the children allowing Jay and my mum to come and visit me on a rota system.

So let’s see what happens tomorrow …….

Not much to update. All treatment has now stopped completely including the fluids to wash out the chemo and ATG.

I’m on Tammy flu which is just crazy because yes they are telling me I have Influenza A but I have no symptoms of flu! I have a small cough but other than that feel absolutely fine.

The plan is still to receive some of my stem cells back on Monday to help recover and then to book me in again to start the full treatment again when I’m well.

So for now looks like I’m just catching up on Netflix. I might have to buy more internet data at this rate!

Didn’t sleep too bad last night – managed to get a few broken hours.

Had a dose of chemo during the night and some anti sickness and fluids. The nurses have to monitor my fluid intake and output again.

I started the 10 hour ATG drug at 12pm again today. This drug is the one that can cause a fever so I have to watch for signs of temperature rising. The chemo wipes my immune system out. The nurses have warned me about all the side effects I could experience whilst having it and they give paracetamol and piriton to protect against them.

I wrote the above this morning.

All change.

Treatment abandoned because I have flu: although I feel perfectly fine!

I now have to stay in hospital until I’ve recovered from the flu and the chemo treatment so far. They are going to give me back some of my frozen stem cells to aid recovery because they collected plenty – that’s one bonus! Goodness knows how long that will be. Then I come home and have to wait at least 4 weeks before they can start the treatment again.

You know it’s serious shit when Professor Snowden and Professor Sharrack and the transplant coordinator come in the your room at the same time!

Yes, I’m gutted. But it’s just not worth the risk. If the flu develops while my immune system is non existent it’s just not worth thinking about.

So, back to the drawing board.

Cases all packed yesterday. Children stayed at my Mum’s last night because we had a 6:30am start today.

Saying goodbye to the kids was hard for me, however when I told Archie I was going in to hospital he wasn’t bothered: ‘ok’ he said. ‘I stay at Grandmas’, and ran off to continue playing. I think everyone was crying apart from the kids….. and Jay!!

Today is day minus 5 which means 5 days before transplant. Day 1 is stem cell transplant day. Arrived at the hospital day ward for 7.30am. Was taken down to X-ray department and into what looked like a mini theatre for the Hickman line to be fitted.

I was pretty nervous for this procedure however it wasn’t too bad. I did feel like the doctor stabbed me in the neck when he first numbed the area but after that I didn’t feel any pain, just pressure.

Back to the ward to start the treatment and wait for a bed in a specialised room. My mother did my head in by nagging and checking all the protocols. Then Jay came and the amount of sympathy I got was zero. However, he wasn’t happy with the state of my dressing and he told the nurse it needed changing and in the end got it sorted and cleaned up properly.

I’m literally hooked up to lines of treatment from 12pm today for the next 5 days until my stem cells go back in. My blood pressure, pulse and temperature is monitored every hour. They start to panic if my temperature rises above 37.5. So far it’s gone to 38.5 but came down again.

Finally got my room at 8pm. I Should have had it first thing this morning but better late than never. It feels a little bit like a mini travel lodge room. It has a wardrobe, en-suite and a fridge. Now time to unpack and set up Netflix. I have a feeling that I won’t be getting much sleep. Also Jay wants to go home to bed! He’s hard done by isn’t he! He’s only been here 8 hours.

So less see how much sleep I get.

X

Not much to report here over the last couple of weeks.

After shaving my hair I started to wear the wig when leaving the house but it became very annoying whilst on my head and also looked stupid so I bought some nice ‘cancer caps’ and these are all I wear now. Of course I bought some glamorous ones – leopard print :). I also had to shave my head with a razor because when I was sleeping it felt like I was laying on pine needles. Honestly I don’t know how men cope; cold heads, prickly spiky bits! But before I get carried with empathy, I’ll just remind myself of all the specific ‘women’s issues’ we have to put up with! No more ‘poor men’!

As it’s December of course that has meant many trips to Meadowhall Christmas shopping and many Christmassy trips out with the children to see Santa and various Christmas markets so that has meant I have been doing a lot of walking and not much resting! I know I know; you’re probably thinking when will she ever learn! Probably never because I will keep going until I can’t; I don’t want to miss out on anything! So it has meant I have become a little bit tired and my mobility has been affected (I think slightly) but to the point where the coordinator nurse noticed a difference and asked if I thought I was relapsing. I said I didn’t think so, just been busy. I agreed that if anything got any worse I would go to my GP for a course of steroids. Well on Sunday evening I came down with the worst shaking and cold feeling, I was worried I was getting the flu. I had no sleep Sunday night and I could hardly walk safely to the toilet. In the morning I had to call my mum as Jay had gone to work and I didn’t trust myself to go down stairs carrying Max. I must have had a temperature and that caused my MS symptoms to flare up. I did not feel good. My mum was very supportive though! When she saw me she said I looked ghastly – cheers Mum!! I started a course of steroids but to be honest, even by the next day I was loads better in all ways. I think I had probably had the same infection that the boys had recently and it had activated some of the old MS damage and on Sunday night the infection must have peaked. Thankfully it wasn’t a relapse. I think I am starting to understand my body and my MS a bit better now. Anyway, all recovered from that so it meant another trip to Meadowhall.

On other important news I have a date to start stage 2 – whoo!! 2nd January at Royal Hallamshire bright and early. First thing on the agenda will be to have a pic line fitted through my neck into my chest. This will be where they administer the chemo, fluids and all the other stuff and they will also be able to take blood from it. Yay, no more canulas or needles almost every hour like last time. I must admit though I am rather scared of having the pic line in. It is done by a specialist in a mini theatre using ultra sound to guide the tube in which goes close to my heart. I’ve been told to let them know if my heart starts to ‘flutter’ because that will mean it’s gone a bit too far and they will pull it back. I’m sure my heart will be doing more than ‘fluttering’ so I’m not sure I’ll be able to tell! Then once that’s in I am straight onto the ward to start the treatment, after which I will be in from then I will be in isolation with only close family and hospital staff able to enter the room. No children! Thank goodness for face time!!

Before Christmas I have to go for a breathing test and a heart scan. This is to provide a base line for future reference so then can monitor any chemo damage if any damage and address it if and when needed. It sounds as though my health will be closely monitored in future which is reassuring.

So Now’s to enjoying Christmas with my babies and family.

Hope you all have a good one! Here’s to a brand new 2020!!

Well after a week of my hair falling out, I decided to brave the shave…

I was sick of it falling out anywhere and everywhere, blocking the plug holes and looking like there was a dead rat on my rug! So, last Friday I had it cut into a very short pixie style cut, but by Sunday there were more and more bald patches so I decided it all needed to come off. My good friend kerry did a fine job of shaving it. It took two weeks exactly from the one dose of chemo to it starting to fall out.

It is very strange to touch and feels like little prickles. When I’m sleeping it feels like I have velcro stuck to my head.  And it has surprised me how much warmer you feel when you’ve got a lot of hair; I definitely need to wear a hat now to keep me warm. When I go out now I am either wearing a wig or a hat specifically designed to be soft and comfortable for this purpose. I was wearing it tonight when my brother, Rob, saw me for the first time.  Sensitive as ever, he fell about laughing and told me I looked like ‘that old woman off Coronation street’ – Hilda Ogden!  At least we had a laugh – after a few choice words of course!

But to be honest I prefer to wear nothing; however I do feel sorry for the people who have to look at me.  It’s not a glamorous look. 

I expected Archie to be a bit more curious about my shaved head.  After all, he comments when I’ve had my nails painted a different colour. But the only comment he has made has been about the hat – ‘what is that on your head?’ he asked me!  

Meanwhile max is none the wiser.

As for me in general no other update, I am going to sleep a bit earlier on an evening but that could just be to do with having a 6 month old who has now decided he wants to wake up through the night.

Not heard anything from the hospital about dates to start stage two so I will wait a few more days before phoning to chase that.

Short up date. Bye for now

X

Been home a week now so thought I should give you an update on what’s been happing. Think it will be a short update to be honest.

Think I’ve probably been doing too much since I got home from hospital. I was just enjoying the freedom of being out of hospital. I’ve been doing things with the children, cooked Sunday dinner for 9 people, met my friend at a play area with the kids and done quite a lot of Christmas shopping. I am certainly suffering mobility wise now. Rest is needed but probably going to be hard to get with looking after the children especially with my mum and dad are swanning off on holiday. My mum and dad have been great, they have been having one of the boys overnight most nights to help me out in a morning.

On another note my hair has really started to fall out thick and fast. I am clinging on to it for as long as I can!

That’s my small update this week. I will try and update once a week while not much is happening