It’s my ‘stem cell birthday’!

25th February 2020 was when my stem cells were transplanted following the chemo.

And I left hospital on 9th March 2020.

Well what can i say, it’s been a different year to what we were expecting.

When I left hospital the pandemic had already started. I remember being in my isolation hospital room and watching the news as the pandemic started to unravel. Then I read that Sheffield Hallamshire had received their first covid positive patient into thier infectious disease department. I remember staff reassuring me that this was a completely different section to my part, with septerate entrances.
It was interesting just how blasé the nurses were about this new virus. They seemed to be totally convinced that their procedures were sufficient to protect their patients. I bet they feel a bit differently now!
However, the neuro and haematology consultants were extremely concerned about how I would stay safe when I went home. Before they released me they talked me through how I needed to isolate and expressed their concern about the children attending nursery and Jay working.

So there it was – the start of our ‘shielding’ – a term that we were to become very familiar with.

As you’ve read from previous blogs I was going for regular blood tests at the drive through test centre. Results were always good with no concerns. The staff at the hospotal wanted to keep me out of hospital as much as possible and did my consultations over the phone as much as they could.

My 6 month mark hit in September and I had an MRI – the good news was it showed no new activity or new lesions. – so far the treatment was working – yay.

But more surprising has been my recovery. My recovery feels like it’s been non existent because it hasn’t felt like I’ve had to recover from anything. We were expecting a real rollercoaster of side effects from the treatment and we were really worried about how difficult the recovery process would be. But I can honestly say that apart from fatigue in the early stages I have felt fine. The inside of my body might be thinking different but who knows.

The more noticeable recovery is my hair growth. When I first lost my hair I was very conscious and always wore a hat when leaving the house. I had two wigs but I think I wore one about twice. Jay didn’t like the wigs – he thought they looked silly, like I was wearing a wig – no shit Sherlock! Quite often the postman or the neighbour would catch me without my hat on and I would find myself apologising to them. By June, 4 months after treatment, my hair had grown enough and I stopped wearing hats. As I look back on photos I realise how short it was. I remember August when it was my 30th birthday – at that point I thought my hair was long – even long enough to style it a bit, haha. I have had regular hair cuts to keep it in a style as recommended by my lovely hairdresser. However, just like the rest of the country – in lockdown it’s growing wild. I’m starting to feel ‘normal’!

Let’s have a look at the hair growth through the year…

Now I am a year post transplant I can report I have had no further relapses of MS and hopefully this will soon be confirmed by another MRI showing no new lesions but I am still waiting for the appointment.
This last year has been very different to how I expected it to be when I first started the HSCT journey. I think this is mainly due to the pandemic. The pandemic definitely helped me to isolate and hide away from the world and continue to shield as the government kept telling me to do through the three lockdowns we have experienced.

July was our first big decision. Jay went back to work. This was quite a scary time but all went well. And in September we sent the children back to school. I continued to shield as much as possible – or, to be more accurate, as much as I could cope with!

Then came the news that many of us were waiting for – there was a vaccine! I was getting quite impatient waiting to be called for it. Some people on HSCT groups are against having any vaccine but I would quite like to get back to normal so I have had my vaccine! I was actually excited to get it – is that sad?

So for now I continue to ‘shield’ as we all try to find new ways of living.

Day 38

4 weeks in isolation after being discharged; just another 67000 weeks to go! (well it feels like that many anyway)! To be honest, after I’ve done the 12 weeks the government has stated I have to do as I am extremely high risk, I don’t know how things will work out. Will everything be back to normal? Will I be able to take the children to see their friends? Will I be able to go out for coffee with my friends? Who knows. But these are the same questions so many people face, not just me. I think I will still have to be very careful. In some ways, this virus has actually forced me to comply with the self isolation instructions because I think I would probably not have been quite as compliant under normal circumstances.

But for now we are enjoying the time as a family. At the beginning we decided to isolate as a family which in hindsight was the right decision. Fortunately I have been quite well so it hasn’t been too difficult at home with the children. Although, finding new activities and keeping the children entertained is a bit difficult at times.

The first week back home I had to make a phone call to the day ward as my head had come out in red blotchy water type spots. They weren’t painful but didn’t look very nice. The nurse automatically thought it might have been shingles and asked me to go in to be checked straight away. Great! The doctor confirmed it wasn’t shingles when I got there (I didn’t think it was anyway!). They were puzzled as to what could have caused it. They did swabs on my head but other than that I was sent home. And then I had a light bulb moment! Jay had been so good at cleaning the house and trying to make the house germ free that every morning he would open all the windows upstairs, pull the bed covers back and spray everywhere with Dettol all in one spray – even the bed! This is what I think caused the reaction! So since then he has stopped using the spray and the spots have gone thankfully.

So within the second week of being at home I got yet another cold! I think the children must have passed this on as I came out, which I suppose is why my consultant would have preferred me not to live with the children when I first went home. This cold then turned in to a bad sinus infection which I needed antibiotics for. Thankfully that has cleared up but I still have a bit of a cough. Don’t worry, it’s not covid-19, the hospital tested me for that when I went for blood tests and check up! I think that’s the 3rd time I’ve been tested for Covid-19. I feel a bit guilty when the tests seem to be in such short supply!

I have to go back to the hospital once every two weeks; it was meant to be weekly at first but because of everything that’s happening in the world they want to minimise my hospital visits as much as possible to reduce to risk of contracting the virus. When I go in I wear a mask (not the general hospital one) and gloves which I change regularly throughout my visit. At least I don’t stand out as much now walking in wearing a mask as a lot more people are wearing them.

My blood levels have been quite stable and the Doctors are happy that I’m progressing as expected.

So for now I guess I will continue to do the same things as I did yesterday and the day before that……

Day +13 discharged from hospital

I’ve spent 19 days in hospital and I have finally been discharged!

On Monday when Professor Snowden came to tell me I could go home I was over the moon. To be honest it was quicker than I thought as we were expecting about 21 days or more in hospital. They were very happy with how the treatment had gone; I hadn’t experienced any spikes in temperature which was the main concern and I hadn’t experienced any side effects. I still can’t quite believe that it’s gone so smoothly so far. I’ve followed lots of others who’ve had this treatment and they have struggled with some awful side effects so I am really counting my blessings so far. I even started to question whether it had worked because I hadn’t had a bad time but my blood count dropped as expected so it must have worked.

Prof Snowden was concerned about Covid 19. He was concerned about the children being around me because we all know they are germ breeders. We discussed options for minimising the risks. He suggested I might at my mum and dads and saw the children at their house during the day but avoided being with them at night time and in bed. However, we have decided that I will stay at home with Jay and the children and we will keep Archie off nursery for two weeks and basically isolate ourselves at home till my blood count shows my immune system getting stronger. That also means Jay has got two weeks off work; so guess what, he’s got a long list of jobs to do in the house and garden!

Having the Hickman line out was a lot easier than having it put in! Two local anaesthetic injections around the exit point, stitches out and then the doctor just tugged it out. Almost painless. The local anaesthetic hurt the most. I did have a slight reaction to the plaster he put on to cover the wound. It went all red and itchy. Goodness knows why I’m having reactions to things all of a sudden. Anyway, hypoallergenic plaster on now so all sorted.
I’ve just watched the YouTube video of the Hickman line being inserted and my first time was probably similar, but I know that the second time I had it done was a lot more difficult and uncomfortable than that one. But it was obviously worth it because once it was fitted it worked perfectly; no blockages or infections this time.

After being told I could go home in the morning, at 5.30pm we were still sat waiting for medication from the pharmacy. And I was getting more and more frustrated that I wouldn’t see my babies until the next morning! In the end we left without the medication and said we would pick it up the next day. So thankfully I made it back home before they went to bed.

I have quite enjoyed sitting and watching BBC News every morning with a cup of warm tea instead of having to watch children’s programs with half a cup of cold tea. It’s been luxury.
However, I’m more than ready to watch Paw Patrol or Pepper Pig with my boys now.

So now I just need time to recover and build my immune system up. I’m sure this bits going to be a rollercoaster.

Day +9

Got my throat swab results back today – they were taken on Tuesday because I had developed a cough.

Turns out I have the Coronavirus!

Don’t get your knickers in a twist; corona virus is an umbrella term for basicallly the common cold. If you remember, back in January I also tested positive for corona virus but it wasn’t seen as a problem.

I don’t have the covid19 that is causing all the problems now.

It was still an annoying shock because this could extend my time in hospital and make my stay longer! There is no way of treating it. I’m already having antibiotics anyway. Other than a cough I don’t have any other symptoms.

Also, I got my blood results back for today and my platlets have gone back down to 7. That is not what is supposed to be happening. So I have to have another platelet transfusion which will probably go up later tonight when they arrive. I have told them about my previous allergic reaction so I won’t be letting them set the transfusion off until they’ve given me piriton and hydrocortisone. And I will be asking the doctor tomorrow why I’m not getting the platelets specially matched like he suggested might be needed on Tuesday!

On a positive note I have started to get some bone pain. Yes, pain is good because it means my stem cells are starting to graft back in to my body and are doing what they are supposed to be doing.

There has been a slight rise in other blood results, but nothing significant.

Let’s see what the bloods are like tomorrow.

Over the past few days my energy levels have gone up and I can get a shower without rushing to sit down afterwards. Don’t get me wrong, I still get tired quickly but it seems to be an improvement.

On Monday afternoon the nurse came in and told me that my platelets were here ready for transfusion. I had no idea I needed a transfusion and it seems she didn’t until they arrived. Apparently the doctor had ordered them! Nice to be informed!

My platelet count on Monday was 23. Just to put it in to context when I started treatment on 20th February my count was 210.
Platelets are needed to help your blood to clot. So the low count doesn’t seem to make me feel unwell.

So I had the transfusion Monday and all was ok. Then Tuesday my platelet count was down further at 7. This shouldn’t have happened after the transfusion yesterday and they decided they would give me another transfusion and if it didn’t work this time it must be because I have antibodies that are fighting against the infused platelets. This would mean that I would have to have some specially matched platelets from somewhere else. So I started the 2nd transfusion which was due to take 30 minutes.

Half way through I started to have an allergic reaction. First I started sneezing uncontrollably and then my nose started to bleed. I started to feel itchy, water spots appeared on my body and my chest was tight. My nose became blocked and my eyes were itchy. I pressed my buzzer and thankfully the nurse came quickly and put some piriton and hydrocortisone through my line. This seemed to clear up my symptoms quickly and will be issued again before any other platelet transfusions.

Wednesday day +8 – Complementary therapist came round again today, she commented on how much brighter I looked from last week. I had lovely foot massage this time. Lovely and relaxing.

This morning I got missed for breakfast and at 9am, when the nurse was in doing my medication, I asked if breakfast was coming round. She looked shocked and said have you not been asked if you wanted anything. She got me some toast and it was freshly made so can’t complain.

Then I had another surprise. A nurse came to tell me I was going down for an X-ray and I had no idea this was happening. I have had a slight cough for the last two days, no other symptoms but I was swabbed to check for infections and I guess this was why I went for an x-ray. But I am guessing. I would have liked to have been informed and given the opportunity to ask questions. I like to know what’s going on so to not know that things have been prescribed or ordered for me is quite frustrating and annoying. Anyway, I got out of the room I’ve been in for 13 days for the first time today and I enjoyed my little trip out.

Fingers crossed for increasing blood counts across the board tomorrow, including platelets!

Day +6

All blood counts have dropped. I am now neutropenic, which means I am at high risk of infections. My platelets have dropped but not to the point that I need a blood transfusion so I’m just hoping they don’t drop much further. Apparently it’s not uncommon to need a transfusion so I’ll just wait and see.

I have started the GCSF injections which stimulate my bone marrow to produce new stem cells and bring my white blood count and neutrophils up. I think that 8 will be allowed to go home once my neutrophil count is above 1. I know from previous use of the GCSF injections that it causes bone pain but that can be managed with paracetamol and I guess the saying is, ‘no pain, no gain’. At least I will know they are working.

So far I don’t seem to have had any sickness from the chemo and my throat is still ok. However, I am still apprehensive that I will get some side effects. I just keep taking the medicine and hoping for the best; we’ve moved on from broccoli soup, it’s now carrot and coriander!

I’m seeing nursing staff less and less now. Having obs checked every 4 hours and then they come in to give medication about 4 times a day. But it’s ok, I’ve still got the company of my drip trolley which I’m still trailing around wherever I go – well I should say to the bathroom and back – which is the full extent of my exciting excursions! It’s mainly just for antibiotics now but they leave a slow drip of saline running all the time just to keep the line open. This stops them having to open and close the line for each infusion and therefore reduces the risk of infection in the line. After picking up the line infection previously I’m more than happy to pull my drip trolley around if it stops that happening again.

On the plus side I have lost 6lbs in weight in two days. I have no idea how as I am eating three meals a day! But I’ll happily accept it. I’ve lost more from when I was admitted but I can’t remember what I was when I was admitted to work it out fully.

Starting to get a bit of cabin fever now and used 50gb of mobile data in 3 days! There is WiFi but the only tv app that seems to work when linked to that is bbc I player.

I did get a head and neck massage the other day from a complementary therapist that visits the ward weekly and offers massages to patients. It was a lovely surprise and she said she will put my name down for the reiki and reflexology therapist that also visits.

The chemo and ATG have now officially finished and should have wiped out my immune system – or they are still in the process of doing so. I am just waiting and checking daily for my neutrophil count to get down to zero.

Today I received 8 million of my own stem cells back to help my recovery. I was told this is a very good amount and should contribute to rebooting my immune system. Apparently my body will regenerate stem cells itself but transplanting some of my own just speeds up the process and makes it safer. I will have GCSF injections again to stimulate stem cell production.

I feel as though I am doing this for the second time because when I had the false start a few weeks ago I was given a few stem cells back then and the injections so this time it’s just on a bigger scale. And that time I experienced some pretty bad joint pain for a few days so I’m expecting that again this time.

I am on IV antibiotics which is given three times a day as a precaution to prevent infections. I’m also still having steroids but they are now being reduced daily to ween me off.

I haven’t been sick or felt ill so far. But I recognise that it’s early days; I’m not out of the woods yet. Professor Snowden (haematologist) called in to see me yesterday and said I was doing great but I had 10 days recovery to go. Professor Sharrack (neurologist) called in today as well. He was in a very jolly mood; much happier than he was when I was diagnosed with flu!

I follow a couple of HSCT groups and have seen how people make a big celebration of this stem cell transfusion day and call it their stem cell birthday. I suppose it’s the birth of a new immune system. Anyway they have balloons, banners and cakes etc. A proper birthday party. Jay said I’d be lucky to get a muffin! Charming! But he was right. All I got was Mum’s broccoli soup and a fruit salad. Happy Healthy Birthday to me!

With all the news about the Coronavirus going about it does make me a little worried for when I come out of hospital with a very immature immune system. I can see me going to live at the caravan for a while when I get out. Get some nice fresh sea air – and probably lots of rain! But I’ll take it.

Nothing exciting to report over the last three days really. It’s been a very sleepless and busy few days. I am hooked up to medication and fluids literally 24/7.

I have a continuous transfusion of Mesna which helps protect all my organs from the chemo and ATG, I have a drug intermittently to make sure I’m passing out all the fluids that’s going in, anti sickness before each chemo, pririton to stop any side effects from the ATG and a few more that I can’t remember.

The chemo is administered through transfusion over one hour in the middle of the night. I have someone coming in to the room probably every half hour so sleep is virtually impossible. But at least I’m being closely monitored. My temperature and blood pressure are checked every hour and are sitting very stable, temperature in the 36° region and blood pressure at normal levels. I don’t want to talk too soon but after 3 doses of chemo I haven’t been sick yet. Two more doses to go so fingers crossed I won’t be.

I haven’t lost my appetite yet either in fact I’ve become more hungry to the point where I’m having to have a midnight snack and cup of tea. The nurses bring me a sandwich and make the tea – it’s lovely – unlike the tea that comes round on the day time trolley!

I am having 1gram of steroids daily which is a very high dose and I’m putting the increase of appetite down to that lol. I am prepared for my appetite to decrease and I have been told I’m likely to stop eating and drinking for a few days because I could get something called Mucositis which is a painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemo. The nurses are looking for signs of this daily and will prescribe a mouthwash to help with that if it occurs.

Since my last dose of chemo in January, I have been surprised how quickly my hair has started to grow back. When I shaved my hair off back in December my scalp was still quite spiky because some of the hair folicols were still there then January it went completely bald and smooth and February it started to grow back. Archie touched my head the other day and said ‘oh soft, not prickly’ – yep, thanks Archie! I am more than prepared for it all to fall out again and will probably take longer to start growing back because I have had more chemo going in to my body this time. I’m going to take vitamins to help detoxify my body when I’m out of hospital and also look in to any supplements to help stimulate hair regrowth. I’m ready to have my hair back to be honest. Although I do like how easy it is wearing the scarves.

Hoping for a bit more sleep tonight …….

Let’s try again. Stage 2 day -5

Well, here I am. Back again to restart the treatment.

I spent the last few days packing my bags, holding my babies and getting as ready as I could.

I’ve waited until the treatment is well underway before I dared post this blog – it does seem like it is really happening this time – at last! I seem to be a very famous patient; they all seem to know my history and keep checking I haven’t got any flu symptoms or infections – or Coronavirus!

The Hickman line was put in again yesterday – it did not go smoothly at all this time and the cardiovascular consultant had to reinsert it twice. It was very uncomfortable. I really hope I don’t have to have that done again.

I have tried to attach a link to YouTube of someone who filmed his whole Hickman line procedure. I have not yet dared to watch this but thought some of you may be interested to see what happens. I believe my mum and dad have watched it already and said it doesn’t look that bad. Ok for them to say when it’s not them having it done……

Treatment regime started as soon as I got back to the ward. No delays this time so now I guess we have to wait and see what happens over the next few days. Let the fun begin…….

You lot must be as sick of reading these as I am of writing them. So I will keep it short but I just wanted to keep you updated.

So the date I had scheduled to restart the transplant stage 2 was 6th February. Unfortunately this has now been cancelled again as I had to go in to hospital on Monday to have a swab and blood tests because I had suspected tonsillitis. These symptoms started on Sunday so thought it was best to phone the day ward and go and get swabbed just incase. These swabs take 24 hours to grow something and nearly to the hour I was swabbed the next day I got a phone call from a nurse saying the swabs had grown a throat infection and the doctor has prescribed antibiotics to be taken over 10 days!

Helen, my transplant nurse called me later, explained that we were cancelling the transplant for this week and will rebook for 2-3 weeks. This was upsetting because I really just want to get on with it! Also, I will more than likely miss my dad’s 60th birthday and party!

Helen confirmed the swab had grown strep A, but basically as I thought I have tonsillitis. I haven’t had tonsillitis for about 7 years. It’s just typical! Anyway, now I’m just waiting for a new date to have the Hickman line fitted and to start the transplant again.