Hey everyone where does the time go? It’s December already. I feel that 2022 has definitely been a write off for me. I’ve been on this ride since January and it’s one I would love to get off of if I’m honest lol! It has taken me a long time to write this post, last time I wrote was in May. I really didn’t know how to get the words down. Apologies in advance that this is a long one!
So having done all the tests that were needed a few months back I was getting ready to crack on with this last block of treatment. Kidney function and a heart test which took most of a day. I also had to undergo another PET CT scan to check that I was still fully in remission.
You all know I’ve been avoiding this damn stem cell transplant since 2017. There is something about it which just doesn’t seem natural to me. I had to go to an appointment at Macmillan to meet my consultant (NHS) and for routine blood tests etc. It was a long wait once I arrived the place was packed. You just look around you and you can’t help but see how many people are affected by this horrible disease. it’s truly heartbreaking.
I am called in by the consultant and by the time I sat down I realised I had met him before. Back in 2016 I was looking for a 2nd opinion on my diagnosis (wanted to avoid this stem cell malarkey) and met Dr Kirit Ardeshna. I was with my amazing friend Bernie on that day. Didn’t like him then and didn’t like him now. He actually said I remember you, it was a while back. I was like fuck me I remember you too. Let’s just say we didn’t and don’t connect. For me the person looking after me is as important as the treatment itself. It even got to a point of discussion with my specialist nurse Lhara, who said no problem you won’t need to see him again, there are others.
So he goes straight into it and shows my PET scan result on the screen. I have a lymph node lighting up on the left side in my neck area. So without a doubt they think there is a reason to be concerned that the lymphoma is back. I didn’t know what to say l, what to think, or what to feel. I will need a biopsy to confirm if it is. This was immediately scheduled in a few hours. Not sure I want to describe what it’s like to have biopsy in your neck area. Let’s just say when the anaesthetic wears off it’s like you have been stabbed!
The bizarre thing about this is that I had radiotherapy in that area in 2017 and I remember my previous consultant Dr Marcus telling me if it ever comes back it won’t be in that area. But here we are. I am told it will probably result in either of 2 types of chemo or a clinical trial. This means everything will be pushed back and the stem cell harvest will need to be redone. A lot to take in. I’ve really had enough now. Honestly I was in the room for less than 10 minutes and it was all very surreal. Did I mention I didn’t like this consultant lol.
Shit, this cannot be happening I don’t have time for this. After all my debating with doing this or not, it’s no longer in my control. A few days later I get a call to say my biopsy was inconclusive and that was not the worst news, but still didn’t give me any peace of mind. So everything is on hold for a few days until a decision is reached on next steps. I was once again in limbo, a familiar place to be when you have cancer. Eventually a few days later I am told they are going with the fact that no disease was detected in the biospy and we are going to crack on with the Stem Cell transplant. Honestly!
UCLH use a hotel called The Cottom Rooms which is very close by to the MacMillan Center for this treatment. This way you can stay in the hotel and go for your daily treatment and still maintain some freedom of movement. The treatment consists of 6 days of very intense chemotherapy called ‘conditioning chemo’ followed by the re-infusion of your clean stem cells on day 6. Sounds simple enough right? I was admitted on the 30th June to the hotel and started my treatment with a few pills on day 1 – only 11! You also get a fanny pack which has a small device which delivered chemo for 30 mins twice a day, and fuck me I hated that thing. This went on for 3 days and it has to follow you everywhere. I was lucky to have Nathan come and stay with me for a few days while I was in the hotel and that was exactly the medicine I needed. I was still managing to work remotely at this point and that was always a great distraction. I really wanted to stay in the hotel for as long as possible to avoid being admitted to the hospital. The last day of chemo consists of Melphalan which they make you suck on ice lollies to reduce the damage to the inside of your mouth. I managed 6 orange lollies during the 30 minute cycle and I must say I never want to see one of them ever again! Vile!
Day 7 (they refer to this as day 0) is the big day when you are ‘re-born’ again nurses kept saying to me. Your immune system is reset. My all time favourite Irish nurse Karen told me don’t believe of word of that, it’s a load of shite! lol! They keep your stem cells in these barrels which are then kept frozen and then they put the bags in a bain marie type unit to get them to the right temperature in order to infuse them back into you. Too warm and it could damage the stem cells. I was watching and learning. Painless I must add, just really unbelievable to think what is possible and how it can really make a difference to the outcome. Mind you it works much more effectively as first line treatment, and this is certainly not my first rodeo. 3 bags later and I’m back off the hotel. If anything happens like a fever etc I need to alert them straight away.
I managed to get to get to the 8th of July before I noticed my temperature was on the rise. I called them and explained and they said come straight over. I was not feeling great that much I can say. Once there I was told I would need to be admitted to the Grafton Way building as soon as a room was available. I wasn’t even allowed to go and pack up my things, it would be done for me and brought over to the hospital. All I could think is my room is a mess lol! That’s it I am pathetic, only a few days into the transplant and I am having to check in! Little did I know I would end up there until mid August, as the thought of a couple of weeks was bad enough.
I ended up quite poorly with little appetite and vomiting all the time for the first few days, and diarrhoea. As always the nurse team were amazing and caring. Food was shit, nothing unusual there. My room was not in the right part of the hospital wing and I remember having to wait at times for someone to attend to me when I needed assistance. A few days later I was being moved to another room in the section where the take care of patients with lymphoma, so closer to the specialist team, and a better view. Bearing in mind I didn’t really want the blinds open for many days. At this point I could not longer work either so that was a new thing for me. Luckily I have the most amazing boss and team. I just could not focus on anything at all. Things got worse and it did not go to plan, I was really struggling with eating and feeling so sick. I ended up with 3 different infections and being pumped with an array of meds and morphine, the works. I had x-rays without leaving my bed being wheeled along the tunnels of the hospital from one wing to another. I had so many canulas inserted along with my PICC line, honestly they were the darkest of days. I even told the nurse team that if Nathan called not to give him any information, as I didn’t want to worry him. It had the complete opposite effect, what was I thinking?
I lost track of the days and remember not really being ‘present’ for quite some time, for days. The shock of waking up to find out I was bed ridden with a catheter inserted and in a diaper and hospital gown. I had no appetite and nothing on that damn menu appealed to me. The worst part is that I was in bed for so long that I could no longer walk or do basic things. I was truly in the hands of the team. You don’t imagine ever having someone hand wash you, wipe your bum and change your bed, all while you are in it! I had to have oxygen regularly as well as a feed tube inserted up my nose into my stomach as I was not eating. I vomited so much I had to have the feed tube re-inserted, honeslty dark days indeed. I was so emotional throughout the rest of my days in the hospital. I didn’t see any way out of there.
I had many people dropping in to see me, doctors, nurses, dietician, physio you name it. I just could not cope with it all. One of my nurses really stood out, Janet, she was my favourite and when she was on duty there was no messing about. The best of the best! I wish I could list all of the team here but unfortunatley names escape me and honestly I met soo many! They were all amazing! Maybe not the phlebotomists, aka vampires! Food was a real issue. The only things I could tolerate was frosties for breakfast and dinner and half a cheese sandwich for lunch. I so wanted rid of the feed tube and in fact everything that was attached to me. I had fevers every day and they didn’t understand why. I had to use a zimmerframe to try and learn to walk. It was now August and they said I would not be discharged until I could eat more, walk unaided and the fevers stopped. I saw this as a huge challenge that I needed to gain control of and overcome.
I am so grateful for those that came to visit me during those dark days; Denis, Amanda, Dr Kyriakou and Honor. Those that kept in touch as well, apologies for little or late replies, Una and Diane were inspirational to me. Denis came many times and was ordering the nurses around, especially with my diva demands of bottled water and ice! I tried hard to eat the things I liked but I had no sense of taste so everything tasted horrible. I did manage to face time with Nathan a few times but I was in a bad way. I didn’t really want anyone to see me like I was. I was shocked at how ill I looked, imagining what everyone else was going to think.
Fast forward to 12th of August and I really feel like I am a prisoner. My consultant comes to see me and says he is not comfortable releasing me with the ongoing fevers. I was so emotional at this point and just wanted to go home and be with Nathan. It was so disheartening to still be in hospital for so long. The next day, Saturday I was surprised to see my consultant again, as they are not usually there on the weekends. He pulled up a chair and sat beside my bed, not his usual approach. I just thought what’s up? He then starts telling me that my blood results are concerning him, as well as the fevers. He says that I may still have disease and they won’t be able to tell until I get another scan. I mean talk about hitting someone when they are already at rock bottom. Honestly I didn’t know what to say. He did however say he was happy for me to be discharged and monitored. It was too late to organise to head home straight away but tomorrow would be my escape and Nathan would come to take me home. I hadn’t seem him for weeks.
That moment you walk out of the hospital right into one of the warmest days of the summer, I was honeslty so fragile. All this time you look forward to coming home and once you are there you feel so vulnerable. You get so used to the team looking in on you all day and night. Luckily Nathan was staying with me for 2 weeks as don’t think I could have ever managed on my own. He really has been my rock! I Bernie who is a dear friend and was my PT a few years agao offered to do physio with me a few times a week as I needed to get my strength and mobility back. Just getting up and down the stairs was a high challenge, in fact so was getting up off the sofa! Fevers still there, low blood pressure and appetite was not great either, but I was home and that was the best feeling ever.
No sooner am I home but then being asked to come in a few weeks later for a PET/CT scan, oh yes, I needed to know if this whole procedure had been a complere waste of time or not. Bernie came with me for company and it was a quick there and back to UCLH and just had to wait for the results now. I managed to change all my appointments with consultants to phone calls instead of having to travel there each time. Nothing they can say to me shocks me any more, so no need to candy coat anything. I started back at work on the 29th of August and I really struggled with the keyboard for the first week. It was good to be back with the team and catching up on everything. Luckily a few days later I had a call with a consultant and the scan was showing I was in complete remission. Bloods were still no where they should be and they were concerned about my lymphocytes being raised. I just kept on with doing blood tests every 2 weeks or so, from home at least and sending in the results. I know so much about bloods now, it was better when I didn’t!
So here we are in December, Christmas is around the corner. I have to say I have a lot to be thankful for. I am getting there, my hair is slowly growing back, getting out for walks when I can and still doing pyhsio. All I will say is that I am in no way the same person I was. Still some way to go, but surely I will make another come back. Time is a healer. Are we ever free from this horrific disease? Who knows? You just have to live in the present and appreciate each new day as a gift, a blessing.
None of this would be possible without my friend and boss, Kirsty. I don’t know how I can ever thank you for helping me get throught this. I would also like to do a shout out to a special friend, a fellow cancer buddy, Diane. I am thinking of you all the time.
And finally Nathan, you are my one and only, love you so much and thank you for being the best husband ever! 😘
Much Love ❤️