I have been admitted into hospital over 100 times – easily. The first year of my diagnosis saw me spending more time in hospital than I did at home. I have had over 20 operations (I can’t remember the exact number & to be honest can’t even remember all the operations – I try to block these from my memory once they are over). This means a LOT of time spent lying in a hospital bed. It means sore muscles, hairy legs, uncomfortable beds, greasy hair, being run-down & generally just feeling rotten.
It means long days of doing nothing, & not wanting to actually watch one more TV show that is on repeat. I often beg my husband to just rub my feet as I crave human touch & my feet ACHE from not being used. So when I saw a new business here in Joburg North being advertised, I was super excited.
Hospital Spoils is a relatively new business that will come to you in hospital, or whilst you are recovering at home. In fact, they even came to my office in Broadacres to pamper me there.
They reached out to me to offer me a treatment of my choice (of course I went for a shoulder, neck & head massage!) & I knew that my fellow rare warrior friends & hospital frequent-ers would be super excited about this idea.
Your name: Dr Claire Mitchell – Specialist General Surgeon and CEO & Sarah Saffy – Managing Director
Tell me a bit more about your business: Hospital Spoils is a specialised mobile spa with medically trained therapists that offer manicures, pedicures, massages and hair wash and blow – dry’s right at your bedside. Started by a Specialist Surgeon, servicing hospitals, clinics, retirement and private homes in the north of JHB and surrounding areas. Perfect for people in hospital or at home – new mom’s, post op, elderly, unwell and those who are house bound.
Where did the idea for this come from:
What area do you work in: Hospitals, retirement villages, old age homes, rehab facilities and private homes in Joburg North.
How can people book you to come to them: Call or WhatsApp 083 778 4741
Are your therapists trained beauty therapists: Yes and hair stylists!
I was so impressed with the level of hygiene & care that was taken throughout my treatment. And you can tell that the therapists really care about what they are doing – it is so much more than a job for them. They really want to help you feel better about yourself, & take away some of the stress that you have been experiencing.
My favourite part was that I was constantly kept informed via Whatsapp on what was on offer, who my therapist would be, confirmation of my appointment, an invoice, & then I was sent a message following my treatment to rate how it went & if they can improve in any way. Customer service is of the utmost importance – especially in this area & when you are dealing with people who are either sick or recovering from some downtime.
I can absolutely say, without any hesitation, that I recommend Hospital Spoils for anyone & everyone. And I know who my first call during my next hospital admission will be to!
This has been extremely difficult to write. I have had to relive the most trying time of my life. I have cried, laughed, & tried very hard to forget certain aspects of my stem cell transplant. Going into it we knew there was a 55% chance that I wouldn’t make it – I would either be cured, or I would die. Flip. Seeing that in writing in front of me right now gives me goosebumps. I don’t think you can ever explain that kind of fear to someone unless they experience it themselves. We knew we had to do it, & I have always been so open about my journey to get to this point. Looking back, I don’t think I would have the strength to go through this process again. There were times during it that I was wishing I could rather be taken than have to endure more pain, exhaustion & the nausea. I had no idea just how difficult it would be, & I would never advice that someone go into an experience like this willy-nilly. I am forever grateful for my doctor, family & friends who sent me messages of encouragement throughout & wouldn’t let me simply give up.
I went to see my doctor at the beginning of the year & we discussed all the nitty gritty. She made it clear about the high risk we were taking. & everything that could happen. She made sure that this is what we wanted to do, & that she would do her absolute best to manage everything as best she could. She was positive about this, but knew that we had to know all the potential positives & negatives. I was sent home to make an appointment with a dentist to ensure that I had no infection of any kind, as this would hinder my progress with my transplant & could spread throughout my body. I was also started on Neupogen injections twice daily, which husband had to give me. Luckily all my tests came back clear & I could then be admitted into hospital to begin the journey to my new life…
I was admitted into Olivedale Hospital & we managed to access my port for the very first time. My veins are TERRIBLE & this is a source of great anxiety for me, as they often have to poke me several times in order to get a line up or even draw blood. I know that I often psych myself up about this, so I was so grateful when the pushed the needle into my port & all was good.
I then began the process of having my stem cells retrieved. This was really not painful, & was simply like giving blood. The idea of it was a whole lot worse than the actual fact. I had the friendliest man from SANBS with me & performing the retrieval. We were hoping to get enough cells after only one day, but unfortunately only ended up with 1,7 million & we needed double that. So I had this over 2 days, & this magic unicorn blood was then packaged safely & sent off to be stored for the transplant.
I then had only 2 days of plasmapheresis (my usual treatment that I have been going for on a monthly basis for the past almost 3 years) & got to go home before chemo started. Unfortunately the constant blood tests also showed that I am anaemic, so this meant an iron drip & becoming more aware of the stress that was being put on my body from the external factors. However, I was so excited to get back to my babies & have some quality time with them before all the real trials started. I decided to take this weekend to spend outside, appreciate my life & just meditate on what was going to happen. I needed the time & space to just breathe…
And then began the chemo…
I was admitted back into hospital where I would be on continuous chemotherapy for 5 days. They had to do a test patch of the one medication (ATGAM) that they would be using alongside the chemo, & I reacted to it. This delayed everything, but I convinced them it was largely due to my extremely pale; never-see-the-sun skin. They gave me phenergan to help with the reaction & it pretty much knocked me out!
On Tuesday 22 January 2019 I began my very first infusion of chemotherapy & ATGAM. I had bruises on my tummy from the test patches, but seemed to cope with the actual medication being infused through my port. The first side effect we did see was extreme swelling of my face & I felt like I had been sleeping on a feather pillow for days so I was all puffy. It was dreadful at the time, but I can definitely look back & laugh at this now!
By the following day my swelling had gone down (they gave me medication to make me wee lots so I was running to the loo all day!) but the nausea & vomiting had already begun… I was trying to sleep as much as possible in between all of this & still get some nutrition in. I was sucking on ice cubes, & then my husband came to visit me (he had been away for work up until now) so that made my heart a whole lot happier.
I got moved into a room on my own at this point as my blood cell count was dropping, & I had to receive 2 bags of blood. I actually managed to eat something & it stayed down which was a huge relief – they increased my anti-nausea & really were trying everything to help improve my state of mind. I began to have terrible nightmares & oftentimes woke myself up screaming – the nurses also came in & woke me up as they could hear me shouting for help. This is apparently a common side effect of chemotherapy & one I never wish to relive.
On the 25 January I really began to question whether I was doing the right thing. I was miserable, exhausted, nauseous & they had to replace the port needle as the one I had in since my admission had blocked. I had both vomiting & diarrhea & just didn’t know what to do with myself. I was exhausted, tearful & didn’t even have the energy to read messages on my phone, let alone reply to anyone. I had no idea the emotional strain this would have on me & I begged my doctor to just let me go home. I didn’t think I could carry on. My doctor said this would probably be my lowest day, but she gave me more anti-nausea & all sorts of other medication, as well as went to buy me some ginger biscuits to try get some food into me so I could take my meds. I couldn’t even keep water down, & it took almost 2 hours to finish 1 biscuit, but it was a step in the right direction. Plus husband came to see me again so…
28 January 2019 – as well as being my sister’s birthday (sorry for trying to steal the attention again!); this is now my second birthday! The transplant was a simple affair. I was moved to the brand new transplant ward & received the first ever stem cell transplant for Myasthenia Gravis in South Africa! All the anticipation & concern, & it turned out to be such a simple procedure. The nurses were lovely & so patient with me. I chuckled when all 3 doctors arrived in full gown, mask, & isolation set-up. They said they felt like they were from Star Wars, & would NOT allow me to take a picture of them. The giggles helped me a lot though & we all celebrated as the magical unicorn blood aka my stem cells began to drip into my body. This was real. This was actually happening!
And then, I could go HOME! Home to my husband, my fur-babies & I knew my mum would be arriving soon to help take care of me whilst my husband went away for work. I had been warned that I had to be very careful around people, & my husband had to sleep in the spare room to ensure I didn’t get sick. My dogs were not allowed to lick me & I carried hand sanitizer with me everywhere I went – there was a bottle in the kitchen, next to my bed, in the lounge, in my handbag & medical grade handwash in the bathroom. I was determined I was going to make it through this time with no complications.
It has been a while since I have written a blog. There seems to have been so much going on & at long last I am able to sit back on the couch & not immediately pass out from absolute exhaustion. I thought it was time to write a little catch up on everything that has happened…
We reached the target needed for the stem cell transplant! This still feels like an absolute dream & I have been blown away by everyone’s generosity. This is my last shot at “normality” & I didn’t know if I would ever get the opportunity. It seemed like such a far away dream & something that would remain that – simply a dream. My family, friends, & strangers that shared my pleas; organised fundraisers; sent messages of encouragement & helped financially – you have all contributed towards saving my life & for this I will always be grateful. How do I even begin to thank you for putting my Christmas Wish at the top of your list? My heart is so full & I can only pray that your kindness will be returned to you ten-fold.
We had a great fundraising event at Jynx Nightclub in Lonehill called The Snow Ball, & it was a great night filled with laughter until my cheeks hurt; dancing until we fell over our own feet; & many, many snowflakes. We were celebrating a life; we were celebrating a second chance; & we were celebrating the support that has been shown by a community of wonderful people.
Now, a bit more about my transplant. This is why I have been quiet & simply trying to process what is going to be happening. This transplant is my chance at “normality” once again, but it also comes with its risks. We went to see my doctor & she drilled this into us. We need to be aware of the complications & high chance of infection. Out of the 20 people that have had this worldwide, 9 have survived. This is 45%. The other 11 didn’t make it due to infection & their body simply not coping with what has happened. This absolutely terrifies me & is a reality that I may be facing.
I will be admitted early in January 2019 for plasmapheresis – we are thinking we will do about 5 rounds to try get me in fighting shape for what is to come. We are very lucky as I am having this in the hospital that is literally around the corner from me so I can see my family & friends during this hospital stay.
Once this is done, I will start on injections to help release my stem cells into my blood. These will then be taken out & put away safely for when they will be transplanted back in. This is not a painful process – much like giving blood – so I am not concerned about this!
Then begins the tough part. We need to do a hard reset of my body – press CTRL ALT & DELETE to restore the antibodies to factory settings & hopefully get my body to function as it should. This involves chemotherapy (yes, like what they use with cancer patients) & admission into isolation. This will destroy my immune system & means that there is a high chance of me picking up any goggas floating around. I need to be careful for 3 months following this & wear my mask if I leave the house – which I have been advised not to do for at least a month following my final chemo treatment.
Once the chemo is over, then the actual transplant happens. We use my own stem cells (that have been “cleaned”) & these are put back into my body just like they would when you are receiving blood. It sounds pretty simple doesn’t it?
Because this is the first time it is being done in SA for Myasthenia Gravis, there is a lot of research & back & forth to ensure that I will be getting the best possible care & medication. My team of doctors are one in a million & I know that this would not be possible without them.
So, this is what is happening. I have come to spend Christmas with my family so I can see them all & pour love out over all of them. I have accepted that this could be my last one, although am hoping against all hope that it isn’t. I have dreams, hopes & aspirations. I have so much to be grateful for & know that I could never ever ask for a better family – & extended family that I have simply forced my way into their lives. I live a life of happiness, acceptance & growth; & have truly realised that life is a gift that you need to appreciate every day.
Thank you for reading this, crying with me, & laughing with me. Thank you for encouraging me, supporting me & just being there for me & my family. Thank you for being part of the #SaveMegs movement & helping my Christmas Wish become a reality. 2019 is going to be a year of miracles & happiness!
If you would like to read more, my fundraiser is here. I won’t be able to work for up to 6 months following the treatment due to recovery, & thus financial stress is a definite reality.
Have a very Merry Christmas, appreciate the time with your loved ones & travel safely wherever you are. Sending so much love x