Post by Sue on Mar 19, 2022 9:48:33 GMT
Welcome back to what will be our 18th season of bringing you updates, wow 18 seasons you have all had to put up with me, my inane posting on the BSF and Facebook asking for texters, updaters etc, you must all be saints!
Anyway, usually in my welcome back message I attempt a witty post but this year it is a heartfelt plea for help. A friend of mine, a friend of speedway, a life long fan of speedway and an early team member to this very site, has had the most horrendous news. I'm not sure how many you you know Jess and have followed her story but what she has been through and what she still has to go through is a pretty eek story and she recently received the news that none of us would want to hear for either themselves or for a loved one.
I'll just post up how she announced it to her friends, I was devastated when I read it as she was one of the first to offer to help texting when we set up and is one of the oldest numbers (probably now defunct to be honest as messenger is sooo much easier), in my mobile related to speedway. She also kept me sane at my very first Brighton Bonanza where I was all sixes and sevens with nervousness and anxiety.
Jess has a bucket list and wants to build memories with her young daughter before (and it sounds very eek putting it like this), she goes and a Go Fund me has been set up to not just help towards the costs but also to raise awareness. It would be wonderful if people can help support her in her quest to build as many memories and fun moments with her daughter as possible.
The link is www.gofundme.com/f/help-jess-nat-make-memories-before-goodbyes?utm_source=facebook&utm_medium=social&utm_campaign=p_cp%20share-sheet&fbclid=IwAR2Iu0JiYzQzNnAjkaNfUguC9J7nV94H7O_5c-ME5i-BxNNe481Xx4PH_jU
Thanks all and welcome to 2022 and hopefully an uninterrupted season.
Anyway, usually in my welcome back message I attempt a witty post but this year it is a heartfelt plea for help. A friend of mine, a friend of speedway, a life long fan of speedway and an early team member to this very site, has had the most horrendous news. I'm not sure how many you you know Jess and have followed her story but what she has been through and what she still has to go through is a pretty eek story and she recently received the news that none of us would want to hear for either themselves or for a loved one.
I'll just post up how she announced it to her friends, I was devastated when I read it as she was one of the first to offer to help texting when we set up and is one of the oldest numbers (probably now defunct to be honest as messenger is sooo much easier), in my mobile related to speedway. She also kept me sane at my very first Brighton Bonanza where I was all sixes and sevens with nervousness and anxiety.
Right, Now that the Family know and I’ve just sat down, I can finally tell You lovely People
Kings College Hospital 🏥 was pretty useless tbh, We thought we were going there to find any other potential Treatments they could offer but they have none.. The CAR T Therapy we thought isn’t suitable for my Leukemia, it’s just for B Cell Leukemia.
So they basically reiterated what the Marsden said - 30% chance with Aggressive Chemotherapy but obviously that has horrific side effects (Paralysis,Convulsions etc!) which 30% chance is pretty low, so I could go into Hospital and not come back out. Aggressive Chemotherapy destroyed my Body last time which is why I know&my body knows for a fact I wouldn’t be able to handle anymore aggressive Chemotherapy.
Finding out I have 80% Leukemia in my Bone Marrow as well.
So I/we have taken the decision to go Palliative Care which in reality they have said I have a few months-but no one tells Me how long I have and haven’t got, Imma see longer than a few months is Me 💪🏼
I will hopefully be given Steroids & Chemo Tablets or Light Chemo which won’t cure Me but will give Me abit more time. The Palliative Team will be informed and also St Anthony’s Hospice-As far as I’m aware but will find out more on Wednesday when I’ve got Bloods and the dreaded Dr Tauszig.
Now we’ve had all the emotions today but from now onwards it’s happy, laughing memories and moments.
As You’ve all seen my Bucket list, I have already ticked one off but need to tick the rest off.
Kings College Hospital 🏥 was pretty useless tbh, We thought we were going there to find any other potential Treatments they could offer but they have none.. The CAR T Therapy we thought isn’t suitable for my Leukemia, it’s just for B Cell Leukemia.
So they basically reiterated what the Marsden said - 30% chance with Aggressive Chemotherapy but obviously that has horrific side effects (Paralysis,Convulsions etc!) which 30% chance is pretty low, so I could go into Hospital and not come back out. Aggressive Chemotherapy destroyed my Body last time which is why I know&my body knows for a fact I wouldn’t be able to handle anymore aggressive Chemotherapy.
Finding out I have 80% Leukemia in my Bone Marrow as well.
So I/we have taken the decision to go Palliative Care which in reality they have said I have a few months-but no one tells Me how long I have and haven’t got, Imma see longer than a few months is Me 💪🏼
I will hopefully be given Steroids & Chemo Tablets or Light Chemo which won’t cure Me but will give Me abit more time. The Palliative Team will be informed and also St Anthony’s Hospice-As far as I’m aware but will find out more on Wednesday when I’ve got Bloods and the dreaded Dr Tauszig.
Now we’ve had all the emotions today but from now onwards it’s happy, laughing memories and moments.
As You’ve all seen my Bucket list, I have already ticked one off but need to tick the rest off.
Update from the Hospital 🏥
Went through the 1st Option of Chemotherapy & Stem Cell Transplant again, Could possibly be done as outpatient but obviously risks involved & side effects and 5% chance of success. So that option is still a no go!
Obviously we decided last week we were going through the Palliative Care Option.
Unlike last week where we were told a couple of months He can’t give a time frame as everyone is different, Could be 2 months, Could be 6 months or Could be a Year, He just doesn’t know 🤷🏼♀️ because Leukemia can turn quickly.. He said I have surprised Him how far I’ve come already with being 4 Years in remission with the Treatment I did, so I said I’m gonna surprise Him even more with how long I’m going to go for 💪🏼
Bloods are looking really good, apart from the Bone Marrow which shows 70-80% Leukemia. As Bloods are good I don’t need to go back for 4 weeks now to have Bloods & Consultant.
Need to look out for symptoms of Bleeding, Breathlessness, Other Lumps and a fever of 38c.
Palliative Care Team don’t come in until they are needed. If I ended up in Hospital needed to be Ventilated because of the Leukemia He said it wouldn’t be worth doing resuscitation because it’s the Leukemia that is gonna kill Me anyways and there would be no Treatment for it, so He will put in place a DNR.
My CNS is going to sort out the Willow Foundation Application to hopefully tick of something on my Bucket List (Meeting Take That would be amazing 🤩)
Also He is going to put a referral into the Government saying my illness is Terminal as well.
So now starting to make more memories with my Bucket List, Roll on the Warmer Weather.
THANKYOU all for Your support&continued Support throughout my journey, it is very much appreciated.
Went through the 1st Option of Chemotherapy & Stem Cell Transplant again, Could possibly be done as outpatient but obviously risks involved & side effects and 5% chance of success. So that option is still a no go!
Obviously we decided last week we were going through the Palliative Care Option.
Unlike last week where we were told a couple of months He can’t give a time frame as everyone is different, Could be 2 months, Could be 6 months or Could be a Year, He just doesn’t know 🤷🏼♀️ because Leukemia can turn quickly.. He said I have surprised Him how far I’ve come already with being 4 Years in remission with the Treatment I did, so I said I’m gonna surprise Him even more with how long I’m going to go for 💪🏼
Bloods are looking really good, apart from the Bone Marrow which shows 70-80% Leukemia. As Bloods are good I don’t need to go back for 4 weeks now to have Bloods & Consultant.
Need to look out for symptoms of Bleeding, Breathlessness, Other Lumps and a fever of 38c.
Palliative Care Team don’t come in until they are needed. If I ended up in Hospital needed to be Ventilated because of the Leukemia He said it wouldn’t be worth doing resuscitation because it’s the Leukemia that is gonna kill Me anyways and there would be no Treatment for it, so He will put in place a DNR.
My CNS is going to sort out the Willow Foundation Application to hopefully tick of something on my Bucket List (Meeting Take That would be amazing 🤩)
Also He is going to put a referral into the Government saying my illness is Terminal as well.
So now starting to make more memories with my Bucket List, Roll on the Warmer Weather.
THANKYOU all for Your support&continued Support throughout my journey, it is very much appreciated.
Jess has a bucket list and wants to build memories with her young daughter before (and it sounds very eek putting it like this), she goes and a Go Fund me has been set up to not just help towards the costs but also to raise awareness. It would be wonderful if people can help support her in her quest to build as many memories and fun moments with her daughter as possible.
The link is www.gofundme.com/f/help-jess-nat-make-memories-before-goodbyes?utm_source=facebook&utm_medium=social&utm_campaign=p_cp%20share-sheet&fbclid=IwAR2Iu0JiYzQzNnAjkaNfUguC9J7nV94H7O_5c-ME5i-BxNNe481Xx4PH_jU
Thanks all and welcome to 2022 and hopefully an uninterrupted season.
