Sally I so appreciate you writing all this down. I was diagnosed with stage 2 NHL (in my case not follicular) for the first time in 2008. It appeared as a lump in the throat making swallowing difficult. Had chemo including Rituximab and managed 9 years remission. Sadly it came back in 2017 - this time in the colon and lung - and I had to have chemo all over again plus a very nuclear kind of chemo in preparation for stem cell transplant in 2018. At the time I was stage 4 with only a 15 per cent chance of survival. I managed to use my own stem cells but I am so grateful to all those who donate blood and stem cells as without multiple transfusions I would have struggled to make it through. Here I am 7 years later at the age of 65 and it truly feels like a miracle. Long may you both continue to outwit the shark. ❤️
Oh my goodness what a time of it!! Did you have to have RChop? You are amazing! I know that an autologous transplant is not an easy path - Long may you outwit that shark too!!! xxxxx
That’s right I initially had RChop plus intrathecal methotrexate then when I relapsed I had ESHAP then BEAM before SCT. Don’t you just love all these abbreviations. 🤓 xxxxx
Thank you for sharing, it’s so helpful to hear your story. I have multiple myeloma (non-secretory so took an age to find!) and underwent a SCT (my own cells) two years ago. It was all utterly harrowing and brutal. I continue to hold our NHS in high esteem, they looked after me so well. My husband and girls are magnificently supportive but I live in dread of the “shark” and fear further treatment. But here I am, still struggling to understand what happened to me - a fit, active and healthy female - and trying to live my best life. With love to you and your family xx
gosh what a shock that must have been!! For all of you. I understand an autologous transplant is a very tough thing to go through and I am so glad you came out the other side - not that you ever feel fully out the other side really do you? We always felt that the further away we could get from the shark, the better and thank goodness we are ten years from it. What a time of it you have had, I am so glad you have the support of your lovely family. It is so hard to get your head round - I totally hear you. One thing that kept us going was the fact that treatments that could help during a relapse, if that was to happen, were not even invented when Gav was diagnosed, so I am always so hopeful that there will be more in the armoury if that makes sense - Sending you loads of love too xxxxx
Highlighting things like this is so important. I have been a platelet donor for the best part of 20 years and so few people know about donating and how easy it is.
Oh Sal it’s so hard not to shed a tear reading this, although I’ve heard you talk about it on a few occasions it still has the same affect, I have had two friends diagnosed with blood cancer in the last six months, one is only 30 and starts her chemo next Friday 🥺, I too have been through that awful moment someone you love tells you the worst news ever and it completely sends you into a emotional rollercoaster, devastation and just general numbness, your whole world changes forever, I’m so glad that Gav has been signed off for a year, all you can do is live life to the full and grab all those amazing opportunities in life. Thanks for sharing Sal xx
Oh no! I am so sorry!! If there is anything I can do to help, please ask! Thank you so much Karen - we are grabbing every opportunity that comes our way xxx
Your writing is so captivating I think there’s a book in you just waiting to be written , you’ve brought yours and Gav’s experience to life in this post where all your emotions are palpable , its full of such thorough and informative insights into blood cancer and with knowledge comes understanding - thank you for sharing this experience and opening my eyes up to this disease , sending love and continued good health wishes to you both xxx ❤️❤️
Thank you for writing and sharing this. My job is to get these drugs approved on our NHS and available to patients. In recent years I have worked on a number of immunotherapy products to treat various cancers. Sometimes, trawling through the data and trials and costs involved it can be easy to forget there is a patient at the end of it all that will benefit - reading stories like this is so helpful to remember that.
Oh wow!! what an amazing job!! So you were most likely part of the team that got Rituximab available on the NHS as a mono therapy without the chemo part!! THANK YOU!!!
Sally you articulate this so well as you always do. You are both super hero’s albeit you won’t mind me saying Gav more so than anyone else but thank you for sharing the story from time to time it’s so important to hear ‘real’ versions x
This is a very moving read and some of it resonates with me after being diagnosed with bowel cancer in December 24. I had that awful wait until January to hear the full extent of things, it was excruciating. I agree the Macmillan nurses are angels, they scooped me up and explained everything in a kind and compassionate way. Thankfully I’m over the worst of it all now and have 5 years of monitoring, for which I’m truly grateful. It’s hard to hear the diagnosis, you go numb and feel like you’re in a tunnel but cancer treatment is amazing these days and it doesn’t always mean it’s the end for you. Good luck to you both for a positive and beautiful future x
oh my goodness Melanie - i totally get it - excruciating is the exact word isn't it. 5 years of monitoring is brilliant - I really like it when the doctors all talk in years. And absolutely you are SO right, it is by no means the end for so many who hear those awful words that they have cancer. Treatment is amazing too and I feel so lucky we live in the times we do in a country where we will get the treatment - wishing you the best that life brings, too xxx
Yes we are in the same time zone! Wellll, not sure what time zone in France you are in right now….but we are in the ‘general’ same zone. By the by I am loving your posts…and your substack this morn was fab!
Thanks Sally for explaining this so well as you've been doing for years.
The terrible fear for me has subsided , my daughter had HL 12 years ago and is 'cured' . I'm not cured of the fear though ,it will always be with me , locked away most of the time but does rear its ugly head if she's not well. ❤️
omg Anne I totally get it. I am like a hawk with Gav and I think it hit me after we walked through the storm - I wonder if you were the same - holding it all together at the time and then suffering the aftershocks once they were safe
Yes you're right Sally. I did manage to hold it together and carried on working throughout as my daughter did, she worked when she felt able. I think I suffered PTS after , I was full of anxiety for quite a few years . I'm still anxious about her health , a real mother hen ! Must be awful for her but she puts up with it 🤣
Autopilot is real.. It is a hellish place you go to when it's your child . All good now ,she's a curator at The British Motor Museum at Gaydon, Warwickshire 😊😊
Morning Sal, a very important read if there ever was one. Such wonderful news that the next review will be in a year. Sending you all so much love and hugs as you continue to navigate life with your sleeping shark ❤️
Sally I so appreciate you writing all this down. I was diagnosed with stage 2 NHL (in my case not follicular) for the first time in 2008. It appeared as a lump in the throat making swallowing difficult. Had chemo including Rituximab and managed 9 years remission. Sadly it came back in 2017 - this time in the colon and lung - and I had to have chemo all over again plus a very nuclear kind of chemo in preparation for stem cell transplant in 2018. At the time I was stage 4 with only a 15 per cent chance of survival. I managed to use my own stem cells but I am so grateful to all those who donate blood and stem cells as without multiple transfusions I would have struggled to make it through. Here I am 7 years later at the age of 65 and it truly feels like a miracle. Long may you both continue to outwit the shark. ❤️
Oh my goodness what a time of it!! Did you have to have RChop? You are amazing! I know that an autologous transplant is not an easy path - Long may you outwit that shark too!!! xxxxx
Yes it has been some ride!
That’s right I initially had RChop plus intrathecal methotrexate then when I relapsed I had ESHAP then BEAM before SCT. Don’t you just love all these abbreviations. 🤓 xxxxx
Thank you for sharing, it’s so helpful to hear your story. I have multiple myeloma (non-secretory so took an age to find!) and underwent a SCT (my own cells) two years ago. It was all utterly harrowing and brutal. I continue to hold our NHS in high esteem, they looked after me so well. My husband and girls are magnificently supportive but I live in dread of the “shark” and fear further treatment. But here I am, still struggling to understand what happened to me - a fit, active and healthy female - and trying to live my best life. With love to you and your family xx
gosh what a shock that must have been!! For all of you. I understand an autologous transplant is a very tough thing to go through and I am so glad you came out the other side - not that you ever feel fully out the other side really do you? We always felt that the further away we could get from the shark, the better and thank goodness we are ten years from it. What a time of it you have had, I am so glad you have the support of your lovely family. It is so hard to get your head round - I totally hear you. One thing that kept us going was the fact that treatments that could help during a relapse, if that was to happen, were not even invented when Gav was diagnosed, so I am always so hopeful that there will be more in the armoury if that makes sense - Sending you loads of love too xxxxx
Highlighting things like this is so important. I have been a platelet donor for the best part of 20 years and so few people know about donating and how easy it is.
Oh Sal it’s so hard not to shed a tear reading this, although I’ve heard you talk about it on a few occasions it still has the same affect, I have had two friends diagnosed with blood cancer in the last six months, one is only 30 and starts her chemo next Friday 🥺, I too have been through that awful moment someone you love tells you the worst news ever and it completely sends you into a emotional rollercoaster, devastation and just general numbness, your whole world changes forever, I’m so glad that Gav has been signed off for a year, all you can do is live life to the full and grab all those amazing opportunities in life. Thanks for sharing Sal xx
Oh no! I am so sorry!! If there is anything I can do to help, please ask! Thank you so much Karen - we are grabbing every opportunity that comes our way xxx
Thanks Sal, they just have to go with it and ride the journey, let’s just hope it’s not too awful 🥺
Such a moving post, you are both amazing. Lots of love
Thank you so much Alison xxx
Your writing is so captivating I think there’s a book in you just waiting to be written , you’ve brought yours and Gav’s experience to life in this post where all your emotions are palpable , its full of such thorough and informative insights into blood cancer and with knowledge comes understanding - thank you for sharing this experience and opening my eyes up to this disease , sending love and continued good health wishes to you both xxx ❤️❤️
Thank you so much Lisa! xxx
Thank you for writing and sharing this. My job is to get these drugs approved on our NHS and available to patients. In recent years I have worked on a number of immunotherapy products to treat various cancers. Sometimes, trawling through the data and trials and costs involved it can be easy to forget there is a patient at the end of it all that will benefit - reading stories like this is so helpful to remember that.
Oh wow!! what an amazing job!! So you were most likely part of the team that got Rituximab available on the NHS as a mono therapy without the chemo part!! THANK YOU!!!
Sally you articulate this so well as you always do. You are both super hero’s albeit you won’t mind me saying Gav more so than anyone else but thank you for sharing the story from time to time it’s so important to hear ‘real’ versions x
He literally is the hero Stacey - he is amazing xxxx thank you xxx
You are both amazing! ❤️
This is a very moving read and some of it resonates with me after being diagnosed with bowel cancer in December 24. I had that awful wait until January to hear the full extent of things, it was excruciating. I agree the Macmillan nurses are angels, they scooped me up and explained everything in a kind and compassionate way. Thankfully I’m over the worst of it all now and have 5 years of monitoring, for which I’m truly grateful. It’s hard to hear the diagnosis, you go numb and feel like you’re in a tunnel but cancer treatment is amazing these days and it doesn’t always mean it’s the end for you. Good luck to you both for a positive and beautiful future x
oh my goodness Melanie - i totally get it - excruciating is the exact word isn't it. 5 years of monitoring is brilliant - I really like it when the doctors all talk in years. And absolutely you are SO right, it is by no means the end for so many who hear those awful words that they have cancer. Treatment is amazing too and I feel so lucky we live in the times we do in a country where we will get the treatment - wishing you the best that life brings, too xxx
My heart sends your heart a huge hug darlin. Both you and Gav….just HIGE HUGS!!!
🫀🫀
Are we in the same timezone again!! love you!!!!!
Yes we are in the same time zone! Wellll, not sure what time zone in France you are in right now….but we are in the ‘general’ same zone. By the by I am loving your posts…and your substack this morn was fab!
🩱🧻😳🤣
😘
Thanks Sally for explaining this so well as you've been doing for years.
The terrible fear for me has subsided , my daughter had HL 12 years ago and is 'cured' . I'm not cured of the fear though ,it will always be with me , locked away most of the time but does rear its ugly head if she's not well. ❤️
omg Anne I totally get it. I am like a hawk with Gav and I think it hit me after we walked through the storm - I wonder if you were the same - holding it all together at the time and then suffering the aftershocks once they were safe
Sending you SO much love xxx
Yes you're right Sally. I did manage to hold it together and carried on working throughout as my daughter did, she worked when she felt able. I think I suffered PTS after , I was full of anxiety for quite a few years . I'm still anxious about her health , a real mother hen ! Must be awful for her but she puts up with it 🤣
Wishing you both well ❤️
I can’t even imagine -if it was one of our boys - how you managed it -I guess because there is no other option 🥹💞💞💞
Autopilot is real.. It is a hellish place you go to when it's your child . All good now ,she's a curator at The British Motor Museum at Gaydon, Warwickshire 😊😊
I’m crying. Thank you for sharing. Xx
aww I am sorry! xxx
Morning Sal, a very important read if there ever was one. Such wonderful news that the next review will be in a year. Sending you all so much love and hugs as you continue to navigate life with your sleeping shark ❤️
Thank you so much Claire xxx
Makes me cry every time … I remember that day in work it is indelibly etched !!! May every single yearly check up be a good one xxx
That was the hardest meeting he ever had to call and he will always be so grateful to you for EVERYTHING xxx (& so will I)