I've come on here this morning, early doors, as I've not been able to sleep very well since Friday. Sadly the 'euphoria' of my post last week with news of my upcoming operation has been smashed. I had a chat with my surgeon/consultant Friday morning, he told me my latest scan has shown, where the tumour had shrunk after radiotherapy, last session was 12th January, it has now grown again! They can't now operate and everything has been cancelled. I was gutted, understatement, even more so when they told me I can't have anymore radiotherapy, but they are looking to put me back on chemo. Chemo, if you remember, made me very very poorly last September, so much so, that they cancelled it completely. It seems, currently, that this is now my only option. I asked him if my cancer is now incurable, he responded "No, its not" and that Leicester Hospital Trust, will do all they can to help me beat this. I'm sure you can imagine how I now feel, in fact my MH has gone severely backwards. I am waiting for an appointment with the oncologist, which hopefully will be this week. I've been told I can sit and discuss all options with them, as they are fully aware how poorly I was last September. I just wanted to let you all know that 8th August is no longer happening. I'm also letting you know, for now, I'm just taking time out for awhile. I may now try and get to the first game of the season, but need to work out logistics, (I still have Baggy Mcbag Face and a hernia), but if I can make it I'll try as I now have no idea what the future holds. That's of course if I'm not undergoing chemo at that time. I will keep you informed via my good friends @TCE and @DaveStorry. Sorry to give such bad news, but, I'll still try to fight this as best I can. I just can't help thinking, if I'd been able to have the surgery just a few weeks ago, whether this would be different now. My last actual cancer treatment was January, has delay caused this, who knows? But I don't blame the NHS, who've been doing all they can. If I can make it to the first home game, it'll be nice to meet a couple of you for a pint, but if not my goal is still to get to The Valley this season. Cheers all Malc #fxxkcancer #DarkerTheShadowBrighterTheLight
Good luck Redmidland. I hope the medical profession can find a treatment to help you deal with this latest diagnosis. I wish you well and you will be in my prayers.
Sorry to hear of your setback Malc and it's completely understandable your outlook has taken a hit but know that we're all rooting for you and everyone else in the same circumstances.
Hopefully this time they can find a chemo course that's more suitable for you.
Stay positive. Years ago my body couldn't cope with the mix of chemotherapy drugs they started with so they changed to radiotherapy. That didn't work fully, so they started me on a different set of drugs that did work. As i recall, the curious thing is that the oncologist didn't think my body would cope with the second set which is the reason he didn't start with them. So maybe your body will cope better too. Wishing you all the best.
Oh Malc 😔 Sending you all my love. Please, please feel free to message me if you need to have a good old vent. I’m here, we’re here, all of us……….so use us. ♥️
Creon. To @Bedsaddick and anyone else on here who may have been prescribed creon, a drug that produces enzymes normally produced naturally by the pancreas. I'm sure, like me, you are aware of the shortage of this drug atm. My pharmacist has told me it could continue until the New Year but alternatives drugs can be prescribed. However my GP surgery is being really awkward in refusing to prescribe any despite my specialist nurse saying GP's have been issued guidance on what to do. I was wondering on other people's experience and alternative drugs being prescribed and by whom.
Oh Malc so sorry to hear your news, hope you get to see the oncologist soon, we are both thinking of you and wishing you and Mrs Malc strength and fortitude.
What a desperate situation to be put in….The Big C has so many ways to make life nigh on unbearable for so many sufferers and their families. I wish you all the very best Red in your ongoing battle.🤞
Hi redmidland. Soiry to hear your latest news . I was hoping you would get through the op and a least one of us beats this thing This f***ng disease seems to be one step forward and then back again I am now on my third line defence chemo and its taking its toll . Hopefully you will be able to ride it out and get there. Stay strong
Just a brief update, firstly thank you to everyone who has sent best wishes in your comments. Sadly, the earliest there is an appointment for me to see the oncologist is 9th August, nearly 3 weeks away. Until then I've been told to increase my pain killers, as required, cant seem to get a break at the moment, fuck it!
Having gone through, and continue to go through a period of uncertainty with my blood cancer diagnosis I know all to well how it can affect your mental health nevermind physical.
Fingers crossed for a some positive news when it finally gets around to your appointment.
redmidland its so depressing not knowing what is going on . Trying to keep up.with events is so frustrating it seems to take 3 weeks to get a scan result and i often feel i am just left hanging in the wind and it not only effects your mental health but your family too. Hang on in there
Hello all. A brief update, my MH over the last 7 days has taken a pounding. I've gone back into my shell, not been outside the home, apart from the garden. The thoughts 'buzzing ' around my head were not great, I just felt as though I wasn't being told the whole story. This morning I received a letter from my surgeon, a copy of one sent to my GP. In the letter it explains that the CT scans shows my cancer hasn't spread elsewhere or to vital organs, but the MRI scan showed the original tumour has grown in situ. Therefore, they wish to discuss a new chemo treatment for me, followed by surgery if the chemo works. This, being in writing, has lifted some my anxiety and helped to 'jolt' my MH back from the downward spiral it was on. I'm now feeling a little more positive after last week's news that had me in turmoil for the few days. I can now hope, again, that I will be rid of this awful disease in the future. Live, Love, Laugh and Be Happy xx #fxxkcancer #DarkerTheShadowBrighterTheLight
Comments
You are all in our thoughts x
Sadly the 'euphoria' of my post last week with news of my upcoming operation has been smashed.
I had a chat with my surgeon/consultant Friday morning, he told me my latest scan has shown, where the tumour had shrunk after radiotherapy, last session was 12th January, it has now grown again!
They can't now operate and everything has been cancelled. I was gutted, understatement, even more so when they told me I can't have anymore radiotherapy, but they are looking to put me back on chemo.
Chemo, if you remember, made me very very poorly last September, so much so, that they cancelled it completely. It seems, currently, that this is now my only option. I asked him if my cancer is now incurable, he responded "No, its not" and that Leicester Hospital Trust, will do all they can to help me beat this.
I'm sure you can imagine how I now feel, in fact my MH has gone severely backwards.
I am waiting for an appointment with the oncologist, which hopefully will be this week. I've been told I can sit and discuss all options with them, as they are fully aware how poorly I was last September.
I just wanted to let you all know that 8th August is no longer happening.
I'm also letting you know, for now, I'm just taking time out for awhile. I may now try and get to the first game of the season, but need to work out logistics, (I still have Baggy Mcbag Face and a hernia), but if I can make it I'll try as I now have no idea what the future holds. That's of course if I'm not undergoing chemo at that time. I will keep you informed via my good friends @TCE and @DaveStorry.
Sorry to give such bad news, but, I'll still try to fight this as best I can.
I just can't help thinking, if I'd been able to have the surgery just a few weeks ago, whether this would be different now. My last actual cancer treatment was January, has delay caused this, who knows? But I don't blame the NHS, who've been doing all they can.
If I can make it to the first home game, it'll be nice to meet a couple of you for a pint, but if not my goal is still to get to The Valley this season.
Cheers all
Malc
#fxxkcancer
#DarkerTheShadowBrighterTheLight
Hopefully this time they can find a chemo course that's more suitable for you.
Years ago my body couldn't cope with the mix of chemotherapy drugs they started with so they changed to radiotherapy.
That didn't work fully, so they started me on a different set of drugs that did work.
As i recall, the curious thing is that the oncologist didn't think my body would cope with the second set which is the reason he didn't start with them.
So maybe your body will cope better too.
Wishing you all the best.
Sending you all my love.
Please, please feel free to message me if you need to have a good old vent.
I’m here, we’re here, all of us……….so use us.
♥️
I was wondering on other people's experience and alternative drugs being prescribed and by whom.
I hope this week's meeting with the oncologist brings better news.
I wish you all the very best Red in your ongoing battle.🤞
As always, our thoughts are with you as you await your appointment and the next step in your battle .
Sending our love across the miles.
xx
Your courage and general positivity is inspiring so do your best to keep it going.
Sadly, the earliest there is an appointment for me to see the oncologist is 9th August, nearly 3 weeks away. Until then I've been told to increase my pain killers, as required, cant seem to get a break at the moment, fuck it!
Having gone through, and continue to go through a period of uncertainty with my blood cancer diagnosis I know all to well how it can affect your mental health nevermind physical.
Fingers crossed for a some positive news when it finally gets around to your appointment.
This morning I received a letter from my surgeon, a copy of one sent to my GP. In the letter it explains that the CT scans shows my cancer hasn't spread elsewhere or to vital organs, but the MRI scan showed the original tumour has grown in situ.
Therefore, they wish to discuss a new chemo treatment for me, followed by surgery if the chemo works.
This, being in writing, has lifted some my anxiety and helped to 'jolt' my MH back from the downward spiral it was on.
I'm now feeling a little more positive after last week's news that had me in turmoil for the few days.
I can now hope, again, that I will be rid of this awful disease in the future.
Live, Love, Laugh and Be Happy xx
#fxxkcancer
#DarkerTheShadowBrighterTheLight
Best wishes.