A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Re: Carls story

Postby RLF » Tue Nov 10, 2015 1:25 pm

Hi Dolly, I often think about you and lots of other forum members we don't see much anymore. I totally understand why you (and they) wouldn't come back on very often now. Bet it feels odd not to have a link back to Leeds any more!

We are not great really. After Carl had his PET scan done we saw his onoclogist who scared the life out of us by saying they at the hospital thought his cancer was in the lining of the liver or even in the diaphragm, which wouldn't be treatable by any means we already used other than chemo. Carl had his MRI scan done and we waited a long week to find out the results of it. The Proff rang and said Carl has 9 tumours in the very top of his liver close to the diaphragm which is why he is in so much pain (the pain isn't touched by anything, morphine doesn't even help). He said they are very small but ranging in size from 0.5cm-1.5cm. He thinks they will be ablatable after some chemo so he was booked in for chemo last week.

Carl started having dizzy spells and nausea, he was getting very tired too and his stool changed to a very dark colour. So after a chat to a nurse we took him into hospital and he had 2 Ulcers in his stomach one of which was bleeding, and his haemoglobin was down to 60 (that's critically low much lower and he'd have had a heart attack). They gave him 3 blood transfusions and kept him in 5 days but let him out last friday and he was doing better.

Chemo was yesterday, the first of his new folfirinox regime but at the end of the chemo sessions he had a reaction to the chemo and was taken up into the hospital and admitted again. He said to day he is feeling better but ive not heard if he will be allowed home, im really hoping he is!

So I feel a little stressed out at the moment, the chemo should help kill the small tumours leaving the bigger ones for ablating. He's having 2-3 months chemo, then another MRI and then if its all ok ablations. Then we will be going on holiday...we need one! lol

Thanks for thinking of us, it does give me some comfort!

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Re: Carls story

Postby sandraW » Wed Nov 11, 2015 4:00 pm

Rob and Carl,
You can be sure we all think about you both, but I feel it can be a bit unfair to expect people to post if they don't really want to, some times putting it all down on paper can help other times it can make it all feel just a little too real!
No wonder you are feeling stressed out and no wonder Carl was having dizzy spells with haemoglobin levels that low, good that they got it sorted for him.
I really hope that Carl just starts to feel better in himself, this shitty disease is just so relentless, but he has done so well, and I know he will continue to give it his all.
Hopefully the furry fox will do its job again and then he can have the ablation and things will calm down and you will get your holiday, fingers crossed. In the mean time what was it Julia? used to say "keep on keeping on" love to you both sandrax xx

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Re: Carls story

Postby Sueoliver » Wed Nov 11, 2015 6:58 pm

Hi Rob,
Just to say I feel for you and sending a hug!
Love Sue x

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Joined: Sat Jan 25, 2014 4:14 pm

Re: Carls story

Postby Dollysdaughter » Wed Nov 11, 2015 7:49 pm

Ah, love, I'm so sorry you have both been going through such a horrible time. The relentless treatments, tests, waiting for results... You must feel exhausted and desperate, let alone how Carl must be feeling. I really hope there is some bloody good news around the corner for you. Several of my friends have been through what seemed like fairly hopeless cancer recently and I can honestly say that they have both pulled through and are well and truly on the mend.
Take care of yourself and hope you get to have a wonderful holiday!

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Joined: Sun Mar 24, 2013 8:15 am

Re: Carls story

Postby J_T » Wed Nov 11, 2015 9:43 pm

Sorry to hear of Carl's latest struggles but I know you will both be doing your utmost to get him back on an even keel for more of the Prof's magic!

Always checking in to read your updates.

Much love to you both.

Julia x

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Re: Carls story

Postby RLF » Fri Dec 04, 2015 4:43 pm

Hi all,
Sandra I most definitely don't expect people to post! I said I totally understand why people wouldn't want to come back to the forums at all let alone post, I don't really like coming on myself a lot of the time any more. Definitely makes things feel so real.

Lots of things have happened in the last few months, after Carl's bleed they did the chemo and he had a reaction to it which caused him to be admitted to hospital again, this time just for 2 nights but it takes its toll emotionally on us both. The gave him an extra week off chemo to recover and monday just passed he had his 2nd treatment. He had another reaction this time but they just stopped the treatment and sent us home. He's doing a bit better today (4 days post chemo) and we went out for a bite to eat this morning.

Yesterday I had a call from a hospice and Carl had a nurse turn up on the door who introduced herself as a hospice nurse and it has definitely affected us. I've felt very down since then, just makes our situation seem very real. Nothing has really changed in his status as far as we know, I am still hoping the chemo and further ablation will help control the cancer for now and give us another break from the treatment. Nobody has said otherwise to us, but the reactions to chemo and the hospice nurses have broken me a little. I'm way more emotional than I've ever been and so is Carl. We've not had any further Ca19-9 results so I don't know if anything has changed there, but he's only had 2 chemotherapy sessions so I doubt it's made much of an impact yet anyway.

Carl has also been picked as part of cancer research advertising campaign and from boxing day you may see him on a billboard. The picture was taken after his reaction to the chemo and he is curled up on a bed with his mum sat next to him crying. It's pretty hard hitting but they wanted real life people in real life cancer situations.

Hope everyone is doing ok
thanks for reading!

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Re: Carls story

Postby jay » Fri Dec 04, 2015 6:41 pm

all my love carl and rob

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Re: Carls story

Postby Ruthus » Fri Dec 04, 2015 7:30 pm

I have read your story for the first time and it has clearly been an incredibly difficult journey. Thank you for sharing and I really hope there is some more hopeful news around the corner. I am about to embark on this journey myself when I start chemotherapy on the 14th of December. Ruthus x

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Re: Carls story

Postby nikkis » Sat Dec 05, 2015 10:26 am

Hi Rob,

I do tend to look here from time to time, but don't post anymore, but just wanted to respond to your post.

Try not to feel to down about seeing the Hospice Nurse, Paul saw one for the two years he was ill, and we really viewed him as being there to help Paul live, rather than thinking about the end. He was there to offer practical support, rather than hand holding, as that was what Paul wanted.We wouldn't have gone to Portugal without his support and encouragement, or got Paul's symptoms under control.

Make sure you have someone you like, who gets what you and Carl need. Our first hospice nurse just did a lot of "ahhh's" and didn't seem to have a lot of practical advice. We asked to change and the guy we had was amazing. We actually asked if it was possible to have a bloke as Paul always preferred male nurses. Of course I was his best female nurse!

It will be really strange to see Carl on a billboard, but what an amazing thing to do,

Lots and lots of love to you both,



Re: Carls story

Postby Fifi » Sun Dec 06, 2015 5:33 pm

Hi Rob,

Sorry to read your post. I really hope Carl is coping as best as he possible can emotionally.

My Dad never wanted Macmillan or anything to do with a Hospice, as he associated it with dying. I must admit, I did too.
But while some can be quite inconsiderate, there are some out there that are just like a friend. But a friend with benefits ' not in that sense '. They can really be quite handy. Like a PA I guess.
I completely understand the reluctance though.
I wish you both all the absolute best. Hope Carl is back out soon making those delicious wraps.

Leila xx

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Re: Carls story

Postby sandraW » Sun Dec 06, 2015 6:52 pm

Hi Rob and Carl,
Trevor didn't want anyone either, but we did have a Macmillan nurse, she used to pop in for a cup of tea, have a play with the dog, and just chat to us. It was for my peace of mind really, I just needed to know there was someone there if we ever did need anyone, but it is all just so difficult and scary Trevor got scared too but she visited us for over a year.
Being emotional is perfectly normal, I used to get in the shower and have a good bawl, get dressed do my hair and pin the smile back on. Once you have got over the shock of it all I am sure you will pick yourselves up and make the most of what you have, together, and hopefully the ablation will go ahead as planned, and things will calm down again.
Well done Carl agreeing to the posters, he has done lots to help the cause. Take care and hopefully you are feeling back on track now love sandrax

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Re: Carls story

Postby Sueoliver » Sun Dec 06, 2015 7:08 pm

Hi Rob,
I have found my Mum's hospice nurse wonderful and not intrusive at all. I can ring and talk to her anytime! What an amazing thing to do be on a billboard!
Thinking of you both, stay positive and keep fighting.
I wish you both the very best and send you lots of love,
Sue x

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Joined: Sun Jan 12, 2014 1:21 am

Re: Carls story

Postby Janiebobs » Mon Dec 28, 2015 8:07 am

Hi Rob and Carl
My dad got his MacMillan nurse soon as he was diagnosed. She was a great support and was able to talk to him about his wishes and was make lots of invaluable suggestions. She also was able to pull strings to get him back to my parents local hospital.
I have just been catching up with your posts and enjoyed the video you posted of your wraps. My husband is from Leeds and on our next trip across I will definitely treat him!
Take Care

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Joined: Fri Dec 18, 2015 11:46 pm

Re: Carls story

Postby Helliemo » Tue Dec 29, 2015 11:33 pm

I've just read your story from start to finish and I'm praying for you both. You are amazingly devoted, Rob. I wish this wasn't happening to Carl and all I can offer is the results of my research so far and that is turmeric root and black pepper smoothies as often as possible, ginger root for anti sickness and cbd oil. I am so sorry I can't help you. Thank you so much for sharing your story for others. A true inspiration

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Re: Carls story

Postby Ant11 » Sat Jan 02, 2016 12:33 pm

Rob and Carl, always thinking of you both and hope that you managed a good Christmas and New Year. Love from Tracy and the gang xxxx