Carls story

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!

Rob

x

all my love carl and rob

xxxxxx

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

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,

Nikki

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

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

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

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

Jane

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

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

Hi everyone, been a long time since i posted! Didn't mean it to be so long but I think i always write that

So it's now 22nd of Feb and as things stand Carl is doing pretty well. He's had about 5-6 Folfirinox treatments for his new liver lesions, he had a MRI scan after number 3 (or maybe 4..I think i have chemo brain now too!) and the report came back saying good words like "considerable improvement" and "drastic reduction". Originally there were 9 tumours in the liver this time around and now the report says they can see only one and its reduced from 1.8cm to 1cm in size. The only bad side is that the tumour is invading the liver capsule but only in one place now and Im hoping that the last 2-3 chemos have reduced it even further so that it's release the capsule completely.

Carl is booked in for an ablation on the 16th of March, we battled the insurance company to get it done which is where Proff works and they finally agreed to it just over a week ago. The hospital has said 3 more chemos and then a break, but we will have to see what happens. They always add 1 or 2... or 5 more on depending on what they feel like that week.

I've not been obssessing over CA19 markers this time around, I think i just cant cope with them any more, but I know they were 1700 ish in December and have been halving every 2 weeks since chemo started. I think they were about 240 the last time we were told, so they have come down very nicely too.

Carl's also now been diagnosed with diabetes, well he self diagnosed as all the drs ignored his comments on thirst, urinating and blurred vision. But after getting a blood glucose monitor from boots we went in with the reading and they were amazed how high they were (reading of 31 when normal is 5-7). He started insulin last week and they have dropped to around the 10mark, so we will start to increase the dosage of insulin over the next couple days to try to get it into the normal range. They have delayed chemo to try to bring the sugars down as the steroids given with folfirinox are know to raise blood sugar massively. Next chemo should be this wednesday and its been a month since he's had any, but im not sure how low they want his sugars before they will start it again.

Carl was also featured in a cancer research uk billboard campaign after agreeing to being photographed during a chemo session he had a reaction to the chemo and was admitted into a ward which is when the pic was taken. It's a pic of him and his mum, I'd left to go to work by this point so (thankfully) im not on the billboard too!

http://www.theguardian.com/voluntary-sector-network/2016/jan/29/cancer-is-happening-right-now-charity-campaign

there is a link to an article with a pic of it on.

Anyway, that's enough from me, hope you're all coping ok, I looked in the mirror yesterday and wondered what has happened to me over the last 3 years, im definitely not the same person I was then! Mentally, physically, emotionally. Lots of ways better, lots of ways worse, but I expect we all have the same experience there.

Much love to you all and sending out as much strength as I can spare to each of you and your loved ones.

Rob

Blimey Carl and Rob, your lives certainly ain't dull! I guess it's been an exhausting three years for both you.

It all looks very positive and so pleased about that. Good luck with the ablation. Keep fighting the demon together, you're a great team.

Lots of love

Julia x

Hi Carol & Rob,

Great to hear some positive results yet again from the chemo Rob, as hard as Carl finds it. It does seem to be doing a good job at hitting the cancer hard, which is great.

I wonder at this stage whether they might consider some form of maintenance chemo? Although of course no evidence, but seems for Carl it is doing a job while he is on it.

Sorry to hear about the diabetes, and not great that he had to self-diagnose. But good that you are both on the ball - yes, that was a very high reading. And yes, the dexamethasone will push it up - some folk can come off the steroids post chemo by adding in other anti-sickness, but I guess with Carl's reaction to chemo, not the best idea.

Take care both,

Jeni.

Hi Rob and Carl,

That's really great news, about everything really and I am so pleased for you both, hard as it is for Carl going through the chemo at least the results are good.

He is also brave to let them photograph him when he is feeling so rotten, as is his mum too, and thanks to him and others like him hopefully we can get the message across to even more people.

Thanks so much for posting, I know its not always easy, but I think of you both often and wonder how you are getting on so its great to hear your good news.

I'm not surprised you are not the same person 3 years on, life can teach us some very harsh lessons, but I am sure the changes are all good!

Best wishes for the 16th March, but remember Carl no shopping in your dressing gown!!

sending lots of love to you both sandrax xx

That's fantastic news to hear there has been such a positive results in drastically reducing liver lesions! Not such good news regarding the diabetes. I keep wondering what my blood sugars are doing. I have no excessive thirst or increase in urination. I had fasting bloods done at the G.P surgery a month ago which came back borderline diabetic. I am having my bloods done on Thursday and have a review with my consultant so will check what level they are at. I am stopping the post chemo steroids so this will be interesting to see whether I have increase in sickness (so far I have had no problem post chemo but that could be due to taking steroids, so will have to see!)

I have seen the poster of Carl and his mum. I thought it is very powerful.

I can totally appreciate how you feel very different from 3 years ago. We are 4 months in as a family and it's totally life changing!

Here's hoping Carl continues to have a great response to Folfirinox and the ablation is a success!

Ruth x

Thanks everyone, you do all give us a boost. Carl's currently in the chemo chair and asleep so thought I would pop on again and tell you that his CA19-9 has now dropped to 100, so once again dropping by half (well just over half) and heading nicely down at a rapid rate. Was a great bit of news though it didnt really make Carl any more enthusiastic about having the chemo though he knows he is lucky to be responding so well.

I am slightly concerned by the time we go to Proff Leen for the ablation his tumour would have vanished again (like last time) and the proff will have nothing to do. Im not worried about the tumour going! But Its more the fact we go all the way from Leeds to London and just sleep in a hospital for a night and pay the £100 insurance excess for the privilege(money is very tight now I'm the only one bringing in a wage and Carl's sick pay has run out so gets only the PIP payments from the government). The Leeds hospital cant fit him in for a scan for 6 weeks and I doubt the insurance will pay for a 3rd in scan in 3months, so we will have to just go with it I guess.

Anyway, thanks again for all your input and we asked about the maintenance chemo but the dr we saw knew nothing about it. I read the links that were in the other thread and it seems promising. Carl had capcitebine with gemcitibine (spelling is wrong I'm sure) after the whipples surgery. He was pretty ill on the combination of chemos but maybe with just the tablet he will be ok, as he tolerated the 5fu part of folfirinox pretty well.

Carl really doesnt want to stop the steroids, he feels they make him feel a lot better post chemo. Whether thats actually the opposite of what they are doing I don't know. We'll monitor his blood sugars and see how they go, if he's too high i'll try and guide him in the right direction lol. But everyone is different and maybe they do actually help him more than other people.

Rob

x

Hi Rob and Carl,

Great news about the drop in the CA19's.

Hope Carl feels better, it must be awful having to have the treatment knowing how terrible he will feel but it has got to be worth it.

love to you both, sandrax xx

Hi Rob and Carl,

Just wanted to send you both a big hug and say I think you are both wonderful.

Love Sue x

Hi Rob and Carl

I am new to this forum but have read your story and agree with Sue that you are both doing brilliantly!!! Fantastic news about his CA19-9 markers.

Keep up the good work both of you xx

Hi Rob,

Thank you for updating. And sharing the very sad picture of Carl and his Mum. You just can't look at that without feeling so many emotions.

You two are truly remarkable, and Carl is such an amazing fighter.

Leila xx

Thanks everyone for your kind words again! Just a quick update from me today but Carl had his latest Ca19-9 last week and it was down to 34 which is amazing! Then yesterday we were in London for his ablation which went ahead and the Proff said there were 2 4mm tumours left which he has now ablated and is happy they have been destroyed. Scan in a few weeks time will confirm this hopefully

In theory, one more chemo on this course of treatment then a break and hopefully it will be a long one for him. Annoyingly for Carl his hair hadn't started falling out till last week and its not all gone, just thinned quite a bit so hopefully he can keep his hair if it's just one more treatment to go for now.

Hope you're all doing as best as you can

Rob

x

Hi Rob and Carl

That's really great news on all sides long may it continue. Fingers crossed he keeps that hair but it is getting warmer now anyway lol

love to you both sandrax xx

34 - what an amazing number and thankfully you did not have a wasted journey to London!

Keep up the good work both of you, Carl's story is a real inspiration and you are a great team xx

Hi Rob and Carl,

Your post made me smile! Good work you two and long may it continue.

Love Sue x

Rob I was wondering how Carl is doing now? I hope the ablation worked. I would love to hear an update if you have the time. x