Awake and up all night

Oh, that sounds really good Gill-for both of you to be involved in! I’m only about 5 miles from the Yorkshire border in North Notts but I’ve not heard of this-what an excellent idea. I really wish I’d been able to get involved in something like that when I was finished my first lot of treatment-it would have been so helpful. 

I’m never going to tell you not to waffle- look how much useful information we can learn from each other! It’s always good to chat-I didn’t think I would still be awake as I was wide awake from 4am today-that’s getting to be a bit of a habit these last few days.

Sarah xx

Hi, I think Otis a great idea that you write your Profile. I don’t understand why you want to wait until you have experienced a bit more?? What you have experienced so far is plenty. I started my Profile and sort of wrote it like a diary but I haven’t got round to updating it for a while, since even before my husband was diagnosed with Bowel Cancer in Oct 23 & Bladder Cancer in 2024, then this year has been referred to a Cardiologist. So between hIs appointments and mine, I have less and less free time. I will try & update it as well as Summarising what is already there!! I look forward to reading your profile!

Hi Fatz, We haven’t spoken before so welcome. I’m not sure what area you live in as you haven’t written on your Profile Page yet. My husband had Bowel cancer in 2023, Bladder Cancer 2024 and this year has been referred to a Cardiologist and had tests etc. I told him to apply for a Blue Badge and he said he wouldn’t qualify for one because he wasn’t on any benifits but after much persuasion and me picking up the Form from the local library.He made an appointment with Citizens Advice to help fill it in as advised by my Specialist McMillan Nurse.

Six weeks later he got his Blue Badge through the post. here in Scotland we don’t pay In most car parks if yous display your badge, it saves a lot in hospital car parks etc. You’ve nothing to loose by asking!

The same here Sarah.  I was listening to the dawn chorus at a similar hour, so I thought, seeing as the birds were singing for their breakfast I'd go out and feed them.  I love birds.

Yes, you're right, we do learn a lot from each other by chatting on the forums.  I know so much more from these last few months since I joined, and it's great!  Not to mention all the new friends - now that is a bonus.

Well it's nearly half twelve so I suppose I should try for some sleep.  Raven calls with her ghost stories and soothing voice, so I'll bid you night night and head to the land of nod xxx

Hi Chloe, Yes, a pad and pen were exactly what I was going to suggest but noticed Gill beat me to it. I take one t9 every appointment with questions written down and then when I get the answer, I write that down too. With everything going on it is very easy to forget what has been said! Good luck for later today. Please let us know how it goes!

Night night Gill. I’m still wide awake here..grrr. I love listening to the birds and watching them on the feeder. We got this little nester thing in the shape of a camper van but it got dislodged in the wind and a wheel fell off-I was so disappointed! 

Hope you get some sleep and we’ll chat soon

Sarah xx

Hi Gill & Sarah, when I was diagnosed (May) straight to Stage4 Malignant Melanoma I was told I had 5-7 months if I was lucky because it had already spread to my lymph nodes, chest, pelvis and bones. I was also told there was no treatment they could offer me as RT and Chemo don’t work for MM. I asked my Oncologist about Trials, I told her I’d try anything.

Sarah, you are spot on about the screening system, I’ve never been to as many different clinics for tests. In the end, they found a tumour in my eye, so I didn’t qualify for the Combo Trial.

My oncologist said it was only one of the drugs on the Trial i needed and she fought for me to get it and even got GSK (GlaxoSmithKline) to pay for it as it was very expensive. That was Aug 2013 when I started, was on it three and a half years. Yes I have lots of side affects to deal with but miracles do happen because I am still here to tell the tale! Anyone, like me who is given no options, you go for it!Of course since then Immunotherapy has been tried and tested and other drugs for other cancers are licensed. It is amaz8ng!

Hi Annette

You've got such an incredible story to tell..really amazing that things worked out so well with the drug you got. I completely get that you would try anything when there was nothing else likely to work and nothing to lose. Things in some areas have advanced so quickly over the years with more treatments and drugs being developed-we are lucky to have more available to us nowadays. 

But your story is such a positive one-and the quote you have in your signature is so appropriate!

Sarah xx

Thanks Sarah, I know how lucky I am because my brother died of MM when he was 43 yrs old and when they said they had nothing to offer, he too said he’d try anything but it was not to be and he died 6 weeks later. The drug I was given was Dabrafenib which has now been Licensed, which is amazing and they have eliminated a lot of the side affects by reducing the dose people have now!

My Oncologist always says I am her miracle patient and the only one whose file is heavy to carry, as most files don’t reach 2inches in width! I have cirrhosis of the liver, peripheral neuropathy, lymphoedema etc which are as a result of the drug or surgery but when I see our three grandchildren smile, it is enough compensation for me.The worst thing to date is my husband now has cancer!

We take each day as it comes and deal with what it throws at us! Yes I like that quote too!

I had a look at the active together,  it’s said it’s currently not for my type of cancer but I’ll ask my cns. It looks fantastic.