Just want to say Hello

Hello Tracy,  yes it is a bit daunting isn;t it?  but still now we have taken the plunge and I feel I have been well received it is quite fun,  I don't mean fun in the way of anyone suffering but nice to meet new people,  hope we spk again.

All my best wishes

Lost and Alone 

Hi everyone on this amazing community of brave soldiers fighting the unwinnable, atleast with the Cancer we are talking. 

My name is Rafs and have just joined this morning. I could not possibly match to the level of what each one of us is suffering with, both physically and emotionally. It is tough it's very difficult and let nobody be in any doubt about it. It's horrible and unforgiving. It's torturous. The thoughts of no hope, of dying, feeling alone in a world that doesn't get you properly or that you can't "say the things as they are". For this community, we can express it for how it is.

I would like to talk to all those, feeling horrible feeling alone and don't see or feel life has anything worthwhile for them. Those fighting with unbelievable inner strength only to have their meager hopes shattered with the morbid prognosis that the Dr is obliged to put a number to. They will set for you a number of months etc they believe you have left. It's based primarily on statistics. Average means half fare better, many will live longer or even a lot longer. So keep fighting don't believe you are only going to live according to the Dr's prognosis. Cancer is often beaten with an inner determination that fights it. You can live longer. Keep up the positivity.

For sure this sadly won't be the case for everyone and my heart and mind go out to you. 

My story is one that I know may not chime with everyone. I was diagnosed with GBM grade4, in August 2011. I was 'given' 9-12 months to live. I was told chemo may not be worth trying but did offer to operate to debulk as much as possible. I had surgery at Salford Royal hospital after which my surgeon said she had managed to remove about 80% of the tumour, much more than the 50% she had hoped for. The plan now was for radio and chemo. 

At the time, my wife was 9 months pregnant with our first child. Baby boy was born 10 days post surgery. A week later I started 6 weeks of radiotherapy, 30 sessions concurrent with temozolomide which I'm sure a lot of you are familiar with. Nobody will truthfully say that it is a simple procedure. All ones worries and emotions, all bottled within to 'protect' your loved ones, for me my wife soon after giving birth, a time of hope and looking forward to the future, it was extremely difficult to contend with but would not allow those inner thoughts to get in the conversations, I wanted to protect her and our baby boy, Zvi. He'll be turning 9 soon. All the nausea and weakness trying to get out of bed and get dressed to go to Radio session again. I live in a lovely community amongst selfless amazing people, so many willing and waiting to help in whichever way possible. After completing radiotherapy, I was to have temozolomide chemo every 4 weeks for 5 days. My oncology told me the protocol was to give 9 courses of the temo. Against all prediction, the radio had stopped the tumour from growing more. But the chemo hadn't had any impact on reducing the tumour. After I had 8th cycle and with no improvement, without which the tumour would regrow fast, we discussed with oncologist exploring any other possible options there may be to help reduce the tumour. 

For at this point, I was doing very well, we were a year from diagnosis and my fight was getting more emboldened. Oncologist and we were both to research to try and find out if there is an alternative as my next temozolomide will be my last round and it didn't seem to be working. We found nothing else. We had sent the scan pictures and medical reports to top specialists in the US and Europe. They all told us that temozolomide is the best and only option. I had my ninth (and final) round. I then had an MRI scan, as I had after each 3 rounds. In complete emotional shock, the scan showed a tiny reduction! So because of this I was allowed and it was arranged that I'll have more rounds of chemo as it would be considered a trial which the NHS are happy to fund as temozolomide was relatively new to the NHS. I was then to have 5 more courses, in total 14 rounds of temo. It was then decided it was asleep. Of course we know that gbm doesn't go away completely and it is always lurking to get back at us. My story may well be extraordinary but I'm telling it to you that you have a chance for if one drug hasn't helped, now there are many more advancements in treating cancer, give each option a try. I feel wrong to say this as it is a flawed statement, keep fighting be positive. 

I've, like all of you have given up on life when things seem hopeless and the treatment brutal. It's unimaginably stressful and upsetting especially when we think of all those so very dear, our spouse, parents and children. 

Everyone needs a listening understanding someone, who has "suffering equivalents" who can comprehend the incomprehensible suffering and trauma we go through daily. 

Many thanks for allowing me into your community, 

Best wishes, wishing everyone the very best and I feel intensely for each and every one of you. 

AML

Rafs

Hi there and a very warm welcome to the group a very informative post you have given I totally agree with you that sometimes it works out that you are going to be around longer than you were given as you have been from 2011that is amazing that you have kept on fighting the battle for so long I take my hat of to you I myself was only given 3 months to live last April and I am still here fighting on my consultant calls me a miracle and always says to me everyone is an individual with the time we have left like you say new treatments are being invented all the time there is always hope and I will try any new drug to keep me going as long as I can this group is fantastic for advice and support you always get a response day or night so keep on posting best wishes

Hi thank you very much for your warm welcome and your very kind message. I'm greatly inspired by your story at the same time my heart goes out to you, it must have been traumatic with your diagnosis and horrible prognosis which only serves to weaken your resolve, but clearly you've shown your amazing credentials, your upward struggle and resolve. I'm impressed also with how your Oncologist summed up the flaw in estimating an end date. What your Oncologist said must have helped somewhat, perhaps only little, to fight for your goals and life itself. I'm so glad you are breaking down barriers but at the same time life can't have the same quality as before. Emotions are pulled up and down depending on the day, your own thoughts and by what you hear from others.

Wishing you, and every one of our community here the best of heartfelt wishes, for a longer life ahead, being saved and survived by any available, always new ways to treat cancer.

On the note of health care. I have researched extensively for different options and treatments, in the US and Europe. Let me make this clear, TODAY'S THE 72ND BIRTHDAY OF OUR TREASURED NHS, they are the very best in the world, they do their work with distinction and pure patient focused. The Doctors are world class but they don't allow their high status to show with their amazing care, time and expertise. I'm under many specialists across 3 different hospitals in Manchester and I can feel nothing but gratefulness and awe at the services they provide, treating each patient as though they are their only patient when actually they are running off their feet. Dedication. Selflessness. Extraordinary. 

Thank you for your contribution I am in a bad place at the moment and it is good to have hope x

Hi all, this is my first time of posting. I have Mantle Cell Lymphoma. I was finally given the correct diagnosis on the 10th January 2020. I was told I had CLL in July 2019. My last bloods were not good and looking like I need to start treatment. Unfortunately due to Covid 19 I cannot have the full treatment that I need. I’m not even sure that I have accepted that I have cancer. My mind is all over the place. My consultant cannot give me a time frame for the time I may have left. I could have 12 months or 5yrs he just doesn’t know. I’m 59 and my whole life has now been put on hold., especially with Covid 19. I had such great plans but now I ask what’s the point. I’m a fighter but feeling like I need outside family support now. Thank u for reading my post. Xx

Hi, sorry I cannot give  you much advice but just to let you know that I know exactly what you’re saying.  Ive just posted a new update on here, you should have a read.  Just wanted to let you know you’re not alone.  My sign off is keep strong, thats getting harder every day.  Family is great but theres only so much they can say.  Im here if you want to talk, im good at listening but again the advice bit at the moment is not good xx

Hi

I've just joined the group today. I'll probably tentatively post initially. I've not really had discussions with anyone else whose got or had cancer until last week. I had a chat with my daughters future mother in law who had cancer about 14 years ago. Her situation very different to mine, but I found talking to her helpful.  I would love to link in with others going through cancer or who like me are terminal. Although I have lots of friends and family support, I feel quite isolated with the cancer as no-one that I know is facing death and leaving family behind. I'm a positive person and fight to do something fun every day

 I'm not giving in to cancer. I'm living with it. I hope that I will also be able to help others on here by sharing my experiences. 

Hi Popgate, thank you for your warm welcome and emotionally inspiring personal story. It's 3 months post April again! You sound like a tenacious soldier, it could not have been anything but horrible when you were told you're dying soon. It's cruel and only works to make you panic and face it formidabley. You've taken it, lifted it over your head and smashed it. You put it so eloquently about how each person is affected so differently, you cannot be given an end date. You just have to take that date, show it is wrong, you have no end date. The months you give me is there for focus that I'm going to beat it. Every July you've literally won the war and beam encouragement to all others to please do your best - goals are there to be beaten. So please continue telling your story.. It'll actually help people live longer!

PS. I've written all the above but most importantly, how are you doing, where are you up to?

I have an MRI scan next week. I have an MRI 3 monthly, so we can catch the first glimpse and treat when my tumour rears its ugly head. Obviously with a GBM it's never killed off, it does grow back and catching it early gives me the best chances. My tumour did start to progress in 2018, thankfully it was caught early and I had 9 courses of chemo - temozolomide, the last dose in January 2019. Again a miracle when the tumour went back to sleep. 

Hi Snix

Welcome to the group, i hope you gain a lot from it, like i have over the time i have been here.

Glad you have family support we all need that.Though i am not sure if they can truly understand how i am feeling at times, every one here can understand, and will support you in any way possible. 

Whether its about treatment, chemo, if you are sad or just need a moan, and we can all do that.

No one asked to be on this journey and thats what i call it, but we are and just keep going along the road, till at some times we hit a bump.

I am sure others will pop in to welcome you, every one is so nice and helpful, like a big family, and hold each other up.

Take  Care Ellie 

"You Never Walk A Lone"