Newbie

Hi and a very warm welcome to the online community

I didn't have the same type of cancer as you but I agree that waiting is really hard. We seem to spend so much of our time doing this, waiting for an initial consultation, then waiting for tests, waiting for the results, waiting for an operation. You'd think we'd get used to it but I don't think it gets any easier!

Do you have a date for your operation yet?

x

Hi Malbec, I’m sorry to hear of your diagnosis. I have also recently  been diagnosed with the same - NET on small bowel and lesions on my liver, I am in limbo too just waiting to see specialist team and start treatment. I just want to start fighting it right now and not stop until I’ve won, the waiting is hard but I keep myself occupied with things to do or go walking, the weathers getting better and being outdoors is helping me feel ok. Keep your chin up !

Hi Kxv950. Thank you for your message. Whilst I am sorry to hear of your diagnosis, I am pleased to have found someone else with NET's.

Hopefully as we emerge from Covid lockdown, the hospitals will be able to reopen their services and get things moving.  Like you, I am so pleased the better weather is coming; I love being in the garden and walking the dog. I am also desperate to visit the coast for a 'fix' of the sea.

I am under the Queen Elizabeth hospital in Birmingham which thankfully is not too far from Worcester where we live. I hope your specialists are not too far from you and that you hear something  very soon.

I would very much like to keep in touch, so please feel free to message me if you wish.

Good luck with your journey 

Malbec

Hi Malbec, thanks  for your message, I have just been out walking with my dog it’s a nice day here. I understand what you mean to have found someone with NETs, you will probably be going through the same feelings,  emotions  and uncertainty as myself. I try not to search online too much it’s too overwhelming, it was the explanation on the McMillan site that drew me in and I found some comfort from it. I’m under no illusions it’s a fight, but one I am determined to win and even at this early stage I fully understand the importance of a support network, so yes I will definitely keep in touch. I live in Liverpool (not far from the beach)  and I believe the specialist I will see may be on the Wirral. Not long before lockdown I visited Worcester and the Malvern hills for walking, it’s a beautiful part of the world. I’ll keep in touch for sure.... as we say here.. you’ never walk alone

Hi Kxv950

I'm so envious that you live close to the coast. Although landlocked in Worcester we usually visit the coast on a regular basis for a fix and a bag of chips of course. Lockdown has prevented this so looking forward to April 12th (fingers crossed) I take on board your comments regarding internet info. I am a retired health and social care lecturer with a little knowledge of general medical conditions, which  an be very scary. For my own peace of mind I have only used NHS and Macmillan sites which I have found useful and informative. I'm also very lucky to have ex colleagues in the medical profession to ask if needed.

Keep up the good work and let me know when you have any news and I will do likewise. By the way what type of dog do you have? I have an elderly rescued Terrier who is a nightmare when she meets other dogs! Her saving grace is she is wonderful the rest of the time,  less her.

Take good care

Malbec

Hi Malbec

It is good being close to the sea but sometimes you forget it’s there. I have a young patterdale terrier called Rory, he’s coming along brilliantly and is well behaved... most of the time... but also has the terrier traits when he gets a scent. I am in my early 50’s and still working, oddly enough I work in clinical trials with a lot of them for cancer treatments mostly immunotherapy. The company are very supportive and providing a lot of resource which is nice. I was diagnosed incidentally after being checked for gallstones. I’m still to see the multidisciplinary team this week hopefully. I willl let you know how I get on. I’ve also started keeping a journal  which really helps capture my thoughts and feelings. Enjoy the rest of your weekend and take care. I check in here regularly so I’m aways able to chat. ... ps tomorrow we’ve agreed it’s a cancer free day in my house 

Hi im a bit ahead of you. Diagnosed May 2020, surgeyr June 2020 of mesentery (with small bowel) and liver. Now on mothly lanreotide and regular monitoring

Hi Titch1111 sorry to hear of your diagnosis I hope your are feeling well. What was it like after surgery and now on lanreotide? Does it feel like life can go back to normal/ new normal?  I have had  all scans and I have a biopsy next week, I have an appt with the consultant in mid May so hopefully I will know my treatment plan soon

Hi  Titch 111, sorry to hear about your diagnosis. Like Kxv950 I'm really interested to know how you aregetting along now post surgery. Is the Lanreotide a hormone? I'm currently waiting for a date for my operation following scans and tests. Hopeully not too much longer to wait. Thank you for posting, it is really comforting to know there are others experiencing the same type of cancer. Good luck with your continuing recovery.

Hi Kvx950. How are you feeling? I see from your post you have made some progress wih regard to treatment which is really good. We have just retuned from the Devon coast so batteries are fully charged and we are completely relaxed in preperation for the next phase. Keep up the fight.