So I’ve had my first immunotherapy treatment the other day.  The process was easy and painless however unfortunately I had been vomiting for a few days prior and also when I arrived. I have to say the nurses there are some of the most kind caring and friendly people in this world! You would have to be to work in such a role I would imagine but I just can’t praise them enough!  there was so much to go through and so much information but it is so important to understand what to look out for. Had a visit from just about the whole team; social worker, palliative care nurse (had another home visit the next day for all of their info), dietician, chemist and pharmacist.  Gosh I have to say I feel so supported with such a team behind me! so now I’m at home and letting my body do it’s thing. I don’t have another treatment til the end of the month. I just want this to work and be successful and be able to get more enjoyment in my life like I read from you guys here supporting me.   I want to thank you too. This is a great community to share stories and encourage one another!  ... View more

Hi Colin, That too is a very inspiring story, which at this moment I really need.  I hoped against hope that it would be a blood clot or blood in the area but all the specialists here at the PA have had a look and I was advised yesterday that it’s a terminal cancer.  to say I’m shocked and devastated is not even close to my feelings. I’m so scared. I know everyone says it, but I don’t want to die. I haven’t really been given a chance at life yet, not married, no children, never been in love, all those things even tho I am 45.  mans I want to scream “it’s not fair and why me” and I know everyone feels the same.  I just really thought I had a chance to beat this and get back a normal life.  I have so much on my mine like my cat in a cattery back in Darwin, my unit and all my stuff.  my biggest fear has always been “not being here” not existing and not being anything anymore. My brain not having thought and stuff.  mom still prepared to do what I need with chemo etc once I speak with the group but gee, I just wish I felt I had more options like doing a surgery to remove the affected areas (now two spots on pancreas and one in abdo lining).  my mum is so brave and is being so strong for me when I really wish she didn’t have to be in that position.    ... View more

That is really inspirational Budgie! That is mind and I guess everyone’s biggest fear, that kind of diagnosis.  Thank you for sharing.  I will do whatever I have to to keep going and even tho I know there are days when you just have a snap or break or are just frustrated (I’ve had two this week in hospital) that I will push on through as best I can.    I’m still on the roller coast as i was told the soft mass were blood clots but they still aren’t sure. If they stick a needle in and drain then it could have disastrous consequences so I am extremely greatful that they want to take the time to make sure of what they are dealing with.  My preference is to stay in QLD as I don’t have anyone to really look after me in Darwin with recovery plus I didn’t really want a 4hr plane trip with clots.  I just seem to have a very unusual situation of which specialists should really be handling my case.  ... View more

So I guess I didn’t quite know what a roller coaster this was going to be. I had surgery and was happily recovering when I had severe should pain. Back into hospital and another CT scan and ultrasound showed a dark colour thing in my abdomen. As I was in a small town hospital I was moved to the larger Wide Bay Fraser Coast Hospital in Hervey Bay. The doctors spoke to the urologist back in Darwin who said it would be liquid pooling in the area and to drain it. The specialist was up from Brisbane and I was scheduled for that procedure but he wanted another ultrasound done.  The results from that have devastated me. Yes there was liquid but there was also a small soft mass. I can’t believe that this is just 6weeks after surgery.  I’ll be having an MRI on Monday then the doctors need to plan the next step.  Given this has happened so quickly I obviously don’t want to muck around and if i need surgery or chemo or whatever I want it done ASAP.  mom devastated, sad, confused and just can’t believe it. I have amazing support from my friends. My elderly mum has been amazing, staying strong for me, driving 40 mins to sit and spend hours with me each day and I know it’s very early but given how quick this has happened I’m just lost. I stay strong for them but I just want to scream and cry and throw a tantrum that this isn’t fair. (It’s not fair for anyone and everyone here, whose stories I’ve read and those that show support).  ... View more

I know how you feel, I had a similar story. Pain in the stomach area and scans showed it was kidney cancer. I had surgery about a month later and that has been nearly 2 months ago. It feels like it has been forever and I still feel up in the air with what has to happen. I wish you the best of luck with your results. Take your  time to just process this and read the literature on this website. Ppl  here have been so kind and informative in sharing help and advice so reach out to all of your support networks 🙂 ... View more

I hope everyone managed to have a nice Christmas and are rejoicing in the New Year.   Well it’s been nearly 6 weeks since my surgery. It’s been a bit of a roller coaster. A few days after being discharged I was vomiting bile and dehydrated and ended up back in the ED overnight. I was fine the next day.  When I felt I was able to travel (manage the 3 hr flight and the 3hr train trip) I went to QLD.   my inside area where the kidney used to be has been quite painful, both on the front inside and back if that makes sense, but found a hot water bottle was a blessing on the back.  I can roll onto my side while sleeping but now am experiencing this inside pain with my stomach shifting. Really the only comfy position is on my back which ends up not comfy for long! The recliner lounge chair has been very comfy though! I have a follow up appointment in a few weeks so will have to head back to Darwin for that.   The doctor rang the other day (first time I’ve heard anything from them since leaving hospital) and was saying how it was a very aggressive cancer, I’m not sure if he said it was a grade or stage 4, I was a bit overwhelmed but will check at my appointment. He said that they took my appendix out as it had a 1cm growth in it but it turned out to be a bit bigger when it was actually out. They had not even mentioned a growth in the appendix prior to surgery, or that they were taking it out.  I feel very frustrated as I feel I am not getting the full information and am feeling quite scared if it’s that aggressive, if there is any still in me, or obviously the chance of re-occurance.  Sending out wishes that this year is going to be a good one 🙂 ... View more

Thanks Alfham for that insight on what you experienced. It has been very helpful. I wasn’t given any advice on lifting things and their weight but it’s so important to know.  the dizziness I had was sort of between the two you described, where I would see things moving but was not a full blown vertigo (I had one years ago and these weren’t as bad) but you are right, definitely down to the laying in bed.  I got out of hospital yesterday and am happy to be home.  I did have a very bad sleep last night where my back was just so uncomfortable and I woke every 2hrs. I had 2 paracetamol and 1 Tramadol before bed then 2 more paracetamol at 2am. Maybe it’s having a flat bed and not the magical hospital beds that bend! Anyway do you or anyone have experience of numbness across the area? Basically half my stomach and around the right side and right groin area are all either numb or tingly. The doctor did say I have lost some nerve endings hence the numbness and it will always be like that which is a bit worrying as it’s such an odd feeling and I’m concerned the areas that are tingly may always be like that, which I cannot handle and wonder if there is anything that can be done. It may just be time, it’s only 1 week after all!  thanks 🙂 ... View more

Budgie, thanks so much for your comments. I was concerned about accidental nicks etc. the docs also said too much touching the bowel can be an issue but I dont think I had that. i don’t feel too bad, not much pain but a lot of head dizziness which affects my confidence! I’ve been practicing the lung physio tasks so fingers crossed I’ll be out in the next day or two so home for Christmas.  I appreciate your comments, you have a fantastic Christmas too!  ... View more

Just letting everyone know that I had surgery and am now in recovery. I went with a thoracic epidural as it seemed to cover more area in terms of pain relief. There were problems in surgery and I lost a lot of blood and needed a transfusion. Initially the pain relief wasn’t working and the first night was pretty horrendous but after that and the correct medication I have done better. I have been out of bed twice and it’s been a struggle with dizziness and nausea.  I just wanted to thank everyone for their thoughts wishes and advice 🙂  ... View more

Thanks everyone for the support. I’m actually in Darwin so the surgery is here. Years ago we had the saying that if you needed surgery, get on a plane! I have belief in my surgeon, just I feel unsure due to this being a “major operation” the size of my tumour (about 15cm) and just not knowing I guess if my surgeons experience in having dealt with a tumour that big etc.  throw in that I had a pre admission interview mid week and the fact that I get night sweats (I put it down to hormones being a middle aged woman) had me sent off for a COVID test (luckily it hasn’t been a factor really in Darwin, but really didn’t need the extra stress!) I have to decide on pain relief options for after surgery, I’m not sure if that is common or covered in any cancer council publicans but it is between a thoracic epidural or rectus sheath catherter.  does anyone one have any advice or experience on this? ... View more