Hope68

Post Nephrectomy +5 days

2011-03-10T12:12:19Z

Hi all. Well I had my left kidney surgically removed 5 days ago. Luckily the cancer was completely confined to the kidney and hadn't travelled to lymph nodes etc. so should be all fine. Will know for sure in 6 weeks time. I'm now back at home feeling very, very sore, and barely able to walk. Worse than the pain from the wounds, which kind of settles once you stay still, is the pain at the back of my shoulders and neck, which is a sickening, agonising pain that occurs every time I have moved around upright, even for a short period of time. I've been told it has resulted from the position I was in during the operation. Wow it hurts. I have to put a heat pad on it to get any relief. Then, there's the pain relief. The Morphine made me itch all over. I was then moved to Tramadol, but that makes me feel really disoriented and nauseous. My GP has now moved me to Codeine and Paracetamol together with Lactulose to avoid constipation. I also have some anti-sickness drugs to hand as I occasionally feel so sick I just want to curl up and hide from the world. Sorry if this is too much information, but I had my first bowel movement in 6 days today. Euphoric! I expect to be off work for at least 6 weeks (I am not allowed to drive during this time) but most health professionals think 2 months is most likely. Apart from my consultant, who seemed to think it might be possible to be back at work within 2 weeks!!!! Ambitious to say the least considering how I currently feel. If anyone is about to go through this surgery and has any more questions, please send me a private message and I will happily respond. Hope xx

Kidney Cancer - D-Day +13

2011-02-21T20:23:20Z

Hi all - time for an 'emotions' update. Weeks ago, before my diagnosis, a colleague of my partner invited us to a Mexican themed get-together at her house. I had even bought a 'chilli pepper' outfit for the event (everyone else went as a Mexican Bandit). Come Saturday, the day of the event, I was completely torn about whether or not to turn up. I half wanted to go because it was a chance to forget everything, and yet I knew that there would obviously be questions which might ultimately bring me 'down' and result in me wanting to go home early. Being around people is something which I currently struggle with. My partner eventually persuaded me to give it a go, so we got dressed up and headed out, and I have to say that for those few brief hours, I had a really lovely time, because there had obviously been some 'agreement' not to bombard me with questions. Later in the evening I did talk about it with some people, which I think was easy as I don't know these people too well. I was surprised to find that I was enjoying myself. I didn't drink any alcohol as I've already started my health kick, but despite that I had an OK time. We only stayed out for a few hours, but I went home with a smile on my face. Of course, the following day I went back to being a bit mopey, but for a few hours I saw the possibility that it might all be ok eventually.

I visited my Dad this weekend too, and I can see the concern on his face because I'm not really being myself. I'm much quieter than normal and find it easier to plough all my energies into my son rather than face questions about my health. My Dad took my son golfing today, so I took the opportunity to take a walk to the seafront. Good God it was cold! I find that walking really helps me as I'm able to just concentrate on the activity, and let my head clear. In fact, not just walking, any activity that means I get out of breath a little. It just helps.

So... that's where I am currently. It helps to write it all down and I hope I'm not boring everyone.

Hope x

Kidney Cancer - D-Day +6

2011-02-15T21:08:12Z

Strange day. Feeling very low and bleak. Quiet and withdrawn too, which is unlike me. I had a real wobble last night re: making decisions about treatment. Today, my partner has contacted my consultant by e-mail on my behalf with all the questions that are going through my head. My consultant has taken the time to reply which is really nice of him, and has helped slightly. Pressure of having to make a quick decision. I seem to be very 'snappy' and intolerant at the moment - of both myself and others (even people on the TV!!!). Having said that, my son and I had a complete laugh 'til you cry moment just before he went to bed which was lovely. Rollercoaster of emotions.

Somebody texted me today to say that they'd been researching kidney cancer on the internet and all they could find was really scary stuff, and asked what site I would recommend they look at. I do start to feel like I'm propping other people up at times. I want to tell people to sod off but that's not going to help anyone is it?

As part of my post-surgery plan I have got to lose weight and get fitter, so for the last 2 days I have power-walked to the local shops and back. Today I really got hot and out of breath and accomplished it in a time of 25 minutes. I plan to do this every day until the surgery and tomorrow I'm going to try and extend the walk and add an extra 10 minutes on. I like overtaking people on route. Exhilarating.

If you fancy a laugh, and you're a Star Wars geek, check out the Darth Vadar VW ad on youtube. Very amusing and a few minutes of respite from cancer thoughts.

Hope x

Kidney Cancer - the days after the diagnosis

2011-02-14T12:10:50Z

Hello again. Back so soon? Well I actually wrote the other blog a few days ago, and posted it today. But since I wrote that other stuff has happened which I thought was worth sharing with people - and even if nobody is interested, it helps me to write it down. :-)

My first thought on waking every morning is... "I have cancer", and then I touch the left side of my torso and think about this alien presence inside me. And then I think "Why me?" followed by "It's so unfair!" etc. etc. And then I pull myself together, and go and make a coffee. To be told that it's nothing that I've done, that it's just BAD LUCK, makes it so hard to accept. Sometimes I think that this isn't happening to me.

What I'm finding hardest through all of this is other peoples reactions to my cancer. I bumped into an old friend in Sainsburys at the weekend, and when I told her about my diagnosis she started crying - in the middle of the valentine card isle! I told a good friend the news over the phone last night, and she started crying too! A lot of people have cried in front of me, and I'm finding it really hard to join in. I actually haven't had a good sob about it yet. Just odd moments where it grabs hold of me, and I have a few tears, but then I fight it back and carry on. I never know when it's going to happen either - can be triggered by a song, a smell, a sight. Anything. Not sure why I'm finding it so hard to have a good hard cry. Nobody else is!

Also, and I completely understand why people do this, but I get irrationally angry at being what I call "jollied" out of it - i.e. "you'll be fine" or "it'll be alright" or strangest of all, "it's probably nothing". I've had to tell a few people to stop doing this. I know they don't know what else to say, but it's really irritating. Right now, I can't hear the good news, and there is no silver lining to my cloud. Not that I'm bitter eh?

I'm very very lucky that the company I work for provide private healthcare and part of the package is that I've been assigned a 'Dedicated nurse' throughout the process. So Vivienne and I are fast becoming friends. When I received the diagnosis I was given choices on where/when and by whom the nephrectomy would take place. Private hospital = good aftercare but limited experience of this op. NHS hospital = op done regularly and teams of specialists on hand but aftercare maybe not as personal and would have to be on a ward. I've asked the question if I can be a private patient in an NHS hospital and I'm waiting for an answer on this. I'm sure if anyone is reading this who doesn't have the choice I must seem like a spoiled child, but actually I've found it really hard. If something goes wrong then I'll feel guilty about having made the wrong choice! Yes, spoiled child indeed.

So, it looks like the operation is schedule for the 5th March. Eeek. Quicker than I thought. I've been given a few weeks respite because the lovely man in my life has booked a trip to Paris in a few weeks time, and it's really important to us both to have some time together away from all this, before the operation/recovery process starts. Really excited about Paris, it's just a shame that we have to take the extra 'hand luggage' of the tumour with us.

I'll keep blogging while stuff pops into my head.

Kidney Cancer - diagnosis story

2011-02-14T11:49:20Z

Diagnosis - I'm a 43 year old female. I was diagnosed with stage 2 kidney cancer 5 days ago.

My story actually begins in November 2010 when I had my gallbladder removed. At my follow up appointment 4 weeks later, I complained that one of the wounds was painful and was booked in for an ultrasound scan for January 2011. The ultrasound showed that nothing was wrong with the wound, probably just scar tissue. About to get up from the bed, the radiologist put his hand on my arm to stop me, and told me that although the wounds were fine, he had found a couple of 'problems' with both my kidneys. The right kidney showed a small round lump within it, and the left kidney showed a 4cm bulge. He said I'd need to come back in for a CT scan so that they could be looked at in more depth. I genuinely didn't feel worried at first. It was only when I got home that I (of course) started to interrogate the internet and find out what it possibly could be. Well, you can really scare yourself on the internet!! However, because I felt so well in myself, I focused on cysts because I couldn't even begin to imagine that it could be anything worse. 2 weeks later I had the CT scan. And then the following week, I met my Consultant Urologist. What a lovely, lovely man. He told me that the right kidney contained a cyst which was completely harmless. Then we talked about the left kidney. He said to me that if he had seen the CT scan, but not me, he would have definitely have said it was Cancer, and would have arranged for the kidney to be removed. However, as I was approx 20 years too young for kidney cancer, he wanted to do a biopsy because it could well be something else. So, 2 weeks ago, I was admitted to hospital for the biopsy. Not a pleasant experience, but over quickly enough. If anyone wants to know what happens during a kidney biopsy, contact me and I'll be happy to reply. Then, 5 days ago, I saw my consultant again, with my partner present, and he tells me that I have a stage 2 cancer in the left kidney. I really was so shocked. I was trying to hold back the tears but at the same time conscious that my son was sat in the waiting room and it wouldn't look good for me to fall apart in front of him. After half an hour of questions and answers, my consultant (I am soooo lucky to have this man as my consultant) called my son through and patiently explained everything to him, and let him ask questions so that he was fully aware of eveything. I think this was absolutely the right thing to do. My son was very grown up about it and has coped with it marvellously. So.... the treatment. I am to lose my left kidney. Can't do a partial nephrectomy as it's in a weird location so the entire thing has to go. Apparently I can live perfectly well with just one kidney. No further treatment required. No chemo etc. But, all eggs are in one basket (kidney wise) from now on, so my consultant informs me that my focus must now be on keeping the remaining kidney healthy, which means losing weight, and exercising, and getting rid of my long term high blood pressure problem. This is probably the scariest thing for me. I have worked really hard over the last year to lose 2 stone in weight, and now the knowledge that I have to lose about another 4 stone is really scary. Also, I'm under watch for the next 5 years to check that I don't get cancer anywhere else. All really scary. Like having a big black cloud hanging over me for the next 5 years. And that's my diagnosis story. The following day I breezed into work, told a couple of colleagues the diagnosis (they've all had fingers crossed for me), received their comiserations, and then tried to do some work. And that's when it hit me, and I couldn't focus, and felt really scared and alone. So I called a friend up to meet for coffee, and we chatted and I just fell apart. And then I went home and I cleaned the house (because if the house is organised then I can organise my head). Last Friday I visited my GP and we chatted and I've been signed off for a few weeks so that I can come to terms with it all. I have been told off for trivialising my illness, been made to feel ok that I'm having a panic about it, been told to stop worrying how my friends and family are coping with it, and finally been told to do whatever I need to do in order to get a handle on it. I am sat here today, half in denial (cos if you keep yourself busy enough you can forget it exists for a while) and half scared witless by it. I'll keep you posted. x