Kidney Cancer Bloggers Have your Say

Today showed me that my diagnosis has changed the way we are together. Life here in Canada has meant we were back going out to work, and college, quite the reverse from our time in France when we worked side by side every day.  So this morning we worked together stacking our wood delivery, that is preparing us for winter. We now make more of an effort that both of us take the dogs for a walk. We eat at the table to eat together more and more.  We both love reading, but now we will stop to talk at any point, prior to this, if we were reading, we didn’t tend to disturb each other.

Jerry has been fine about all this, very positive, and helping me cope with what is ahead of me.  But today over our first Sunday lunch of the weekend (this is Saturday), he was looking at the our framed photos of two black cats (brothers) that we had when we were first set up home together. We talked about Ziggy and Spider when we first saw them, Spider climing curtains, and Ziggy drinking the remains of a cup of tea. I could tell he was getting emotional, so I asked if he was ok.. and he said I know I put on a brave front, but all this really frightens me.  So of course that upset me, because it allowed me to say how frightened I was too.

The conversation got veered back to the consult with Dr Lawen, who as abrupt as he was, said that it was what it was, it’s there, it’s a tumor,  it’s got to come out, end of story.. I can’t make up other bad news for you, you are among the 95% who have the kidney out, and that is the last of it – apart from the regular scans. So that turned things around again to a positive frame of mind.

I find myself putting on a very positive front at work, and everyone says that I am being very brave, and that I will be fine.  It is usually when I am in the truck driving on my own, with the radio on, and an old meaningful song comes on, and the tears roll down my face. I get to thinking that I don’t want it to be over yet.  And of course next year I will look back at my earlier posts, and think what the heck was I think writing that.

I am thinking of going back to see my GP this week, I think a chat with him will get me back on track.  I am finding it hard to concentrate at work, at the same time trying to tie up loose ends, so that my manager knows where I am with things.  My job is to getting our site to ISO 9001:2000 registration, and I audit every month to assess where were are getting to that goal.  So now I have to prepare one last audit before I leave, which for me will give them a clear picture of where the gaps are, and what they need to work on.  So although I know what needs to be done, I find that a whole day will go by, and I really have not achieved anything.  My day almost begins when Jerry and I get home, and we take the dogs for their walk together. Discuss the day, and our evening meal.  This part feels real, because this is what is important. 

We are going to Toronto for Thanksgiving Oct 10-13th to my sister, and for my sister’s sake trying to get enthusiastic about it. Before all this happened, I was very exited about going. All the Candian family together in Toronto.  Now I am focused on my op date, and it is 4 weeks away. When I mentioned to my sister that it is still 4 weeks away, she said you have Thanksgiving first, worry about that after.  Maybe those were not her exact words, but it felt like my count down was not important.   I worry whether I should have not even asked the Dr for this delay.. it would still only be 2 weeks earlier, but you worry about whether that will be the ultimate difference down the road.  This really is turning into a doom and gloom post. 

To add to that doom and gloom, companies here in Canada to not pay sick pay. You go on Leave of Absence and you get sick pay from the government, which is 55% of your pay for 15 weeks.  Jerry has only just started his job, and it is quite low paid, but with him working we thought this would straighten us out financially. Of course now it will be my turn to be barely bringing in any money, and you can’t help worrying. 

So there is a lot to think about, and all we can do is be supportive to each other, we have not been together 15 years to let all this beat us.

Share on Facebook

Posted under Gemma A S.

I got the call today, and surgery is set for 20th October.  The Hospital will telephone me with the time I need to be there. 

They faxed through a medical note (on the Urologists Letterhead) to Human Resources, stating that recovery is expected to be 8-12 weeks.  I am assuming the 12 weeks is if becomes a radical nephrectomy, as opposed to laparascopic nephrectomy.

I now have to get on with life until then, including visiting my sister in Toronto for Thanksgiving.. we are leaving 10th October and returning on the Monday 13th October.  I want to look forward to the trip, and try not to have this overpowering everything I do. It is just over 2 weeks since I was initially told what they suspected, and 4 days since it was confirmed.. I suppose this must be normal to still be dwelling on it.

I also received a huge envelope of booklets from the Canadian Cancer Society, which I have not had a chance to browse through yet.

In discussing this with Jerry, we will no doubt go down to Halifax on the Sunday, and stay over in the Point Pleasant Lodge, which is just over the road from the Hospital, and has special rates for family and patients.  Then we are there ready for the Monday, ready for what we have to face.

We have a real issue with the fact that any time off Jerry has, he will not be earning, and I will be on Medical leave, which I will have to wait at least 2 weeks for any money to come through, maybe longer.  Of course any journeys Jerry makes to Halifax in a Truck that guzzles the gas (petrol) almost eats up any money he will earn in order to drive back and forth.  So a catch-22 situation.

Share on Facebook

Posted under Gemma A S.

Where do I start? He did not introduce himself, but I had found him on the Dalahousie website, and there was a photo fo him, so I knew what he looked like.  He assumed that the people in front of him were the ones related to the paperwork – I presume.  He said he was going to check the scans, and I asked if I could come too, that I needed it to be real, confirmed, and he said he would bring them back to show me.  My Right Kidney is small, and the tumor is almost bigger than the rest of it, and he said if you had to choose this would be the one to remove. The left kidney is picture perfect, just like in all the anatomy pictures, and large in comparison. He was very short shrift, it’s a tumor, it’s got to come out, we will do it laprascopically, and then you can get on with life.

I pretty much forgot my list of questions.. Doh! I did ask if it was Cancer - he said there was very little doubt. I asked about the mark on the liver, he circled the word ‘hemangioma’.. I asked would he be checking, and he said no not at this time. I asked was it likely to be related – he said highly unlikely. He said the regular scans will pick up on it if it is something to be concerned about. He actually asked did I want bad news.. he said I was among the 95% that have the kidney out and that is the end of it.  But it was like pulling teeth, the whole process. I asked did I need to see the Oncologist, and he said ‘what so that they can tell you it has to come out too’.   I asked how long it was likely to have been there, and he said they normally grow about 1cm a year, so possibly 4 years, which is while we were still in France. I asked what would I need to do afterwards in terms of meds, and he said I wouldn’t need any. He does want me to have a chest X-ray so he can see the to half of the lungs, and I will go get that done on Monday.

He said he wanted me in for the op in a few weeks time, and then I asked will I be able to go to Toronto for Thanksgiving, and he was nodding no.. so then I said my sister asked if you can do this after, and he said yes of course, enjoy Thanksgiving and we will see you straight after. Then I was worried and kept asking was he sure, and he said positive, a few weeks will make no difference.

So one of his specialties is laprascopic surgery, and he said he would only do radical if they couldn’t get a kidney out, or if they nicked a vein and needed to stop the bleeding.  I asked how long I would stay in, and if he can do it this way a couple of days, and the recovery time is ‘not long’.. so I do not know what that means.. ‘not long’.

Jerry was touching my arm for us to leave the room, the Dr was stood up ready to leave the room.. and I wasn’t done yet.. and my list of questions was still there, but leave we did.  After I was cross for the next hour of the journey home, because I didn’t get anything from him to give to Human Resources at work.  But I know I have time to get that sent to me.

So the consult was not what I expected, and guess what – I do not have oedema, I have 20 pounds of something else.. might just be age catching up with me. He did make a joke that maybe I would lose 20 pounds when he removed the kidney.  At least now I have a focus for the next month, a diet, haven’t needed one of them in about 7 years if not longer. So all this complaining about oedema to my GP, and the heart specialist got me to this guy, who agrees with the others, you do not have oedema –  but the complaining found this, so one has to be grateful for that.

Share on Facebook

Posted under Gemma A S.

This weekend was nearly proving to be another non-weekend.. but some of that with using Hurricane Hanna’s tail end might have been an issue. 

It might help if I say here that we live in a house in town (Port Hawkesbury), but we recently bought a house in Melford about 20 minutes out of town with 5 acres of land. We are going to be working on it, and aim to move in next Spring if not before. Of course that was before the latest news, which probably means it will defnitely be next Spring.

On the basis that today it was going to rain a lot, and we were going to stay home yesterday, and then go up to the other house today, so we had our Sunday Roast yesterday. So having watched the Grand Prix at Spa (big fan, excellent race btw) first thing, we then went up to the house.. and I painted a pretend brick wall a strange darker shade of green, and the other three walls a lighter green.. and feel much better for achieveing that.. as in completing it.  Jerry was continuing his work on  the wood floors, which is proving quite hard to get down to the wood.  All this gives us a sense of normality if nothing else. Having said that I aquired a muscle pain in my right thigh, and found that my leg almost gave way under me putting weight on it sometimes.  And it doesn’t seem to be going away, but this task here does not require standing, so I am quite fine.

Finding the Kidney Cancer Resource site and forum, and the Kidney Cancer Canada site and forum have been a great help to me. Being able to read about the challenges other people have been through, and the support they can give when you are just coming to terms with it all is pretty up there for me right now.

I have been spending time finding out about what may be ahead of me, checking out who my consultant (Dr Joseph Lawen) in Halifax is, what he specialises in – Transplantation and Laparascopic Surgery. I have been given the name of an Oncolgist there in Halifax too, even been told what sort of questions to ask, and if he doesn’t have the answer, to ask for a referral to the Oncologist.

I also keep re-reading my reports, and try to see the positive side of things, the fact that by all accounts it is contained withing the Right Kidney, and has not spread.  I think it all hangs on this 7mm something on the liver being totally unrelated.

So this week, will be the count down to Friday’s appointment.  We drive a truck, which will guzzle two tank fulls of gas going to Halifax and back, so we are going to hire a small car for the day, even with the hire cost, it will save us money.

Share on Facebook

Posted under Gemma A S.

This was written as a followup on the KCR site on 8th September, 08.

I pretty much had a non-weekend last weekend, and it was a 3-day weekend, and pretty much wasted on me. Spent my time right here, delving for more information, and frightening myself. I was then talking to someone at work, about it being the not really knowing, was the hard part, and they suggested I go back to my own Dr, to just chat, and ask for more information from the report.

So on Thursday, I went back to see him, and he even gave me a copy of the Ultrasound and CT Scan reports. He said that the way the report reads, it is pretty conclusive that it is RCC, but that the good news is that it is contained within the Kidney. The spleen, adrenals, pancreas, lung bases are clean, and no vascular invasion. . There is however a 7mm liver lesion, which verbatim says ‘ may represent an hemangioma although metastases cannot be excluded. An MRI may be useful for further assessment’.

The Dr said they would chase up for my referral appointment, and I now have that, next Friday 12th September, at 2:10pm. I have been told by the Dr’s office that this is just a consultation with the surgeon, where I come in for the appointment and go home afterwards. It was almost amusing the way the lady spoke to me, but they must get people who almost think that this is your OR date, and need it spelled out to them. It is a stressful time.

I am doing better psychologically, but still have my moments where crying is the only way to deal with how frightening all this is. Other times, I am so in control, and planning for not being at work, making sure that everything is in place so that I do get some money while I am off. I have put the wheels in motion to upgrade my medical health insurance to Enhanced, which will cover 100% of any prescriptions. I had looked into who helps when your medical cover does not cover enough, and have found a man who can. So really thinking of the practical things, so save any panic later.

My husband and I have talked and talked through what is ahead of us, and I think accepting that the surgey is inevitable has been a big help. We are now dealing with practicalites – like a half door on the bedroom, that give the cats access, but will keep our 2 dogs out. Currently, our two dogs live a life of luxury, but have a tough lesson ahead, but I don’t want to keep the cats out, as they will be comforting to have next to me.

My sister in Toronto has arranged for us to visit her for Thanksgiving 10th – 13th October, so sadly one of my questions to the surgeon will be, can we do this on the 14th? but as the Dr’s office said, he ultimately decides how quickly the surgery has to be done, and I may have to forget going away at all.

Share on Facebook

Posted under Gemma A S.

This was my blog started on the KCR site on 2nd September, 08

My name is Gemma Angharad Shoebridge, I am 52, am from Wales, but now live in Nova Scotia, on Cape Breton Island. I am married to Jerry, who is from Bristol, and we have been together almost 15 years. I have one sister and she lives in Toronto.

I have gone from having Pneumonia in March 2006, and it seems as a result of that have now been diagnozed with PSVT, Paroximal Supraventricular Tachycardia.. a not too serious heart Arhythmia which I now take medication for.. this was in the June/July just gone. Due to my making my oedema the main priority with my heart specialist, as if everything begins and ends with what the reading on the scales reads.. prior to final diagnosis he arranged for an Ultrasound. I had to wait a few months for that, which was a week ago, on 25th August,08, when I discovered that it was a Kidney and bladder ultrasound I was having, I suppose the drinking a litre of water before hand should have been a clue. While in the washroom (the loo), the technician disappeared and then came back after what seemed a long time, and said to save us having to drive all the way back again, she had checked with the heart specialist if he wanted them to do anything else while I was there.. so there I was having a CT scan. Everyone looked after me wonderfully, and off home we toddled, thinking they had saved us a journey back and forth to the hospital.

Following on from that, Wednesday morning, 27th August, Jerry tells me that Dr Ben.. my GP, had called the day before wanting to touch base with me. So got to work and called him, and he quietly tells me that he wants to touch base with me, to make sure that I am being taken care of, to deal with the suspected Kidney tumour – and that is how I found out what my current situation is. I was then due to go in to see him the next afternoon, but after calling Jerry to come get me, so I could tell him, I then called the Dr’s office again, to say I had to see him that day. Subsequently I had the report read to me.. that there is a large solid mass on my right kidney, and a 7mm something on my liver. He had unfortunately thought that I had seen the specialist on Monday, and didn’t realise that he dropped the bomb over the phone.

So now I have been referred to Halifax, and have 2-3 weeks to wait for that appointment. Having really told everyone that needed to know, except my mother in Wales who is 84, and don’t really want to tell her until I have a definitive answer. 

Share on Facebook

Posted under Gemma A S.