Canadian Cancer Society Event - Friday 26th September, 2008 I was told by a colleague that there was an event reported by the local radio station, with a number to call. So on Friday morning I called to see what it was about. Turns out that all the Board Members for Nova Scotia were going to be there, and they were trying something new. Up to 3 Attendeees would sit with a Board Member for about half an hour, and have a conversation around a particular question. I really wasn't sure whether to go or not, as Jerry was working, so I would be going on my own. But the lady said, because I was newly diangnozed, and moving through the maze of who could help, it would be very useful for the board to here my story.

So along I went, and they started with a presentation, and then a facilitator took us through the process. It was I think mainly attended by volunteers, who were cancer survivors, or had a family member that had cancer. It was an interesting evening, and people were very kind. During the closing everyone but Board Members were given the opportunity to say how they felt about the evening, so I did say a few words, about the fact that the event made you feel that the Board was prepared to listen to people that needed help, or had something to say about what they could do better. Then the Board Members decided to speak in turn, and two of them gave me an accolade for attending, and sharing my story, and telling me that they would be there for me.

Even though this was musical chairs, you didn't quite know where you would end up sitting next, I ended up sitting with the same attendee twice, a lady called Alice, whose husband was 88, and had lung cancer, but was doing very well. The first time the Board Member said that in my circumstances, with not having any family here, other than my husband, what I needed was a surrogate Mum, and Alice was in that initial group. When she joined the final group I was with, and with the closing speeches, she passed me a paper with her phone number on it.. and I returned the favor. She said to call and come by anytime for a cup of tea and a chat. When everyone got up, and were making for the door, I got so many hugs from people, it was amazing, and very comforting. The Board Member I sat with initially, doesn't live that far from me, and she swopped email addresses with me, and asked if we could keep in touch.

And then yesterday when I was in a shop in town, a lady that worked there said she had seen me the night before, and asked how I was doing etc.. and then mentioned the Board Member that lived near here, and turns out that she had lost many family members to cancer, had had preventative surgery because of that. Looking back she was so bright and bubbly, smiling and so giving, and now knowing some of what she must have been through, I find that truly amazing, that she still have something to give: she has not given in to any of it.

When I originally called up about it, I got an email with lots of information, and contact details for someone that could help with accommodation in Halifax, amongst other things, so I had made that contact Friday. The Canadian Cancer Society has a 34 bed accommodation across the road from the hospital: called 'The Lodge that Gives', free to patients, and then $55 per person, no tax, and meals included. So they are going to let me know tomorrow if they have availability for when I go for surgery. This way Jerry and my sister will have somewhere to go for a break, and know they can have their meals, without having to go to an expensive restaurant or something.

It is now 3 weeks to go to surgery, and so recently it was 5 weeks to go (I had thought it was 4), and then after a week when I checked it was still 4 weeks to go, and suddenly from the clock feeling as if it had stopeed, I think it started up again.

Surgery Date is Set! 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.

My Consult with the Urologist on Friday 12th September, 08 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.

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.

Will update more when the consult is behind me. Would it be better to have the blog outside of this site??

I am taking up the suggestion to start a Blog, to track what happens from here on, so that it will help me remember all the challenges that may be ahead.

So 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.

IF YOU ARE NOT USED TO WIKI STYLE BLOGS. You can click the tab discussions at the top to conduct a conversation or leave messages for Gemma & she can see them there next time she visits.