What’s new in Nova Scotia?

It has been so long since I posted to my blog, I don’t even know if this is still active as a site. Someone please tell me if I should be starting a bog somewhere else.

The latest news is that both scans this year have been clear.  My Creatinine is down to 90 and eGFR up to 57. I was seeing a Nephrologist for a few months, who was watching my cholesterol, but that is now down under 2 so he did not want to see me again.

I have however been laid off just over a week ago, and didn’t see it coming. I have immigration issues, and can’t work anywhere else, and my not get unemployment.

I am using my time wisely I hope, taking care of my chickens, cockerels  just learning to crow.. oh and I have a DVD called punch up your walk, and am building up to a 4 mile walk every day, exercise I was not getting while working.

Posted under Gemma A S.

This post was written by Gemma A.S. on October 22, 2010

There is no evidence of metatistic disease!!!!

Panic over, all was good with the scan results.

However, with my Creatinine level a little raised I am being referred to a Nephrologists.. Creatinine is at 112, eGFR is at 44 and UREA (BUI) is at 8.5.    And the Nephrologist is in Internal Medicine, and turns out the same Dr that I was referred to for my racing heart, and who even though I was on heart medication, and I was still up 20 pounds.. sent me for the original scan that found the tumor. So I have faith in this guy.. my GP said he may suggest medication, or just a change of diet.

I feel huge relief, I cried when he told me the result.. and  he said ‘no this is good’ but it was just the relief.

Posted under Gemma A S.

This post was written by Gemma A.S. on February 22, 2010

Nerves are shot, waiting on my result!

I had been getting nervous knowing my followup scan was looming, and went for the CT Scan of Chest and Abdomen yesterday morning, so now a case of waiting.  I am hoping my own Dr will have them on Monday, as I don’t see the Urologist until March 5th. 

When I got there I noticed that the requisition had ‘with Contrast’, and I said I don’t think so.. so they telephoned and checked and sure enough – no contrast.  I realise that if I wasn’t keeping an eye on things, they would have gone ahead and given me the die.  On the requistion I also noticed Creatinine 112, up from 95, and I was not expecting that.  I realise that I have not been drinking hardly any water.. just tea, which I am sure will be why it is back up a little. 

Of course the fact that it is up, is not helping with the nerves, as you wonder if there is something else going on.

I feel very selfish posting yet again about little old me and my problems, whereas the other posts are about N.I.C.E. and all the issues with them, but at scan time, this is seemingly all I can think about.

Writing this is kind of therapeutic for me, writing down the fact that I am anxious about the result, will hopefully take away a little of the stress.

I did recently go for a reading with a Numerologist who is also a psychic, and she said that I am healing, she even said that my aura colors are healing, this is without her knowing about my history. So I am holding on to that, and hoping she was right.

Will update again next week, once I have my result.

Guess what I am doing right now, Drinking water like it is going out of fashion, at least the Creatinine result has been a wake up call for me.

Posted under Gemma A S., N.I.C.E.

This post was written by Gemma A.S. on February 19, 2010

Six-Month CT Scan looming on the horizon!

I can’t believe how long it has been since I updated the blog.  Maybe it shows that I have been getting on with my life.

I am involved with the suvivors sub-committtee for this years Relay for Life, and the friend I made at last year’s relay is with me on that, which is great.  I find it is good to have  someone to talk to about your concerns.

My last scan in August showed no change, the suspected hemangioma’s on the right liver are still there, just watching for changes.  My Creatinine was down to 98.. and then later down to 95.. so am having another blood work in a few weeks so will see where it is at then.  I have my scan mid February, and then see my consultant in Halifax on March 5th.  Have decided to go see my own GP to get the report before seeing the consultant, so I don’t drive myself crazy with wondering. 

My husband has a birthday the following week, so since the 5th is a Friday, we are making a weekend break of the trip to Halifax.  Just hope that the news is good not to spoil the excitement over the weekend away.

We have had a busy year, working on a house we bought the summer of 2008, just before my diagnosis.. and over that winter all the pipes burst, while we pretended it didn’t exist. So this year we have been fixing up all the damage, and hoping to move fairly soon.  I found being busy stops me thinking too much about the cancer.  

We have a hoop-house (Polytunnel) to put up at the end of winter so we can start growing our own food again,  and a chicken house to build, and get a cockrel and some chickens to join us there.

I have an Uncle in Wales in his 70′s that had what seemed like symptoms of a stroke on New Year’s morning, then a week later a similar event.. and subsequently a scan showed a brain tumour, and that is out (80%) and now facing either chemo or radiation therapy. I feel very lucky to have had my kidney out at a point where the tumour was still encapsulated within the kidney.  I know we all deal with what is thrown at us, and find the strength to do so, but very glad that I have not had to face that yet.

Posted under Gemma A S.

This post was written by Gemma A.S. on February 1, 2010

Update from Nova Scotia

Well here I am 5 months on from quite a saga in Cardiology this past January.  I had a recent followup abdominal CT scan which came back clean, and feel entitled to feel well.  I am have also had a recent blood work, which I am waiting the results on, as my last Creatinine result was from January at 114, and have no idea how I am doing now.

Apart from a bit of a dip emotionally for a few months for no particular reason, I have been fine, however that dip drove me to the Cancer Society’s Cancer Connection, where they match you with a peer who has experienced the same. That proved a good thing, as that was support just when I needed it. I was also involved in the Relay for Life here in town, and was in the Survivors Dinner, and the Survivors walk, as well as part of my company team.  I met someone who had also had their right kidney out.. and it was during the Survivors walk.. and you know how people never ask you directly about your cancer, they just know you had it and don’t really want to ask.. but this lady came straight out and asked.. and she had had the same, with some further cancer elsewhere.  But as we walked we hugged each other, and felt we had been fated to meet all our lives.. it is rare to find someone with kidney cancer, so we feel we have found a new friend in each other.

The peer I speak to has suggested that from here on I should just get an annual organ scan to make sure that it has not popped back somewhere else, so that you can get on with life in between. This lady had her right kidney out when she was pregnant 18 years ago, was told she may lost the baby, however with breaking a rib to get the kidney out, the baby, her son graduated this year.  She is an inspiration to me that I can survive.

So life goes on, and am coming up to my first anniversary of the diagnosis in August, and this past year has been quite a whirlwind, and almost feeling that I can now get on with the rest of my life.

Posted under Gemma A S.

This post was written by Gemma A.S. on June 26, 2009

100,000 Mile Overhall is now complete!

I had been due to return to work in January, after having a laparascopic nephrectomy in October.   The issue with my heart that caused the cancellation of the first operation, was due to be rescheduled for sometime in the next three months.  I had a return to work date, and then suddenly Cardiology called and was going to be done on the 20th January, which moved my return to work date to the 22nd January.

I was on the table for the Cardiac Ablation for 5 hours, and I think I had 2 or maybe all 3 of the specialists that can do this, involved in my procedure, this specialists are the only ones in Nova Scotia, possibly in the Maritimes, so I was in good hands.  They kept checking if I was doing  well, and would give you more drugs if they felt you needed them.  All three Drs came by to see me, and confirmed that it was successful, and said that if I did decide to go back to the hotel, to make sure to come back and see them in the morning for a final check. Soon after they left my heart started racing again, I asked a nurse with 33 years service if that was normal, and she said yes, that I would carry on taking my drugs for three months and then get weaned off them.  This I was unaware of.  Next morning I went to see the Dr that had requested to see me, and I had an ECG done before he arrived, and my heart was in a race.  Apparently, when they fix a tachychardia, it is fixed, no more drugs it is instant.. and if they had known they would not have allowed my discharge..

So there I was so close to going home, and my husband went home on his own while I waited for them to find me a bed in Cardiology. That took some 6 hours – however as soon as I got to my room, a Dr came by with the result of my followup scan that was done the week before, which was clear, no change on the lesions on the Right Liver, which is what I wanted to hear. The next day the additional tests started, an Echo that was called a TEE, which involved a tube down to my stomach to take a closup of the heart, and then the next day an MRI to make sure that a fuzziness around my left eye was not a clot from the Ablation.  For me, to have the brain MRI also cleared any worry about the Kidney Cancer, and possiblity of Brain Mets, every headache is not a brain tumour, and this is very true.

I then waited until Tuesday, which was the first spot in the schedule they could fit me in. They checked the groin entry points from the week before, and thought they could hear some awry, and sent me for an Ultrasound to check for Fistula or an Aneurysm, and was quite a relief that it all proved to be fine. They thought this would be a quick 3 hours, go back in and fix it properly, but I still proved a challenge, and it took then over 5 hours.  I had so much Heparin that they had difficulty gettinging the entrance points in the groin to stop bleeding. That issue meant they kept me lying down for 4 hours before being able to lift my head, and be able to eat for the first time in the day.

My husband came to collect me once they gave the heads up that they have fixed it this time.  However they were all very clear that this can come back, but for now I am drug fee, apart from the aspirin to think my blood while my heart is healing itself.

So from having a racing heart diagnozed as PSVT, to finding a kidney tumour and having that removed, and then having excellent results from my followup scans and then the MRI, and now finally getting the atrial tachychardia fixed, once my energy returns, I will feel like a new woman… truly a 100,000 mile overhall.

Posted under Gemma A S.

This post was written by Gemma A.S. on January 29, 2009

To the Future!

I am now almost 8 weeks post surgery, and doing really well I think. I am planning on going back to work in the New Year, as no one thinks it makes sense to go back just before the holiday.

A few weeks ago I went to see my Urologist - Dr Lawen, and he was finally able to give me my pathology results.. the tumour was 3.5cm, a T1, and margins were all clear, the tumour itself was at stage 2, but it is now out, so I like to think that it is irrelevant.

We are taking life one day at a time, trying to now return to focus on the things we were thinking about before all this happened.. like decorating our other house. Last Wednesday we went there to strip wall paper and some painting.. but then the snow really started coming down, and I don’t think the ploughs were prepared, so we headed back to town following a very slow truck.. which was the safest bet. I wasn’t going to be one of the lunatics that were overtaking in the storm into blinding snow.

I had read that keeping a journal was a useful/helpful thing to do, so my husband Jerry bought me one, and I have started. The aim is not to write in it every day, but to just note important things in there.

I am now waiting for my scan in January that will take another look at the lesion on the Liver, and not really thinking about it much, as I don’t have a date yet. I am also trying the method where you allow yourself to only think about the (Kidney) Cancer for a set period every day, and I find that some days I don’t think about it intentionally, it is usually something triggers to make me think of it.

I want to now focus on getting on with my life, and that this was just something that happened and it is now over.

Having said that, I do feel grateful that I had good news, and feel that I must look to help others in some way.

Posted under Gemma A S.

This post was written by Gemma A.S. on December 21, 2008

Zipper being removed!

This past Friday I went to see my own Doctor, as it was almost 2 whole weeks since my surgery.  He was very happy with how my scars all looked, and then asked me to go to get more blood work done, and and ECG.  He then sent me to see his nurse, to have the staples removed!

Apparently they do not agree with taking all the staples out in one session, so it was a case of taking every other one out, and there is a round dozen left to be removed.  I kept being told it was not painful to have them removed, and I will say it was just a pinch I felt as they were taken out, but was when I realized that I had not taken any pain meds that morning, which would have taken the edge off it.  I was told quite firmly by the nurse, that pain meds are not addictive, and that there was no need to be that brave.

My Dr had not received any reports back from the hospital, so it will not doubt be this coming week before he gets the Pathology results back. I am eager to get what all the Dr’s at the hospital suspect, is that the tumour was confined and had not spread.

On Saturday, I went to the local hospital to have the bloods taken (essentially to get the Creatinine level) and the ECG, to see how my heart is doing after having half the Cardiac Ablation done before the Kidney surgery.

My aim is to get the Cardiac Ablation completed before I return to work, and hoping that Urology and Cardiology with cooridinate to make it easier to get it done in one trip to Halifax, to avoid having to do the journey twice.

My strength is improving every day, but I do go to bed to rest for an hour or two every afternoon, and I do usually sleep.

My sister who came down from Toronto on 19th October, the day before the surgey’s original schedule, finally went home on Saturday after 3 weeks. My Mum arrived from the UK on Thursday to stay for 3 weeks to take care of me, so I am in good hands.

Posted under Gemma A S.

This post was written by Gemma A.S. on November 9, 2008

The Deed is Done – Finally!

After several false starts, my Right Kidney was removed laparascopically on October 27th.

Having been scheduled for the surgery on October 20th, it had been a long week – On the original schedule I was there before 8am to be prepared and ready for surgery, and knew I had a 3 hour wait until 11am for my turn. 11am came and went, and by 11:30am I made myself comfortable across three chairs, and went to sleep. Midday came and I was being woken up, time to walk down the hall: hugs for Jerry and my sister, and off I went. Walked down to OR #12 right down the end.. and was asked to hop on a stretcher.. and was then told that they weren’t quite ready for me, that they would be back to me soon.. I was then on my own for half an hour, and eventually they bought out the previous patient… THEN… the mops and bucket parade were going back and forth.. and THEN EVENTUALLY… they remembered I was there… and YES they always knew I was there… BUT… too much time to think about things, cry to myself, feeling very alone… but now they were here to do the consent, and ask all the same questions all over again, mark my Right hand so they know which Kidney they were removing.. they asked me several times… and then I got worried and asked them … I hope you are not relying totally on my answer here, and relying on the SCANS to decide which Kidney to remove.   Finally, they asked if I was ok to walk into the OR, and I said yes… got settled on the table in OR, and everyone is introducing themselves, and chatting away.. the IV to relax me finally gets done.. and then the decision as to whether to put the additional IV in to monitor my heart should go in before or after putting me out, so the O2 mask went on and then taken off, and then Finally ON, and I was ready in myself, like this was it… and I then there is a lack of continuity, I just know it was cancelled due to my heart being too irregular, and the Anaethetist got nervous.  It was cancelled and I was being sent home… but fortunately a senior Intern said that since I had being given this IV, that they should take me to recovery and keep an eye on my heart… by this time I can’t stop crying, so my heart was totally, totally irregular.. I am angry that all this preparation had gone to waste, they knew about this and should have been ready for it.

In the meantime, my husband got a call from the surgeon to say the op was cancelled and I was being sent home. It took them an hour and a half before they got to see me.. as I was still in recovery. I think while all this was going on, they realized that sending me home was not an option, that since it was vital to remove the kidney soon, that they had to deal with the heart condition, so from recovery they took me to my room on the ward. 

That became the start of a very interesting week, I saw umpteen Dr’s, all trying to decide what was going on, and what specialists I needed to see. I got day passes to go shopping, or an evening pass to go out to eat.. but on Thursday 23rd October, I was prepped for a Cardiac Ablation first thing on the 24th. I probably had an hour’s wait before the procedure, but they were only able to do half of it. They concluded that the problem is in the top left Ventricle, and to go in there, you need blood thinners in order to avoid a heart attack or stroke, and my Urologist said that could not go ahead before the Kidney was removed, as it would cause increased risk of bleeding during that procedure. 

My op was now scheduled for the Saturday 25th October, when they only have one OR room in use. However, late Friday it was again cancelled, as due to an accident, the OR was taken up with 2 Kidney Transplants, and a Liver Transplant. The good news was that the Urologist changed his Monday schedule, so that I was first in on the Monday 27th October. On Sunday I was prepped and again ready for surgery.

Monday morning came and they collected me on my trolley, took me all the way to OR #11, where I had someone with me outside the room the whole time. By this time I had a ‘Dream Team’ of Urology residents that I had come to know and trust, and they were all there to make sure I felt safe and relaxed. My anesthetist of the day was Andrew a Scot, who loved ‘Dr in the House’ the old films of the 60′s, so he was an immediate friend. I did not have to walk into OR, and was transferred onto the OR table.. and after introductions to the nurses, they did not wait long to put me under.

In Recovery, I remember a resident asking the OR nurse how I was doing, and she said I had kep saying ‘I Made It, I Made It’, which made me realise what my mind set must have been going into the surgery.  The surgery had only taken 2 and a half hours, and after another 2 hours I was back on the ward.

My Urologist came by with his team later that day, to tell me the surgery had gone perfectly, and all I now needed to do was recover and go home. He only came by one more time one evening on his own to check on me. His ‘Dream Team’, well they came by every morning, and often times individually during the day, and felt cosseted by them.

I did have to go to have a Cardiac Scan (Ultrasound) the day after my surgery, and they ruffed me up pretty bad, to the extent that when I was back on the ward the air was ‘BLUE’, and 3 of my ‘Dream Team’ appeared at the right time to lift me back into my bed.. but apart from this Ultrasound, I really was well looked after.

I am a Survivor!

Posted under Gemma A S.

This post was written by Gemma A.S. on November 6, 2008

Feelings in Yo-Yo!

I am sure that all this is familiar to everyone who has been diagnozed with Cancer of any kind.. this good day-bad day yo-yo! 

Last Saturday, while having our first Sunday Roast of the weekend, Jerry was a little overwhelmed with all he is feeling about our situation. We turned that around by thinking of Dr Lawen’s positive comments on my case.. so that Sunday, we had a good day.  Monday, unfortunately due to a comment made in good faith on this blog, I panicked and got very upset, which took me back to my GP, to talk over my situation, my health background, my symptoms (none), and what is planned for me.  He told me that my Chest X-ray is clear, which is more good news.   He then proceeded to tell me that every case is different, that everyone’s background, and symptoms are different, that I have to take things stage by stage. However he has said that he will make sure that my Pathology results will get seen by an Oncologist, and that we will get Dr Lawen to check out the mark on the Liver during surgery if at all possible, and take a biopsy.

So Tuesday was an uneventful day, and life seemed normal. Then to today, Jerry was very subdued, wasn’t even reading this morning, and quite unresponsive when I talked to him. So I just started feeling that I really need him to be ok for me, basically I need him to be strong for me.  When he took me to work, I was already a bit choked about that, and then the road was blocked right by work, and then the divertion was not marked, and there just didn’t seem to be a way in to the site, and so that was the ‘straw’ that set the flood gates off this morning. So I walked the last stretch to work across the parking lot with the tears rolling down my face, and knowing that I was totally over reacting to the situation.

A friend suggested that since sometimes music sets me off, and now this, that maybe I should go on anti-depressants, but don’t feel that I have got to that point yet.

I don’t think it helps that neither of us is really sleeping that well, so that we find we are not refreshed when it comes to morning.  As far as Jerry is concerned, he had wanted to speak to his Mum on the weekend, but for some reason he only got to speak to his step dad, and his Mum is the one person I think he feels he can talk to about how he is feeling.

I know this blog is all about me, and probably seeming to be totally selfish, but at this point in time I feel entitled to be selfish, and to be totally thinking about what is happening to me.  I have read other blogs by Kidney Cancer patients or carers, and they are inspriring, and there to guide other people through what they may face during their treatment. I like to think that down the road that my blog will be more like that, and will be of help to other KC sufferers.

And Comments are still most welcome, I would like to think that the blog is read by others.

Posted under Gemma A S.

This post was written by Gemma A.S. on September 24, 2008