Back to Bed

I don't feel very well...

How many times have I said that in the past, when I've had a cold or a bug of some kind and usually it is just that and after a few days I'm back to right. However a week or so ago when I started to feel poorly I said nothing. As I began to feel worse and this became evident to my family I had to admit something was wrong. In the past - by that I mean pre cancer, there was a rational voice in my head telling me that it was probably just a virus and I'd be feeling much better soon. However, this being the first time I've been ill since well, being ill...the voice in my head  was more than a little irrational.

As documented in this blog, I have suffered with back pain since surgery and this is on the side that I have a remaining kidney. Last week the pain increased and I felt very sick, I was also quite feverish and lacked energy. It got so bad I had to take to my bed which was strange as I was transported back 6 months to when I spent a lot of time there in pain. In the same way that things often seem worse at night, I felt worse being in bed unable to do anything and my mind worked overtime. What if it is back?!

A trip to my GP was inconclusive as there really wasn't anything he could do as my symptoms could mean a virus. Also with a CT scan in the next couple of weeks it was best to see the outcome of that. He was extremely understanding and could see I was feeling awful though and asked me to return this week (which I will).

Yesterday was the first day I've felt relatively good again and today is that little bit better. I've shaken off the 'sorry for myself' feeling and put to bed the negative thoughts, a lot of which came when I was feeling my worst. The pain has eased and apart from the usual backache I'm not too bad at all. I've not eaten much for a week as my appetite disappeared and I've lost about half a stone which I didn't need to.

I will have to rethink my dietry changes now as although I'm sure they weren't the cause of this latest illness, my health hasn't improved by eating healthier foods. Maybe moderation will have to be my new mantra.

Either way I'm happy to be feeling well again and thankful all over again for my health. 

Bone Scan

By the time I went for my bone scan I had stopped writing in my journal so this is from memory. The scan took place in May about 2 months after my surgery and was recommended by the consultant surgeon due to continuing back pain.
I turned up at Good Hope hospital that morning with my daughter and was taken into a small room in the Nuclear Medicine Dept where a nurse put a canular into the back of my wrist. Once that was done a specialist came and proceeded to pump in something she referred to as 'stuff' and said it was the best way to describe it. The 'stuff' would flow around my body and enable the scanner to pick up what it needed from my bones (or something like that). Obviously I am not familiar with any of the technical detail of what is involved so if you want to know more check out this piece on patient.co.uk
Once the stuff was flowing around my bones I was allowed to leave the hospital for approx 90 minutes during which time I was advised to drink plenty and most importantly 'keep away from small children/babies and expectant mothers'. Apparently this was due to the slight risk of radiation I was carrying which would mean I could give off gamma rays. For the next few hours I was a SuperHero...
With time to kill we went off to have lunch in the nearest Wetherspoons where I sat near a door and looked menacingly at any parents with children or ladies with large stomachs (the fat or pregnant question arose often...)
Back at the hospital I was taken into the room with the scanner and asked to climb on the bed, fully clothed. The specialist then explained that the scanner would come down so close to me it would nearly touch my face and that I shouldn't feel alarmed. She then made sure I was positioned correctly and left the room. For the next 20 minutes I had to lie perfectly still while this huge machine lowered itself down and moved across my body, it was a bit freaky and although I'm not claustraphobic I felt as though I was going to be crushed!
When the scanner had taken all the images it needed the specialist returned to the room and I was told I could leave. Before I went she told me that when going for a wee I must flush the toilet twice after myself as a small amount of radiation may be left, bizarre! Also, I must steer clear from Mums to be and little ones for the next 48 hours.
That night I had the feeling I may be glowing in the dark but no special super hero powers presented themselves.
The results of the scan took a few weeks to arrive and as the saying goes, 'no news is good news' I was sure had there been anything wrong I would have heard.  About 6 weeks later, which was over 3 months post surgery I received a letter. It was from the consultant and contained the information I'd asked for about my operation 3 months ago, seriously! It was brief and to the point AND at the bottom of the letter in hand writing was scrawled, 'bone scan normal'. Now I have to emphasize once more, I am more than happy with the work of the consultant and his team and extremely thankfully to them. However, when it comes to information and the way it is given, the words 'could try harder' spring to mind.
The main thing was that my bone scan had been clear which was excellent news. Unfortunately, the back pain continues so of course does this blog...

The Ketogenic Diet Begins...

Until now I have never been on a diet. Nor have I entered a gym. Exercise for me was part of daily life, working, walking, cleaning, dog walking etc. I suppose I have been fortunate not to have needed to exercise for weight loss or health gain but only for pleasure and necessity.
Now however, I am having to watch what I eat and drink, not only because I have one remaining kidney to take care of but also to ensure I don't gain weight as a result of lack of exercise. Since having cancer I have not returned to 'business as usual' in as much as I can't walk, work, clean or dog walk at the same rate as before. At my age (45) it is inevitable that I will start gaining weight - in all the wrong places IF I don't do something about it.
Lately I have benefited from others going through the same, in particular Lisanne Vos' Blog RUKidneyingMe which includes health tips and recipies for a healthy life in the 'Mono Kidney Club'. Another source of healthy knowledge has come from Elaine Cantin's book The Cantin Ketogenic Diet - for Cancer, Type1 Diabetes & other ailments. This book has been kindly lent to me by Sharon Fox Cancer Centre I have also gained a wealth of useful dietary information from the James Whale Kidney Cancer Fund site
I must admit, I am still a believer in the philosphy that 'A little bit of what you fancy does you good' BUT I am currently taking advice from these sources and using what I can. From this I will record the dietary changes I can make and hopefully stick to in order to improve my healthy diet.
So, here I go and first on the Prohibited Food List is Alcohol, one of the benefits of which will be that I'll not sing on a karaoke without it again...!
Ok what's next...

Sharon Fox Cancer Centre on Surprise Surprise

If you have been following my blog so far you may be interested to see the Sharon Fox's appearance last weekend on prime time UK TV Show Surprise Surprise
If you would like to support the centre by purchasing a calender you can visit the site here at Sharon Fox Cancer Centre
You can also listen to Sharon's interview on local radio TCRFM

The Sharon Fox Cancer Centre Tamworth

I hesitated at putting the title 'Coming Out' for this post as for me, admitting to and telling people about my illness was a big thing to do. Having kept my cancer news on a 'need to know' basis, for several weeks only closest family and friends were aware. Eventually I used the necessary evil that is Facebook to post a brief 'guess where I've been...kind of message' as this would filter to both friends and acquaintances which in turn meant I wouldn't have to tell them personally. The response shocked me, so many people left lovely messages and sent kind wishes, I was quite overwhelmed.
The next step was to get back out and about, I wasn't back to work and so needed to show my face and start going about normal life again. Having run a creative business I was aware that the local cancer charity centre, run by breast cancer patient Sharon Fox held an Arts & Crafts morning once a week. I figured I could go along and get involved, maybe help out. I'd visited the centre before my illness a couple of times but then it was to drop donations or concerning involvement with the charity as a business. This was different - now I was one of the gang!
Sharon was aware I'd had cancer and had herself left a lovely message in response to my facebook 'announcement' so I contacted her beforehand about joining that weeks group. When I arrived outside the centre I was suddenly overcome with all kinds of emotions, fear, anxiety, sadness and panic set in. Once I step through that door they know, I've had cancer. I'm not dropping off a donation, I'm not running a workshop, I'm there because I've had cancer. It was as if the news had hit me all over again and the denial I'd been in was futile, the people behind this door could see through the bravado because they'd been here too.
As I stood outside another lady arrived and as if via telepathy greeted me and opened the door, ushered me in as if we were old friends. Once inside Sharon was there and I was effortlessly introduced to the ladies present (no mention of the C word) just that I was joining in the session that morning. We stood and chatted and then went through to the room where Maggie, who was there to help proceeded to show me some of the art they were working on. So far so good. It was warm and relaxed and I was talking about things I could relate to.
Then it hit again and I can't explain what or why. It was as though I was looking at the activity and hearing the chatter from a distance. The tears started to fall (incidently they are falling now even thinking about it) and I stood and cried. For the first time, outside of my home or a hospital bed the emotion was overwhelming and I let go of some of the fear I'd been hiding.
Maggie comforted me and said all the right things before another couple of ladies offered me a seat in the office for a chat about how I could help when in fact, they were helping me. By this time I was able to articulate how I felt but no explanation was needed as again, they knew. I don't think I made any firm offers of help that day but by the time I left I was strangely empowered. I'd done two of the things that I hadn't done yet, cried in public and talked openly about my experience and I was ok. 'It' was ok. Cancer had taken my kidney and knocked my health about somewhat but I was still here.
Since that visit I have returned to the centre. Admittedly one of those visits was spent in the car park and I didn't leave the car....bad day. However, on the other occasions I wasn't the 'new girl' and saw first hand both men and women enter the centre and speak of their illness, this is a most humbling experience. To witness the work done at Sharon Fox Cancer Centre is emotional whether you are a patient, carer, volunteer or visitor you can't help but feel part of this wonderful place.
This is my way of saying thank you.
Sharon Fox Cancer Centre

The Verdict

I've returned to where I left off with my kidney cancer journey and having had to revisit hospital with a suspected blood clot after my surgery, I was determined to steer clear of the place for a while. However, I was still anxious to see the consultant surgeon who had performed my nephrectomy and find out if they had discovered anything from the subsequent biopsy of my tumor. This appointment seemed ages arriving, it was actually 6 weeks but the time dragged as in between there was no one to give the answers I needed.
The appointment was at Solihull Hospital and it was at a urology clinic. After a wait of over 3 hours (yes 3) my name was called and I was finally sat opposite the man who had saved my life and removed the cancer and my kidney. We had met previously of course but this was different, this time I was minus a tumor and out of a hospital bed.
The consultant examined my wound and read the notes from the previous admission for suspected blood clot and wound infection. The scarring wasn't pretty but he was satisfied it was now healing well. He asked questions about my general health and well being which were difficult to answer as I wasn't sure if how I felt was good or bad considering my surgery. Personally I still felt pretty rough and was in a lot of pain from my back - conversely the opposite side. The consultant though said this was all relative to what I had been through although he was concerned about my back pain. He didn't think it had anything to do with the surgery and recommended a bone scan as a precaution.
Then it was our chance to ask questions, my husband was with me which was wonderful as during my admissions and diagnosis all news had been broken to me alone - not by choice. We asked the obvious questions, 'has the cancer all gone' and 'will there be any more treatment'? The answers were pretty much what had been said previously, the tumor was encapsulated in the kidney and had been removed whole, therefore it should be all gone. While 'in there' they had poked around to check surrounding organs and no evidence was found of anything else sinister. As kidney cancer is not generally treated with chemotherapy or radiotherapy there would be no further treatment but I would need to return for regular check ups and CT scans. When asked how long this would be for we were told, 'as long as there's a national health service - indefinately'. I was of course now a renal patient as well as a cancer patient so this I suppose made sense and was reassuring, I was on the radar!
The BIG question of  'is there a chance it has spread' was answered in this way. The consultant took a pen and paper and made a dot on the paper, he said, 'right now there could be a tumor this size inside you, we wouldn't pick it up on a scan and you wouldn't know it was there. You have the choice to leave here and worry endlessly about that or you can choose to go out and carry on living your life as best you can. I suggest the latter'.
Well, that may sound abrupt and a bit too graphic but, it's true. He went on to say that so many elements of our daily life can cause that one cell to go wrong, what we eat, drink, breathe etc. I was at least going to be closely monitored and lets face it, had been walking around for God knows how many years carrying the cancer inside unknowing.
Another BIG question was of course, 'how did it get there?'. I mean, obviously I don't want it back and I wanted to find out if my lifestyle could have had any effect or, more to the point how I could possibly avoid a recurrence. At this stage I was still pretty ignorant of kidney cancer and knew only the statistical figures and they told me it was uncommon in women of my age and was not a well known cancer compared to others. The consultant gave another succinct answer... He said, 'walk into any children's ward where you may find young people suffering with cancer and ask yourself the same question, why them, how come, what caused this?' In other words, if we knew the answers we'd all be better qualified to avoid this awful disease, sometimes there just aren't any reasonable answers and if there are, it's often guesswork.
I left that day together with my husband in the knowledge that everything that could have been done, had been done and nothing was being left to chance. We realised why our wait had been so long, the consultant had spent time explaining thoroughly all we wanted to know, no complaints there.
The next step was a bone scan. In the meantime I could worry about that small dot on the paper that could be inside right now OR I could get on with the life I'd been given thanks to medical intervention and thank God I was here.
I chose the latter.