Thursday 2nd June 2016
Appointment with Dr. Lo
This morning I had my oncology appointment. We were delighted with the look of the place – all through my treatment last year, it was a bit of a shambles with a temporary reception desk surrounded by heaps of files and papers, and a fairly long walk to the temporary waiting room – there were major works going on as they were installing a new radiotherapy machine, and we never knew where we would be for each appointment! The new arrangements are very nice, with a smart curved reception desk with two levels – one for people standing up, and a lower area for wheelchair users which was great – I commented on this and said how much I appreciated it. In the waiting room beside the desk, they had moveable armchairs and low tables, so plenty of room to park the wheelchair. I have been griping in every department I’ve been in in the hospital, that in their waiting rooms the chairs are in rows, bolted to the floor, with no spaces for wheelchairs, so everywhere I’ve been, I’ve felt in the way! You’d think hospitals of all places would think of this…
Anyway, we love the new arrangements, and didn’t have to wait long to be called. Dr. Lo was delighted to see us both again, and said how well I was looking! This is getting to be like a cracked record… but a nice one! I don’t mind how often I hear it!
She asked how I was and I said I was feeling better than I’d felt for years, which pleased her greatly. I said that I had to keep reminding myself to pace myself because the M.E. was still there, but feeling so much better, I was wanting to do everything and kept wearing myself out and having to crash out for a day on the settee!
Regarding ongoing effects of the chemo, she wrote notes as I told her that the peripheral neuropathy continued to be a problem, but my hands were quite a bit better, with just some numbness in my fingertips, and putting my hands in hot water triggering pins and needles. As for my feet, they are still bad, and I need to wear socks in bed, or the friction against the bedding wakes me up. I said that the Lhermitte’s was 95% gone now, but I still had the urinary retention.
I told her that over the past few days I’d been measuring how much urine I was producing and how much was being retained and needing to be pushed out – first thing in the morning I’ve been producing a total of around 550 ml with about 100 ml being retained, and during the day, between 200 and 300 ml with between 25 and 75 ml being retained. This averages out at a total of 370 ml with 57 ml being retained, or about 15% retention. She wrote down all this information, and said that as long as I was managing to produce the retained urine on my own, even with some effort, there was no need for me to be referred to a urologist or to self-catheterise. I said I was aware of the risk of infection, and was drinking cranberry juice every day, which she agreed was a good thing. However, she said that if the problem were to get worse, we might need to think again.
I do not think this will happen, though, because it’s all part and parcel of the same nerve damage caused by the chemo, and this will eventually heal. She said that peripheral nerves take a long time to regrow, and that it’s natural for my hands to be the first to recover because the distance from the central nervous system is less, but I could expect still to be suffering from PN for several years, with my feet being the last to recover. Because my hands have improved, I am hopeful that the bladder and feet will recover too, and I just have to be patient.
She then went on to discuss my blood results. We haven’t really talked about this before, other than for her to say that everything was OK, but I asked this time for more definite information. Regarding the cancer markers, these are proteins present in everybody’s blood, with 3.5 and below being regarded as normal, and everybody has some, but at this level it’s not a matter for concern. Anything higher and they would be anxious – higher levels could indicate the presence of a tumour, and changes in the levels would indicate that the tumour was growing, remaining static or diminishing. She said that last time, the level was 2.5, so well within the normal range, and this time it was even better, at 1.2, so I have done very well indeed, and it certainly seems to indicate that there is no longer any cancer in my body.
She said that they also tested my liver and kidney function. Last time, my liver was a bit below par, but this time it was back up to normal, and my kidneys were fine, too. I asked about my haemoglobin level because of the chronic mild anaemia from which I was suffering before my surgery, and she said that that was normal, too.
So it’s all very good news. We talked about my having a further CT scan at the end of the year, and she said she would like to see me in about 6 months, so we made an appointment for Thursday 24th November, and again, the receptionist gave me a letter to take to the GP’s surgery, and I need to make an appointment for the previous week, to have bloods taken.
TV Series About Cancer and My Thoughts for the Future
The BBC, in association with the Open University, has just started a three-part series entitled “The Big C and Me,” following several people as they undergo treatment for cancer. I watched the first episode today, having set it to record. I found it incredibly moving, and many memories of last year came flooding back. It’s so strange the things you forget – one lady was just starting her first chemo and the nurse told her that as the steroid first entered her body, she would be aware of a sensation of a prickly bottom, like sitting on a hedgehog! I had completely forgotten about this, but then remembered it so well!
The presenter of the programme is also a person who has, or has had, cancer, and in her introduction she described it as being like a large community with new members being added daily, and ended her introduction by saying, “Welcome to our world.” This is certainly how I feel about it. There is an amazing camaraderie between members of this exclusive club and nobody who is not a member can fully understand what it is like – the shock and numbness on first being diagnosed, and how the world shifts in focus, and sometimes becomes even more sharply focused; the emotional rollercoaster where one minute you feel so positive and just know everything is going to be OK, and the moments of being just plain shit scared, and the thoughts that go through your head in the dead of night… the times of feeling really low and feeling so physically horrible because of the chemo, and wondering how on earth you are going to get through this… the intense feelings of love and gratitude to your spouse and loved ones for their continuing support, love and encouragement when they themselves must be in anguish and fear, and worrying about what the future might bring… the moments of intense joy as you stand still and appreciate the small, often unobserved and beautiful things in the world all around you… the overwhelming gratitude for just being alive… and the gratitude for the professionalism of those responsible for your care. These incredible, wonderful people don’t just use their professional skill and knowledge to do all the physical things necessary to help you beat this disease, but they do it by giving of themselves, with cheerfulness, empathy, friendship, getting alongside you, and even love. I have seen nurses’ faces light up when I have entered the Ricky Grant Unit bearing cakes for my fellow-patients, and delight in my continuing recovery and healthy and happy appearance. They really do care, and words cannot describe what it feels like to be on the receiving end of that.
A couple of weeks ago, I re-read this whole cancer diary. Looking back over the past year, what came to mind was all the positive stuff, and I remembered various people saying how helpful it was that I had been completely honest and written about my negative experiences and feelings too, and I didn’t really remember about those till I re-read the diary! Memory is so selective. I am glad that we tend to remember only the good bits, but on the other hand it’s very good to read back through it all and remind myself that it wasn’t all a bed of roses, because to keep that knowledge in the forefront of my mind helps me to be more empathic towards others going through it, to show them that I do know what they are going through and how it makes you feel. Even after being given the all-clear, we are all in the CC (Cancer Club) together!
When my chemo finished, so also ended a period that was characterised by incredible highs and lows emotionally. To start with I felt a sense of loss that it was all at an end, because it had been my life for a whole year, and I was treated like royalty and given the absolute best of everything they had to offer to help me on my way to recovery, and suddenly it was all gone, and I was “ordinary” again. Someone on one of the forums I am on said, “Surely it is better to be ordinary and cancer-free than a VIP with cancer!” How right she was. That feeling didn’t actually last very long because with the advent of this new year to mark the beginning of my new life which has brought a new perspective on everything, life has become interesting and varied and fun again, as I pick up the threads of my old life. However, it’s my old life transformed – I have a new perspective on things after being confronted with my own mortality through a serious, life-threatening illness and a radical new way of managing things with a stoma. Also, because I am feeling so much better physically than I have felt for many years, I am taking up activities which I thought were lost to me forever, such as my singing and guitar playing, and I have now started to sing in public again. There are other things that I feel very much drawn to taking up again for the benefit of others, and as the year progresses, we shall see how these develop.
I have to learn to pace myself again because I am in serious danger of overdoing things! There’s so much to do and so much to enjoy, and the trouble is, my art is tending to take a back seat as other things take priority, and this is something I definitely want to factor back into my life.
I am not just cooking again, and thoroughly enjoying it, and working in my kitchen, even enjoying washing up!! – but I am also baking, which is a luxury extra which I haven’t been doing for years. I am loving it, and loving sharing it with people with cancer on the Ricky Grant Unit. I am waiting for my bus pass to arrive so that I can go out independently, and once this happens, I shall be going back there more often than I have of late. We have both been very busy and I haven’t been for a while, and I want to pick up those threads again.
Once I have been free of cancer for two years, I shall be allowed to volunteer at the Lodge, the cancer support centre at the hospital, and I am looking forward to starting a small informal drawing class, sharing my knowledge of Zentangle. I am not a certified teacher and don’t pretend to be one, but I know I can bring some joy into the lives of others through this, and hopefully a way to help those anxious about their cancer to de-stress a little.
Life is good.
Tuesday 14th June 2016
Moving On After Cancer – Session 1
Today I attended the first session in a course for people who have come through their cancer treatment and been given the all-clear. Please see the menu on my home page, with separate pages for each session, to make them easier to navigate.
The course is taking place at the Lodge, which is the cancer support and information centre at the hospital. I am already very familiar with the place because I regularly attend the monthly relaxation sessions there.
Tuesday 21st June 2016
Moving On After Cancer – Session 2
The second session of our course. Today we had a nutritionist to speak to us about healthy eating, but she tucked in as enthusiastically as everybody else at tea time when I opened up the home baking I’d taken in to spoil everybody! It was a great session; in the second half we began to discuss emotions associated with having cancer.
I am grateful to Andrew, the clinical psychologist who is leading the course, for giving me permission to write up the contents of each session and publish them online, for the benefit of those who are not as fortunate as we are, and have no access to the kind of support that is available to us. Writing it up will also be a useful resource for me, helping me to remember the details of what we discussed.
Tuesday 28th June 2016
Moving On After Cancer – Session 3
Amazing how quickly the time passes, and we are now at the mid-point of our Moving On course. We are definitely starting to bond as a group. Again we had a visiting speaker for this session – this time someone to encourage us to be more active, and to give us pointers in this direction. This is difficult for me with my M.E. and I wasn’t sure how much I’d get out of the session, but I was able to contribute quite a bit when the subject of energy conservation came up, and the importance of pacing – I have been practising this for nearly 10 years. Again I took in home baking which we all enjoyed during the tea break. After tea, we continued to examine our cancer-related emotions, which was a very helpful discussion.
