Cancer diary - "He makes me lie down in green pastures"
Steve was diagnosed with metastatic stage-4 Prostate Cancer in February 2016. This diary records the challenging journey we are on, and hopefully will be of some help and encouragement to others who are facing - or may face in the future - a similar situation.
A chance remark during a 'phone call with a physio at the Cynthia Spencer Hospice leads me to check if my "dynamic air mattress" is working properly. It looks as if one of the air cells - right under my bottom - is permanently deflated, so I call out the equipment engineers. It turns out that three of the cells are faulty, and that I have been lying on a static section of the mattress! I wonder if that is the cause of the nasty pressure sore that has appeared in the past few weeks?
A significant improvement in my pressure sore over the past few days seems to indicate that the bed was the problem. Ironic that the nurses had been encouraging me to spend less time in the wheelchair and more time on a faulty bed .... but then they weren't to know!
Further good news when we get formal notification that NHS CHC will fund the extra time needed for carers to administer the Peristeen rectal irrigation system. A group at my cousin Eve's church has been praying persistently for that outcome for several months despite earlier applications for the funding being turned down! "Then Jesus told his disciples a parable to show them that they should always pray and not give up." Luke 18:1
Monday 11th: rather a depressing day when I get a 'phone call from my McMillan nurse to say that the recent CT scan shows two new tumours on my spine! They are at levels L2 and L5 - below my current T10 tumour - so there is some debate about whether to take action or not. An MRI scan is scheduled for Thursday 14th and should show more detail. On top of that, my wheelchair-accessible-vehicle has battery problems and will not start! "In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety." Psalm 4:8
I find myself wanting to spend more time in the manual wheelchair than in the powered one; it gives me more exercise and I feel better for it. Several times I manage to push myself completely round the village - quite an effort, given the hills!
A kind ex-colleague drives me to an annual re-union of retired officers from work. A lovely afternoon out ...... but why does everyone look so old :)
Our daughter has invited us to their home for Christmas lunch, but we don't know if it is wheelchair-accessible; so we do a "dummy run" one Saturday to check it out. Fortunately it's easy to get in, otherwise I would have been sitting outside to eat my lunch!
My Doctor has prescribed some "catheter flush kits" to be used weekly as a preventative measure against blockage. The visiting nurse instructs me how to use them and lets me have a go. It's reassuring to know I could use one myself as "self help" in the event of a blockage.
I continue to get "bloated tummies" which can become quite painful. Apparently it's a common problem for spinal injury patients, where food "transit times" average 80 hours due to a lack of normal muscle activity. Good diet and exercise seem to be the only remedies.
I spend some time preparing to lead the Christmas Carol Service at the Care Home close to our church. It would be easy to give it a miss this year, but whilst I am fit enough I feel these are things I should be doing.
Sunday 19th - a wonderful day when we are visited by dear friends Cyril and Christine. Cyril was Lay Pastor at our church in the early 1960s, and he baptised me as a teenager. He was very supportive when my Father died early, and he and Christine have continued to be faithful friends, especially through this illness. They live in North Devon and are unable to drive long distances; equally there is no way I could get to Devon to see them. What a blessing, then, when Cyril's son offered to drive them to a family birthday celebration near to us, and they were able to call on us! Here we all are.
Before my paralysis I really enjoyed undertaking woodwork and electronic projects with my Grandson Robert; the paralysis put a stop to that. But with the help of my Daughter I've been able to set up a small workbench in our bungalow and attempt some projects again. I built a digital hymn player for use in our church, and helped Robert to build a wooden periscope!
Monday 27th and a meeting with representatives from Social Services and NHS CHC. They will be recommending an increase in the funding of my care package to allow carers to administer "Peristeen" - basically a rectal irrigation system - that should improve and simplify my bowel management problems. That's another real answer to prayer!
Tuesday 28th and another monthly review meeting with the Oncologist. The great news is that my PSA has reduced slightly to 18.7 ! It is one of those mornings when you feel you are being especially blessed: blue sky and sunshine; no traffic problems on the drive to hospital; a parking space suddenly freeing up as we arrived outside Oncology; invited early to see the Oncologist despite being told there was a 20 minute delay; etc. Sometimes just saying "thank you Lord" doesn't seem enough!
The month ends with a visit to hospital on 30th for a CT scan. Before the scan, patients have to drink a litre of "contrast fluid" over the course of an hour, with strict instructions not to visit the toilet during the final 30 mins ...... difficult to comply when you have a urinary catheter! The CT department has a hoist, so the nurses are able to transfer me from my wheelchair to the scanner table - at least they are once I explain how the sling attaches to the hoist and once they manage to find a hoist battery which is not flat - apparently they don't get much practice at "manual handling"! A bonus is that this hoist can measure the patient's weight, so for the first time since leaving Danetre in June I know how much I weigh - 70kg (11st). That's a loss of 1st - not as much I feared. The scan results should be available at our next Oncology review on 19th December.
A review meeting with the Oncologist on 3rd shows my PSA up from 7.5 to 12 - just an anomaly or a worrying trend?
My 70th birthday on Friday 13th celebrated with lunch at a local restaurant together with Betsy and Naomi; then all the family come round on Saturday 14th for a buffet lunch. A birthday I thought I would never see, given the earlier gloomy prognosis ... thank you Lord!
Yet another catheter blockage on 18th, but again the district nurse is able to insert the new one without any difficulty.
The monthly review with the Oncologist on 31st shows a still further rise in the PSA from 12 to 19.3. He thinks it might be worth swapping to another steroid - apparently some steroids can make the Zytiga less effective!
New district nurses introduce a different "bowel management regime". Now, one nurse visits at 8.30am to administer suppositories. Then she leaves and I am left on the bed hoping that the carers arrive in time to hoist me onto the commode before the suppositories take full effect! Sometimes you just have to laugh at it all!
Saturday 2nd - our 45th (Sapphire) wedding anniversary and a lovely day with the family.
A review meeting with the Oncologist on 5th shows the PSA stable at 7.5, so we continue with Zytiga on a month-by-month basis.
My catheter blocks again on 6th! District nurse Allison is nervous about changing it because of all the difficulties last time, but the new one goes in incredibly easily - a sure answer to prayer at the time. She's now my "Catheter Queen"!
A meeting with the Oncologist on Tuesday 1st produces the disappointing news that a recent bone scan showed quite extensive further spread of the cancer. He recommends trying the drug Zytiga rather than further infusion chemo, which he thinks would be tough to bear given my paralysis.
My McMillan nurse tells me something wonderful! Apparently, when she first visited me after my paralysis I'd told her that God would bring good out of the situation. A few weeks later she was dealing with a prostate cancer sufferer complaining of back pains. She feared he might be heading for SCC like me, and so encouraged his consultant to do an MRI scan. The consultant was reluctant, given the cost and that the sufferer's PSA and CT scans looked OK. But she persisted and an MRI scan showed a tumour developing on his spine; they were able to operate in time and save him from paralysis. She said it was picturing my situation that had sensitized her to the possibility and made her persistent in tackling the consultant - she now believed this was an example of God bringing good out of my situation!
We take delivery of a powered wheelchair which means that I can get in and out of the bungalow unaided. Betsy and I try to fit in a trip around the village most days, weather permitting.
The big day arrives - Monday 3rd - and I return home. Quite a strange sensation at first after so long in hospital - it's true that you get "institutionalised".
A rude shock in the middle of my first night home when I realise that my catheter is blocked. A district nurse visits and removes the old catheter but is unable to insert a new one - she can't push it past my enlarged prostate! An emergency trip to hospital ensues where, after a struggle, nurse Nick the "catheter king" manages to get a new one in place. I'm very relieved, but concerned about what would happen when it next needed replacing.
Danetre's "bowel management regime" proves to be very difficult to manage at home. It requires two district nurses to visit on Mondays, Wednesdays and Fridays to administer suppositories and hoist me onto the commode; I then wait until carers arrive to hoist me off! At worst, that leaves me on the commode for 1hr45mins!
There are bizarre moments such as when the nurses administer the suppositories but then can't work out how to use the hoist. Or the time when they hoist me up off the bed but can't lower the hoist; eventually they did it manually and left me on the commode to 'phone the equipment engineers. They turned up 6 hours later to this "emergency"! Fortunately Betsy had already worked out what was wrong!
I am determined to get to church on my first Sunday back home. My carers arrange an earlier-than-usual morning call and Betsy valiantly pushes me in the wheelchair up the hill to the village Baptist Chapel; I still don't know how she managed that!
On 20th we take delivery of a vehicle adapted to take a wheelchair passenger in the rear. It was supplied by Brotherwood and is based on a VW Caddy. It allows us to take short trips away from home whenever Naomi or Jonathan is free to drive us.
In the words of an old hymn: "Count your blessings, name them one by one, and it will surprise you what the Lord has done." So one day I count up all the different visitors who had come to see me at Danetre - it was 59!! Betsy visited nearly every day, wonderfully supported by family, church friends and neighbours who provided transport for her.
I begin to be more adventurous in the wheelchair, timing myself on "circuits" around the hospital corridoors. And some weekends the family would push me up the hill into Daventry - a delight to be out of hospital and doing something as simple as enjoying a Costa coffee with son-in-law Ben.
We begin planning for a return home, which would need carers to call four times a day to wash, dress, and hoist me from bed to wheelchair etc. One of the physios accompanies me on a trip home to assess the bungalow's suitability for my return - she declares everything is good and recommends which bedroom would be best for me, bearing in mind the need for a "hospital bed", hoist etc.
The "care package" and its funding takes a while to get in place, but eventually we are visited by Sandra from the company appointed by Social Services to look after me. Imagine our surprise and delight when it turns out that Sandra and her husband (and many of their staff) are Christians! Yet another "coincidence"?
Whilst at Danetre I meet a fellow patient - Emma - who is a lovely Christian lady, and we enjoy times of fellowship together. It turns out that she worships at a small Baptist church in a nearby village and that we share mutual friends - yet another "coincidence". Since leaving Danetre we have met up and worshipped together at Emma's church.
I really enjoy the food at Danetre, but occasionally I cancel my tea so as to enjoy an evening "take-away" brought in by Jonathan or Naomi. The residual smell of the food always makes the hospital staff hungry when they come into my room!
The family arrange a special treat for Father's Day. I am allowed out of hospital for a couple of hours and travel home for a barbecue on a lovely summer's afternoon. I eat too much and suffer for it later! Here we all are.
I gradually become accustomed to life at Danetre. I was so impressed with the Nurses and Carers, and the way they coped with the (often) unpleasant things they had to do for me!
Getting used to a catheter for urinary incontinence was one thing; getting used to the "bowel management regime" was quite another. It involved taking codine for two days to constipate me, followed by adminstering suppositories on the third day to encourage bowel movement. You quickly begin to realise how essential to life these basic functions are.
My physiotherapist - Remi - introduces himself to me and within two days has me sitting in a wheelchair. What a difference that made - a new sense of freedom and a completely new outlook on life, although it was a strange sensation to be sitting on the lower half of a body I couldn't feel! It turns out that Remi is a Christian, so while he is manipulating my legs we have conversations about our favourite Bible verses and worship songs; we even shared a common interest in the great Victorian preacher Charles Haddon Spurgeon. Another "coincidence"?
One morning Remi enters my room and quotes Jeremiah 29:11 'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future.' I'm particularly pleased to hear the words "not to harm you" from a physio who is about to start manipulating my legs!
At the start of the month we enjoy a week's holiday in Mallorca with Naomi and family. I suffered a few back pains on holiday, reminiscent of those I suffered before my initial cancer diagnosis, but was not unduly concerned.
The back pains become extreme on return from holiday. A visit from the GP and a trip to A&E at the hospital fail to pin-point the problem.
On the evening of 19th I lose all feeling in my legs and am rushed to hospital. CT and MRI scans over the next couple of days reveal that I have Spinal Cord Compression (SCC) caused by a tumour on my spine. It renders me doubly-incontinent, with no feeling or muscle control below my navel. A series of five radio-therapy "shots" prevent any further tumour growth but fail to improve the SCC.
These are dark days: paralyzed, lying horizontal in a hospital bed, uncertain if this is how I will spend the rest of my life! It was made bearable by fantastic support from family, church friends, neighbours and ex work colleagues who visited at every opportunity. I also had an unshakeable feeling that God was working His purposes out through my situation: for example I found myself in a bed next to a fellow Christian and cancer sufferer, Al, with whom I had great times of fellowship and who has become a precious friend; and the guy in the bed opposite - who I hardly spoke to - quietly listened to conversations between me and Al and has since asked to know more about the Christian faith.
On 28th an excited McMillan nurse calls round to say that, most unusually, a place for a patient at Danetre rehab hospital, Daventry, has just become available; did I want it? I knew nothing of Danetre, but on her advice said "Yes". By that evening I am installed at Danetre in my own room, complete with TV and bathroom! The calm surroundings at Danetre are such a contrast with the hustle and bustle of NGH. Just a coincidence that a place at Danetre should occur when I needed it, or our dear Lord's working?
Then on 30th a serious set-back. Severe stomach pains and a massive drop in blood pressure result in an emergency trip back to NGH where questions such as "Do you wish to be resuscitated if your condition deteriorates?" re-inforce the seriousness of the situation!
Miraculously my condition quickly recovers and I am back in my old room at Danetre by 2nd May!
An uneventful month except for an (apparently) minor incident when I fall over while playing "tag" with my Grandson. I had a strange sensation of loss of control in my leg, but I got straight up and thought no more of it; I was more concerned about the bruise on my head!
A urine infection makes me feel very ill for nearly three weeks; apparently Prostate Cancer sufferers are particularly prone because of poor "flow rate"!
A review meeting with the Oncologist on 3rd shows a small increase in PSA to 0.8, but no significant changes in the CT scans. Another review in 3 months.
A meeting with the Oncologist on 27th shows the PSA slightly up at 0.5, but a CT scan shows a further improvement in the liver, and the bone spread is stable. Next review is planned for three month's time.
We enjoy a wonderful week's holiday on the Isle of Wight with Naomi and family. I feel fully fit. What a blessing after being given a prognosis of "a few months" back in March! Simple pleasures like building sandcastles and reading bed-time stories to our grandaughter are very precious.
PSA down to 0.4 ahead of the sixth, and last, chemo session on 18th.
I suffer a few mild side effects, but am well enough to join Jonathan and family for another great holiday in Combe Martin, North Devon. Further unexpected blessings!
Betsy and I celebrate our 44th Wedding Anniversary with a one-night stay at Lynmouth on the way home from Combe Martin. Lynmouth is where we spent our Honeymoon all those years ago.
Blood tests ahead of the fourth chemo session on 7th show the PSA further down at 0.9.
During most chemo sessions I made good use of the time by doing preparation for our church mid-week Bible Studies. I was amazed at how often the sight of my Bible encouraged other cancer sufferers to talk about their faith, ask about mine, or ask for prayer. Surely God is bringing good out of my situation!
PSA down to 0.5 ahead of the fifth chemo session on 28th.
PSA down to 1.0, and scans show improvement in the liver.
We were due to hold a special church service shortly after my third chemo session on 16th, for which I was a key "player". Worries about debilitating side effects led us to nearly cancel the event, but we went ahead in faith and much prayer. I suffer Zero side effects after this session!!!
Each chemo session involves taking high-dose steroids a few days before and after the infusion. My goodness, do they keep you awake at night!
My first chemo session is on 5th. I spend the next day awating the expected dire side effects, but they don't happen. On Saturday 7th I feel so well that Naomi takes us to a garden festival at Malvern - a trip I had previously cancelled. Our Lord is so gracious and faithful!
I can't believe how caring folk are to us - from a neighbour baking me a cake to "fatten me up" to a friend of Naomi's taking out a subscription to "National Geographic" so that I have something to read during chemo sessions.
The second chemo session is on 26th. This time I suffer extreme tiredness, nausea, and some "emergency" trips to the toilet! But they only last a couple of days.
My prayers for guidance on whether or not to undergo "early chemo" are clearly answered during a Sunday service on 17th when the minister speaks about Naaman - the commander who was cured of leprosy after reluctantly dipping in the River Jordan seven times; I could not help seeing this as analogous to "chemo" cycles. So at the meeting with the Oncologist the following day we agree to go ahead.
Not a great start to the month - I have to have a tooth extracted and Betsy is told she has the early stages of a cataract.
Another meeting with the Urologist who confirms the spread to lymph nodes, bones, lungs and liver; his gloomy prognosis is "think in terms of months". I explain that my breathlessness has disappeared - the previous day I was climbing hills carrying my grandaughter - but he is disbelieving and sends me for a chest X-ray. The X-ray shows the lungs to be clear, for which he has no explanation. However, all the folk praying for me are able to explain!
The Urologist thinks I would be a good candidate for "early chemo" and encourages me to discuss options with the consultant Oncologist. I hate the prospect of "chemo" but am determined to seek the Lord's will and be obedient to it.
The month ends with a short holiday at log cabins in the Peak District with Naomi's family - a lovely break!
Eventually the loss of appetite, back pains, weight loss and severe breathlessness convince me to go to my GP. He quickly diagnoses metastatic prostate cancer and books me for a "fast-track" consulation with the Urologist at Northampton General Hospital (NGH) - not great news the day before Betsy's birthday! We come home and share the devastating news with close family, and friends from church who promise to pray for us.
The next day I have a blood sample taken which subsequently shows a PSA of 98.6! This is the first of many "encounters" with needles - a major issue for a life-long "Needle-Phobe" like me, but one which the Lord quickly helps me to overcome. "Cast all your anxiety on Him because He cares for you" 1 Peter 5:7.
The Urologist confirms the GP's diagnosis and books me for a bone scan and a CT scan to see how far the cancer has spread - yet more needles! He prescribes 3-monthly Decapeptyl injections
Scan results show the cancer has spread to lymph nodes, bones, lungs and liver!