2 Cor 12v9

Tuesday, 29 April 2014

Deja Vu

(from Richard's status on Friday)

"Hi all. After my last very optimistic post I'm afraid things have not gone well. A couple of days ago we found that despite the good response to chemo several tumours have reappeared along with some new ones. Also my blood count has not recovered since the last lot of chemo. The result is that the docs are saying that there are no further treatment options that they can offer other than trying to keep me comfortable. Obviously this was a real shock to the system but we are getting our heads around it and we still hold on for a miracle. We'd really appreciate your prayers both for me but also for Esther and the kids. We know that God is always good, that he always does the right thing according to His sovereign will and so we continue to trust Him whatever the outcome.
I'm being transferred to the local hospice tomorrow where it will a lot better for visiting for the kids and there is outside space etc.
Thanks for all you love and support.
Rich"



The feeling of deja vu is so strong at the moment that I have to keep reminding myself that I am not just remembering past events, or rereading a book or watching a movie that I’ve already seen. I’m not sure if going through all of this for a second time makes it feel more or less real. It’s just so weird.

Richard’s decline - the loss of his legs, his shaky hand movements, the various medications he’s on, and the daily care plan that involves hoists, wheelchairs and blood transfusions - is so like Scooby’s, that it is eerie. Thankfully, he has chosen the same positive outlook, patience with his circumstances, quiet determination to try and recover use of his body, and vocal appreciation to all the staff for their hard work. Those two are more alike than I realised.

There are other elements that are the same too, and as true now as when I wrote them two years ago, so I’m linking the posts rather than repeating myself. First, there’s the season of pre-grief, where we’ve been told, after so much effort on the part of all the medical departments involved, that there is no more hope and the fast-acting disease will now just run its course while they make him as comfortable as possible. What I learnt from our experience with Scooby was that while it’s important to allow that to become a reality to you, there is no actual preparation for losing somebody you love. No matter how much time you have to get used to it, it only becomes a proper reality in your subconscious about a month after they’ve actually gone. So although I am permanently feeling sick at the moment, and have times where I can’t talk because I’m crying too much, I am also embracing the times when I feel normal, and making the most of them. We have discussed the future and made sure of important practical details, but I am reminding myself over and over that right now, he is here. I can’t allow myself to keep thinking about a time when he won’t be (how can you imagine someone you’ve known all your adult life, who you’ve had your greatest adventures with, and who has been part of every grown-up decision you’ve ever made, not being with you anyway?) because then I won’t be able to function, and while he’s here, I am embracing that and enjoying being with him.

Then there is the element that tells me that while he’s still here, there is still the possibility of a miracle. Where there is still life, there is still hope, and no matter what has happened before, we still believe in the power of God to turn any situation around. So we keep fiercely praying and asking, knowing that it’s totally up to God for Him to decide, and that this thing ain’t over till it’s over.

And finally, my favourite: victory. Whatever happens, there will be cause for rejoicing. We want more years on this earth for Richard, but we know that the thing we fear the most is actually the best adventure of all - to be with God face to face, like we were created to be. In the middle of the heartache, I just keep smiling, knowing that no matter what happens to our family, it still can’t separate us from God. There’s actually nothing in the enemy’s arsenal that can do that. We've seen what God can accomplish in the worst of circumstances, and so I keep standing firm, ready to weather the next challenge and waiting to see what He'll do this time.

Wednesday, 16 April 2014

Tenacity

The fifth attempt at finding a chemo that will work has been started, and Richard spent nine days in Barrow. It's a lovely hospital in a gorgeous place, but when it's over a hundred miles each time to visit him, and he was there an extra six days because there was no room to have him back in Lancaster - well, you can imagine how frustrating that was!

As with all the other chemotherapies that are supposed to knock a normal human off their feet, my husband is tolerating this one very well, with no sickness and just a bit of tiredness, even when he's needed a blood transfusion to bring his platelet count back up. 

His tumours have been described as "treatment resistant", but I think another name for them should be "Scholes tumours". Just like my man, these things have progressed rapidly, barely halted at any obstacle in their way, dodged heavy artillery thrown at them, and found a way to regroup and keep going no matter how many defeats they've faced. He has kept going through all of it, no matter how much pain or discomfort or heavy pain relief he's been on, and has kept on doing jobs round the house, taking the kids on adventures, creating new concoctions in the kitchen, all up until the day his legs stopped working three weeks ago and he's been bed bound ever since. It's the first thing in his life that has literally stopped him with no way to get around it.

There has been no improvement in them yet. He can slightly move his legs from side to side, and has sensation in them even though it doesn't feel like normal. So far the doctors have wanted him to try resting them first to see if that will make a difference, and then we've been focusing on coming through the chemo and the ugly side-effects it has on his body, and next we are going to pursue a plan for getting him out of that bed. Even if it's just into a chair, so he can be wheeled around - that would be an improvement and would release him from hospital for periods of time.

We are really really blessed to have a car fitted with a wheelchair lift that we bought when Scooby couldn't walk. Unfortunately we never got to use it with him as he never came home, but we have been using it in the last year to bring a lady to church who otherwise would not be able to come. Margaret lives in a nursing home further down the prom and cannot use her legs since having a bad fall two years ago. She spent a whole year in hospital and then couldn't go home because of the level of care she needed and so she had to go to a care home. At first she was very unhappy, as I think we all would be to give up our home and independence, and she couldn't go to her church in Lancaster anymore. So Richard offered her a lift to our church in our car, and she's been coming ever since. She has gradually adjusted to life in a different town and has become part of our church family. 

A couple of months ago though, the lift in the car stopped working. It looked like several parts on it had broken down at once, and within a couple of phone calls we'd found out that only a specialist workshop in another city could fix it, and that it would cost a lot to get it working again. My reaction was that it was a shame and we would miss bringing Margaret to church, but I wasn't born a Scholes. In the middle of long hospital stays, increased pain and pressure in his spine, and devastating scan reports that made me want to curl up into a ball and stay there, Richard was totally adamant we were going to get that lift fixed and see Margaret back in church. Between hospital appointments, he arranged for us to take the car down to Manchester and get it repaired while we spent the day at the Trafford Centre. 

He couldn't walk properly around the Trafford Centre, but that didn't stop him either. He moved from bench to bench around the middle and made sure that I got to visit all the shops I wanted, bought loads of stuff for me and the kids, and didn't complain once, even though he was in agony. That Sunday Margaret was back in church, beaming after missing her weeks away, and Richard got to welcome her, although he's missed seeing her after that as he's been in hospital every week since. 

So now we have two reasons for our wheelchair lift, and I hope that Richard will get to use it really soon. 

In the meantime, the amount of patience, dignity and respect he's shown to everyone around him while he is utterly dependant on help for every task has blown me away and proved once again that God brings good out of every situation, no matter how difficult.

Friday, 4 April 2014

In His Words

It’s crazy that I haven’t written anything for months about Richard’s progress. There are so many drafts on this page that I have started writing, but as fast as I could find the words to formulate an explanation of the changes that have happened, more changes would come and the update would already be out of date….

My mind is not plugged into being reflective - finding words to describe how I’m feeling right now and what I think what might be the reasons behind what we’re going through. My two responsibilities are to be what is needed by my family (and there is so much joy in that kind of service!) and to take any opportunity to talk about God that this situation presents.

In the meantime, however, my husband has had more time to sit and be reflective, whether he wants to or not, and I’ve taken to just reposting his words on Facebook in order to update people. This is, after all, his story.

So I have cut and pasted his updates since the beginning of January. For those not on Facebook or seeing us regularly, I hope this helps give a picture of how things have been:


Tuesday 7th January
So the consultant tells me today that I'm in total remission after my two bouts of chemo and so am ready for transplant as soon as the Christie can manage it. Hopefully it will be within the next four weeks or they will have to give me a third round of chemo to keep me in remission. In the mean time appointments have been halved and meds drastically reduced so I should have a few weeks of relative normality to enjoy between now and the transplant. Yay!

Wednesday 29th January
Long overdue update, sorry to all who have been wondering and waiting. Saw my consultant in lancaster for the last time today as I should be going in for the bone marrow transplant on the 9th of Feb. I'll be in hospital for between 5 and 7 weeks which will be a challenge as I struggle to do 5-7 days in hospital but I guess I'll have to adjust. 
Feeling pretty nervous now as it approaches, its a fairly high risk procedure and it definitely focuses the mind so I'd really appreciate your prayers for me but more for Esther who is going to have to carry the house, the kids and some of the church responsibilities until I'm back up and running.
Big thanks to my sis Helen Victoria Coonan who is my 10/10 bone marrow donor, I really appreciate all you're doing for us!

I'll try to keep things more up to date as we go on.

Saturday 8th February
Hi all, my transplant has been put back by at least a week while we get some biopsy results back. Thanks for support!

Wednesday 19th February
Hi all, here's the latest for those interested. The results of all the tests are that Myeloma has definitely returned and aggressively. This has resulted in my transplant being on hold and as yet I haven't really had a clear answer for what will get it back on. Discussions are ongoing and I have started some new medication this week which seems to be helping a fair bit. Referrals are being made for further radiotherapy and possibly chemo but as you can tell things are a bit up in the air and more pessimistic than we had hoped. Prayers much appreciated as we know that all these things come with His knowledge and in no way negate His goodness or love. My role is to walk in obedience to Jesus and in some way use this situation to show His greatness. I'd appreciate you're prayers for healing but also for boldness to walk the line Ina manner fitting of an ambassador of Christ.

Tuesday 25th February
Update from my visit to the Christie today. Unfortunately we're struggling to get the transplant back on line as an option as things stand. I'm going for a scan tomorrow morning to assess progress of myeloma in my spine and then have an urgent radiotherapy session (possibly with more to follow) booked for the afternoon in response to what they find. We're keeping going with the new meds started last week to give them a chance and we're also applying for some drugs not available normally on the NHS through a trust of some kind. Grateful that we have a great and good God who brings glory to His name through all circumstances.

Friday 28th February
It's been a roller coaster week medically. Different treatments have been tried, found wanting, altered, offered, withdrawn and now are back on again. If you're praying then areas to consider are the radiation team who have difficult decisions to make regarding the doses they can give me. I'm hoping they will proceed with some on Wed as this has been effective previously. The docs are working very hard and we continue to pray for Christ's healing miracle (He is in control of the whole situation anyway). Pray mostly that I would reflect Him well and would not waste this opportunity to show people how amazing Jesus is.

Saturday 1st March 
Such an amazing day today. Our friends at church out on the most amazing party for Eva at a time when we couldn't. The room was decorated like a palace and the food and games and service we received reflected deep hearts of love and the culture honouring and allegiance that we've been seeking as a church. Thank you so much for all you've done for us today guys!

Wednesday 5th March
Hi all, here's a quick update for those interested. They're going to give me 5 doses of radiation starting today which is good as I'm experiencing quite a lot of weakness in hands and legs due to pressure being exerted on my spinal chord. Of you're praying then please pray that the radiation will be effective and that we will experience a good remission as a result of it so that I can get back on track for the bone marrow transplant.
The area causing me issues has not been irradiated before so I'm hoping that we can get some good results that will give the transplant doctors confidence to move forward again.
God is faithful and I have to say that I am enjoying His presence and the space to pursue Him that this ordeal is providing me with. To know God through Jesus Christ is to have eternal life (John 17:3). I have to say that to know Him is the greatest treasure of my life and it is one thing that no one can diminish or take away from me.

Tuesday 11th March
Mane growing back slowly but surely. Expect epic beardage to return with a vengeance! 
Nearly at the end of my series of radiotherapy and so far there's been a visible reduction in the size of the tumour on my back. Still struggling with loss of strength in legs and arms but the doc tells me that the radiotherapy keeps working for several weeks after the treatment so hopefully things will continue to improve. I'm feeling strong and hopeful, pressing deep into God who holds this all in his hand. Pursuing every opportunity to beat this thing with all I've got. Thanks for your messages and prayers- it's great to hear from friends old and new!

Wednesday 12th March
Had my fifth and final dose of radiotherapy tonight followed by amazing tea out and a movie with my good friends Mark Hutchinson, Paul Carmichael, and my bro in law legend David Parkinson. Belly full, heart full- thanks guys!
The mass on my back is visibly reduced so you guys who are praying the task now is to get back onto the transplant which means we needs total and stable remission. I'm also going this weekend on a healing retreat. Which ever we way go I know that The Lord has this in hands and whether he chooses to use the docs or to heal me in the power of his might all is good. He is good and trustworthy and in his hands even eternity is secure. That my friends is good news which ever way you look at it!

Saturday 22nd March
Ok update time for those interested. Had some severe pain Thurs afternoon and evening in what I thought felt like my kidneys so Friday was spent at the hospital. They we're amazing, I called in at 9 had had an MRI by lunch and was home with the results of multiple test by 9 in the evening.
Unfortunately I've developed another tumour in my t9-t10 vertebrae which was not on the last scan less than 4 weeks ago except as a possible shadow.
I'm home again now and the pain is pretty much under control which is great cos it was as bad as I've known. Things are a little confused at the moment plan wise. The chemo I was on was to start round 2 this week but it's been stopped as the tumour has grown despite being on it so I guess that's chemo 5 that is fairly ineffective.
As of last night further radiotherapy was an option as this is an area that has not previously been affected and therefore has not been targeted. But the plan changed from being transferred to Royal Preston Hospital for emergency radiation to being sent home because they didn't think they could be of use after reviewing the scans but I haven't had an explanation why because everyone had gone home for the weekend by time that message got through. I'll be calling for some clarity on Monday morning for 
sure!
So things are looking rocky at the mo medically speaking. They have given me three options at this time which are
- do nothing except control symptoms
- try a further very toxic chemo which they have little faith in as the illness has resisted every form of chemo we've thrown at it so far.
- more radiotherapy if that is indeed still now an option.

Personally I feel very positive and have lots of fight and am getting frustrated a bit with doctors responses- trying to inspire some fight in them too! I have great confidence in God that he can turn this around if He chooses when He chooses. I also believe that if He doesn't then that's in his hands too and I can trust Him that His will and purposes are better than mine. I already live healed in that I am free of my sinful past and am adopted into God's family, that I already have eternal life that I am enjoying now. All this because Jesus lived a perfect life for me, died the death I deserve to die for my sin in my place and he rose again from death because Satan could not hold Him for He was held unjustly. My debt is paid, I am set free and I have the power to live like Christ because He has empowered me with His Spirit to do so. Not to mention that all that also can conquer sickness. But sickness would be the minor and temporary miracle after salvation don't you think?

Please keep praying if you do- if you don't- Jesus did all this for you too and you can have what he gave me if you want it. Message me and I'll chat to you about it if you like- then you can pray too and who knows maybe perform a miracle? 
Thanks friends.

Monday 24th March
So called my consultant this morning and we are back on for radiotherapy to new tumour site hopefully this aft or tomorrow! The concern was that the new area is right below the last area irradiated and so they are concerned about overlap and the potential risk to my spinal chord from the radiation while trying to relieve pressure on self same chord with self same radiation. Just waiting for a call with the time to go.

Thursday 27th March
Hi all, quick update. Am back in Lancaster Royal Infirmary after having radiotherapy yesterday. The latest tumour has left the feeling in my legs slowly diminished over the weekend until I find myself unable to move my legs at all. We asked to be admitted so that we could be a bit safer in terms of getting around the house and obviously getting Esther to safely move my bulk around is not a great idea for her. Apparently it's not unusual for spinal compressions to get worse immediately after radiotherapy as there is often inflammation in response to the radiation. The hope is that this should subside quickly. If you're praying then please pray for restoration of my mobility soon so I can get up and on! Also that this would be the last new tumour and that we get to transplant again.

Friday 28th March
I'm pleased to say that I'm getting more sensation and movement back in both legs as things progress. The improvement is better in my left side for sure but both sides are gaining momentum. I was also transferred to a side room with facilities for people with limited mobility (special bed and mattress, more discretion for bring moved around etc) when they do health care well the NHS really do it well. The staff on the ward seem stressed, I think they are undermanned at the mo so please take time to pray for them as they serve so selflessly and many from a place of the flesh and a sinful nature rather than a regenerate and Spirit filled life (we have much to learn from such people in the church, how self centred we often become as Christians forgetting that our first call is to love God and then to love our neighbours). The docs want me to stay in hospital till at least Monday which, for a change, I'm glad to do as I feel quite vulnerable and burdensome with my current restrictions. The hope is that I will have a decent response to radiotherapy by then and gave confidence to go home otherwise the hospice has been muted as an alternative while things get assessed if recovery is to take longer than hoped. It would allow for greater access and fun while the kids to visit I'm told. Who knows maybe this could all be a rich field for a harvest to his glory if I get my eyes off me and onto Him?!? 
Any how, thanks for your prayers, I hope you're as encouraged as I am at the sovereignty of Jesus through all this adversity we face together. May we never turn adversity to blame but rather let's see the Lords discipline for what Hebrews 12 says it is- evidence if the loving hand of a legitimate Father who is working for our best which is to see his glory. End of 3am rumblings! Thank you for your prayers and support!

Saturday 29th March
Started getting some physio yesterday with my legs which are making some progress but very slow. My left leg is progressing somewhat better than my right as of today and it is beginning to get concerning to me as well as quite frustrating. Prayers much appreciated that the tumour mass will continue to shrink as the previous masses have and continue to reduce. I'm also feeling some of the nastier side effects of the radiotherapy itself. Thanks everyone!

Sunday 30th March
Still slowly progressing with getting feeling back and sensation back in lower body. Still a long way to go but consultant back tomorrow so plans can get made again. There are decisions regarding plans for what to do while I get my legs working again, decisions to make regarding whether to try more potent chemo in light of the cancer being so far multi drug resistant and decisions regarding Physio etc. lots to think about so of appreciate your prayers on behalf of myself and the medical staff. Massive thanks to all who have visited and called and kept in touch. Especially big thanks for all who are helping and supporting Esther Scholes and my family and church. It's great to have such friends.

Monday 31st March
Grateful that Jesus warned me in the Word that there will be trouble and storms and opposition in this life. He doesn't try to fool us- he came to save us, to rescue us, to love us and to bring us into His family and His Kingdom. The road is narrow and often rough but I follow the voice of the good shepherd and he will see me around whatever obstacles in the way. Encouragement of the day- take on the whole council of a Gods Word- let it shape you and don't try to make it fit your life first. Sometimes you only discover that it's true when your walking through the relevant sections for yourself.

Monday 31st March 
So the plan is basically to take a day at a time while we continue to see how things progress with my legs. I'll be staying in the hospital for the foreseeable and the docs are talking about whether I can have a chemo regime that hopefully will more effective than those tried so far so close the radiotherapy I've just had. Apparently having the two so close together can be problematic from an infection risk and side effect point of view. They are not particularly optimistic about the effectiveness of the chemo with the poor track record so far but they are willing to give it a go and my leaning is toward having it should it remain a possibility. Lots to pray about there guys! I'm feeling great mentally and really believe I'm going to get through this whatever the circumstances seem to say. One day at a time! Thanks for your support and prayers.

Monday 31st March
Have to say it so humbling to be served by strangers. I have always feared getting old because I've never liked the idea of being vulnerable enough to have to rely on others for basic function. Ironically I find myself there as a 38 year old and I get to see the shadow of the image of God in the lives and service of strangers. There is a joy in being vulnerable- I guess coming from the window into lives of strangers that I would never other wise have noticed. It gives me hope in humanity and it reminds me of the deep value of each human being we encounter everyday. We must help these people find Jesus and have their image and potential restored to that which he intended. What a joy it is to be the church - to do the work of an evangelist- to see wonderful pieces of Gods handy work remade and restored. What else is with living for and what greater a force for mans good and Gods glory than an army of image restored, kingdom building life changing servants. Lord make is into this type of church and may your Kingdom come swiftly.

Tuesday 1st April
All clear for trying the chemo so I've said yes to it. This means being transferred to Barrow in Furness either later this week or early next. Also they are going to look at our house for arranging care at home with limited mobility if necessary which is great as being at home will obviously be more settling and normal for family life than all the toing and froing with visiting. Good to have a plan in place and something to be aiming at. Thanks as usual for prayers and support!

Wednesday 2nd April
Well quite a day so far! Had a really difficult night with pain and difficulties to the point that they got me an MRI first thing this morning. Good news is that the radiotherapy has worked well and there is no sign of any spinal compression at all now. The difficult thing though is that doesn't give an explanation as to why my legs are still not working. Please pray that there isn't any permanent nerve damage and that use of legs is restored. The worst case scenario is that the blood supply to the nerve has been damaged in which case full recovery is not likely so I'm really hoping that this is still bruising or aftermath of radiotherapy but only time will tell. I'm being transferred to Barrow in Furness hospital on Sunday afternoon to start the chemo on Monday and hopefully be done by Wednesday next week. Thanks everyone!