Interview at lent group
Tell us a little bit what has happened to you over the last 2 ½ years?
In August 2009 I went to see a Rhematologist following 3 months of swelling in my hands and feet. I was diagnosed with RA given a steroid injection and a drug called methotrexate to control the disease. Methotrexate takes about 8 weeks to work and in the meantime I took steroids. I went home from that appointment slightly scared about the future. In the next 2 weeks the disease went out of control – it attacked my muscles, I could hardly walk and couldn’t eat, my skin became very tight and I came out in strange patches all over my legs. I also developed a superficial blood clot. I returned to the Rhematologist who said that the disease had changed into a rare autoimmune disease helpfully called mixed connective tissue disease which affected joints, muscles, skin and sometimes organs. I was very ill and very scared at the speed of the disease. We then had to wait for the drug to take affect. The steroids I was taking are amazing drugs but they have major side effects – I seemed to get them all. I became paranoid, scared of everything unable to be left alone at all. It was an awful time. I struggled to see God in this and we prayed very hard. I kept verses by my side in bed and songs written out to sing in the night time when the panic overwhelmed me. Thankfully after about 3 months the drugs began to work. I started back at work very slowly in March and my life was getting back to a new normal.
At the beginning of May I noticed that my breast wasn’t looking right and I went to see my gp. She examined me and said she thought it was fine but I was still worried so we decided that she would refer me to the breast clinic where everyone was very sure it was all fine but sent me for a mammogram. On the mammogram they found a lump and immediately did an ultrasound the area and a biopsy. We waited a week for the results and I came to terms with what I was sure they would say. I know that many of you had been praying for me at this point and I was very peaceful as I went for the results. I was told I had an aggressive form of breast cancer, which would need a year of treatment.
I had the great privilege of having both a Christian surgeon and oncologist who have been so supportive. It was decided that I would have chemo before surgery. I began treatment on 10th June (Chloe’s 21 st birthday). I was ready for the side effects had my bucket and my scarves. Over the weekend I became iller and iller. I couldn’t climb the stairs and I couldn’t walk across the room without being puffed. By the Tuesday I was feeling really ill. Paul took me to hospital where they did a blood test and admitted me for a blood transfusion.. I had the transfusion and they did another blood test before sending me home. I will always remember the oncologist coming into my room to tell me that they had found that my kidneys were really struggling. I had scans and blood tests and eventually at 10..00 on Thursday evening I saw the renal consultant who told me that my kidneys had completely failed and that I needed to have dialysis urgently. I was fitted with a line directly into a vein in my neck and began dialysis. During the next 21/2 weeks I saw many Drs while they tried to work out what had happened.
Dialysis for anyone who doesn’t know about it is where a machine basically washes your blood filtering out the unwanted waste and controlling the minerals within your body. It takes about 4 hours 3 times a week as a minimum. It leaves you feeling very poorly. It is the hardest thing I have ever had to do.
I left hospital with a line in my chest and a probably diagnosis of acute renal failure caused by the skin condition scleroderma part of the autoimmune disease. It was unknown whether the chemo or the steroids I had with the chemo were the cause.
For the next year I had a total of 9 months of chemo, 4 weeks of radiotherapy, a mastectomy and lots of physio. All the while carrying on with dialysis 3 times a week. I finished my breast cancer treatment in June last year just in time for Josh my sons wedding. I lost my hair twice and had quite bad side effects as because of my kidney disease there are many drugs that I can’t take. At that time I asked the renal consultant if it was possible for my kidneys to recover. She told me that after a year of dialysis it would not be possible for my kidneys to recover and that I would be on dialysis for the rest of my life or until I had a transplant, which is not allowed until you have been clear of cancer for 5 years.
We began to plan for home dialysis, I learnt to insert my needles into my fistula and we started to get a room ready. At the end of October the renal consultant came to see me in dialysis. It was a very ordinary dialysis session but an extraordinary day for me. She said – ‘ I have been looking at your recent blood results and they are very good – I think your kidneys maybe recovering and I would like to stop dialysis to see. I was completely silent and didn’t know whether to believe her or not. I have not had dialysis since then. My blood results show that my kidneys are working at about 20% enough for my body to cope without dialysis. They had no protocol for me as they said this just doesn’t happen. Every Dr I see is amazed by what has happened and talks about it in terms of a miracle and that I have angels watching over me.
What has helped you through your journey?
When I had the breast cancer diagnosis I had over 100 texts in a day. I couldn’t keep up with them. So I began a blog – this has been a fantastic way of recording God’s faithfulness. I can look back and see his footprints all over my journey. It was a great way of letting people know what to pray for and for working through what was happening to me. I also couldn’t have managed with out my wonderful supportive family and friends. Especially my church family who have fed us, accompanied me to dialysis, kept my vases full of flowers, prayed for us, supported us, listened especially to me as I have worked through all that has happened. Verses written out became very helpful reminding me on days when I struggled that God keeps his promises even when it doesn’t feel like it.
What have you learnt?
I am completely changed. In September 2009 Julian came to visit me and as we chatted I told him that what I wanted from this journey was to know God, to know him whatever happened and to know that he is right with me. Julian read this to me :
Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 40
This is what I have clung onto. My worst day was when I had a kidney biopsy and my lungs filled with fluid and my oxygen levels dropped dramatically. That night I lay in my hospital bed listening to the oxygen being piped into my body and thought OK this is it. I may die now - I am so ill. I have to decide do I believe that God is here in this moment or not, do I believe he is in charge or not. Is he sovereign over all things? It was pivotal in my journey – I became sure that night this was his journey for me. He had allowed this to happen and he would walk beside me holding my hand. It wasn’t what I would have chosen for me, for my family or for my friends but it was what God had allowed and I now had a choice – to hold on very tight to his hand or to let go and cope on my own. I chose to hold tight to the hand of the creator of the world who loved me enough to allow his son to die for me. People suggested that God doesn’t let us go through more than we can cope with but I believe differently. Sometimes he does ask us to go through more than we can cope with on our own but with him beside us giving us the strength and guidance we can get through and from my experience we can get through with real joy. Early on I decided that if this was my last few months on earth then I needed to make the most of them. To treasure each and every day and to find joy all around me.
Has it been easy since then?
No. I decided early on I would be as honest about my journey as I could be. I have had good days and bad days. Maybe more like bad moments when I have been overwhelmed. Paul has taken the brunt of those bad moments when I have been full of self pity and groaned and moaned, particularly when using my bucket! But I can honestly say I have never felt that God has left me or that this hasn’t been his plan for me. I have sad moments when I think that I may not see my children marry or meet my grandchildren. But I know he has numbered my days and nothing can change that. I love my life every moment of it but I am sure of eternity. People have said I am brave or courageous and I am not either of these things – in my natural self I am scared of lots of things, I am impatient and grumpy and I had always thought that given a cancer diagnosis I would fall apart. I struggle like most of us do to pray and I can easily slip into self pity. Please don’t think this is because I am in any way different. But God has sustained me by his word, he has given me his promises to cling onto and apart from a few moments ever since that night in the hospital I have not been afraid. This has been his gift of grace.
Why not complete healing?
I have thought a lot about this. I believe God heals and that he could have made me completely well. But he chose to allow me to have to trust in him on a daily basis. I carry the scars of my journey – many of my joints are damaged, I have a mastectomy scar and my arm carries many scars. I can’t stand up and sing at the same time as I may have some damage from the radiotherapy to my lungs. I have regular blood tests and I have to eat a special diet and I have to inject myself with a drug to tell my body to make red blood cells, – all this reminds me that God is in charge. Early on I read that anxiety and trust can’t live together – if I am anxious I am not trusting. I now have to choose to trust that God is in charge – he will choose when I will die, whether I need to go back on dialysis and whether the cancer returns – it is all in his hands. My job is to trust him, holding on tight to his hand thankful for each and every day that I am given.
Be still my soul, the Lord is on thy side,
Bear patiently the cross of grief or pain.
Leave to thy God to order and provide,
In every change, He faithful will remain…
Be still my soul, thy best, thy heavenly friend
Through thorny ways leads to a joyful end
There is so much that I have missed out in writing my journey down but it would have taken for ever to say it all!! I am slowly writing an account of it all so that I don't forget what God has done.
