One Year...

One year ago today...
the day it all changed.

It was a Tuesday. I got the call from Matt around 3:00. I remember I was sitting at the computer at home. Matt told me that he was at the hospital, and that Bob Scott, his boss, had driven him there. Then he said those 4 words I never expected to hear: “The tumor came back.” 

My heart stopped.

Matt had gone in that morning for an MRI, as he has done numerous times in the past 10 years. He was now at the point where he had an MRI just yearly now, and that one was done in February, which showed that everything was fine. There was no sign of tumor growth, which had been the case for the last 10 years, praise God. But because Matt had been having some seizure activity for the last few months, they suggested he go in for another MRI in July. We then decided we should move up the appointment, because he had been having a headache every day for the past week. Good thing we did....

After I hung up with Matt,  I immediately broke down. I think after that I was in somewhat of a state of shock. I went about what I was doing and ate lunch, and then I realized I needed to get to the hospital! Things are somewhat of a blur after that.... I remember being in the ER room with Matt and Bob and Bob praying for us before he left. I remember being moved to the neurology floor, I think, but first they had us wait in some small private room while they were getting a room ready. That’s when Andrew, a physician’s assistant to the brain surgeon, came in to talk with us about what was seen on the MRI. 

Andrew explained what they saw, and while we didn’t know for sure what it all meant, we knew by his demeanor that it wasn’t good. At that point, Matt and I were both in tears. Andrew then asked if he could pray for us, and we said yes, of course. That moment was so special and meant so much to us. I have never had a PA or a  nurse or doctor pray with me before. It was just another indicator that God was there with us, through every second of this. 

Later that evening, Dr. Yao, the brain surgeon, came to our room to discuss things more with us and give us our options. He explained that the tumor was of significant size and that he was shocked at how fast it had grown in the 4 months since Matt's February MRI. He said that without doing surgery, they couldn't say for sure what type of tumor or grade it was, but he did mention glioblastoma. that was the first time I had ever heard that word. In his words, that was the "worst case" scenario. If it was GBM, and Matt chose not to have surgery or chemotherapy, he would only have about a month to live. Then he said that even with surgery and treatment, it's usually about 6 months. 

6 months....that’s something you never want to hear. Those words echoed in my head daily after that. 6 months. 6 months. 6 months.

Pretty much right away we decided on doing the surgery to remove as much of the tumor as possible. The surgery took place 2 days later, on June 29th, and lasted about 9 hours. Matt's parents and brother flew in from New York. The waiting was excruciating.

After the surgery, at about 9 pm, Dr. Yao came out and said that it went very well and that he was able to remove about 90% of the tumor. Matt stayed in the hospital for a couple of days after that and then was able to go home on Saturday. Of course, the day after his surgery, Matt was already joking around with the therapists and nurses and was in good spirits. And was already talking about when he could have pizza next!

After that, it was just a waiting game to get the results back to confirm what type of tumor it was. I prayed and prayed that it would not be GBM, but about a week later we found out that it was. Grade 4 Glioblastoma. That was an extremely emotional day for us. As is to be expected when  you hear something like this, we had our moment of crying with each other. I remember standing in the kitchen, in his arms, me crying and him crying, and me saying that I couldn't lose him, I couldn't live without him.

But after that day, we focused on the next step: the treatment plan, what we were going to do to fight this thing. In the beginning I was scared, and I sometimes found myself fearing the worst....but then I realized that I could not have that mindset and dwell on the negative. So I immediately turned to God and clung to scriptures. I asked God to renew my mind and change my thinking and to open my eyes to what He was using this for and how He wanted to use me through this, for His glory. I decided from that moment on, to not think too far ahead, but instead, to take things one day at a time and to cherish each and every moment, to see the good in every day. I decided to trust and have faith. 

Matt was up walking around the neighborhood and back in the gym less than a week after his surgery. We floated in the pool, went out to eat, played putt-putt, went out for ice cream...just enjoyed life. At the same time, we were considering our treatment options. The typical protocol for GBM is chemotherapy and radiation, but after getting a few second opinions, we decided to pass on the radiation and just start with the oral chemotherapy. Matt also decided to do the keto diet, and we also started researching supplements that could help. We figured if it won’t hurt, then why not? So he was on turmeric, DHA, and Boswellic acid, among other things. 

Later in August, Matt started using the Optune device, which was showing some promise in helping people with GBM live longer. It was annoying, but just like with the diet and supplements, we were willing to try anything. Unfortunately, Matt was only able to do a couple of months with the Optune until he developed a rash that would last for days every time we put it on. So we and the doctor made the decision to stop that treatment. Matt continued with the keto diet and the oral chemotherapy up until December. At that point, his neuro-oncologist decided to switch from the oral chemo, to infusions of Avastin, which would be administered intravenously every 2 weeks. 

We took at trip to New York to visit  his family in Steptember, and I’m really glad we did, because things started declining not long after. See, at the same time as all of this was going on with the tumor and the treatments, Matt’s Parkinsonism was getting worse as well. He began losing his balance, falling more often, and having a harder time walking and using his hands for things. It was hard to distinguish what was the Parkinson stuff and what was the tumor growth, and even the doctors couldn’t really say. 

I know that those things really got to him, and he was frustrated and discouraged that he couldn’t do things he once could,even right after his surgery. Everything he did required so much thought and effort that walks weren't even enjoyable anymore, because he had to think about how to move his feet and swing his arms. We’d go out to eat at a restaurant, and I had to watch him struggle to cut his steak. I hated watching him have to go through that. I know that it was wearing on him mentally. He wasn’t working at the gym at this point, but he was still driving and training his wrestling class at OVW, which I know really helped him and made him feel like he still had purpose. But eventually when Matt could no longer walk, he was unable to continue teaching the class. 

Then Matt ended up getting the flu in the middle of December. At that point, he had been using a walker for a few weeks, but after being at the hospital for a few days with the flu, he was wheelchair bound and really never walked again. It got to the point where Matt’s parents came down in December and then just basically moved in with us. Matt needed 24/7 care and was really unable to do much for himself from then on. I will admit, that was a hard few months, adjusting to being his caretaker, moreso than his wife. We had to move Matt from bed, to chair, to recliner, to bathroom. It was physically exhausting at times. But I’m so thankful for his parents being here to help. It made things so much easier. 

We did try physical therapy and even went to Frazier rehab for inpatient therapy in February for 2 weeks in hope that he would be able to walk again...but the results from that were minimal. Things just slowly kept getting worse. During this time, Matt was having a harder time talking and the left side of his face no longer moved. He started doing a thumbs up or down for yes or no. Eventually he stopped talking completely, besides the occasional “yeah” when we asked him a question. He was also having a harder time chewing and swallowing, so he started eating less and less, which of course led to weight loss. It has been really hard watching my big, strong, outgoing, funny, full of life husband just slowly wither away....

Throughout all of this, Matt and I really never discussed death. A part of me wishes that we had, but I just never wanted to make him think that I didn’t think he would make it. Because I still had hope, and I didn't want him to give up hope. And maybe he felt the same way and was afraid to talk about it with me. We were both probably trying to watch out for each other. I didn’t realize that at some point he would lose the ability to talk, and I’m sure he didn’t either, so I do wish there were things we had talked about before that happened. 

He didn’t open up to me too much about how he felt about all this, besides his frustrations about the things he couldn’t do anymore. I feel like he probably held so much inside because he didn’t want to worry me. When he was still able to talk some, he did express to me that he was a little worried and scared the day we talked with the doctor about the tumor growing and causing increased swelling back in March. I think that was the point when the doctor recommended radiation, which Matt wasn’t too thrilled about. We did finally decide to do it, since we didn’t seem to have any other options at that point....And I know that like me, Matt wanted to know that we tried everything we could. 

At the end of April, after talking with Dr. Larocca about Matt’s continual decline, he told us he thought we were at the point where we should stop treatment and that Matt probably only had a few weeks left. He finished the radiation treatments, but no more chemo. That was almost 2 months ago.

There are some days every now and then when Matt is more alert and tries to talk, but we can’t understand what he says, which is super frustrating. I can’t imagine how that must feel to want to communicate but not being able to. Then there are some days when we can’t even get a hand squeeze or a wink in response to our questions. But I know that he’s definitely still aware and understanding of everything that is going on. 

He does often stare off to the right lately for some reason. The smiles I get now are few and far between, but I do still get them occasionally. I try to make him laugh but don't usually succeed anymore. I always tell him that I know he's laughing on the inside! Either that, or he's like, please get this crazy girl out of my face! We have him on Ativan for seizures and anxiety, which seems to help keep him calm and peaceful. He hasn’t had solid food in weeks, but I am able to  get in a protein shake with whole milk and lots of peanut butter. He's just skin and bones now... Just the other day I looked at him when I was taking his shirt off, and it made me tear up because he’s starting to look like a skeleton.

We ended up getting hospice care at the house about a month ago, which has been helpful. Our main concern now is keeping him comfortable and pain free. Thankfully, so far he hasn’t had any pain,which I've read is common with brain cancer. For that, I'm thankful. I just hope that mentally he is still in a good place. That’s all I pray for now. I read the Bible and pray with Him, and remind him (and myself) that this life is so short compared to eternity and that one day we’ll look back and this will all just be like a blink, just a speck, in the broad scheme of things, in light of eternity. One day we’ll be with Jesus and live in pure joy for an eternity and all of these struggles will have seemed like nothing. It sure doesn't feel like that now... but I believe.

I just love this man so freaking much. He’s my “person”. He’s the one I wanted to be with forever. He's the one I wanted to grow old with. I wanted him to be my whole life, not just a part of my life. So many times I’ve wished that it were me going through this. I would trade places with him in an instant. I always told him that I wanted to die before him because I just didn’t think I could survive without him, but I knew that he’d be okay without me. If you would’ve asked what my worst nightmare was, it would be losing him. So many times I’ve asked myself, how can this be happening? I can’t believe this is really happening. But it is. And this is part of life. People get cancer and people die. We can’t do anything about that, but we can control how we respond to these circumstances and how we allow God to work in us and through us. I can already see the growth and change in me. 

All I want, and all I know Matt wants people to see and to learn from our journey, is the goodness and grace of God. We want it to help people to trust and cling to their faith in Jesus, no matter what trials they may face in life. Because we will all face them eventually. If just one person gives their life to Jesus through this, then it was worth it. 

I’ve already had numerous people message me saying that they never pray, but that they’re praying for us, or people who have told me that we are inspiring them in their relationship and walk with God. That means SO much and makes this somewhat bearable. I know it has to make Matt feel good to know that he has impacted so many people, that he has walked the walk and been a witness and set a good example for the Lord, as we are all called to do as Christians. It sucks to go through something like this, but I know God is working and moving. All the both of us want is for Him to be glorified. As Jesus said in John 12: 28, Father, bring glory to Your name.

Comments

  1. So much of what you wrote I went through. Especially the not wanting to talk to him about death. You are not different than anyone else. When my husband was able to talk, getting chemo, being himself all I wanted was to put the demon out of our minds as much as possible. Like Matt my husband (Rusty) was larger than life. He was 6' and in his prime 240 lbs of muscle. He was the guy that anyone wanted to help when there was something to move because they knew he could lift it himself. Even just before he got sick he was building a shed at our home in Kentucky ( and he passed away 4 short months later). I also understand the happiness in that he is not in pain. Thankfully Rusty's went to his meninges (the lining of the brain) and he lived in a fantasy world his last few weeks pain free. But we couldn't have any real talks anymore because he wasn't in reality. The one thing that helped me the most was remembering that God did not give him Cancer. That is part of life. What God did was keep him pain free until it was time to go home. The doctors in Kentucky are wonderful in that they are not afraid to pray with their patients. I was also very accepting when a Doctor, PA etc asked if they could pray with him. Matt's love for you will always surround whether he can speak or touch you or not. He will always want you to be safe, happy and know his love for you will always go on.

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    1. I’m so sorry for your loss. Thank you so much for commenting.

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  2. My heart breaks for you so much. You are both in my thoughts and prayers, thank you for sharing this. The both of you are so incredibly strong. I can't even imagine life without my boyfriend, and what you are going through right now has reminded me constantly to be grateful for every second I have with him and embrace it as much as possible. Although it is so difficult, I want you to know how much support and love you have from so many people. Thank you for staying resilient and being so inspirational. Lots of love

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    1. Dear Lindsay!

      In 1984 my paternal grandmother, Big Mama, suffered a stroke from which she would never recover. She was 79 when it occurred, and it was closely after her third son had passed away. In 1986 the Johnson/Patrick clan held its first family reunion there in Union, MS. I was an Airman in the US Air Force at the time. Like everyone did, I went into Big Mama's bedroom to say hello. It was the first time I had seen her in her condition. She could not talk or even move from the mid-chest down. I'd talk to her and she'd just listen, nodding her head every once in a while, but the whole time staring right into my soul. When I was active duty she wrote letters to me. Oftentimes, she had no paper to write on, so she would scribe a letter on the back of a used envelope. Bless her heart! She kept in touch right up until the stroke.

      Anyhow, I enjoyed my days with the family for the festivities of the reunion. When it came time to leave there, my immediate family went into her room to say goodbye. As it turned out, it would be the final time I'd see her while she was alive. Finally, the only ones left in her room was my mother, my aunt (Big Mama's caretaker) and myself. I leaned over her bed to kiss her and talk to her some. As I was getting ready to turn to leave, she had something she wanted to say to me. So I looked at her intently. She tried to talk, but could not. She was making sounds but no words would come out. I couldn't understand what she was saying. She could see in my face that I could not understand her, and I wouldn't dare attempt to pretend that I understood what she was saying. So she exerted more effort in getting my to comprehend her. I could not decipher. So she exerted even more effort - lifting her torso off the bed and demonstrably increasing her voice so that I could get the words. I begged God to tell me what Big Mama was trying to say to me. I begged Him! But I never was able to understand exactly what she had for me. Finally, utterly exhausted and absolutely nothing left, she fell back to the bed out of breath.

      I was destroyed! That occurrence deeply haunted me for years and years. It still gets to me sometimes. I felt guilty and spiritually inept for not being able to make her happy by simply understanding what she was trying to tell me. Even afterwards I prayed for the Lord to tell me in no uncertain terms what Big Mama's message was. My aunt, who could sometimes understand Big Mama because she was taking care of her and was with her all the time, told me later: "Oh! She was telling you to come back and see her sometime." Perhaps. But I could not comprehend her ... at the time ... standing in front of her ... looking into her eyes ... watching her lips, I.Could.Not.Understand.Her! I was desperate to know but was never to be satisfied that I fully knew. I don't know why the Father would not clue me in. I wanted it so very bad, but He did not grant me that request.

      I've said this to say that I do understand your frustration with not being able to decipher Matt's sounds and mannerisms. Like you said, and like it was for Big Mama, I bet his frustration is much greater than yours. To have the words stop at the lips and not come out has got to be one of the worst things ever. I just trust that the Lord, somehow, someday will make it all alright. Like you, I have to trust that. I have to. What other hope is there? He is the only "game" in town. He's too high to climb over, too low to crawl under, and too wide to go around. He is it! Like how He did for Jesus when He was praying in the garden, I pray that God (and I know He will) sends an angel to you to strengthen you. Hold on! What else can we do?

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    2. One more thing ... a gigantic life frustration for me is that though I love the Lord with everything I am, I am gay. I did not choose it. I did not want it. It's the way I have always been since I can remember. It's a mystery. I don't know why I am this way. There was nothing that happened in my conscious life that caused me to be gay. My parents raised all of their children the same way. I was not sexually molested or anything like that. It's just the way it is. Personally, I believe it is just one of the conditions that man became exposed to as the result of Eve (and then Adam) sinning in the garden of Eden, and the resulting fall of mankind. Disease, pain, hardship, medical disabilities, famine and starvation, etc. are all the result of the fall of man; for before that took place there was nothing wrong or peculiar in the world.

      Whatever the condition man finds himself in, whether self-inflicted or through no fault of his own, he must overcome in order to receive forgiveness from God through His Son, Jesus. Whatever "it" is must be surrendered/relinquished [deny ourselves], then take up our cross and follow Him. I strongly believe it is the most difficult command that Jesus gives us!

      I say this because in the past I prayed, begged, beseeched the Lord to remove this from me. I know He CAN, yet He has not. It is my thorn, and I believe the Lord has told me, like He did the apostle Paul, "My grace is sufficient for you." It is a weakness for me in the face of Christianity. Yet, though the thorn is a messenger of Satan (as the Bible teaches), I believe that when I am weak in this, I am strong. [2 Corinthians 12:10]

      "The Lord answers every prayer. Sometimes the answer is 'yes'. Sometimes the answer is 'no'. Even so, Amen."

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  3. Oh Lindsay how I pray for you and Matt’s family. I am impressed by your faith. You help me to realize that I am taking to much for granted in this life. Matt was blessed to have you as his wife. May God comfort you. I pray for peace and comfort for you during this journey.
    Psalm 23 King James Version (KJV)

    23 The Lord is my shepherd; I shall not want.

    2 He maketh me to lie down in green pastures: he leadeth me beside the still waters.

    3 He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.

    4 Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

    5 Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

    6 Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.

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  4. Please read Revelations 21:3 -4 ..... this is a very difficult time for you, Lindsey I'm sorry you're having to go through this, but death was not intended for mankind, in Genesis death entered through sin when Adam and Eve rebelled against God. The purpose, we were created to live forever here on Earth in Genesis he told Adam and Eve to be fruitful and fill the Earth. His purpose for the Earth has not changed. Your husband has fallen asleep in death he now has the opportunity for the resurrection, to live here forever on the Earth. We worship a loving God, why would he put Mankind through things such as your husband dying with this tumor, then having you hurt, suffering, missing him while he is in heaven watching all of this. Doesn't make sense does it? Please read again Revelations 21 :3- 4, if you you would like to talk to me more on this you can reach me at inmemoryofashley@aol.com

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  5. Linday, I just saw the news on Yahoo about Matt. I don't know either of you and not sure why I read it. But as I read your comments they pulled from your Facebook post and this blog, I was really moved by the faith Matt and you have and are openly sharing. It's very rare to hear someone in the public eye and world talk about God, their faith, and share Scripture so openly. I just wanted to tell you how sorry I am for the loss of your great love and for all Matt had to endure this past year. Thank you, again, for you testimony - I will lift you up in prayer.

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  6. Thank you for sharing your testimony. You've both been an inspiration to others. May God grant you and the rest of the family comfort during this very difficult time.

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  7. I watched my father go through the same fate due to lung cancer( he never smoked a day in his life) it's hard to watch big,strong ,independent men you love(or any love one for that matter) go like that. Everything you describe in this particular blog entry is what my mom was going through. I know that for a fact, I think if she read this she would agree, and break down , I have no doubt about it. 38 years of marriage is a long time.When he was first diagnosed we had a conversation at my kitchen table about life,death, family,love. I always new he had faith he would beat it until about a month before he died but looking back at that convo now, I believe he new death was coming for him. My siblings, mother,my eldest niece and I watched him take his last breath September 1st 2017 at 4AM. He fought for his life for about a year and a 4 months. He always said" from God we come and to God we shall return. I often let my selfishness come into play and wish he was still here, I cry for one more convo, laugh,smile ,and advice from him. I always come to the realization that he is in a better place, waiting for us and until we meet again he is still and will always be with us. From the 2nd paragraph in I started crying. I feel for you and your family. God bless you. I will keep you and your family and your husband in my prayers. May God hold him in favor, may his grave be a garden from heaven. May you and yours find peace.

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  8. I just read about your husband's passing this morning when I logged on to my computer. I realize we don't know each other personally, but as another follower of Jesus I would like to offer you my sympathy. My family has been touched by this type of cancer also. I lost my big brother, my only sibling, two years ago. It is still hard to believe at times that it happened. He was only 58 and looking forward to retirement. He was diagnosed in February of 2015 after suffering a seizure at work and he went home to heaven on June 18, 2016. He went through the radiation, chemo and two surgeries. But nothing could get it all. So I need to hang on to my belief that God gave him an ultimate healing by taking him home to Heaven. I am so thankful that he loved the Lord. It was very hard to see him change from what the disease did to him. But I know he is whole now. Thank you for sharing your story and your faith. Maybe my brother, Tim and your husband will cross paths in Heaven. Thoughts like that give me peace. God bless you with continued comfort and strength in Him.

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  9. My husband just passed away on June 9th after 3 1/2 years of dealing with metastatic prostate cancer that had spread to his bones. Somewhere I read where you said the person that you wanted to comfort you the most isn't here to do it. So true! I want to tell you about a small book I came across on the website timeofgrace.org. It's called Grief Doesn't Have the Last Word. It is written by a pastor whose 16 year old son took his own life and what the father learned from the experience. I have been reading it over and over especially at times when I miss my husband the most and it helps to bring me peace. I pray that God will give you peace as well.

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  10. It's by sheer chance that I came upon your story today. I had not heard of your husband or you before and I'm halfway across the globe: I only read a line about Matt's passing on Wikipedia but I felt somehow compelled to come here and read your words.
    I am lucky enough not to have had any relative or friend battle cancer, but I do have a loved one I am truly and deeply committed to spend the rest of my life with, and the mere thought of what you must be going through in this moment is terrible. I think no word of comfort could really do much right now, let alone from a complete stranger, but I wanted to let you know that your love for your husband really shines through the thoughts you've shared on this blog and I wish and believe you'll muster up the strength to pull yourself through this awful time. A thought and a hug from Italy..

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