zoelaw's blog

CDH1 (E-cadherin) anyone??

2010-08-02T17:47:39Z

Hi, just posting this on the off-chance that one of you may have come across this genetic mutation. There's apparently only around 100 families worldwide with this but Im hoping just one of them comes on here. Just had Joe's DNA results back and been told this is the devil responsible. I'd really like to speak with anyone that has this mutation and is having screening or has had a prophylactic gastrectomy - got a lot of very stressed relatives right now and could use all the help and advice I can get. Thank you xxx

Life goes on

2010-07-05T16:47:38Z

Hi everyone its been a long time since I last blogged but today feels like a good day. Ive caught up with site news and am so glad to see that some of you have happy news to share. Im afraid i'm not quite ready to be of much use to any of you and still really struggle with this horrible new life I am forced to live. Please know that though I don't comment you are all very much in my thoughts. Its been 3 1/2 months since Joe died and not a single minute of the day passes when I don't think about him. Im trying to put all the love I have for him to good use and have set up a charitable fund called Joel's Wish. We support the Severn Hospice in Shrewsbury and are funding equipment (so far 4 handheld video cameras) for patients and their families and contributing directly to patient care. I'm also planning to use a portion of funds to directly benefit young people with cancer and hope to be able to gift modest sums to patients aged 19-30 to pay for special days out. If you would like to know more about Joel's Wish we are on Facebook and will shortly have our own website.

Joe insisted that I should go back to uni and finish my nurse training so, next week, I go back. Don't know if Im ready but I guess theres only one way to find out. Ive got 6 months left to complete so hopefully I'll be able to hold it together for long enough. The District Nurses who were visiting Joe at home have offered me a job when I qualify and I have big plans to change current protocols in my area to allow all patients to have i.v. fluids at home and at end-of-life if they so wish. Nobody should have to beg for the right to comfort and a few more days of life, as Joe did, simply because a policy doesnt exist.

For us, life goes on. When I knew that Joe was going to die I honestly didn't think I could live without him but he gave me my orders and i'm doing my best to fulfil them xxx

At peace

2010-03-25T21:14:20Z

My son, my darling boy,

Want to hold you in my arms,

Feel the warmth of your skin,

The softness of your hair,

Shelter you from harm,

Ive cried a million tears,

But they can never heal this pain,

What i'd give to see the light of life,

Shine on your face again.

Rest in peace my darling boy, Joel Lawrence 24/7/90 - 25/03/10

Chapter 8

2010-02-09T00:04:48Z

Joe has been in the Severn Hospice at Shrewsbury for 11 days now. For anyone reading this blog who has any misgivings about hospices please read on. The Hospice is fantastic, full of warm and welcoming people who truely care. The support we have received over the last few days has really strengthened both our bodies and minds to fight this bloody terrible disease. Sadly Joes pain is still an issue, he had a CT scan on friday to try and determine what is going on. He had a really bad night on friday so I drove over and stayed with him on saturday night. Poor boy woke every 2 hours needing oxynorm and buscopan injections and by sunday morning was in a terrible state of anxiety; hyperventilating and sobbing uncontrollably. His lovely doctor, Clare, came in on her day off with his CT results. The good news is the CT looks good, the only finding being a moderate amount of ascites in his abdomen which is apparently to be expected as he has seeding in his peritoneum (still too small for the CT to pick up). As Joes pain had increased Clare had him admitted to Royal Shrewsbury Hospital to rule out appendicitis, peritonitis, obstruction etc and he was given the all clear this morning. So, what on earth is going on?? Thoughts today are acute IBS and adhesions, he now has a syringe driver to give continuous pain relief. By the time I left him this evening he looked much more comfortable and since then he has slept solidly so I can only assume its working. Im starting to see a light at the end of the tunnel...

Chapter 7

2010-01-12T16:33:30Z

Hi... where do I start? Joe was taken in to hospital with severe abdominal pain in the early hours of sunday morning. After several hours of no news (you can probably imagine what I was thinking) we were told that Joe has adhesions that have caused kinks in his bowel. Treatment is, morphine, NG feed and iv fluids to rest his bowel and hope that this is enough to put it right.... Fast forward to this morning. I met him at the hospital for his oncology appointment and, to cut a long story short, he has multiple secondaries. His oncologist suspects that they may have been present before his chemo began last september but were not large enough to be seen on his PET and CT scans. They want to try and keep them at bay by doing another course of ECF because Joe was so well and seemed to respond to treatment. Problem now is that Joe is too poorly for chemo, I have a horrible feeling that the 'adhesions' are not all they seem. Joe took this all in, told his oncologist that he wanted all the news not just the fluffy version, then had a cry, not for himself but for his friends because he doesnt want them to be upset. My son is incredible, an inspiration and a truely brave soul. Im having a moment right now so will post again later.

Zoe xxx

Chapter 6

2009-12-21T14:16:47Z

Ive just collected Joe from hospital, hes upstairs playing on his xbox and has eaten a KFC on the way home. All seems so normal, so good and this makes what we have just been told by his surgeon so so difficult to comprehend. We were told that the tumour was large but confined to the stomach wall and out of 18 lymphnodes removed only 2 were effected - so far so good - then he told us that whilst he was operating he noticed some suspicious areas the size of pinheads on Joes transverse colon. He said these areas would not have been picked up on his scans because of their size and that all we can do is repeat chemo then watch and wait. I am utterly devastated and so confused, this is so bloody unfair hes been through so much and has been so brave.

Chapter 5

2009-11-08T13:48:57Z

Hi,

This is a goodbye message to everyone who has been so kind and supportive to me since I joined the site. Ive asked admin to remove my profile but would like you all to know that you will remain very much in my thoughts and prayers.

Zoe xxx

Chapter 4

2009-10-21T00:35:33Z

Hi everyone, I havent logged on for a while but its good to be back. I m really happy to report nothing but positives. Joe only has another 10 days of chemo and is doing so well. Hes looking and feeling so much better and has maintained his weight, his bloods have been fine, no nausea, and hes even managed to hang on to most of his hair. When he was examined last the oncologist could not feel any mass in his stomach, I can only assume that this is good news but will have to wait for a CT to confirm it. Surgery is scheduled for 1st week of December so Christmas is coming early this year. Its Joes favorite meal so we will have a big family feast before the op.

Ive just realised its way past my bedtime and we have clinic in the morning so night night to you all.

Love and prayers

Zoe

Chapter 3

2009-08-31T10:43:49Z

All systems go. The last 2 weeks have been surreal and a real mixture of highs and lows. Joe started his first cycle of chemo (ECF) on friday at Cheltenham. What a lovely hospital, the nurses are fantastic and the consultant Dr Reed is kind, caring and positive. They have a tranquil garden by the Oncology unit and I sat out there while Joe was having a chest xray to check his PICC line. I felt something on my shoulder and it was a young robin, he just sat there for several minutes looking intently at me as if to say "its ok youre not alone" and that somehow made the whole weekend so much more bearable. Joes doing really well, no side effects other than fatigue at the moment and he even went to a friends for a beer last night. Hes steadily gaining weight and now looks better than he has done for months. Joe has been referred to the Bristol Homeopathic Hospital to see Dr Liz Thompson, hes started taking Iscador (mistletoe) drops and will have a constitutional remedy prescribed when we visit on the 28th Sept. Joe has always responded well to homeopathy and the research on Iscador is very encouraging so Im really praying it does what it says on the tin! We have been searching for Joes biological father, Mark (my husband adopted him when he was 7). I always hoped that they would meet one day and that Mark would be able to make things right between them (long and painful story). To cut a long story short the police informed me that Mark died in January of pancreatic cancer. Words cant really express how we feel right now but gutted probably comes close. The positives - we now know that this cancer is probably paternally inherited so that is some relief to my sisters and their children and Joe has met his paternal Grandma, they got on fantastically well and the rest of the family want to be part of his life and support us through this. Love and strength to you all, Zoe x

Chapter 2

2009-08-10T10:44:56Z

Today is proving to be a little 'difficult' so please forgive my ramblings. Joe and I returned from hospital on Wednesday and are expecting the results of his PET scan today. His laparoscopy was promising, no visible signs of the cancer spreading, but I have a real sense of unease today and im not sure how to deal with it. Hospital was not what I expected and our keyworker let us down. I had arranged to meet her on Monday to talk and visit ITU to meet the nursing staff and discuss the level of nursing care I would be allowed to participate in, she didnt turn up. On tuesday I asked to see her and was asked what I wanted ?? What I want is for someone to guide us through this and give us the right information at the right time, and, if its not asking too much, I would like to feel that those caring for my son appreciate how precious he is. No one has sat next to Joe, touched his hand or offered any emotional support throughout this nightmare. What is wrong with them, he is just a scared boy and he needs to know that they care - I need to know that they care. Our keyworker looked blankly at me and said she would bleep Macmillan - they were a no show. Joe became hypovolaemic following surgery, was allergic to his dressings and developed blisters, has a chest infection and now has tonsillitus. This is relentless, it is so incredibly painful to watch the most precious person in my world become so poorly and its going to get much much worse before it gets better, if it gets better. All my common sense and nurse training has gone completely out of the window and im panicking about minor things - our out of hours Drs are probably sick of me. How do people do this, how do you cope with the fear and the heartbreak without falling to pieces. Im so tired of waking up with this nightmare still continuing and just pray for a minute of peace when cancer is not all I can think about. I dont really know what concerns me most - my loss of faith in the medical profession the people I have to trust, or a loss of faith in my own ability to be strong for my boy no matter how hard this gets. Zoex

Chapter 1

2009-07-31T21:14:34Z

Have just logged on and found all the lovely messages of support from everyone, thank you so much. I will respond but am just a little too emotional right now. We met Joe's surgeon yesterday - i'm in shock, we are all in shock. He says that Joe must have a total gastrectomy because he believes that the cancer is a genetic fault within the stomach itself. I just didnt expect this and have absolutely no idea what this will mean for Joe longterm. On monday Joe and I will go in to hospital for a PET scan, laparoscopy and lung function test. In two weeks he begins the first of two cycles of chemotherapy, then, six weeks after chemo comes surgery. Joe keeps asking me how he will be able to eat without a stomach and I just cant answer him. He is so positive though and tells me there is no point in worrying because it wont make things better. He's gone to a festival tonight and Im so afraid but so happy for him. I think I drove him from the house nagging him to take Ensures and pills and waterproofs etc. None of my suggestions went down particularly well but he relented and took a bin bag for cover and a bag of 'essentials'. He just wants to be 'normal' and I know he's sensible but I just cant let go of my fears. Ive filled today with practical things - calls to Macmillan support, my university (ive stepped off my course), our GP and benefits helpline. This is something I can control at the moment so its proving therapeutic. My husband has just stumbled in to the kitchen sobbing - he's written some words for our boy and says that I can share them with you. The C word. One moment a smile The next a frown The word cancer rings out loud One moment of joy Gone in a flash Seems like my world Is going to crash My son, my son What an awful plight Together we'll stand In the fight of all fights

Are you sitting comfortably now i'll begin.

2009-07-29T13:04:27Z

15 days ago my world changed. My sweet and gentle 19 year old son had an endoscopy, following 3 weeks of vomitting, and a 3cm stomach ulcer was found. The days that followed have been absolute agony, there was a 'mix-up' with communication and nobody told us that the biopsies showed a malignancy. How the mind runs wild without sufficient information - this has not been helped by the fact that I am a student nurse and rather prone to flights of fancy. We were given an appointment for a CT but no one told us why and we arrived at clinic yesterday with our consultant believing that we had already been given the results of the biopsies. Anyway to cut a long story short and move on to the positives (everyone says I must think positively but how the hell do you do that?) my son, Joe, has stomach cancer but the CT showed no spread. The pessimist in me had already convinced me that there were secondaries everywhere. The consultant must think i'm rather mad because my reaction to this news was "Thank God this is the best news ever". Joe is taking this all so well, too well, and insisted on visiting his friends last night to tell them his news. His only question for the nurse specialist was can I still have a beer and his only concerns are losing his job (as a chef) because he loves it and having a big scar. On reflection these are completely normal responses from any teenager whose world revolves around socialising, having the means to socialise, and appearance. Tomorrow we go to Gloucester Royal to meet the surgeon and discuss the options - I believe chemo and partial gastrectomy are the most likely course of action. Everyone keeps telling me how incredibly rare this is in a young man of Joes age so I guess what Im looking for is somebody who has some experience of this - Is there anybody out there?