My Nonprofit Reviews
Review for Pseudomyxoma Survivor, Warwick, , United Kingdom
3rd of August 2017,my dear mum received shocking news that she likely had a rare disease called Pseudomyxoma Peritonei .Mum ,accompanied by my dad, had met with her local consultant to receive news regarding investigatory CT scan findings. Mum was informed by her local consultant CT images appeared to be 'highly unusual' and likely showed evidence of PMP.PMP a condition beyond the level of expertise of the local team, mum's case was immediately referred to a specialist Peritoneal Malignancy Centre/Basingstoke UK; hundreds of miles away from our local hospital. My mum and dad left the consultation in shock, they felt fearful and isolated. The following day, mum and dad decided to seek out help and support from local Cancer support organisations but faced rejection as mum had not received confirmation of diagnosis from the specialist team, the local support organisations had not heard of PMP/Jelly Belly; 'come back,get in touch when you know more and can explain what is you need help with' was the response.
3rd August 2017-the day of mum's consultation regarding her CT scan ,I was thousands of miles away from home, on holiday visiting a dear friend of mine .I phoned my mum in the morning to let her know I was thinking of her ,mum admitted to feeling a little bit nervous ,nervous because she had gallstones and thought it possible she would be informed the gallstones would require surgical removal. Mum assured me that overall she was feeling okay and would be in touch to let me know about the consultation. Later that day I received a text message from mum- my sense of worry increased, mum's preferred mode of communication is to make a phone call, the text so vague and made no direct reference to the consultation. I phoned mum, she answered and told me the consultant had referred her case to a different consultant so he was unable to offer much information.A few days later ,just prior to my flight departure I contacted my brother and asked after mum and dad,my brother told me mum had been informed that she could have condition called 'Jelly Belly' and that her local consultant had referred her case to Basingstoke-my heart sank ,I had no idea what Jelly Belly was but for this to be referred to a specialist team located hundreds of miles from home I could not help but worry. As soon as I arrived home, I looked up 'Jelly Belly' online-no surprise to see references to confectionary ,I proceeded to look up 'Jelly Belly medical condition'...cancer,not cancer...my head in a spin,I recall spending hours online, trying to grasp any information about the condition. Next day ,I visited mum and dad, they told me all they could about the brief meeting with the local consultant, mum confirmed Basingstoke had been mentioned and the term 'Jelly Belly'. Tears flowed when mum and dad began to talk of their experience of rejection they faced when they approached their local cancer support team ,not knowing who to turn to for information, help, support, we all felt a sense of isolation and fear.
Pseudomyxoma Survivor ,I can not recall exactly when I came across the website but it was before mum had met with her consultant at Basingstoke .I visited mum to let her know I had found a possible source of support, a charitable organisation, the website positive, informative...I asked mum is she would like to take a look at the website and get in touch with Pseudomyxoma Survivor -mum wanted some information but not too much so I asked mum if she would like me to act as 'editor'. By the end of August 2017 I was a member of the Pseudomyxoma Survivor Facebook Support group. Pseudomyxoma Survivor, above and beyond expectations. Pseudomyxoma Survivor offered a warm welcome, an introduction to a community of people across the globe all connected as a result of a rare disease. Pseudomyxoma Survivor,the folk running the charity and members of the FB group offered hope and support when needed in the most troubling of times .Mum met with the specialist consultant 27th September 2017 to be informed it likely she only had a few months to live ,the surgical team considered accepting mum to be a candidate for surgery as high risk ,mum filled with fear but no real 'choice' agreed to accept the offer of surgery. One full working week to make arrangements to return to Basingstoke from Scotland ,mum underwent cytoreductive surgery with HIPEC 10th October 2017.2020,nearing three years post surgery, mum is still with us and still making progress in terms of recovery, mum has defied many odds, since reaching out to Pseudomyxoma Survivor ,the charity has offered support every step of the way. My mum and my dad have never made direct contact with Pseudomyxoma Survivor but have felt supported by the charity through the support they have given to me, mum and dad have seen messages of support given by members of the FB group, simply to know that we have never travelled alone in this, to have messages of support form people from across the globe. My mum's journey, my mum's experience is now something that can offer hope to others too.