We have lost our Mags Portman –Our hearts are breaking as she was so wonderful. Our own Doctor suffering with our disease Mesothelioma when she had given so much to HIV. She set up the Terence Higgins Fund https://inews.co.uk/news/health/prep-hiv-fund-low-income-nhs-terrence-higgins-trust/?fbclid=IwAR1uU2g7k3kXfbY50dy4k6yaPGaxkIHF2llK8fvHCRftUDgYn4koUKb7nRw
Mags passed yesterday Morning at the Hospice she went into Sunday. I have had messages from her right up to last week becuse she wanted to go into the MIST trial sadly she didn’t make that.
Our love and hugs go out to her husband Martin and the two very young children. Its those that we think off, that’s the problem with Meso in younger people they leave behind very young children we are seeing a newer trend -it’s not an old man’s disease we have reached that peak now we are seeing a newer peak of younger Mesowarriors so so sad
Mags wrote a blog where she shared her journey https://notdoingthingsbyhalf.wordpress.com/
Her first write up was :-
Realise that in my last post I referred to my pending CT scan as though it was all arranged. In fact, it wasn’t quite a simple as that.
I also realise that I hadn’t even told you what all the fuss was about, why I was so worried about the prospect of needing a CT… Well.
In the end, a GP called me back and told me about my chest Xray. She read out the report verbatim. I remember hearing the words “Moderate pleural effusion, loss of lung volume, pleural thickening, fluid in the horizontal fissure, differential diagnosis: infection or malignancy”. Basically, fluid on the lung, with thickening of the membrane around the lung, likely to be due to infection or cancer.
Could it be TB? I was certainly at risk. I had worked on the Infectious Diseases ward at St James Hospital and knew I had virtually no immunity to TB when last checked. But, I knew that I had no other symptoms of TB…. No fevers or night sweats…. DARN!!!!! Now I knew there was a problem, I also knew that it had been going on for a long time, so whatever it turned out to be, was unlikely to be a straightforward infection. I recalled having some right-sided chest pain which resolved spontaneously: my GP confirmed this was as long ago as November 2015. Oh dear. I had put this down to commuting with my bike and having pulled a muscle. I was a “fit” 41y old at the time, why would it have been anything but????!!!!!
My mind went into overdrive. I had left work at Mortimer Market Centre as a doctor, and I arrived home dancing the tightrope between doctor and patient. I needed to know what was going on. At this point, I hadn’t yet been given a date for CT scan.
So, I did what I could do, and contacted a previous colleague and friend, a Consultant in Respiratory Medicine. I felt uncomfortable about doing this and was aware that this opportunity was only available to me because I was a doctor. How on earth did other people cope with being in limbo-land? I was able to justify my actions to myself because I knew that if a colleague contacted me for help, I would do my utmost to support them. We spoke, and he was able to talk me through things.
I had been listed for the Respiratory MDT meeting happening the following week, so this meant that I would definitely get my CT scan before then. I told him I was terrified and would really value seeing him in the clinic as a familiar face (I know, probably stepping over the line a little – sorry). He handled me (and my anxiety) very well and suggested that perhaps he wasn’t the best person to see me, but one of his colleagues Dr Matt Callister or Dr Kirsty Rodger would be. I didn’t know them, or their role, as it had been over 10 years since I had worked in the department. I persuaded myself not to Google them. I was Eternally Grateful for this supportive conversation. Dr John Watson – thank you +++
……..Okay, so I managed to hold off Googling Dr Callister and Rodger for a whole 24 hours. And when I did, it turns out that their specialist interests were Lung Cancer. Hmmm.
So, the CT happened at Leeds General Infirmary. All quite impressive. Not a huge waiting time. Lots of checking and cross-checking of identification and medical history. Didn’t have to wear a gown (yay!). CT contrast makes you feel flushed, heart racing, a bit like taking poppers, I would imagine. It also makes you feel as though you are going to wet yourself – who knew?! I felt that I really should have known this having ordered 100’s of CT scans, but I didn’t. It made me think that perhaps medical/nursing students should actually experience the process of having certain tests, to enable them to be able to explain things to patients more effectively.
The next morning I took the kids to school as usual, arrived home and sat down on the sofa. It was 5 minutes past 9. The home phone rang. No one usually rings this phone, and usually, I don’t answer it. But, I had a feeling that I should answer this call. And I was right…
It was the GP surgery. Could I go down that morning at 11am to see my usual GP? She had asked to see me. Oh. That doesn’t sound good. It felt like each step in the process was confirming what I had dreaded as soon as I’d had the original “call to CT”.
And, of course, I was right. The CT report was pretty horrendous, and I say that as a glass half full person. To me, it was simply confirming what I had expected, and my lovely GP ended up more upset than I was. I took away a copy of the scan report, which I’m glad, as at the time, the extent of disease didn’t really hit me.
Findings: There is irregular, circumferential pleural thickening throughout the right hemithorax associated with a moderate pleural effusion. The pleural disease is nodular and highly suggestive of a malignant process. Passive atelectasis is present in the right lung but no primary lesion or endobronchial disease. The left lung and pleural space are clear and there is no calcification on either side…..
Comment: Malignant looking right-sided pleural disease, for which the differential lies between primary mesothelioma (which seems unlikely in a patient of this age), and metastatic disease.
NB Whenever I have seen the comment “seems unlikely in this patient because..” written in a radiology report, then that differential turns out to be the correct diagnosis….
I walked up the hill from the GP surgery, with my other half Martin, to Storie’s cafe in Oakwood http://www.storiescafe.co.uk – worth a visit if you live in and around Leeds! Makes me think I could be in beloved East London. And yes, I could still walk and cycle uphill!!! Unusually for me I chose to sit facing away from all the other cafe-goers. We sat, and shed some tears, trying to take in the enormity of the result I had just been given. How do you begin to come to terms with a tumour that is circumferential throughout your hemithorax?
I met Mags at Mesothelioma UK’s Patient Carer day but we had been Cyber friends fo some time then.
A doctor coming to me to ask what trial is there, what new treatment can I try. we became such real friends and i added her into my groups and to the Mesowarrior groups. She was so lovely so fragile. I will miss her so much And she is mourned by the Mesothelioma Community and the NHS and far more !!!
Sweet smile on your face as you sleep the pain away,
Resting in God’s arms now, although in the ground your body lay.
He needed another angel in the Heavenly choir and that’s why you had to go.
As you promised, you are still with us watching your children here below.
I never would have imagined the end would be like this, me comforting you.
Holding your hand, telling you not to worry was not an easy thing for me to do.
And even in your weakest hour you tried to comfort me too,
Caressing my face, and calming my soul as only a mother can soothe.
You have always been there through the thick and the thin
No matter what I’ve done, unconditionally your love never wavering.
When I told you of the mistakes I made and all the times people saw me fall
You simply nodded and gently replied ‘so have we all’.
The key to success is learning from the past
Ensuring a brighter future is now the present task.
A pillar of strength even until the end
Fighting all life’s battles, knowing it triumphantly you would win
Pushing me to be the best that you know I can be
Reminding me to keep the faith and allow God to lead me.
Knowing it’s through Christ that I can do all things
And as He never makes a mistake I will come through victoriously.
I miss you more than these words could ever say
The pain in my heart is from one unimaginable day
After I cried all that I could; my eyes still shed countless more tears
And when I try to sleep, I have nightmares of ten-thousand fears
I walk in footsteps on an unsure path
My load feels so heavy I am not sure I will last.
Silly though I may be, I am afraid of life now that you’re gone
Because I’ve always had a mother.
And Mommy, what about my sister and baby brother.
I wish you could have stayed just a little while longer, there’s so much left to do
I wonder if I prayed hard enough and if so, did they get through.
Finding relief in knowing I will see you again someday soon
Remembering all you taught me as my soul I continue to groom
I will walk in footsteps you have walked before me
Seeing the path you walked lead you, Mommy, straight into victory.
So as you sleep Mommy, in the cradle of the Lord,
I am reassured of God’s promises in His Holy Word.
I dream of the day when Heaven’s gates open to receive me
And with your smiling face and loving eyes, reunited once again I will be.