Weekly Blog No 71 – Cancer Update

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It’s been a couple of weeks since I last blogged and I will explain why.

I was in London having multiple scans and tests to reevaluate my cancer at the Royal Free Hospital and when I returned I fell down the stairs. I did indeed bruise both arms, my right foot and of course my ego. I don’t have an explanation, I wasn’t intoxicated and I didn’t lose my footing. Clearly the stairs were at fault and all I remember is sliding down the stairs like I was on a children’s park slide. No screams or yelps just Mr Zebrakat hearing the thumping on the floor and coming out to see if I was ok.

The Royal Free Hospital, what an amazing hospital, so so professional from administration staff to doctors. My visit was both organised, stress free and a patient’s paradise compared to some of the experiences I’ve had. I was poked, nuked & even puked, in that order as well. I also had beautiful red patches on my arms from surgical tape as I have an allergy. Yet I did conquer it all with Mr Zebrakat at my side.

One funny moment we saw, was when a nurse was calling out patients names in a department, no one appeared to be responding. He constantly repeated names but everyone seemed to wrapped up on their mobile phones. At this point he proceeded with the following words ” is everyone playing candy crush”. Clearly he got laughter and a reaction because patients were responding to their names and he was able to get through his patient list. A great tactic on his behalf but it does prove we are completely immersed in our phones in the UK.

On my last day of testing I was asked if I wanted to hear my first results to save me a further trip down the following week. Of course I wasn’t going to say no because I wanted to be informed to see if my observations were right. My observations where, “progression” but it’s always nice to hear the word “stable”, a great word for my cancer. Thinking about it now, I don’t think I’ve ever heard the word “stable”.

I met another Dr as I was squeezed on to his clinic list and after a few clarifications, he said that magic word to me “progression”. Bingo I was right, I knew because of the symptoms I was experiencing it couldn’t be anything else. The first results confirm there was tumours on the liver, something I’ve been perusing for a while. Furthermore I have various areas of disease in my stomach, again not surprised due to pain and other symptoms. He discussed with me seeing my Cardiologist again and having a scope(camera) of the bowel. He also mentioned that treatment in the future would be liver directed. I felt it was his trump card and he didn’t want to play that card just yet. This made sense to me at this point as I knew there was still a couple of investigations required and my results still have to be reviewed by the MDT Meeting.

A week later the Dr called me again to say that my last scan revealed that I had serious malabsorption. Hopefully with some new meds my symptoms may ease in time. One thing that did become clear was, even though I have disease in my body, my tumour markers don’t represent the disease. My tumour markers are still within normal range because most patients markers are high. I clearly don’t have a trend, more of a case of being symptomatic. Unfortunately some doctors relay on these markers for progression of disease, well you can’t as I’m a clear example of that.

This week I learned that my case was discussed in MDT and it seems I have various areas of disease in my pelvic/stomach and multiple areas on my liver too. The proposed trump card of treatment, was embolisation or radio-frequency ablation. At this time this is considered to be unlikely to be any benefit. Let me explain this in Kat terms. My dandelions have been sowing their seeds in my garden(my body) unfortunately removing the dandelions in my stomach wouldn’t help me as they keep reseeding. In the liver, we could starve them of water but as there is multiple sites, you wouldn’t be able to starve my whole liver of water. Therefore surgically it’s impossible and momentarily some treatments seem unlikely.

What was my first thoughts?

Holy smokes, my garden loves dandelions. 3 op’s later and they are still growing. The Dr on my first result appointment said something to me but I will quote him in Kat terms. Most patients are diagnosed when they have a very established garden but in your case it was very very established mature garden.

How do I feel now?

I’m a little shocked because I don’t have that trump card at the minute. Im not going to make any assumptions and I will wait and see the Dr in June to check everything then.

What am I hoping for?

An extended life because at the minute that doesn’t look viable.

How’s Mr Zebrakat?

He’s good, like we will continue life as normal. I know life is not like it used to be but we try not to prevent us having fun.

My future goals?

Yes, we built a house in Canada when I was diagnosed, a great distraction and a beautiful home. We are going to continue life as normal and look for a home in the next few months. We are in a rental and look forward to feeling settled again and unpacking the two bedrooms full of boxes from Canada.

My advise for other patients?

I’m have consistently pushed and questioned things, go with your gut. If something is not right challenge it, don’t be scared or intimated. Again my latest results have proved my concerns.

Advice for anyone else?

Enjoy life, never take life for granted, appreciate what you have and invest time in people who invest in you.

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8 thoughts on “Weekly Blog No 71 – Cancer Update

  1. hope you’re OK Kat after the fall. I’ve been watching your questions for so many months and I’m glad you have some of them answered even though it’s not the best answer you were hoping for. I would say though that many people live a long time with remnant tumours so please remain hopeful that they can do something about the symptoms in the meantime. Take care

    Liked by 1 person

  2. cy says:

    Kat, I too hope the fall is the least of your worries.
    As Ronny said in his comment, people can live a long time with these tumors.
    With your “established, mature garden”, I hope in Great Britain they will consider the PRRT option. Sounds to me like it needs thinking about.

    May you have the best possible outcome,
    Cy

    Liked by 1 person

      • Kat, Prof Caplin’s Oncologist (Greek guy, can’t spell his name!) seems to be reasonably confident about still finding a way to get PRRT despite the issues with the CDF. Worth asking. He stated this online and I can provide the statement.

        Liked by 1 person

  3. Really good blog and so positive. I certainly think staying positive helps a lot. Did you get an answer on the PRRT? Were your tumours avid for mibg you did say you had the mibg scan.
    Thank you for all your comments on the mibg blog, I think PRRT involves less time in hospital but you are right the way to approach it is to relax into it, and enjoy the peace and quiet.
    I hope they come up with a treatment option for you soon.

    Liked by 1 person

    • Thank you very much. I do have another appointment in June following rhe additional tests and I will discuss it again. However he originally said that there is no funding for PRRT. The MIBG scans was whilst i was living in Canada. I don’t think the uptake on the MIBG was that great because i ended back in A & E again having another op. Im glad I had the Pet GA68 scan here, which was more sensitive to smaller tumours. Although feeling ill ever day is wearing lol. 😀

      Liked by 1 person

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