Cheshire Cat Hunt: it’s a no brainer

Firstly, a warning that this post talks about prognosis for glioblastoma grade 4 (GBM4), so if you’d rather not know, stop here.

I’ve decided on an alliterative title today, don’t say it too fast.

On Monday, I met my consultant oncologist, Dr Sarah Pascoe, at Derriford Hospital. I had encountered her some years ago when she came to talk to us on a paramedic training day about the management of neutropenic sepsis, which is a life-threatening complication of chemotherapy treatment. She had made quite an impression then.

I like her at once; she’s friendly, warm, open, straight-talking and has a sense of humour. We talk generally, and in detail about Hunt the tumour and how he might behave in future. The treatment on offer is:

Six weeks of radiotherapy, which will be daily on weekdays, with weekends off.

Six weeks of oral chemotherapy daily, with a drug called Temozolomide; this runs concurrently with the radiotherapy and enhances its effectiveness by making the cancer cells more vulnerable to it. I will also get an antibiotic to prevent a type of pneumonia that is common with this treatment, which affects the immune system and makes you especially vulnerable to infections, and also means your body is unable to deal with them.

Following this treatment will be a six month course of chemotherapy with oral Temozolomide, taken for four days, with 24 days off.

A big concern for me as you know is in weighing up the value of treatment over months and which has some significant effects, with quality of life. That’s a particularly tough call when the prognosis for GBM4 can be limited to months. Dr Sarah is clear that my surgical result and fitness gives me a good chance of the proposed treatment working well and that I should tolerate it well too. The aim is to prolong symptom-free life.  Of course there are risks, in particular: infections; somnolence that might go on for 6 weeks post radiotherapy; sickness; blood clots; and fitting. Those can be managed however.

If I opt for no treatment I’d be looking at months, and I would be unwell with neurological problems for a significant part of that. The evidence, she says, supports the treatment in terms of quality of life. So, it’s a no brainer. Dr Sarah says that in some cases she would not recommend the treatment because it would not give a good quality of life, so we are clear on that.

When Hunt recurs, treatment options depend on where the recurrence is: this might be around the site where he originated, which is my right parietal lobe; or it might be elsewhere in the brain where he’s not accessible. So he might or might not be surgically accessible, or vulnerable to radiotherapy.

I ask about swimming during the treatment (and that’s the huge advantage of oral chemotherapy).

Are you swimming in swamp water? Asks Dr Sarah.

No, moorland rivers or the sea… 

She sees no reason why I can’t swim if I feel up to it, with the proviso that I must not swim alone because of the risk of fitting.

I sign the consents.

I go to have my bloods taken, and am given an appointment on Monday for a CT scan to measure me for my radiotherapy mask. This will hold my head still while the radiotherapy takes place. The treatment should start in the next three to four weeks.

DWP

Because I have a GBM4, Sarah will issue a form DS1500, which means I get full ESA including the support group rate and full PIP with mobility allowance, no questions asked. So my struggle with DWP is at an end.

As an aside, I had called them on the previous Friday because I still hadn’t got to grips with the medical and work assessment forms, and the deadline was 6 April. I had my histology, but was unsure whether I would get the DS1500. On this occasion I spoke to a lovely woman who was clearly old school, and who told me not to worry about anything, and annotated my files to ensure I’d not have any problems She checked I was in touch with Macmillan, which I am, and explained the support they can give including excellent benefits advice (in sharp contrast to the initial experience in which the advisor insisted that Macmillan ARE NOT BENEFITS TRAINED). It does highlight the culture of DWP which has changed from one of being there to help and advise, to one of being there to identify and punish scroungers.

I leave Dr Sarah, get my ticket for the bloods, and buy a cup of tea and a Bakewell tart with which to take my dex. I  walk to the table, and as I go to put the tea down, the strap of my bag slips from my shoulder and falls, so I spill half the tea over the table and my arm. Once the mess is mopped, I open the Bakewell tart. I peel off the layer of sugar icing, and find a heavy, tasteless, clag, like sawdust spilling from a corpse. I feel a bit shaky.

There’s something quite final about being officially terminally ill, to the point where even the government will admit you’re not going to recover. The Bakewell tart feels like the shape of things to come.

 

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Author: wildwomanswimming

Wild Swimmer Wild Woman Writer Hill-Walker Dog-Lover

15 thoughts on “Cheshire Cat Hunt: it’s a no brainer”

  1. Thank you for sharing your experience. None of us know what is in store for us health wise, and what our journey will be, as you have recalled from your days as a paramedic, but few would be able to convey so well, what they are going through as the process unfolds. It is a privilege to follow your blog and read your no nonsense, clearly written account of life with Hunt. I hope that you have limited side effects from your treatment and are able to get some good swims in as the weather improves, and that there will be more strawberries and cream than Bakewell tarts!

    Liked by 1 person

  2. I’m so sorry to hear this news. I’ve been following for quite some time (since someone posted on DYST about you having your op) and hoping for better news for you. I come from a neighborhood in Sandy, Utah in the United States where 22 people have been diagnosed with brain tumors. All within a 2 mile radius. I’m always so impressed with the way humans react to this sort of thing; both as the patient and as the community surrounding the patient. People are good, at their core.

    Liked by 1 person

    1. Heidi thank you for your message.
      I find it hard to reconcile all the nasty UK government and media rhetoric over scroungers with my own experience of people’s kindness. I’ve received so much, including from people I don’t know such as yourself.
      It’s about sharing human experience, and while it’s somewhat worrying sharing so much in public, the responses are deeply human, individual and personal.
      Is there any thought as to why so many brain tumours in your area? There seem to be few ideas here as to causes.

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      1. It’s been interesting to follow. Many of these people are very close friends. The first known diagnosis was a girl in my school who lived 10 years or more with her brain cancer. This was 30 years ago when the treatment options weren’t great, and looking back, I’m shocked. The second was my best friend’s mom. That’s when we started tracking this and it’s been happening regularly ever since. It seems to be picking up speed in the last few years, however.

        There are cases of leukemia, breast cancer, and colon cancer in the area as well, but astrocytomas seem to be the favored monster.

        They’ve looked into a few things such as soil (there’s a lot of granite in the ground) and water, but honestly no one has looked that deeply into it. The families are too busy with treatments or grieving to give it much energy. I wish someone would figure it out, because there won’t be stop anytime soon and all of us who grew up there just hope we’re not the next one.

        I have two very good friends battling brain cancer right now. I won’t say I know what you’re dealing with, because that would be ridiculous, but I can empathize. I’m truly sorry. It sucks. I think of you often. I know that’s odd since I don’t know you. But this all hits very close to home and it makes me sad that people have these struggles. I wish we could all live to be 85 and die in our sleep.

        I know you’re not religious, but I am so I’ll keep you in my prayers.

        Heidi

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      2. It’s a mystery then. We have granite too, with radon gas and the risks are acknowledged for certain cancers, especially thyroid; none for brain as far as I know.
        The only theory I’ve heard is mobile phone usage and similar, but over that timeframe I guess it’s unlikely.
        Thank you for prayers. I’m sending good vibes your way too.

        Like

  3. Oh Lynne I love your attitude and sharing. I’ve never followed a blog but am going to follow your own for sure. Come and have coffee and cake at Medical School John Bull – just a stones throw from Derriford – how about a day next week? Which one? We dont do bakewell tarts though in my own view even a dry one isn’t up to much.
    Andy

    Liked by 1 person

  4. Three personal experiences from when I worked in neuropathology. A lady with metastatic melanoma to the brain with a very poor prognosis and yet 3 years later she was alive and heathy. Another case was when we contacted a GP to carry out a long-term follow up study, the patient had been operated on 12 years previously and discharged with no real long-term expectations. It took a number of phone calls between hospital and GP to establish that we were talking about the same person who was still very much alive and kicking. And a friend of mine called George who had a high grade retinoblastoma with a poor prognosis, yet 6 months later he was back playing squash though to be fair not as nimble as he had been which finally meant I could beat him, I was 30, he was 60.
    Prognosis is a statistical analysis and not an individual forecast. I am reminded of the tale of a man walking along a beach on which the tide has stranded 1000s of starfish and there is a girl throwing them back in the sea. ‘There are too many’ the man says, ‘you cannot make a difference’. The girl picks up a starfish and throws it back in the sea ‘I made a difference for that one’ she says. In the same way you are an individual starfish and it is not cast in stone that what happens to the others will happen to you.

    Liked by 1 person

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