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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