Brain Tumour Roller Coaster

Open letter to all affected by a diagnosis of an inoperable brain tumour but was written with a particular couple in mind after a request. It is imperative knowing that someone else is on that path

Hi – you will need tissues to read this. Heart and Soul stuff.

I was sad to hear of your friend’s diagnosis of a brain tumour that cannot be removed but may be arrested for a while with chemo and radiotherapy.

Such a diagnosis immediately invokes a complete change in perception of length of life is a tremendous shock to the person who has the tumour and also their nearest and dearest.

I know you phoned me because you and I had talked through my experience only the day before, and it seemed odd, serendipity or just meant to be that you knew I had very close day to day knowledge of managing, championing and loving my husband through all of that over months.

As promised, I’m writing a few practical things down for your friend’s wife that she can share with whomsoever she feels appropriate.

It is a roller coaster. From the symptoms that looked like so many other things that happen in mid-life, forgetfulness, tiredness, stumbling, a tremor, stress, not quite keeping up, through to the diagnosis is a different path for everyone.

My husband was misdiagnosed for 12 months and migraine medication was prescribed for 18 months longer than it should have been without the doctor calling him in for a check. That’s by the by, and doctors find it very hard to identify brain anomalies.

If, as I suspect, your friend has a glioma, glioblastoma, astrocytoma, then it’s inoperable because of its form. It also depends what stage of development it’s at. if WHO grade IV then it’s fully developed to do irreparable harm to his brain. In fact it has already made irreversible changes in how the neurons scoot about with the messages to and fro To control other parts of the body. It may well already have changed behaviour. It is made of brain (glia) cells and will not appear elsewhere in the body. It’s a remarkable thing. It basically looks like a well worn and very torn net curtain leafed into the brain in 3D. It is too pervasive for radiotherapy to zap more than the largest and thickest portion so it cannot be got rid of.

Being faced with your own death is an exacting time. It is also for a wife or husband and the whole family for all plans change immediately. Nothing that was a given remains and life becomes one of dealing with the day to day.

My story is a reactive and proactive story because this happened to my husband. These then are my observations, and I’m writing them with a tear in my eye simply to try and help someone else have something to anchor what they need to do onto a proven record and experience. He was only 51 and he died the day before his birthday. A very tidy man. If he were alive now he would be 55. He was the youngest of 4 children and his mother was still alive when he died. She was 93 and died 2 months after him. I nursed her too. The family think a broken heart was contributory.

His spine collapsed into dust because of the dexamethasone steroids and klexane blood thinners which reduce swelling and thin blood but destroy bone. The Physio came and said his spine was totally unstable. I texted the oncologist. He said it was urgent to admit him and he was rushed into hospital. the oncologist asked that I go too and sleep in the room with him. I had to pack for both of us in two small bags and organise his brother to come and look after their mother. Half an hour later the ambulance came to pick us up and took us to London. We did not return home for 9 months.

I spent 9 months sleeping on the floor of London hospitals on a mattress because I was the only person who understood what he wanted and needed. That’s a 24/7 vigil. During this time I was trained on all the meds, injections, personal care, standing hoists, feeding, aspirational pneumonia, reading bloods, looking for DVTs and more.

He became very teary when watching movies when he had never done that before. His inability to construct conversation had been a problem for 6 months but meant that he would begin to explain and then ask me to carry on. I always said I would but at the end I asked him if I had said it correctly and he would confirm.

There are Things To Do

The priority is to make decisions about having or not having a variety of treatments.

The outcome will likely be the same either way – earlier death than you had thought.

The options are to have no treatment by chemo and radiotherapy or to have it.

Every decision needs to be thought through in the light of the fact that it cannot change the outcome. It is not a matter of being brave, having faith or being the person who will beat the system. Faith helps those who have it. Positive thinking helps people who are that way too. It is a mortal blow and subjecting your last months or year to a chemo and radiotherapy is no picnic.

In essence, if you say you will not have the treatment you will be able to be at home, as unmedicalised as possible, barring pain control and maybe anti sickness medication. You will be tired and may have some symptoms but be able to go to the seaside, go to favourite places with favourite people, laugh and be at home, with only the occasional trip to the doctor until the tumour takes over more and you stay in bed longer, sleep longer until one day you do not wake.

If you opt for the treatment, as My husband did, you will take the chemo at home in capsule form or go to a treatment centre for it over 4 to six weeks daily. Tiredness is so bad that you cannot stand up even to put a key in a lock or use a door handle. Radiotherapy is given in ~20 treatments daily over 4 weeks each taking around 5 minutes of your time. A metallic taste occurs in the mouth, likened to aluminium, I’m told.

Practical Things

Get your affairs in order.

If you have sole bank accounts make them joint because it reduces the stress and delay in any transfer.

Make sure you have an up to date Will.

Get a Power of Attorney sorted. See a good helpful solicitor who is used to dealing with the elderly, Wills and Powers of Attorney. You can get an immediate one, which you can then invoke when it is necessary, but also get one registered as that is verified by the state.

Look at all insurances, both with a company and your own and see if you have a critical illness clause or cover for that needs applying for asap. It can take 4 months to come through because of action against potential fraudulent claims.

Once you have this diagnosis the bank should be notified as should the medics. Put it in writing and ask for a reply. They cannot deny receipt then.

You can ask your oncologist to get a fast track form for the appropriate state-funded allowance. For this diagnosis, you will not be subject to the delay that occurs without this life shortening situation. Get the form and get the oncologist to sign it, photocopy it before you take it to the GP surgery. Then get photos done for a Disabled Badge will also be available to you. You will need it. Get everything you can.

Contact McMillan on their Freephone number. They will listen, send booklets, and know their way around the system.

As a spouse you will feel you are leading a double life. You’ll do everything you can and anticipate what you can too but you also have to think about what will happen when you are alone. It is awful. It is very difficult because you feel you are also betraying your husband.

The behaviour of friends and family will polarise. Some will be absolutely brilliant and some will shock with their callousness, lack of care and concern. You really won’t know who until it happens. For me, the relatives ran to the four corners of the world and to me, were actually the most upsetting part of it all because there appears to be no understanding that you need respite and time too. So I didn’t get any except for the odd coffee or lunch with friends. It was relentless and 24/7 from diagnosis to death.

But it’s part of life and that’s how it should be viewed. A whole life is a whole life whether it’s two days or 80 years. That’s life and in the midst of life is death and it’s actually all rather beautiful in the way that it describes a circle.

John Galsworthy had it right in the Modern Comedy, when he said,’ Uncle Timothy got so young he had to die,’ So it is. My husband needed to go. The incremental achievements we celebrate in children as they grow had all escaped him and he could do nothing for himself except smile and blow kisses. A sad but beautiful end to a very happy relationship. I was honoured to have been chosen to be with him. I was lucky. We had a very happy, funny, live and let live relationship with respect and kindness in spades.

Don’t weep over it except to say, How lovely!

What you do need to do is be your husband or wife’s champion. It’s an absolute daily assault course of medical changes, challenges and focus on what’s best for your husband.

Ask questions of doctors for they make decisions on assumptions which may not be those you or your husband would choose. It is a solitary role and relentless. You will need to get some respite by getting out every day for up to an hour and getting help in the house.

Laundry will increase, elderly patient care will arrive unannounced like a supernova, food tastes will change and the ability to swallow become more difficult.

It is a decreasing spiral of competence. Some people become more exaggeratedly evangelical, some more difficult and truculent, some totally different people. You just will not know.

There are other things too which can be said. For instance: dex, as dexamethasone is called to the cognoscenti, makes the patient hungry. They will eat more and want more. They will also get puffy cheeks and thickness round and under the chin and what I called a ‘blancmange belly’ and increase in girth. Clothes won’t fit. Ordinary shirts and trousers become a burden too so long sleeved polo shirts become the top of choice rather than a normal shirt; pull on track suit bottoms become the trouser of choice rather than moleskins, jeans or chinos. Fingers fumble making buttons and zips a source of frustration and handicap to keeping a vestige of independence.

Shaving, teeth cleaning, nails and personal care: within 6 weeks of diagnosis I was helping with that whole routine. Teeth – he tried. Toothpaste tubes were impossible to open or close. Applying paste to the brush was a feast or famine affair. Toothpaste was sprayed about as soon as the electric toothbrush was turned on, and totally lost before it was put in the mouth. Shaving – I mastered a wet shave with him solemnly scrutinising the result as we progressed and moving his nose so as not to miss bits on the upper lip and cheek. Eyebrows and ears too. Nothing remains private although you have to focus on the person rather than the sadness you feel at the decline and that you are needed to do these daily things for them.

It is a time of daily flexibility and incremental change.

When we came home we had some lovely things happen but we were never alone in the house from before he was hospitalised until he died. He was a gentle giant of a man. Superbly intelligent, funny, gentle and he let me be me and I let him be him. As well as being lovers and latterly married we regarded each other as a friend for life. I thought it would be for my life but it was for his. His mother adored me and I nursed her too. She always said she loved the way we made each other laugh. A lovely woman.

I’m very willing to help, to talk, to answer questions. Anything to make it all easier, for people will come and see your husband but some will forget you.

Pandora Thompson. December 2015

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