I am writing this page in summer 2016. [with updates at the end to the current date – still doing fine] Eighteen months have passed since my diagnosis. Treatment is over and I feel amazing. I am going to try to be serious for once and describe how the process works and what you can expect if you or someone you know is going to have to go through something similar.
First of all, the experience may vary from person to person and surgeon to surgeon, so don’t shoot me down if you don’t exactly follow this path. Symptoms and extent of surgery will vary depending on size and location of the tumour. Dose and type of chemo will also vary a bit depending on response. But I hope knowing ‘how it was for me’ will satisfy a curiosity at the very least, and may alleviate anxiety in some who are going through this, or have loved ones going through it. The treatments I describe is the ‘standard’, no fancy trials, no add on benefits, just bog standard high grade GBM treatment. Read on! It’s not as dreadful as you might imagine! If you’d rather not know the details, skip it all and just know this: It was not painful AT ALL and I would definitely do it all again if needs be.
pre op assessment –
quite a laugh: I blogged about this here
Remarkably easy. (For me, not the surgeon.)
The aim of surgery is to remove as much tumour as possible. In my case, because the tumour was in my speech area, I underwent ‘awake surgery’ so that I could talk during the operation. This is unnecessary in less critical areas of the brain, so you may not be offered this option. I was given the choice and it seemed to me that the benefits out weighed the problems. Being awake, the surgeon could make sure he didn’t damage my speech any further.
Despite being awake, I experienced no pain at all. I think they gave me a paracetamol when I got back to the ward ‘just in case’ but it was honestly not painful at any stage. Because I was awake, I had no anaesthetic to ‘wear off’ so I was clear minded and alert throughout and could converse normally (garrulously) when I got back to the ward where my relatives and friends were waiting.
Preparation for surgery involved having some intravenous and arterial lines put into my arms, for the anaesthetist to monitor my blood pressures, oxygen levels and so forth. Likewise, ECG leads were attached to monitor my heart rates. I was then turned onto my side on a special pressure-mattress to make it comfy because I was going to have to lie still in this position for 5 hours.
Next stage was to fit a frame to my head that was going to hold my head stock still for those five hours. Under local anaesthetic the surgeon screwed it to my skull. Again, apart from the local going in, this was painless. Once the frame was attached to my head and it was screwed down to the table I was unable to move even a millimeter from the neck up. At this point, the head end of the operating table was removed so my head was held only by the frame, in mid air. Some of you may be wincing by now but I assure you, it was completely painless, I felt comfortable, as if I was snuggled in a comfy bed, totally supported and relaxed. The operating table, which had been moved to the anaesthetic room for these procedures was extremely comfortable and supplied with pressure reliving mattress and blankets.
I was then moved into the operating theatre proper (the preliminary prep had all been in the anaesthetic room.) Those who are being put to sleep for their operations will never see the operating room (or any of the prep I have just described, you will be ‘put under’ in the anaesthetic room on an ordinary trolley). The theatre is bigger and contains a load of equipment. There are also loads more staff. The surgeon and the anaesthetist are supported by a large team of nurses and technicians, some of whom are ‘scrubbed-up’ (in sterile gowns and gloves). These scrub nurses, doctors and technicians will be the only ones allowed to handle the sterile equipment, and the operation site. Then there is a second team who are clean but not sterile. These will be the people who run for equipment, manage the non-sterile areas (including the anaesthetic procedures) and remove specimens and used instruments etc. There is a strict demarcation between sterile and non sterile. Once the surgeon and other scrub nurses are gowned and gloved there will be no touching anything non sterile, including their own bodies. Yes, if they get an itch (anywhere) someone who is not sterile has to scratch it!
In the operating room, there were interesting screens displaying computer-graphics of my brain and also a CCT screen displaying the operation site so that everyone in the room can see what the surgeon is doing inside my brain. I would love to have seen that but unfortunately I was not considered sterile enough and once the operation site was prepared I was screened off. In the end all I could see were hazy scenes through a polyethylene tent over my head, in which I lay with a nice young junior doctor. Actually, I should rephrase that – he was sitting on a stool inside my tent holding a laptop, on which a series of pictures were displayed. My job was to name the objects as the surgeon operated. The tumour was in the ‘speech area’ of my brain, (close to the area that connects motor and sensory signals from my hands, feet and face). As the surgeon operated he used little electronic probes to test the brain cells in the area. If they did something, like make me call a camel a piano, or on one occasion aiming a right hook at the doctor holding the laptop, he knew to back off and leave those particular cells alone! (You never know when a right hook may come in handy). And, again, incase you are wondering, I cannot feel the surgeon probing and prodding and even slicing at my brain. You see the brain has no sensation of pain. It’s logical if you think about it, why would you need sensation inside your skull Even the sawing of my skull was painless, once the skin and superficial layers were anesthetised, although the noise of the saw was a bit disconcerting as Nigel removed a teapot lid sized piece of skull in a jiffy. (unlike me when I make tea, Nigel seemed to have no trouble remembering where he had left the lid when the came to put it back on.)
Also surprisingly trouble-free, in my case at any rate.
Once my surgery was over, I underwent 6 weeks of daily radiotherapy during which time I took oral chemotherapy (Temozolamide or ‘TMZ’). When the radiotherapy was complete, I was cranked up to a higher dose of TMZ, which I took for seven days out of every 28 (ie monthly) for another 6-8 months.
Prior to this sage I went for a mask fitting. This blog describes the fitting of the mask that is the device the have to deploy to keep you still in the radiotherapy machine. (They focus the beam on the site of the tumour and a ‘collar’ around it to zap any stray cells that the surgeon may have missed and it is important that they hit the same spot every time). The mask is made in a fitting in which you have a warm mesh mould applied to your face. It moulds to your features and hardens as it cools. This phase is quite relaxing, a bit like having a facial.
Dont worry about this!
The actual radiotherapy sessions are not quite as relaxing as the mask session. You are screwed to the couch under your rigid mask. I found the best thing to do was to just relax and think nice thoughts for the 15 minutes it took for the big machine to rotate around my head in precisely calculated arcs. You hear clicking and whirring but feel nothing. Actually, at one point in the rotation there was sometimes a slight sense of flashing light, which I think occurred as my occipital cortex (sight area) was zapped. It was very fleeting and hard to define. I suspect odd sensations like this might occur depending on the site being irradiated. Some people reported being tired or woozy afterwards but I had no such symptoms. I don’t know it this was particular to my area of treatments or due to the diet and supplements, who can say, but I am pretty convinced that my ‘additional measures’ were vital to getting through this phase and also helped with the chemo that accompanied it. When you are done with the radiotherapy sessions they let you keep the mask! (see here: Halloween costume?)
In the case of brain tumour, this is usually administered orally. It is nowhere near as nasty or intrusive as many of the intravenous types. You take it five days out of the week as with the radio. So you get the weekend off. It’s just a few small tablets every morning, worked out exactly according to your weight and height. You have to take a strong anti-emetic (anti sickness) tablet half an hour before, to stop you throwing it right up again, which is frowned upon. This may because they are expensive tablets, but may also be because they are highly toxic. There are all sorts of scary instructions in the box about not breaking open the capsules and wearing rubber gloves should you spill any contents! It didn’t make comfortable reading and I reckoned that once down the hatch it should probably not make a re-entry the way it went in. My stomach is made of stronger stuff than my tonsils.
So, I made the routine as pleasurable as possible. Yes you can! Set an alarm for about an hour before you need to get up. Take the anti-emetic with a drink of water. Go make a cup of tea, and return to bed to relax with tea and a book. Take the chemo tabs in bed after about half an hour. Finish your tea, and if desired, the chapter of your book. Run a bath and have a nice soak before getting up to make breakfast.
At first I took the anti-emetic in the dose prescribed. But as I experienced no nausea at all – and the combination causes horrible constipation – I gradually cut it down to the smallest dose I could get away with. In my case it was very little (a quarter of a tiny 8 mg tablet). I did try without altogether but felt a bit queasy by early after afternoon, so I went back to my 1/4 tab. On this, despite the daily ‘zappings,’ which are said to make you tired and woozy, I went through with almost no symptoms. I may have been a little more weary than normal but it really didn’t stop me doing everything I normally would, in fact more! I think going over and above the norm most of the time actually helped. As we were driving to ‘the big city’ every day – this took about an hour each way – we resolved to make the best of it by incorporating something nice on the way. Shopping, meals out, tea shops, garden centres, visiting friends, seeing the sights. It helped that we were driving in a lovely area of the country (Oxfordshire) but the principle could work anywhere with a bit of imagination. Doing this meant we arrived home tired but happy that we had such a great day. How much better is that than just plain tired.
In all aspects of the cancer journey, I belive that squeezing every drop of joy out of every situation is vital and acts as a healing balm. People often advise you to rest or take it easy and to not overdo it. Whilst that’s nice from time to time and a bit of pampering is beneficial, I think taken to extremes it is one of the things that can lead to self-pity, boredom, lowered expectations and rumination on possible negative outcomes. Of course, if you are truly ill, very symptomatic or incapacitated you may need a rest, a day in bed or some peace and quite. If you aren’t hungry, don’t go for a slap up meal. BUT even when you are run down, a bit queasy or woozy I recommend you still DO something. You don’t have to climb a hill to get to the top. You can drive up. You don’t have to go to the cinema and consume a hot dog and fries, you can rent a ‘Bridget Jones’ video and share a duvet and a cup of green-tea with someone who has the same tastes. Having a close friend, spouse or family member who can do and organise all this for you will help. To collapse into bed exhausted with a few hours (even moments) of happy memories from the day is marvellous.
Once the initial six-week onslaught is over, things settle down a bit. It’s a matter of getting into a routine. One week out of four you will be on a higher dose of chemo. They up the dose a month after radiotherapy is over, and then double it on month two, if you are tolerating it. Of course with my boosted constitution it was no problem and I still managed to keep the ant-emetic to a about 1/3 – 1/2 tablet. (It’s not very precise because they are tiny tablets in the first place so breaking them is tricky. You can get lower dose tabs but I didn’t want to mention it to my oncologist because she had ticked me off for even suggesting I could cut down! I am afraid I am a bit disobedient like that, and you may not wish to be, just make sure you have some laxative handy!) The week before your chemo week you get a blood test and then go to the clinic to be quizzed on any problems with side effects. If you have a problem I guess they adjust the dose but in my case all was well throughout.
I am convinced that my active stance in terms of diet, supplements and my attitude of hope and expectation helped me get through all these treatments. These are described in various pages of this blog… they are not complex, anyone can do them.
proof of the pudding!
The scan protocol is: pre op, immediately post op, six months post radio and thereafter every 3 months.
The reason for not scanning for six months following radiotherapy is that the radio fogs up the results – it can look as if there is recurrence when there is none. Best not look! After that they get more interested in you and every three months you trot along for the scan, again enhanced with and injection or gadolinium (which is taken up by any residual tumour cells.)
Scans are naturally big mile stones. If something shows up, you may have to have more surgery or different chemo. I have described scanxiety here in my blog. It’s somewhat inevitable, like waiting for exam results. No matter how confident you feel, you are going to have last-minute butterflies about the results. The scan itself becomes a bit routine. You are by now used to sticking you head in that thing that looks like a front loading washing machine. I nearly fall asleep in there despite the cacophony of banging and clanking. You have to have two scans each time, the first without and second with contrast medium injected (gadolinium). But that, too, is painless. The first scan that you underwent, before your diagnosis, would have been by far the worst. Not only because you are anxious but because you are not prepared for the noise! But once you accept that, yes, it is supposed to sound like that – the machine hasn’t got a loose cog inside that is causing it to fall apart around your ears – it’s no worse than having workmen knocking down your kitchen wall while you are trying to meditate.
Here are my scan dates.
- Initial diagnostic scans show the cancer and extent of it. (Feb 2015 and March 2015)
- Pre and post-op scan in hospital to make sure things look OK before and after surgery and provide a baseline.(March 17th 2015)
- Six month scan (19th Sept 2015). This is around the end of treatment. There is no point in looking before this because the brain looks a mess. Need to let it settle down before you can see if anything has re-grown or anything looks dodgy. Even at this point it can look a bit ‘murky’ because of all the messing around and radiotherapy. If it’s not clear at this point they don’t panic, just wait a bit longer and repeat the scan. In my case all looked clear. If it looks good, it’s time to cease the intermittent chemo and see how you go.
- Three monthly scans thereafter: – 4th Jan 2016 (clear). – 24th april 2016 (clear). – 17th July 2016 (clear)
- at 18 months from diagnosis, I was ‘promoted’ to 4 monthly scans and that’s where I am as I type.
So, it’s all over. I am a Bob-free zone. I continue to have a healthy diet, take supplements, take plenty of exercise, treasure my family and friends, relish the blessings that fall on me every day, love life and, most of all, believe in the amazing power of the body and brain to heal itself… given the chance.
I give thanks daily to God for giving me that chance and for showing me the way.
November 12th scan clear.
But I am having some effects from the radiotherapy (short term memory loss and general brain ‘fog’). I begin Hyperbaric Oxygen therapy with good effect. For information about this, click on the link in red above.
March 24th 2017 scan clear.
August 12th 2017 pre-scan thoughts
Now over two and a half years since diagnosis, on my 11th scan, and I am fit and well. If you want to know how it feels to get this far read my blog post describing the scanxiety every cancer sufferer experiences while awaiting results of scans (or other markers of disease). No matter how well you feel, no matter what progress you have made, no matter how many previously good reports you have under your belt, no matter how positive you are, no matter how much faith and hope you have – scanxiety will still haunt you. Best way to manage it: write a slightly grumpy blog* then leave those thoughts behind and enjoy yourself. (Or pay to go privately or to some more efficient health service, when you probably won’t have to wait a couple of weeks or more between scan and result.)
*if you don’t blog – write them in a diary/journal/back of an envelope or, better still, aim them at a friend who is very good at saying ‘Oh, I know, I agree, that’s a pain, how annoying, that’s sh***y, and then taking you out for crazy shopping/eating/dancing/singing/laughter.
Scan result 23rd August 2017……CLEAR AGAIN!
Well what did you expect?!