Guestblog: Brain tumour diary: Love me, love my tumour.
This is the latest in a series of posts about how business woman Morag Gaherty is dealing with her brain tumour.
So, last Friday, I went to Maidstone hospital, to meet my new oncologist, Dr Sadler (a woman). King’s College Hospital 
have signed me off and referred me to my local hospital for ongoing treatment, which is a relief.
Especially as I’ve just discovered that my radiotherapy treatment, to mop up the remaining tumour around the blood vessels will consist of not one or two sessions, but 30, daily for six weeks (time off at weekends for good behaviour, though!). Thirty sessions! Thank goodness I’m not trekking off to London every day for that, especially as each session will last no more than half an hour.
In addition, I’ve learned that I am not allowed to drive for not one year but two! Apparently, I am covered by two sets of regulations, those covering epilepsy risks and those covering brain tumours. It is the latter which demands a two year ban, but in addition I must not have a seizure any time in the second year, or the whole thing starts again from scratch. How very frustrating, but I suppose we’ll just have to learn to adapt.
Definitely time to sell the Mazda Bongo now. Anyone looking to buy one, by any chance? Just thought I’d ask, on the offchance. Terrible mpg, I’m afraid, but a lovely easy automatic 4×4 drive (which is why the mpg is so poor).
Everyone seems to be very surprised by how well I am in general. I’ve even had visitors turn up and insist that I’m supposed to be ill. The fact that I don’t feel ill doesn’t seem to be the right response. Personally, not feeling under the weather is infinitely preferable to the alternative, as far as I’m concerned.
The prognosis is difficult to assess. None of the specialists I have spoken to has wanted to even go there. Dr Sadler stressed two things to consider: firstly, everyone responds very differently, which might well affect the outcome; and secondly, some people get a bit superstitious if a “deadline” is suggested, and 6 months before they hit it, they almost give themselves permission to die. On both those counts, I think I have a strong case, based on the kind of person I am. 
She did also make it clear that the aim of this treatment is to control it rather than to remove it. Love me, love my tumour.
Today (Monday), I went to Maidstone Oncology Dept to have three things done: a plastic mesh mask for my face to hold my head still during the treatments, so they can line up the beams accurately. While I was also there, I had another CT scan done (after they took a sort of police-style mugshot of me next to my name and hospital number on a big board!).
Finally, I had another blood test – I have had two so far, and they show increasingly poor iron levels, with the second one well below acceptable minimum. Dr Sadler wants to make sure my iron levels are not still going down – if they are, I shall need a blood transfusion before my radiotherapy starts.
The course of radiotherapy starts on Monday 27 September and continues for six weeks until November. This is lucky, as it means the boys will be away for almost the whole of that time at school, so I won’t need to worry about fitting in to their timetable.
Dr Sadler discussed with me the possible side effects. The main two during the treatment were tiredness and hair loss. As I explained to her, I’ll just get my head down for a sleep whenever I need to, as I am a great believer in the restorative powers of the land of nod.
As for hair loss, at her suggestion, I had all my hair cut to a number 2 this weekend, so the mask will fit more snugly. Luckily, I have a head which seems to suit this style, though of course all my friends on Facebook are suggesting I buy some pink Doc Martens and a pair of dungarees, so I can pass myself off as a lesbian!
I did complain to Bob that this hairstyle made me look fat – he slyly grinned and suggested it was not so much the hairstyle as the fact that I AM fat which makes me look fat! That boy is going to die very soon, if he doesn’t watch it!
Anyway, it’s now just a case of waiting to hear about the blood test results. There is so much waiting around in this game, which is really tedious!
Morag
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16 Responses to Guestblog: Brain tumour diary: Love me, love my tumour.
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I did wonder if you’d feel a fellowship in all your friends also shaving their heads; thankfully I quickly envisaged your retort at such a suggestion before I committed it to a Facebook update!
Giving blood may be a more practical action though – it’s certainly about time I donated again.
Thank you for the latest, Morag – keep at it
Haha, Babs! You know exactly how I’d react if anyone suggested shaving their head for solidarity reasons!
I agree entirely, that encouraging people to give blood is a far more practical support. As well as signing up for the National Organ Register, if you haven’t already done so (and there is no lower age limit, so kids can be signed up as well, like mine are).
I did wonder if you’d feel a fellowship in all your friends also shaving their heads; thankfully I quickly envisaged your retort at such a suggestion before I committed it to a Facebook update!
Giving blood may be a more practical action though – it’s certainly about time I donated again.
Thank you for the latest, Morag – keep at it
Sounds like a good excuse to eat lots of steak dinners (probaly more appealing than liver)…
On a serious note, it sounds as though you have the tumour for life, they will just keep it under control rather than get rid of it. Living with cancer as opposed to a cure, which will presumably mean on-going treatment of some sort beyond the radiotherapy?
Actually, Maggie, I LOVE liver, much more than steak, so I’m looking forward to being able to indulge my culinary passion.
Yes, I think I do get to keep my tumour long term, albeit in neutered state, if I’ve understood correctly. I will have to have periodic MRI checkups, to make sure it does not burst into life once more. If it does, the next treatment is chemo. Apparently you can’t try radiotherapy a second time, after the initial course is finished.
So it’s 6 weeks in the “tanning booth!” Glad you’re feeling well and thanks for keeping us up to date. xx
Twitter: SuzeStMWrites
As part of your own cancer journey, have you done radiotherapy, Suze, or just chemo? I’d be interested in any tips or information you may have to share.
I haven’t had radiotherapy so far, although I know many people who have. You might find the following two links helpful:
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Brain/Treatingbraintumours/Radiotherapy.aspx
http://www.cancerhelp.org.uk/type/brain-tumour/brain-tumour-organisations
There’s probably a brain tumour support group in your area – have a Google and see what comes up. These groups are usually very social and sociable, and speaking from experience it really does help to chat through issues with people who know personally what you’re talking about.
If I think or hear of any other useful resources I’ll pass them on.
Sz xx
Twitter: SuzeStMWrites
I haven’t had radiotherapy so far, although I know many people who have. You might find the following two links helpful:
http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Brain/Treatingbraintumours/Radiotherapy.aspx
http://www.cancerhelp.org.uk/type/brain-tumour/brain-tumour-organisations
There’s probably a brain tumour support group in your area – have a Google and see what comes up. These groups are usually very social and sociable, and speaking from experience it really does help to chat through issues with people who know personally what you’re talking about.
If I think or hear of any other useful resources I’ll pass them on.
Sz xx
Twitter: SuzeStMWrites
No self respecting lesbian would wear PINK Doc Martens;)
Hoping you stay feeling well:)
I could pretend to be one of those Lipstick Lesbians I’ve read about, Elaine
Enjoy your liver and onions Morag, it will do you the world of good.
@Babs, yes giving blood is a practical action it’s about time we gave some too.
I had it for lunch today, and it was truly delish
Hi Maggie
Glad to hear you’re feeling relatively good.
Is Guinness on the menu for an input of iron or is all alcohol automatically off limits for now?
Twitter: comfort_selling
According to the medication I have to take, I’m supposed to be avoiding alcohol, although the stated reason is that the medication simply exacerbates the effects of the alcohol. So I’m working on the assumption that if I have my occasional glass of wine, it will just feel like I’ve had two.
The other thing which is a real iron-booster is another favourite of mine: black pudding. Yummy! So now my breakfast is bacon, egg and black pudding, of which I now keep frozen portions.