A post by Jane
Am watching this programme about orcas.
Am doing ok at the moment. Not so for Paul Slootweg who came off his bike this morning.
Marieke has to go to the dentist tomorrow… Ouch. Wuss.
Brain is feeling ok at the moment. mri next week so wish me luck.
A post by JD
I’ve officially done with radiation. For now anyway. It’s nice to be at home and looking forward to doing weight loss activities like going to the gym and going for a walk to the shops to buy stuff that I don’t need. I need to cut my hair tonight as well which will be a lot of fun – with my cheap and nasty petrol station clippers – and leave all of the bits everywhere. Ugh. Never mind. That’s what vacuums are there for I suppose! More weight loss. Hope everyone is doing well with their various treatments/waitings. JD
A post by JD
Hi all, Had all of my hair shaved off at the weekend and I’m still getting used to it. It’s quite cold up top so I’m wearing a nice new hat bought for me by my darling dearest. My hair is quite wispy where the beams go in, which is not unexpected I suppose. I just hope that it grows back nicely like it was before without going curly or turning any odd colour. No white woman’s afro for me thank you very much. Although scaring little kiddies into thinking i’m Side Show Bob would be a giggle. It won’t be the end of the world if it doesn’t grow back. I will just have to invest in some proper hair clippers to keep it all neat and tidy and not rely on the cheap and nasty ones that we got from the petrol station. We’re not at that point yet but can anyone recommend any? Whilst (while? – grammar experts please help me out) I’m here I am going to have my 2 cents worth on Jade Goody. Why on earth does everyone prefix what they say about her with ‘I know she’s not the sharpest knife in the drawer’ or something similar? It’s just so rude! She’s doing her best with a truly horrible disease and I do not begrudge her a single penny of the money she’s making for her children. Joint pain is back in the knees and at the worst time – when the parents-in-law are visiting from the Netherlands. Drugs are working well as well as a hot water bottle. Anyhoo…must go and do some ironing otherwise we’ll be going around crinkle-cut, which will be unacceptable to Dutchcloggie. I couldn’t care less but who am I? JD
A post by JD
Just to let you know that the joint pain has gone. In the end I only had two sleepless nights with the painful knees and hips. I don’t know what caused it other than ‘steroids’ but I’ve had my medication fiddled with and I’m feeling much better. Much less tired and much less bloated (although there are only two pairs of trousers that I can currently fit into – hurrah for elasticated waistbands!) So maybe I am still quite bloated and not realising it. Never mind. I’m sure that it will all disappear eventually. I do feel a little thinner since reducing my steroids. The good thing is that I’m not feeling as tired as I did last week. I’m sure that has something to do with the medication also. I haven’t been having any of the mini-seizures which may have something to do with the medication adjustments also. Who can say? It’s all a big mystery.
Anyhoo…the hair continues to fall out and the scalp is still hurting but I am at a friend’s house and I can’t start letting my hair fall out all over her nicely vacuumed carpet. I will put my nice new hat on instead. DutchCloggie hasn’t stolen it yet, which is nice. She isn’t a hat person (or particularly into wearing stripes).
I had a review yesterday and the nurse said that I was doing really well. If you are about to start radiotherapy I can thoroughly recommend going to the gym and getting fitter because it will help with the tiredness. I have found that I am able to maintain my usual schedule to a greater extent i.e. go for longer walks without being totally wiped out afterwards. But it’s always nice to have a little nap when I get home. When isn’t it nice to have a nap though?
I will leave you with a quite amusing story/picture (or at least I thought it was – no flaming for my poor sense of humour please – no injuries): Lorry found hanging out of ferry
A post by JD
I take a wide variety of medications but over the past two days I have had the worst joint pain in my knees when I wake up. Not so bad that I can’t walk but bad enough that it keeps me awake. Anyone else have this or know what could be causing it? JD x
A post by JD
As the title says I started to lose my hair yesterday. My scalp had been hurting for a few days and I ran my hands through my hair and a little clump came out. Well… If a little clump comes out then there’s obviously more to come so I had a lovely half an hour pulling hair out of my head. What can I say apart from the fact that it had that bubble wrap addictive quality. So now I have a little bald (thinning to be more precise) patch. Nothing falling out tonight so I guess i’ll just have to watch TV. Boring! I suppose I will lose a lot more of my 100,000 – 150,000 hairs but at the moment i’m not too stressed about it. If I end up with a whispy Homer Simpson style then it will be a different matter and I will have to take action. The nurse started to talk about wigs with me today but I don’t think it’s reached that stage yet. I don’t think that I even want a wig or even need one. I’m going to move forward with a nice hat and/or a scarf thing depending on the patchiness of the hair loss. As i’m saying a lot these days: We’ll see… JD x
A post by JD
Hi all, Woke up this morning with the worst headache that i’ve had on radiotherapy (thus far). Not completely debilitating but still painful enough to have a day in the PJs watching ‘How clean is your house?’ And do I feel smug that my house is cleaner than some of these people? I sure do. I confess to being a bit of a hoarder but not to the level of these mingers. Lordy! How can these people live with all the cat hair and dead (and living) insects? Ikky! I suppose that we all have little visitors in our houses that we don’t know about. But not the wee encrusted around the loo that hasn’t been cleaned since the person has moved in – about ten years. Smelly boys. Double ikky. Shudders. JD
A post by JD
I woke up this morning with a nasty headache and haven’t been able to do what I wanted to do. Needless to say this has made me miserable and has made me eat more food. Bad JD – no biscuit! Or rather, no more biscuits…We don’t buy biscuits or chocolates anymore as i’ll just scoff them as I have no willpower. I have put on (what I feel) is a vast amount of weight but the nurse said to me yesterday that it will fall off as I cut down on the steroids. I have permission to do this now and increase the anti-epeleptic drugs to stop the weird left hand side mini-seizures I seem to be suffering from when I stand up. Very odd. Still have the headache but I think that a paracetamol or two and a cup of tea might help the issue. Speak later.
A post by JD
Radiotherapy has been progressing nicely. I had Friday off as the machine was broken (eeek) so I will have another appointment at the end of the six weeks. No side effects yet apart from a headache (which if I have to be honest isn’t that bad at the moment). No hair loss yet but apparently that starts after the second week so we’ll see…
The fainting is continuing but I have an appointment to see the nurse specialist about it. I have had head-rush experiences when I stand up with shaking down my left hand side. When I have the shaking I can’t grip and will drop whatever i’m holding in my left hand. The nurse suggested it might be something to do with the steroids (everything has something to do with steroids it seems) and maybe my levels can be reviewed as I feel that I’m taking rather a lot. Again, we’ll see…
I am also in the process of sending my driving licence back to the DVLA. With all the fainting and lack of grip I don’t think it is a good idea to be charging up and down the motorway in my condition – and neither do the doctor and nurse. Dutchcloggie has an arrangement with work so that she can take me to treatment and back, which is very nice indeed. Anyone else have experience with the DVLA?
A post by JD
Off to the next radiotherapy treatment shortly. I’ve had a productive morning putting all of my appointments into the computer and letting my fingers go cold. It’s somewhere between 0 and -6 today apparently. Cracking. Dutchcloggie bought me a nice blanket for Christmas (with sleeves – image search for ‘Slanket’ if you’re interested) but I haven’t managed to take it out of its bag this morning. I don’t know why I’m bitching about being cold when I have a vest, shirt, jumper AND available blanket and heating. COME ON JD – SORT IT OUT!!!!!
There’s only 30 radiotherapy sessions and 3 review sessions so it’s not all that bad. I woke up with a headache this morning but I’m not sure how much of that was my brain assuming that because I had been zapped yesterday that I should have a headache today. Silly brain. Maybe it is a caffeine deficiency? Coffee time!!!
Has anyone else cut out coffee and tea whilst taking steroids? I thought about it but swiftly dismissed the idea as I enjoy my coffee too much. Anyone have any thoughts?
A post by JD
Just had my first radiation treatment today. It took a while to check everything but in the end it was quick and painless. It will be quicker tomorrow. Odd having the nurses say “see you tomorrow” and I was like “oh yeah great” because I forgot it was the beginning of a six week slog. They’re lovely people but I don’t like being there.
There are limitations to what I can and can’t do which irritates me no end. I have had a few mini-seizure things due to the steroids which means no driving. I should surrender my driving licence but I really don’t want to because getting it back from the DVLA will be a nightmare. I do need a lift to hospital every day but I do go to the gym on my own a lot so being on my own on public transport isn’t really the issue. If I fall over or have a seizure on my way to be zapped I may get taken to hospital (the wrong hospital) and miss my appointment which would be BAD. My house is opposite a hospital which is not the right one. Don’t ask me why I can’t be treated 100m from my front door…
My Dad had radiotherapy for salivary cancer and he went very green and crusty all over his face which was absolutely revolting. I’m happy that I shouldn’t go green and crusty according to the nurse. I may lose some hair, but that will be ok because it is only hair and I already have some bald spots from my surgery where I picked the scabs (bad JD – no biscuit). I’m concerned about losing some of my eyebrows but I’ve already roped in a friend skilled in the art of makeup to help me to not look so weird. Dutchcloggie wants to draw them in with a felt tip but she’s definitely not allowed. Hopefully no monobrow for me!
I’ll check in later.
A post by JD
I have my first treatment of radiotherapy today at 4:20pm. I have been waiting for this date for quite a while now and I just want it all to start properly. I’ve had all of the planning appointments and have had the mask made etc etc but have been waiting for today to come for about a month or so. Traveling to the hospital will be tough (as I can’t really drive at the moment – I’ll find a way) but there is good public transport. And I have some friends who have agreed to give me lifts and put me up for the night. What wonderful people! I’m not sure how much I’ll blog about it as I’m not big into diary-keeping/blogging/record-keeping but we’ll see. Speak late
A post by JD
Yesterday could have been one of the worst days in the year. But it passed without any major problems. I got a 2.1 which is what I wanted and which is plenty to see me into my MSc.
The biopsy results were slightly useless in that they couldn’t determine the type of tumour but that they could say that it wasn’t high grade (malignant). The consultant told me after surgery that he was pretty sure it was benign but it is still nice to have that confirmed. So no further treatment for me. Except for anti-convulsants for the rest of my life as they don’t know the exact tumour type. Yay!
So life continues as normal for now. There is a possibility that it could change into a malignant tumour but there’s no point worrying about that. I’m just getting on with life.
…we should know how JD’s surgery went. Hopefully she will be back from the OR with a bald head, a big plaster and a tumour removed. Hopefully she will be fine and the tumour will end up being removed completely and no further treatment is needed. Hmmm….that last bit is not going to happen I feel. They can apparently not remove it completely but only ‘debulk’ it.
I am getting a litle nervous now. Not scared (yet) but nervous. My parents have changed their holiday plans. They were going to drive to Italy with their caravan but they felt uncomfortable being so far away from me and JD in case something happened. SO now they are crossing the Channel from Holland to England with the caravan. This week they will be around the coast but by Saturday, they will come and set up camp here in Warwick. They’ll be here for JD’s BBQ and as long as she is in Intensive Care. And really, my folks like JD so they are not just here for me but also for her. I now realise I am pleased they are coming. My sister offered to come over as well but I was so busy when she was asking me that I just did not have the quiet time to sit and think about it. So I said that it would be a little too busy perhaps. So now she is not coming. I felt dreadful and really guilty for saying that. Especially because now that it is all much closer, I can see that it will probably be a bit difficult for me to be home alone in the evenings when JD is in hospital.
I am confused as to how afraid we need to be. Very very afraid (after all it IS removing a brain tumour) or should we be only a little afraid? I find that confusing. Perhaps I am afraid of embarrassment. We are throwing a BBQ for JD but for all we know, we might be overreacting to it all. No idea.
The doctor has said that JD will look like she has been hit in the face with a brick when she comes out of surgery. This is because they literally peel her skin down her face towards the nose so they can cut a hole in her skull to do the surgery through. Yuk. Poor girl. I wish it could be me, not her. I do not believe in God but if you do and you have a spare minute, just keep JD in your prayers. You never know, it might just work. Although you must realise that if it does not work, I will hold you and your God personally responsible for it!!!
A post from JD
..final exams to begin on Wednesday. And for those who are interested, the exams run as follows:
18th May PM Service Operations Management
19th May AM Entrepreneurship and Small Business
23rd May AM Marketing Analysis
1st June PM Finance
2nd June AM Operations Management
It doesn’t seem a lot but since the whole ‘going into hospital and having brain surgery’ thing kicked off they have seemed like an insurmountable task. But time passes and now they’re here. I can only do my best. But maybe my best will not be good enough as I am not happy with my preparation as I’ve found it very hard to concentrate without thinking about the surgery conveniently scheduled for the 6th.
I’m scared of not waking up. I don’t want M to be alone – that sounds really egotistical doesn’t it? I suppose it doesn’t matter for me as I would be gone but I want a few more tomorrows together. If I die it would be like I’ve been short changed by the bank of life. I’ve got new people to meet and a bestselling novel to write. Maybe some children? Definitely some cats. Fun job, money not important, but I’d like to be able to afford to travel. Taking M and exploring somewhere new. Just being in each others company. Outside somewhere lying on a patch of grass having a snooze. Anywhere really.
Maybe I’m just ranting because I’ve been inside working for the past few weeks. The tumour puts life in perspective. Exams are not important. I will not suffer too much if I don’t do so well but I would like to do well for my own satisfaction. I know what I am capable of achieving.
I’ve developed a highly tuned ‘shite filter’. If something isn’t important I ignore it. It amazes me how people can get wound up by the silliest things. I want to tell them to get over it and get on with their life. To do ‘something’ so that they don’t get to the end and feel that they’ve wasted their time. I understand that all too clearly now. If I live three more of my lifetimes again then I will be 84, which most would consider to be a good innings. So that’s another 63 years in which to do some decent living.
Or another 21 days.
We don’t know. JD might end up an epileptic for the rest of her life with Post Traumatic Epilepsy. Or the knock might simply have exposed a previous condition that leads to having seizures. Or it might be a one-off. They don’t know and they can not tell. That is the most frustrating bit. You just don’t know. It can happen again at any time. Or not at all. And in the mean time you have to adjust your life: don’t lock the door when going to the toilet, in case you have a fit. Always have a phone next to your bed in case of a fit. Always wear a bracelet with instructions for people if you have a fit. No driving for a year. No sport, no more rugby. Take it easy at University…
Take it easy? This is her final year. She wants to go to London for her Masters but that will depend on her grades. Will they be good enough? Or not? How will this impact on her future? I don’t give a rat’s arse about what it means for me although I am already aware that I need to be careful and not smother her by telling her not to do anything.
Taking it easy is not the same as not doing anything at all.
It is important not to treat her like a patient but it will be hard for her.
But it will not stop her playing rugby apparently. If she can no longer play the game, she will be involved on training. Our coach, bless him, has already asked her if she was interested in helping him with training sessions. Good. I would hate for her to loose that too.
I am sad. And worried. For her. She is only 21. I know epilepsy is not a death sentence but it is pretty shit none the less.