Move the Universe

Move the Universe

 

Hello friends

I hope things are good with you, I’m feeling good at the moment (because I’m between treatment) and feel like I am achieving some things.  I got signed off work for another two months which will allow me to have the radiotherapy treatment and give me time to recover before starting back at work (hopefully) in June.

I sent off one of the ‘give away’ packs to Sanje Sofar this week but I’m still waiting to hear from Lucydragon and Isisimaginings so I don’t know where to send their packs too.  If either of you read this please see my last post and let me know your snail-mail address so I can send you your packs.

My computer screen died earlier in the week, at first I thought it was the computer itself but eventually I worked out it was just the screen.  T tried to fix it for me but was unsuccessful so I went out and bought a new one.  I love it, it’s a bigger screen than I had before and everything looks much better now 🙂

Today we went to the local hospice to visit a friend.  I have never been there before and was a bit anxious about it.  Obviously he has been very unwell but things were not quite as bad as we had possibly expected. Although still not good. He was dressed and up and in remarkably good spirits. He is hoping to be able to go home again soon so that’s good. I’m glad we went because we haven’t seen this friend in a long while and it was good to reconnect and hopefully let him know that we care.

I have to go back to the local hospital this coming week to see a consultant in the Maxillo Facial unit.  That’s where I had the biopsy taken and was given my diagnosis before being transferred to the Haematology Department.  The two consultants I saw in MaxFax were both very nice so I don’t have any concerns about going back to see them this week, I’m just not sure why they want to see me again but I’ll find out when I get there.  While I’m at the hospital I will also try and find out if there is any help with the cost of travelling over the mainland for 17 days for the radiotherapy treatment.

The page above is from my new small journal and this is what it looked like before the penwork:

Before and After

And if you have 8 minutes to spare here is another video of an early journal:

Well that’s all for now folks see you soon

Big love AJ 🙂 xxx

 

 

 

Love is the Flower, And the Winners are…

Love is the flower

 

Hello friends

I hope all is good with you and as promised today I’ve made the draw to see who will be the recipients of my packs of paper and craft stuff.

I wrote all the names on pieces of paper and put them all into my ‘beany hat’ that I’ve been wearing at home for the last several months (ever since my hair fell out about two weeks after starting the chemo therapy).  My hair is beginning to grow back now but there is still not enough of it for me to go out without some sort of head covering, but I’m looking forward to the day when I can go out without a hat.  Anyway I digress, I put all the names into the hat and drew out three pieces of paper.  So the winners are….. (imagine drum roll here) …

Lucydragon

Sanje Sofar

and

Isisimaginings

Congratulations! If you could let me know your mail addresses I’ll get your pack off in the post this week. You can email your address to me at subagua@gmail.com  (the first word is subaGua, i.e. a G not a Q, but in lowercase)  I don’t normally check this email box as I generally tend to use it for people who I think will spam me with lots of stuff I don’t want or need, but if you send me your address to that email address and then leave me note below in the comments I will be sure to check so I can post you your goodies.

Today has been a lovely sunny day and I did some gardening, well actually T did some gardening and I held some posts while he banged them into the ground with a big sledge hammer.  I also mowed the weed patch that has a few blades of grass in it and pretends to be a lawn and dug up some weeds from the borders.  That’s not proper gardening but the front garden does look a bit better now.  We used to just have a lawn and borders in the front garden but I’m really not good at looking after lawns (and that is my job) and, as T was always saying he didn’t have enough room to grow all the vegetables he wanted to grow, I persuaded him to put some raised veg beds in the front.  I foolishly thought this would mean all the grass would be eliminated and I would no longer have to mow it.  But now on the rare occasions when I do get the lawn mower out I have to cut around the raised beds, it’s awkward.  Still at least I got some fresh air and exercise today so I mustn’t complain.

Last week I went to Southampton Hospital to have my mask made.  That was an experience!  First of all I had to have the mouth piece made that will hold my mouth open. It was a tube (for breathing through) wrapped in some sort of gum which almost filled up my mouth. I had to put it in my mouth and bite into the gum to make an impression, then wait until it hardened.  While this was going on they soaked this hard plastic sheet that would become my mask in a hot water bath.  I had to lay on the bed thing while they got me in exactly the right position. Then when I was correctly aligned they laid this hot but not unbearable plastic over my face and clipped it to the board behind my head, then they moulded the whole thing to the contours of my face.  There is a mouth hole in the mask so I can breath through it, but no eye holes.  The plastic is opaque so once it’s on my face I can ‘t see a thing.  Fortunately they spoke to me all the time telling me what they were doing so I felt reassured.  Once the mask was contoured to my face they put ice packs on it, so it went from being quite warm to being very cold which hardened the plastic and eventually they took it off.  It probably only took about 20 minutes.  It was weird but just about bearable.

After that I had to go and have a CT scan with the mouth piece in and mask on again. The scan didn’t take long.  Definitely not the most pleasant experience but I will have to go through this every time I have the radiotherapy and I will be able to cope with it.

I also got my schedule for radiotherapy which starts on April 8 and finishes on April 29. So for most of April I’ll be travelling across the water on a daily basis (except weekends) to have the treatment.  I guess that will be good practice for getting back into the routine of getting up for work every day.

I’ll be recuperating for most of May and hopefully finally starting my phased return to work in June.  That’s my plan anyway unless something else crops up in the meantime.

Also I am hoping we can get away for a short holiday at the beginning of June just because I think we both deserve it.  We just have to try and work out how the cats will be looked after while we are away and book up somewhere to stay.

The page above is from my new small journal and I thought I’d show you how it changes between the collage and when I’ve added all the penwork:

Collage                                                                                          Penwork

Collage & Penwork comparison

 

That’s just about all my news for now.  I hope you are all well and happy and, if you are in this part of the world, enjoying the beginnings of Spring.

See you all soon

Big love

AJ xxx

A Give-Away and an Update – the journey continues…

Live, Love, Laugh

Hello friends

The page above is the front cover of my 16-page Teesha Moore inspired journal.

An apology

First off an apology, I am sorry but I omitted something from my last post.  A little while ago I was contacted by Jenny of This Rosy Life blog asking if I’d like to participate in a blog hop.  I really was not up to it at the time so I declined the invitation, but nevertheless Jenny still mentioned me and my blog in her post  here.   Jenny is an amazing collage artist and I am really impressed because she uses lots of flower images in her work, I’ve always found flowers to be quite difficult to use in collage.  If you have a few minutes to spare why not pop over to Jenny’s blog, have a look at some cool art and say Hi to her?  This Rosy Life.

The Give Away

I promised recently that once I had finished the chemo therapy I would have a ‘Give Away’ to celebrate that milestone.  I have made up 3 packs of art supplies that I no longer want or need.  All three are similar and look something like this:

Give Away Pack

There are collage sheets, papers, some stamps, embellishments, bits of maps and printed papers in each pack.  It looks like there is money too, but the £20 and £50 notes are actually printed on serviettes and are NOT genuine currency 🙂

Each pack will also include one of the small journals I made from a pile of scrap papers:

New Journals

If you would like to win one of these packs please leave a comment below and I will pick three random winners on Sunday 22 March.  It doesn’t matter where you live as I’m prepared to post to anywhere worldwide and I’ll mark the package as a gift with low monetary value so you shouldn’t have to pay any import tax if you receive one.

Update on my health and the continuing journey

I had the last round of chemo on 24 February *Happy Dance*, I’m so glad that part is over. I’ve been feeling pretty good since then, so good in fact that I thought perhaps that was the only treatment I needed and I even began to think about returning to work next month.

I’ve been spending a lot of time still de-cluttering my room, I’ve made several trips to the local municipal tip and donated loads of stuff to a local charity shop.  Making up the scrap books from the 10 years worth of local magazines took me about 2 weeks and it was a really boring task, but I got there eventually and now I just have a neat little pile of scrap books instead of a huge plastic box full of magazines. The more I’ve got rid of stuff the easier it has become and it no longer feels quite so oppressive in my room.  I still reckon I could get rid of at least 50% of the stuff that’s left but for now I’m taking a break from de-cluttering and concentrating more on creating art.

Because I thought I’d be going back to work soon I collaged one of the small journals I made.  I needed something small to fit into my handbag and carry around with me with a few pens so I can journal whenever I get a few spare moments.  That will still come in useful but I won’t be needing it as soon as I thought I would as it doesn’t look like I’ll be going back to work any time soon.

Yesterday I had an appointment to see the oncologist at Southampton Hospital.  T and I set off at 8am and it took a couple of hours to get there.  I drove over to Cowes parked the car and took the ferry to Southampton then got a free mini bus to the hospital. It took us about half an hour to find the right department in the vast hospital and then we had a short wait before we got to meet a very lovely female doctor who asked me lots of questions about what had happened to me and seemed genuinely interested in me and my condition. She said “We recommend that you now have radiotherapy” and explained why they thought this was necessary.  Not only did she explain things, she checked that we had understood her explanation and encouraged us to ask questions.  If she was able to answer the questions she did and if she was unable to give us answers she explained why there are certain things they don’t know about my specific cancer but why they think the radiotherapy is necessary.  She explained all about what will happen next and during the treatment and what the likely side effects will be, including mouth ulcers, sore skin and the possibility that the saliva glands on that side could be damaged by the treatment and how that will be dealt with.

Next Monday I will have to go over again for another CT scan and to have the face mask made up.  The mask is necessary to ensure that they can target the area of my jaw bone while causing as little damage as possible to any other area of my face and mouth. The mask will also mean that I am unable to move my head and will hold my mouth open during treatment.  About two weeks after that the radiotherapy will commence.

I have to say it doesn’t sound like it’s going to be much fun but the treatment should be fairly quick.  I’ll have the treatment every (week) day for three weeks, the actual ‘zapping’ is only for a few minutes but the fixing of the mask and lining everything up takes a bit of time so I’m probably looking at about 20 minutes or so each day, plus what ever time I have to wait around at the hospital (for some reason there is always an element of ‘waiting around’ at hospitals) and about 4 hours travel every day.  I think I am going to be very tired at the end of this treatment, but hopefully by then I will also be in a good position to get on with my life and think about returning to work.  Most of the side effects should start to improve soon after treatment finishes.

So after this long chat with the lovely doctor we both read and then I signed the consent form and then she said, “Now I’m going to get Dr B (the boss) and he is going to come and talk to you.  During your treatment here we will both be looking after you and you will be seeing one of us at least once a week during the three weeks and we will be checking on your progress”.

Dr B must have been busy because it took a while before she came back with him.  He too was was very friendly and warm, explained things to us, checked we understood and encouraged us to ask any questions.  I told him that we were not used to being encouraged to ask questions and in fact we had both been made to feel like we were being awkward every time we asked the consultants at the local hospital any questions.  It was just so refreshing to be treated like adults for a change.  So we did ask questions and he gave us full and frank answers, then eventually I plucked up the courage to ask the one questions I really wanted the answer to, I said, “There is something else I’d like to ask you and I don’t know how you will react to this because I’ve asked two different consultants at my local hospital the same question and both times I’ve been made to feel that it is a totally unreasonable and ridiculous question to ask, but anyway here goes.  Is it possible for me to see the scans I’ve had taken and be given an explanation of what was found”?

Both doctors immediately said “Of course you can see your scans, you can see them right now, it’s not an unreasonable question, it’s something we would expect you to ask and we always show patients this information”.  Within a few minutes he called up the information on a computer screen. First of all he showed me the CT scan I had taken at the local hospital when I was first diagnosed and still had the tumour in my mouth.  The tumour was really obvious in the image.  Next he showed me the PET scan I had taken at Portsmouth hospital a few weeks later by which time the tumour had disappeared and he said “So we can see there is no tumour evident in this scan however when we get right into your jaw bone these bright areas show that there are still some cancer cells active and as you can also see here there are some large voids in the jaw bone”.  I was told that once the cancer is eliminated there is a good chance that the bone will grow back, but in all likelihood I will always have a weakness in the jaw bone and I may have dental problems in the coming years.

Dr B said “I’ll be honest with you, there is a possibility that the chemo has already dealt with the cancer, but to have this type of cancer in the location where you have it is extremely rare and it can be difficult to treat.  I want to give you the very best chance of survival that I can and that’s why we recommend this further treatment.”

I don’t know but it felt like they both really cared and although I’m not entirely happy about having the radiotherapy I also want to give myself the best chance of surviving this cancer so I’m OK about going along for the additional treatment.   And so my journey continues but I finally feel like I am being dealt with by people who care about me and are involving me in the decision making, it’s a refreshing change from how I’ve been dealt with over the past 5 months.  I hope I don’t get referred back to the local hospital when the treatment is finished because I don’t want to come under that hospital again even if it means I have to pay to travel to the mainland to be seen there.

So that’s where I am right now, probably not going back to work until the end of May, by which time I will have had more than 6 months off!  I’m fortunate that I work for a good company and they are being very understanding and caring about me too.

I hope all is good with you all, take good care of yourselves and make sure you have fun because you have no idea what could be waiting for you just around the corner.

Don’t forget to let me know if you want to be included in a chance to win one of my Give Away packs. Good Luck!

Big love from me

AJ     🙂  xxx

 

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