Tag Archives: cancer

Embrace the Glorious Mess that you are

Posted on by
8

 

 

Glorious Mess

Hello friends

I hope all is well with you, I’m doing fine.

It’s been a while so I thought I should update my blog.  Here is another page from my Warrior Women journal.  I am learning acceptance – sometimes you don’t need to put up a ferocious fight in order to overcome life’s difficulties, sometimes you just need to accept things as they are.

Acceptance looks like a passive state, but in reality it brings something entirely new into this world. That peace, a subtle energy vibration, is consciousness.

Eckhart Tolle

 

After round 1 of chemo I didn’t feel too bad, nowhere near as good as I felt before it, but nevertheless not too bad.  I even went to work the next day but I didn’t get there until 11am and everyone was out of the office and I had nothing to do so I left again at 3pm. Still at least I made the effort.

I had medication to take in the week following the chemo to help with the side-effects.  The side effects I was aware of were nausea (but I had tablets for that), tiredness, aching legs and everything tasted strange but I certainly did not feel ill.

I had enough steroids to last me 5 days and then on day 6 which was last Wednesday I felt like I’d been hit by a truck. I actually got up early and started getting ready for work, but everything was a struggle, and after I found myself just lying on the sofa for half an hour I realised I couldn’t go into work. I phoned in and told my boss I needed to take sick leave and went back to bed where I stayed all day.  I did get up at about 4pm, had a bath, put clean pyjamas on and went back to bed.  Finally got up at 8pm and watched tv for a couple of hours.  I took the next day off work too and went back in on Friday.

Over the weekend I was OK and we took Mum and Dad out to lunch on Sunday, by that I mean that I drove but in fact they treated us to the lunch.  I ate far too much and my stomach was uncomfortable afterwards.

I’ve been back at work this week and on Tuesday evening I went to a Remembrance Day service held in the chapel in the cemetery.  My house is actually in the cemetery so I only had a short distance to walk.  I saw a lot of my friends from the local history group there but I didn’t stay long after it finished because I felt very tired.  Yesterday I was also struggling with tiredness and today I’ve phoned in sick again because I just don’t have the energy to do much at all.  I think my hair is beginning to fall out now too and my scalp feels uncomfortable 😦

I went to see the ‘wig’ lady the other day, but I really don’t know if I want to wear a wig, a couple have been ordered on approval but I did tell her that I’d have to have T with me when I went to see them because he will tell me honestly if they look terrible.  I’ve a feeling that wearing a wig all day will be uncomfortable too and I just don’t think they look realistic. Well not the ones I can afford anyway.  I’ve got head scarves and hats ready for when I need them.

Next week I have to see the consultant haematologist on Wednesday and then on Thursday all day at the chemo suite for round 2 – ding, ding!

So that’s where I am at the moment, I feel like I’m doing OK just wish I had a bit more energy but we can’t always have what we want can we and I know I am luckier than many people so I’m not complaining.

Wishing you good health and happiness my friends

Big love

AJ 🙂

xxx
© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.

My Kind of People

Posted on by
5

Crazy People

Hello friends

How are you all today, I hope it’s good.

I am fine, I had my first round of chemotherapy on Thursday, it took over 7 hours because I had a slight reaction to the antibody (that’s the bit that locks onto the cancer cells and flags them up as targets for the other drugs), so it could only be dripped in very slowly. When the antibody was finally in it took just over an hour to get all the other stuff in. Because of this reaction it means all the other treatments (another 5) will also take that long.  The plus side of this is that I’ll have plenty of time for doodling and that’s never a bad thing 🙂

So far I’m feeling OK and I went in to work on Friday. I am still taking meds that I bought home with me, they finish in a few days time and I’ve been told I might feel a bit unwell for a few days after that, then I’ll start feeling better, then I see the doctor for a check up, and then on November 20th we start round 2.

I have a feeling that the problem with my ‘none’ treatment on Wednesday was due to staff shortages and overwork in the NHS so I’m not going to complain.  I think someone just overlooked my paperwork because they had too much to do.  I know it’s shocking that it could happen, and fortunately for me the consequences were only upset and inconvenience, but I don’t want anyone being ‘hung out to dry’ for that. They know it’s happened and it is being investigated but I don’t need to add anger to the equation.

I’ve had a really good day today, the weather has been warm and sunny and early this morning I received a package from my FB friend Iain ‘Oli’ Oliver containing this wonderful limited edition print by artist Jamie Reid:

KONICA MINOLTA DIGITAL CAMERA

I took the photo under artificial light so the colours are not true in the photo, but it’s bold, bright and uplifting and I LOVE it, thank you ‘Oli’ ❤ It brought me JOY 🙂

I had a slow and lazy morning pottering about – making sure I took meds at the right time, doing some washing, making a batch of smoothie, having breakfast, taking more meds and getting showered and dressed.  Then I wandered in to town and did some shopping and when I got home there was another package waiting for me.

 

This time it was a the book Dizzy Spells by the artist David Shillinglaw:

Dizzy Spells

I ordered the book about a week ago I think and I was so happy to receive it today.  I love David’s art, especially his wall murals, they are so colourful and cheerful.  There’s lots of symbolism and repetition in his art that just speaks to me at a deep level.

I had made tentative enquiries about getting him to come to Ryde, the town where I live, to paint a wall for our local arts festival next year.  We have a perfect wall that is in desperate need of a piece of wonderful artwork but I have to be honest I’m not really sure how I would get permission from the owners to have it painted (maybe just ask?) or raise the funds to pay for the project, but I’m sure it would have been worth the effort.  Then I got hit with the cancer so now everything is on hold until I recover in that regard. Never mind I can still go on enjoying his artwork even if it’s not here in my town and Dizzy Spells is a little gem of a book, full of black an white illustrations from David’s journals.  He is very clever with his use of words too, it makes me smile.  Thank you David 🙂

And that brings us neatly to my little offering of art at the top of the page, it’s a page in my journal inspired by ‘Teesha Moore’s Amazing 16 Page Journal‘ and the quote says: ‘Life is about finding the people who are your kind of crazy’.  And I reckon that Teesha Moore and her husband Tracy (both of whom I’ve met), Iain ‘Oli’ Oliver and David Shillinglaw (who I haven’t met) are definitely my kind of crazy people. 🙂

Take good care of yourselves and I’ll see you soon.

Big Love

AJ 🙂

 

 

 

© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.

 

 

A Woman of Strength

Posted on by
10

Woman of Strength

Hello friends

I hope all is good with you.  I am doing fine although today has been a bit of a challenge.

The image above is from my Warrior Women Journal and it is to remind me that whatever difficulties I face will only make me stronger. If you click on the image you can see it bigger.

After my last post I received a letter from the hospital telling me I had an appointment at the chemo therapy unit for 11:00 am on Monday for an education session and then the first round of chemo today (Wednesday 29 October) starting at 09:30.  I was impressed that the appointment on Monday was half an hour after my appointment for the ECG so we’d only have to make one trip and cover two appointments.  We arrived at Cardiology in good time for the appointment (as we always do) and then sat and waited and waited (as we always do).  At 11:00 I still had not been called in for the scan so I sent T off to the Chemo unit to tell them I would be late. Eventually got called in and had the scan and then we made our way to Chemo where we met a lovely nurse who explained all about what was going to happen when the treatment started.  The first day was going to be a full day and I would be monitored constantly to make sure I was OK.  If the first day went OK then subsequent treatments should be quicker.  I was also shown the treatment room and introduced to the team.  I have to say that of all the (many) parts of the hospital I have now visited the people in the Chemo suite are the most friendly, professional and caring people I’ve met.  So although I am slightly anxious about the Chemo I am reassured that they will take good care of me.

Today my brother picked us up from home and dropped us off at the hospital for the 09:30 appointment.  We waited in the waiting room with other patients before being called in to the treatment room.  After a while I noticed that everyone else  was having their blood pressure and pulse taken and being prepared for, or already receiving, treatment, but I wasn’t.  This was strange because I knew I was going to be there all day and most of the other patients were there for shorter visits.  Eventually I was told that they were waiting for my paperwork to come through and as soon as it did they would start treatment.  Then at about 11:00 I was told that my consultant had forgotten to write the prescription for my Chemo, but it was being done right now and as soon as it was made up they would commence treatment.  Then at 11:30 I was told the consultant was not available to write the prescription as she was with another patient and therefore they would not be able to treat me today but could I come back tomorrow.  I think I said something that was fairly loud and had a few expletives in it when I was told this and T got really, really cross with them and had to leave very quickly. They were all very apologetic and the staff in the Chemo suite were as angry about it as we were.

The consultant who forgot to write my script is supposed to be in charge of my case but I am not feeling very inspired or confident now that something this important was not picked up. Surely my care cannot be down to just one person? I was told I was under a whole team of people so how come someone else didn’t check everything was in place for today? I am thinking of putting in an official complaint but no doubt there will be a lot of excuses and buck passing and we’ll never get to the bottom of it.  I’m really not happy with what happened today.  I was unable to contact my brother to get him to come back and collect us so we had to get a taxi home (and even that was a hassle and it took over an hour to arrive).

Sometimes I think my life story has been written by some surrealist comedy writer with a very warped sense humour!

OK that’s the rant over and now I’m going to be calm and start all over again tomorrow.  I need to stay positive because anger and anxiety won’t do me any good, it just saps my energy and puts me in a bad place.  What I really need now is calm and positive energy.

Stay healthy and happy everyone.

Big love

AJ xxx 🙂

 

 

© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.

 

 

Moving forward slowly…

Posted on by
13

Hello friends!

I hope you are all doing well, here everything is fine, progress is slow but things are moving forward and in the meantime I’ve finished the Little Book of Cosmic Maps 🙂

Back & Front Cover

For me doodling is a really good way to pass the time..

Spread 1

Spread 2

Spread 3

Spread 4

As you can see I’ve had a bit of time on my hands recently…

I had the PET scan last week, it was OK just a bit of a hassle, it took 2 hours to get to the hospital then I had to wait an hour before I was called in, they gave me the injection of radioactive glucose and I was left on my own for another hour before I was called in for the scan.  It took about 35 minutes and then we were free to go.

I was told that I would be slightly radioactive for about 6 hours and was to avoid contact with pregnant women or children.  However I was still allowed to travel home on public transport (another couple of hours).  I didn’t stroke my two cats until the next day, but it didn’t seem to bother them.

Yesterday we went for another appointment with the consultant haematologist and she told me that the results of two of the three tests on my bone marrow are back and neither of them found the cancer in my bones.  The final test is more vigorous and the results of that are not back yet.  But so far it’s looking good.

The PET scan didn’t find any more tumours in my body (phew!) but although the tumour in my mouth has shrunk the scan found residual lesions in my jaw (I’m not sure but I think that means scaring).  So although the tumour is almost gone I still have the disease in my blood but it’s in it’s early stages and there’s a good chance that with treatment I can fully recover. So the plan (worked out by this mysterious team of invisible experts) is for me to have 6 rounds of chemo and then radiotherapy on my jaw.  It feels like I’ve been telling people for over a month now that I’ll be starting chemo ‘next week’ and that hasn’t happened but it now looks like it will start during the week commencing 3 November.  In the meantime I have to sign the consent form and have an ECG just to make sure my heart is OK. Tomorrow I have an appointment with the nurse who is going to tell me all about what’s going to happen and on Saturday I have to visit my local doctor’s surgery to have a flu jab because they want that done before the chemo starts.

Having chemo-therapy is not something I am going into lightly and in truth I’m not looking forward to it but …. ‘needs must’ as they say, I’m just not sure what to expect.

I’ve been feeling so well for the past two weeks and enjoying not being at work but tomorrow I am going to go back to work because I reckon if I take too much time off I won’t want to go back at all!  Anyway it’s pointless, and unfair on work colleagues, to have sick leave when I am not if feeling sick.  Fortunately I have good employers, I’ve worked for them for a very long time and, up until now, I have a pretty good attendance record.  I think they will be flexible around my hospital appointments and will be OK with me having time off if the chemo (or the cancer) makes me unwell over the next few months.

So all in all I am doing well at the moment, and I am staying positive and upbeat.  I hope all is good with you where ever you are in the world.

Big love

AJ 🙂

© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.

 

 

Cosmic Maps and where I am right now

Posted on by
19

Cosmic Maps

Hello friends

I hope all is good with you.

Thank you all for all the love and support you have been sending – positive energy is a powerful thing and I’m grateful to have all you people in my life right now.

So, here is where we are today but first just a quick recap.  On 10 September I had a biopsy taken from a mass in my mouth and on 17 September I was told I have Large B Cell Lymphoma – a cancer of the blood.  The next day I had blood samples taken and on 26 September I had a CT scan.  All the time the mass in my mouth was growing and I had to go onto a liquid diet because I could no longer chew any food.

I started making up superfood smoothies and drinking a litre a day.  The smoothies always contain fresh green vegetables, 2 teaspoons of ground up buckwheat, about an inch of ground up turmeric root, desert spoon of hemp oil, teaspoon of chia seeds, desert spoon of probiotic yoghurt, sprinkle of ground cinnamon; then I add fresh and/or frozen fruit to make is taste nice and coconut water to thin it down to a drinkable consistency.  I have to say I have been feeling great since starting this diet.

On Monday 29 September I saw a consultant haematologist at the hospital and she was supposed to tell me then all about my disease and the treatment plan, but that didn’t happen as the results of the scan and blood tests were still not available.  She did give me a quick examination.  She asked to look at the mass in my mouth and I warned her it looked disgusting,but her reaction of “Eugh!  That’s big and looks horrible” shocked me a little.  I already had the feeling that the tumour was shrinking by then but I didn’t say anything. So we got no definitive answers that day and we left the hospital a bit disappointed but understanding that the treatment needs to target the problem so the more information they have the better.

My next appointment, ‘by which time we hope to have the answers’, was supposed to be yesterday at 12:30 but on Tuesday I received a phone call asking me to go in at 09:30 instead so they could take a bone marrow biopsy after which I would be seeing a different consultant haematologist.

This consultant confirmed that the first biopsy had returned the cancer diagnosis and the results of the blood tests had confirmed the diagnosis.  The CT scan only found the cancer in my jaw bone, causing the mass in my mouth, and nowhere else in my body – Good News!!! Two more tests are required so that they can accurately ‘stage’ the disease – the bone marrow biopsy and I will also need to have a PET scan sometime in the next two weeks.  She said that in the meantime they can start treating the tumour in my mouth and I told her that it has already gone.  This is true since 29 September the tumour has completely shrunk and I no longer have any swelling inside my mouth.  My tooth is a bit wobbly and seems to be exposed at the roots, but all the swelling has, for the time being at least, gone.

The consultant looked at me with disbelief.  She asked me if I had been taking Steroids and I said I hadn’t had any treatment, then she checked she was actually talking to the correct patient (confirmed).  She said she had seen the tumour on the scan and that it was very unusual for a tumour to disappear without treatment.

In the light of this new development we agreed to wait until all the results are in before starting treatment.  So the bone marrow has been taken for analysis, I’ll be having the PET scan soon and more blood will be taken for retesting.  My next appointment is 21 October and I will probably start treatment soon after that.

It is such a relief that my mouth feels almost normal now after weeks discomfort, but don’t worry I am a realist and I understand that the tumour was a symptom of a much bigger underlying issue that is going to have to be dealt with in the near future.  It just feels like I’ve been given a breathing space and a bit more time to prepare myself for what lies ahead. I’m in a good place right now.

The image above is another spread from my Little Book of Cosmic Maps.

Take good care of yourselves

Big love

AJ xxx

 

© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.

Feeling loved and grateful :-)

Posted on by
7

All is Good

Hello friends

I hope you are all keeping well, happy and enjoying life.

Ever since I got my cancer diagnosis on 17 September my husband, family and close friends have rallied around and given me masses of support and love.  Then when I decided to share the news here, on my Facebook page and in a couple of FB groups I belong to the messages of love, support and positive energy have been almost overwhelming.  I am so grateful to everyone who has taken the time to send me messages and I truly have been feeling the love.  THANK YOU ❤

Of course I am still in limbo as I don’t know what the results of all the tests will be and I am preparing myself for whatever the news is next week, but in the meantime I am feeling just great.  The horrible and disgusting mass in my mouth has (without any treatment) now shrunk and I have very little swelling under my teeth, I feel much more comfortable and I can now eat properly as long as the food is soft and does not require much chewing.  For the past two weeks I’ve been living on my superfood smoothies and soup, but today I get to eat a proper meal, yay!

Today has been a lovely day, sunny and warm and after a late start I spent an hour making up today’s batch of ‘slush’ which contains lots of fresh, organic vegetables and fruit, then I took a stroll down the town and looked in a few shops.  I even bought myself some comfy clothes that will be ideal for just hanging out at home.  I’m guessing there will be quite a lot of just hanging about at home if/when I start the chemo-therapy so why not have comfy clothes to do that in?  Then I popped in to see Mum and Dad, just to check they are doing OK.  I think Mum was the person hit hardest by my health news, but we are all trying to be positive and optimistic now.

Now I’m back home I’m waiting for T to serve up dinner.  It smells very appetizing. Mmmmmm 🙂

I am creating a new journal of warrior women – these are the troops I am rallying around me ready for the battle ahead.  Some will be fierce like the one I shared here and others will be more supportive and gentle, buy they are all going to help me get through this in the months ahead.  The image above is the second spread from this journal and is to remind me that whatever happens and no matter how hard things get everything is always as it should be.

Thank you again to everyone who has contacted me with lovely messages, it has really helped me get over the initial terror and shock of the cancer diagnosis and to ready myself for what lies ahead.

See you soon

Big love

AJ 🙂

 

© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.

Learning the art of patience.

Posted on by
9

Patience is not simply the ability to wait – it’s how we behave while we’re waiting.

Joyce Meyer

Cosmic mapsHello friends

I hope all is good with you.

Today didn’t go exactly as I had prepared for.  I had an appointment with a consultant at the hospital and I was expecting to be told the specifics of my cancer diagnosis and, more importantly for me, the treatment plan, but it didn’t work out like that.

The results of the CT scan I had on Friday were not available and the blood samples I had taken last week now have to be sent to another hospital for more rigorous testing. This means that my case will not be discussed at the Multi-Disciplinary team meeting tomorrow so no treatment plan will be drawn up this week.  IF everything can be sorted out by Friday of this week then I can be discussed as the MDT meeting next Tuesday so I now have an appointment to see the consultant again on Wednesday 7 October.

I have to be honest I felt a bit let down.  I do understand that the treatment has to be specific to the type and stage of my cancer and a few more days delay won’t affect the outcome, but I, of course, am anxious to get this show on the road and to start fighting…

Still there is good news – I am still feeling well and the tumour doesn’t feel quite so uncomfortable now.  On top of that over the past few days I have become an expert in making fruit and veg smoothies and in cooking up batches of soup.  This probably doesn’t sound a big deal to you but it’s a whole new world to me.

Anyway it’s all out of my hands so I am just going to have to be patient for a while longer.

The image above is from a little book I have been working on that I am calling The Little Book of Cosmic Maps.

See you soon

Big love

AJ 🙂

 

 

© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.

Healing takes Courage

Posted on by
48

Healing takes courage

 

Hello friends I hope you are all well and happy.

A few days ago my life got turned completely upside down when a very kind man with a concerned look on his face gently put a hand on my shoulder, looked into my eyes and said “I’m sorry but you have cancer”.   He said lots of other things too, he explained a lot and I understood every word he said but somehow I couldn’t take any of it in.  I just wasn’t expecting him to say that, after I heard the word  cancer my mind just went into freefall and I couldn’t even think what questions to ask.

Physically I feel fine apart from a problem in my mouth.  I thought I had an abscess under one of my teeth so I went to the dentist and was put on antibiotics. They didn’t work and the swelling got bigger.  All in all I took four lots of antibiotics and it just got bigger although strangely it just felt uncomfortable and not painful.  The antibiotics made me feel awful too.  Finally I was referred to the hospital and my first appointment was for last Wednesday, but I panicked a bit and by going to A&E and asking them to check it I managed to get the appointment brought forward by a week.  The doctor I saw was very reassuring he said “it looks quite alarming but I don’t think it’s cancer”.  He did take a biopsy, just to make sure, and told me to come back on Wednesday of this week when he hoped he would have the results.

So I had a relatively stress-free week, I thought I would need surgery to have the lump removed and I knew I would lose several teeth when that was done, but afterwards I’d be getting back to normal and eventually wearing dentures. I’d get used to that…

So this Wednesday when T and I went back to the hospital we were fairly upbeat and positive and I was hoping to find out when the surgery could be done.  Then this Exocet missile came out of no-where and everything changed.   I have large b cell lymphoma and that has caused the tumour in my mouth.  I had blood tests last Thursday and I am having a CT Scan next Friday because it’s likely I have the cancer in other parts of my body too and they need to know the full extent before deciding on the course of treatment. On the following Monday I am seeing someone in the haematology department who will tell me the score.  And so my journey begins…

We are both trying to be positive and to prepare ourselves for whatever happens next, but our emotions are all over the place at the moment.

So, if you could send some love and hugs and positive energy my way I’d be ever so grateful.

Big love AJ 🙂

 

PS the image above is from a new journal I have started.

 

© Janette Gregson and ajsartjournal, 2014 unless otherwise stated. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Janette Gregson and ajsartjournal with appropriate and specific direction to the original content.