Wednesday 30th August

Update

It has been decided that I will have a CT scan the week of the 11th September and a blood test for the CA125 on the same day.

The results of that will determine wether I need a PET scan or an MRI.

There was some other discussion about treatment but I'm only taking a small amount of information in at one time.
Partly because although I listen intently on the phone, and try to retain all that's said, I quite often only focus on one aspect and the rest is lost.

Either way all that matters is let's have the first scan and see what's going on, worry about the rest later.

While I'm at the bad news update I'll continue in the same vein ( no pun intended ).

Our eldest has just had his BRCA 2 results and it appears he too carries the gene.

It's good that he has been tested, at least he can insure he has regular checks.

So now for some good news?

The infamous Aunt Is once again due to visit us, arriving on Saturday for a week....
The "job" list has started and if she gets her chores done I may allow her a few swims in the sea and the odd game of tennis.

Finally ... I was utterly horrified to find out that on offering my 'windfall' apples and pears to the netball girls last night, all but one ( thanks JN!) knew what I was talking about!! They had never heard of windfall.
Too much time buying apples in plastic casing in the supermarket - sad times!

Ps, thank you for all the lovely comments and supportive messages- they really help . Xx




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26th August

Not long after I posted the last blog, I had the call from my consultant. Its always best to hope for good news, but prepare for bad.

But I wasn't really prepared.

CA 125 has now risen to 585, thats nearly as high as when I was diagnosed five years ago.

My consultant will be away on Tuesday 29th but has organised an MDT meeting with the Royal Marsden, my old oncologist Dr H (who is back and covering for Dr NB) will put my 'case' forward.

Obviously KG is pleased that I am asymptomatic, feeling and looking well, but something is definitely not right. (understatement) She feels that it's wise not to go rushing into a CT scan when an overall PET scan might well be needed, and I don't want to have two scans back to back.

I cant deny it but I was upset, the blood markers being so high really shocked me. Initially dismayed, followed by anger, quickly replaced by resignation. Did I really think I had beaten it with a little bit of radiotherapy? Wake up Jill and smell the coffee.

Supposedly I will hear from our hospital on Tuesday regarding a treatment plan. Think that DR CM ( haematology ) would like me to have Chemo, he has a point, it was very effective last time, and if I do have multiple tumours you can't exactly keep blasting radiotherapy 'lasers' at them all.

Of course, with me having myelodysplasia (low white cells) it'll be a tricky business.  I could end up worse off (with Leukemia  ) or dead. Oh I'm glad I'm not in their shoes, decisions decisions.

I'm still incredibly grateful through it all, thank goodness there is some options left,  although I feel they are becoming fewer.



“She made broken look beautiful

and strong look invincible.
She walked with the Universe
on her shoulders and made it
look like a pair of wings.”

― Ariana Dancu

My sister and two great nieces.

 Captain Cooks Monument!!

 Whitby

 Happy dog walking days...

24th/25th August 2017

Its just about midnight, and I can't sleep. I'm not even tired, actually that's not true, my body is quite tired but my brain (what little I have left) will not switch off, or even 'tone down'.

Its on full, bright, glaring  LED fluorescent 'in your face' POWER ON mode.

I had a bone density scan today, nice to have a scan thats comfortable, pain free and quick, it makes a pleasant change. Won't know the results until next week probably. Its only a baseline assessment to see where I'm at re osteoporosis. Zero would be an excellent outcome apparently, fingers crossed for that one then.

No blood results yet, although my consultant is going to ring me tomorrow ( now today) to have a chat.

This then is the major cause of my sleeplessness.

I cant help but think that the CA125 has risen again, instead of the decrease we were looking for, I fear the tumour in my neck is still there, radiotherapy only partly destroyed it, and then the 'smudge' of colour in my abdomen (shown on last CT scan in January) is yet another tumour growing.

Of course I have absolutely no proof of any of this, and tomorrow when I read this blog back I shall be thinking what a waste of time all that worrying was, the suns out, I'm walking, swimming and seeing friends, such a lovely life I lead!

But, the fact is that right here, right now I'm stressing out.

I have this fantastic iridescent, vibrant 'bubble' that surrounds me, full of good energy, positive thought, and sparkling clean oxygen, only despite its double glazed thickness there is always someone or something trying to burst it.

 In my mind I'm racing ahead into my unknown future, and not only mine, thinking often of my current friends who are in the midst of their own campaign with the disease.  The friends who are no longer here, friends I miss.

I am sorry that this post is so utterly miserable, If i wrote like this every week, even i would stop reading! I just feel that now and then I can have these 'wobbles' these moments of self pity, these times of questioning why. I am only human after all.

Just found a Winnie-the-Pooh quote...

Dont worry

"When you get a sinking feeling, don't worry, its probably because you are hungry."

I'm off to look in the fridge then.....




And so, its now 5:30pm on the 25th and as yet no phone call.

I've had a lovely day, walking dogs, swimming, circuits class, seeing my good friend and gardening, now off to play a bit of tennis.

I am going to post this blog exactly as I wrote it last night, simply because this was one of the initial reasons I started writing it.

An online diary, a way of expressing myself and making sense of the roller coaster ride that I (and family/friends) have been on over the last five years.

KBO

Blogging from Middlesbrough

Just as well I packed my ski jacket for this rather cool climate "up north" despite it being August..... :-)

Arrived this afternoon to spend the the weekend with my sister, brother in law and two of my great nieces, and maybe to have a bit of a break from island life.

I'm looking forward to seeing not only them but all their friends who have been keeping me in their thoughts and prayers over the last five years, most of whom I have never met but feel humbled by their generosity of spirit.

I feel well, and I've been told by folks that I look well ( unless they're lying!) but I won't know until the next few weeks how things really are progressing.

I had a blood test on Friday, mostly to see what the CA125 count is like, but also to check my liver and kidney function.
I've been on Letrizole since the beginning of June, with a few mild side effects, and I want to see if it really is working.

I have an appointment at Overdale on Thursday next week for a bone density scan and should be receiving results from the bone marrow test the 4th September.

As a very good friend once told me " worry does not influence outcome", but it's been difficult not to .


“Worry is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained.”
– Arthur Somers Roche

Lastly,

“Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith.”
– Henry Ward Beecher





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Summer birthday?!

I think that most folks have realised that as I haven't posted since July 27th, life must be good, and they'd be right.

My birthday fell on a Saturday this year, and I had the 'excellent' idea to go dog walking on the sand dunes, and then body surfing at St Ouen. Somehow I managed to rope quite a few friends to join me, even though it involved getting up very early in the morning ( early for some of us!) and the weather was at the very least "inclement".

I had the best birthday ever! The 'reward' for the walking/surfing exploits was a cooked breakfast/brunch at the cafe afterwards, and even that was eventful, with it raining and us being outside under a very flimsy awning!

The whole weekend was spent in birthday celebrations, spoilt with cards (over 40!) and so many lovely gifts, I really did feel very lucky.

I have had a letter from the consultant at the Marsden Dr AG, she has explained that the drug I am on 'Letrozole' takes six weeks to start working, and after three months I should have a scan and blood test to see if it has been effective.

Letrozole is used for:

Primarily treating certain kinds of breast cancer in women past menopause. It may also be used for other conditions as determined by your doctor.

Letrozole is an aromatase inhibitor. It works by reducing the total amount of estrogen produced primarily in the body. This helps to starve cancer cells by depriving them of estrogen.

I have an appointment in Jersey at the beginning of September to find out the results of the bone marrow and blood tests. 

I am still waiting for the bone density scan, not unduly concerned but it has been over two months since I finished radiotherapy. 

I have booked a few days next week to visit my sister in the UK, and i'm very much looking forward to seeing her and the rest of her extended family, but first we have 'Gorey Fete' to attend. So much hard work goes into making the fete a success, lots of volunteers give up their free time ( son included) and ALL the monies raised go to local charities. 

A few more photos to finish...

Thanks everyone x

A week in photos

 Cliff path walks... the pink ladies...

 Longueville Manor lunch to celebrate thirty years of friendship

 A PARTY!!

 Walking those dogs....

Cups of tea and chat

In the Gallery magazine!

Buy your ceramic flower at Jersey Hospice £30... they will make a display in the garden for all to see, (similar to Tower of London idea) and then after October you can go and collect your 'poppy'.

Swimming around at high tide...in seaweed!

Dem bones, Dem bones....

Monday morning I had a bone marrow test, and yes I had worked myself up into a bit of a tiz about it, and no it wasn't as bad as I thought! Im still a bit sore but nothing else, the results will take 4-6 weeks to come through .

I have an appointment at the hospital on the 4th September, although Dr CM is not expecting to see much except a few tired bone marrow cells.....charming. 

Whilst I was there he took the opportunity to give me a blood test, followed by a G-CSF injection. (G-CSF (granulocyte-colony stimulating factor.) This helps your body to make more white blood cells.) He wanted to see how my blood cells reacted to the drug, and so I went back to have another blood test Tuesday and compared results.

I started off with a white cell count of 1.8 (the lowest) and finished up at 8.2 (8.0 is the high in the 'normal' range. So at least (as we know through the chemo days) my body does respond to the injection. 

Then we chatted (actually he chatted I sat and listened trying to make sense of it ) about MDS - fair to say its not the most cheerful subject, but one that applies to me. I did a bit of research and came up with this :-

Myelodysplastic Syndromes (MDS) are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. MDS is often referred to as a “bone marrow failure disorder”. MDS is primarily a disease of the elderly (most patients are older than age 65), but MDS can affect younger patients as well. To help you better understand MDS, it might be helpful to first consider some basics about bone marrow and blood. The bone marrow functions as a factory that manufactures three kinds of blood cells: red blood cells, white blood cells, and platelets. Healthy bone marrow produces immature blood cells — called stem cells, progenitor cells, or blasts — that normally develop into mature, fully functional red blood cells, white blood cells, and platelets. In MDS, these stem cells may not mature and may accumulate in the bone marrow or they may have a shortened life span, resulting in fewer than normal mature blood cells in the circulation.

Low blood cell counts, referred to as cytopenias, are a hallmark feature of MDS and are responsible for some of the symptoms that MDS patients experience — infection, anemia, spontaneous bleeding, or easy bruising. Anemia (low red blood cell counts), neutropenia (low white blood cell counts), and thrombocytopenia (low platelet counts) are the major types of blood cell cytopenias, and are discussed below. In addition to reduced numbers of blood cells, the mature blood cells circulating in the blood may not function properly because of dysplasia. The formal definition of dysplasia is the abnormal shape and appearance, or morphology, of a cell. The prefix myelo- is from the Greek and it means marrow; so myelodysplasia refers to the abnormal shape and appearance — or morphology — of the mature blood cells. Syndromes comes from the Greek and means a set of symptoms that occur together.

Failure of the bone marrow to produce mature healthy cells is a gradual process, and therefore MDS is not necessarily a terminal disease. Some patients do succumb to the direct effects of the disease: reduced blood cell and/or reduced platelet counts may be accompanied by the loss of the body’s ability to fight infections and control bleeding. In addition, for roughly 30% of the patients diagnosed with MDS, this type of bone marrow failure syndrome will progress to acute myeloid leukemia (AML).

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WHAT CAUSES MDS?

With a few exceptions, the exact causes of MDS are unknown. Some evidence suggests that certain people are born with a tendency to develop MDS. This tendency can be thought of as a switch that is triggered by an external factor. If the external factor cannot be identified, then the disease is referred to as “primary MDS”.

Radiation and chemotherapy for cancer are among the known triggers for the development of MDS. Patients who take chemotherapy drugs or who receive radiation therapy for potentially curable cancers, such as breast or testicular cancers, Hodgkin’s disease and non-Hodgkin’s lymphoma, are at risk of developing MDS for up to 10 years following treatment. MDS that develops after use of cancer chemotherapy or radiation is called “secondary MDS” and is usually associated with multiple chromosome abnormalities in cells in the bone marrow. This type of MDS often develops rapidly into AML.

Long term exposure to certain environmental or industrial chemicals, such as benzene, can also trigger MDS. While benzene use is now highly regulated, it is not clear which other chemicals may predispose individuals to MDS, although certain occupations have been labeled “at risk” for the development of MDS or AML (e.g., painters, coal miners, embalmers). There are no known food or agricultural products that cause MDS. While alcohol consumed on a daily basis may lower red blood cell and platelet counts, alcohol does not cause MDS. There is insufficient data available to determine if smoking increases the risk of developing MDS. However, it is known that the risk of developing AML is 1.6 times greater for smokers than for non-smokers.

Patients and their families often worry that MDS might be contagious. No evidence exists to suggest that a virus causes MDS; thus, MDS cannot be transmitted to loved ones.

MDS is not inherited. In fact, it is a very rare occasion when family members, including siblings, are diagnosed with MDS.

As I said although it's fascinating ( and I've never been down a mine, just the odd pothole on a school trip) Its not the sort of information that you want to be reading about yourself. 

Good job we can't look into the future. "Most of the things in life we have no control over-but we do have a choice about how we see them"

To finish the week off nicely I have a mammogram booked in for tomorrow (good luck to whoever is on duty at the hospital- you'll need a magnifying glass) At least my chest xray came back as normal ( husband chips in that its the first time I've had a 'normal' chest). There is no fluid, which would have explained the breathlessness, which, by the way is getting better. 

The picture gallery as promised...

Surprise guest AB!!

St Catherine's 

The two B's...

My future daughter-in-law and her sister

The happy couple

Engagement party!

Hampton Court Flower Show!

Special BOYS

 In the Wimbledon queue!

 Centre court wrist band!!!

 Practice court warm ups!

 Radio earpieces, plugged in ready to go!

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