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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Wednesday 12th July Post Wimbledon/Hampton Court!

So here I am at the airport again, but this time in a much happier place mentally than previous airport 'trips'.
We have had an incredible three day adventure , starting with Hampton Court flower show, in which we had beautiful weather and in such an attractive setting too.

So much to take in and see, I can highly recommend it if you've never been before it's worth going, even if your knowledge of plants is as limited as mine !

Fortunate enough to stay with my big brother in Surrey meant that I got to see family as well, and doubly good news as in his recent genetic test he found out that he doesn't have the BRCA 2 gene, so that's him and my sister clear- a huge relief for their respective families, as well as themselves.

Heading into London on Monday to meet up briefly with my younger brother and his wife was an added bonus as they had been visiting the capital for the weekend . It's good to get some insulting banter and some giant hugs. :-)

We had decided to head over to wimbledon in the late afternoon to get some idea of 'the queue' and how it all worked. I'm glad we did. We did sit in the field and 'golf club' for nearly three hours and very nearly got it, but didn't!

However we thought we'd take a chance and got up at 5am yesterday to make sure we had a queue 'number' before 6 am, and it paid off. Centre court tickets no less, and with the rain coming in the afternoon, had I had the original court No.1 tickets we would have seen very little play.
As it was we saw three big matches on the centre court and the finishing off match from the others women's quarter finals.

All in all some fantastic tennis, with the British girl Johanna Konta winning her game in three sets, it was a very tense game to watch, but thrilling tennis.

We haven't managed to actually see my consultant at the Marsden, we were hoping to slot a quick visit in, but she did ring this morning for a telephone consultation, however it has been postponed until this afternoon as I was siting on a train heading to Gatwick I didn't really want the rest of the carriage to know my full medical history !

Those of you on face book will have been bored with all my slightly fuzzy unfocused shots of the various tennis players and beautiful gardens I have been posting over the last few days, but for those who are not, there will be more photographs in the next blog!!

I know , you can hardly contain your excitement ....

Ps. A very long meeting with Dr CM on Friday ( haematology ) lots of history discussed, bloods taken and a chest scan. Results next week hopefully .




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Thursday 5th July

As with everybody's day to day life, there are good moments and not quite so good moments, good days, bad days and then really bad days.

Monday was not a very good day, that then became a pretty rubbish day (weather excluded) quite quickly.

I am to blame, of course for part of it, the part when Steve says innocently "So, have you got the Wimbledon tickets then?" and I reply (cue puzzled, concerned face) "Oh, no... I havent".

Cutting a long story short, when I was allocated the tickets for Court No 1 on the 11th July I should have received an email asking me if i wanted them.

This was in the middle of May, and as you may remember I had a few other things on my mind, radiotherapy for one. Bex has checked my emails, and my junk and there is no email, but of course I should have followed it up but didn't.

If the tickets are not claimed by the 3rd June, you've lost them.

In short this means that although the flights are booked and we leave on Saturday we have no tickets, which probably means no Wimbledon.

BUT, we do have tickets for the Hampton Court Flower show on the Sunday, so all is not lost!

By lunchtime on Monday I took a call from my consultant to say not to panic, or to get upset etc.
 It's so hard to have to ring people up to give them bad news, news you know will make them panic and get upset, news they really don't want to hear, that nobody wants to hear, ever.

My cancer marker (the CA 125 blood test I have) has risen again- this time up to 114, not terrible news but still pretty rubbish.

Although I had an appointment at the hospital on Tuesday I never went, as I had previously spoken to KG twice more on the phone. She has been trying to get in touch with DR AG from the Marsden, and as I had had all my blood results I wouldnt have learnt anything new from a visit.

She has set a meeting up with DR CM who deals with the bone marrow test (among lots of other things) for tomorrow morning (Friday), and I guess I'll talk about the bone density scan too.

In a further conversation to KG this morning she did say that possibly due to the fact I have had recent radiotherapy and could still have inflammation which could have raised the markers, equally the Letrizole drug I have only been on for 4 weeks may not have fully started to 'work' yet.

More information hopefully tomorrow.

There are better things ahead than any we leave behind.  C S Lewis



The photos are back!!!!!!!!!!!

Engagement Party Meal  

 Had to put my dogs in somewhere!!!

 13 mile walk.... interview half way around!

Celebrating without Jack as he was at work!