Not A Good Start To The Week

Wish I could say the week started well but it did not.  Firstly, I had a slight panic on the way to the hospital.  That was to be expected as there had been break away from treatment. I coped with that and was o.k. by the time we arrived.

No, the problems came in an unexpected way.  For the first time I got a very unfriendly radiotherapy team.  Obviously staff do change shifts and you cannot see the same people all the time.  However, up until now they have all been lovely.  Not today.  One of them did speak to me when I walked into the room.  She asked how I was and I had told her I had been panicky on the way there.  She asked why. I told her about my agoraphobia (there should have been no need because it is stated clearly on my records).  She then said that, no doubt, I found the room daunting then, being on the large side.  ????  I had to explain to her it was not claustrophobia but agoraphobia.  She then asked me what that was!  I mean these are medically qualified people.  The other two just glared at me all the time. I do not think she understood even after I had explained it.

Then it was onto the table.  I knew immediately something was wrong.  I could find no place to rest my head.  I told them I could not lay like that, it was impossible.  They told me I had to.  I tried again, still could not do it.  I insisted that something was different, they argued everything was set up perfectly.  I tried a third time - useless.  Eventually one of them said well we could try you with a headrest!  Yes, they had forgotten to put the headrest on the table.  I was so angry.  I told them I always had a headrest and that was clearly stated on my radiotherapy calculations.  The man argued that it was not, I argued it was. He still argued.  He eventually did go back and check and then came out and told the others "yes, she does have to have a headrest" but absolutely no apology was given to me.

They then proceeded to argue amonst themselves over the setting of the machine, kept insisting I was not lying in the correct position.  Rubbish.  The bickering went on.  I spoke up and asked why it was all taking so long.  They told me I was being impatient.  By this time I was nearly in tears.  I could feel the panic rising.  However, I did get through the treatment.  Nobody helped me off the table, they all just walked away.  No query as to whether I was o.k. no goodbye, nothing.  The most miserable and disagreeable bunch I have come across so far.

I will be honest with you.  I left the hospital and promptly burst into tears and cried all the way home.  My confidence is fragile and it only takes a small setback to rock my boat.  You do not expect professionals to get things wrong, to argue amongst themselves and act as if you were not there.  This is my life we are talking about.

Now it is going to make it so much harder for me to face it tomorrow as the memory of one bad experience is enough to linger in the mind and cause fear that the same thing could happen again.  Luckily tomorrow I am in Linac 5 and there will be different people but on Wednesday I shall be back with the same group I had today. God give me strength!  I cannot tell you how this experience has upset me.

So, my friends, extra prayers that tomorrow will be much easier.  I still feel panicky over it although I am now safely home.  I certainly did not need this.  Thankfully, after Wednesday, all my treatments will be on Linac 5 where the people tend to be so very nice.  Still going to be hard now going tomorrow though. Good experiences build you up, strengthen your confidence and your optimism.  Bad experiences have just the opposite effect and, particularly for me, make me fearful.

It rained all day yesterday and the trees were almost bending double with the wind.  It was so black it was like evening. Today it is raining on and off and very overcast. Still, no doubt we shall be moaning about the heat in the near future.

I would personally like to thank the following friends and neighbours for sponsoring our journal friend, Jules, in the Race For Life. Their kindness has truly touched my heart because this race is so special to me this year.

Brenda and Phil - I have known Brenda since we were eleven.
Ron, Jackie and family - friends
Patricia - she knows me though this journal.
Vera - a neighbour - she is 91 years old.
Charlie & John - neighbours
John & Betty - neighbours
Joanne - friend
Bob - neighbour
Margaret - neighbour
Paul - neighbour
Peter & Josephine - friends
Eric - my late friend Christine's husband.
Penny - friend
Elainey2465 - journaller and friend.

We are now just £7 short of the £300 mark.  Wonderful. Have the feeling we will get to that mark and pass it before the race at the end of June.  For anyone still wishing to sponsor, here is the link again

Race for Life - help us make more people survive

Now I think a cup of tea is in order and I shall enjoy that whilst reading the newspaper.

Love

DONE AND DUSTED

When this week started  - on Tuesday for us Brits, I seemed to face a mountain I could not climb.  Six appointments in four days.  Well, I did it.  The Good Lord saw me through.  It is behind me now.  Last treatment for this week completed and home again.  That is the end of the second week of radiotherapy - 7 treatments received, 14 more to go so I am a third the way through the course.  Mind you, I simply cannot tell you how tired I feel.  My body feels like a lead weight that I can hardly drag around.  Some of it is the sheer physical effort of getting there, some of it is now the tiredness from radiotherapy.  I hate feeling like this.  Even my brain seems to have slowed and got muddled.  Yesterday when discussing the situation over here I kept calling Tony Blair Tony Bush or George Blair.  Mental and physical exhaustion. It was to be expected but I am not happy about it.

Every afternoon I take myself to bed and sleep for about three hours.  Thankfully I now have a two day break before it all kicks off again on Monday.

Some of you have been through radiotherapy, many of you have not so I managed to take a couple of pictures of the contraption I have to lie on so you can see for yourselves.

This first one shows the room in general and you will see electrodes hanging down from the ceiling like the strings of a jellyfish and one of the two computer monitors that keeps track of everything.

This second one shows the table I have to lie on and the radiotherapy machine behind it. There is an arm coming out from the big green circle with something that looks like a big bowl on the end of it.  When I am on the table and all calculations have been double checked, the table is raised and turned so that it lies on the flat board under that large arm.  The the big bowl descends and then rotates onto its side and the radiotherapy comes from there.  Then the whole thingswings around to the other side and the treatment is repeated.  You can see the table I have to lie on. Believe me when I tell you  it is very hard on the back, especially the upper back.

Lastly a closer view of the table.  You can see the hard plastic headrest and the cuffs where I have to place my left arm up alongside my head.  Obviously you have to stay perfectly still, you cannot sneeze, scratch your nose or even move the other arm which is down by the side of you.  Any slight movement can mean the radiotherapy can be off the mark. When all is ready, the radiographers leave the room a buzzer sounds and a red light comes on to show treatment is in progress.  This happens three of four times with the radiographers coming in between each "zapping" to re-check again all the calculations and the table position as the table has to be swung around. 

I am grateful to the staff for allowing me to take these photos to share with you.  Neither of them wanted to be in the picture, both hate having their photos taken even by family. Many people do. 

On the way home I did manage to stop at a little garden centre where they have a shop.  It is more of a big garden shed but they have all sorts in there, candles, plant pots, all sorts of decorative objects, garden ornaments and lovely wooden bowls and figures made by a local craftsman.  I did have to hold tightly onto Becky because my legs felt like jelly.  However, I did manage it and they had a sale on.  I got a lovely photo frame for under £2, a decorative small glass bowl for burning a candle in for £1 and a very pretty topiary tree made out of dried flowers which I now have in the middle of my mantlepiece.  It looks so nice and I felt that I was entitled to treat myself.

The dogs and Leo do not know what is going on with my disappearing every morning, the dogs in particular were so used to my be being indoors all the time.  However, they are being very good.  Leo is in for a little shock late this afternoon.  He has an appointment at the vets for his jab.  He is not going to be ahappy little kitten! I can hardly wait to see his reaction when he ventures into the garden for the first time although that will not be for a while yet.  He is bound to fall in the pond at some stage but to try and stop this happening  I might dip his feet in it, cats do not like that and he will realise that he should keep clear.

Well, that is all my news. I would like to thank Kathy (Yada, Yada, Yada) for the lovely card that arrived from California this morning, the picture on the front made me smile and the message she had written was lovely. Big hugs to you my dear friend.

We have a pile of washing in the machine but it is going to rain so we will have to decorate the house with it.  All the housework is way behind so I am glad we do not get a lot of visitors.  Still, all that can wait.   Treatment comes first.  Housework will always be there.

I am going to spend a very quiet weekend, sleeping quite a bit, listening to my talking books and doing as little as possible to build up my strength for next week.

I wish each and every one of you a lovely weekend.  Take care everyone and God bless you.

*P.S. Just wanted to say that Julie has now been sponsored for  £246 - can we make it £300?  in the Race For Life that she will be competing in at the end of June.  Way to go Jules!!!  If anyone would still like to sponsor then please visit  this link -  Race for Life - help us make more people survive

Love

BC AND ME - UPDATE

I said I would share my journey so I have decided to update you today with all the recent goings on.  When I went for radiotherapy last Friday, athough I managed it, it was the hardest trip I had made to the hospital.  My anxiety levels have rocketed.  I cried going there, I cried in the radiotherapy room.  The nurse asked why and I told her how my anxiety had seemed to increase greatly, how much harder the journey was when I had been getting used to it, the continual night sweats, feeling hot all the time.  She immediately said it was hormonal due to the Tamoxifen and I needed to see my oncologist to let her know what was going on.  You will remember that I was not best pleased with my oncologist on the first occasion I ever met her, how little time she gave me etc. etc.

So, last Friday the nurse booked me in to see the oncologist today.  You can imagine that my weekend was not exactly relaxing.  Not only did I have the memory of Friday and all the tears and panic from then hanging over my head, now I faced a double appointment today and one with the oncologist!

I am glad to say that I did do the journey this afternoon even though I felt rough and that I did not cry.  I sat calmly in the waiting room chatting to two very nice ladies who were both having the same treatment as me, although one had had chemotherapy and the other was not taking any medication at all.  I was soon called in and luckily I did not cry as soon as I got in the room.  I did have a moment of panic halfway through the treatment but I told the radiographer and she told me to take some deep breaths before they continued, only one more dose on the other side of the breast and I was finished.  So that went o.k.

Then I had to go to a different part of the hospital to wait to see Dr. R. my oncologist.  It was packed.  When I looked at the condition of some of the patients, I felt ashamed at how anxious I am and get.  Anyway, by a stroke of luck my friend Joanne was there (we met in the hospital) so I was able to have a natterwith her to pass the time.  Then I was called.  Whew, what a relief.  Dr. R. was very nice this time, I must have got her on a bad day last time. 

She immediately agreed it was my hormones causing the rise in my anxiety levels.  She said it does take time and it varies greatly from patient to patient before the body settles down and accepts it.  Both Mike and Becky told her how much worse I had been since starting them.  So she discussed it fully.  She has asked me to keep on them (the Tamoxifen) for at least another week or two because she still feels that overall it is the best drug for me.  She said that if I insisted then she would be prepared to switch medication..........but...... the other tablet they use causes joint pain and she knows that I have arthritis in my neck, shoulder, badly in my lower back and to a lesser extent in my knees.  Worse than that, it causes osteoporosis and she has had patients develop osteoporosis during their treatment. It would also mean going for regular bone density scans.  She feels that I have enough problems with my diabetes, high blood pressure, agoraphobia, general anxiety and cancer treatment without having to shoulder osteoporosis and all that goes with it.

Although she can be brusque, I have been told by many many people, patients, nurses, radiographers that she is the top of her field, she has so many letters after her name you would not believe.  That she is highly regarded in the medical profession and knows exactly what she is doing.  Who am I to argue with somebody like that?  If she feels I should give it longer, then I shall give it longer and hope that my body does adjust and as quickly as possible. I have a cousin with osteoporosis and I have lost count of the number of times she has broken bones in all parts of her body.  Tamoxifen, on the other hand strengthens bone. Dr. R. also suggested taking the Tamoxifen in the morning rather than at night.  That might help with the night sweats and allow me to sleep better because lack of sleep is wearing me out.

Dr. R. also answered other questions I had about radiotheraphy, about breast shrinkage.  If there is a lot of shrinkage then I do not need to resort to tissues, the hospital will supply me with a cup to wearinside my bra.  She also agreed to my using Aloe Vera Gel if I found it more beneficial. 

She also said that with my agoraphobia, the whole team were worried that I would not turn up at all for my appointments, so I am doing very well in the circumstances with the added side-effects of the tablets and I should congratulate myself on that.  Well, I think it is still early days, I will wait to congratulate myself in another couple of weeks.

So, that is today's double appointment behind me.  I have another one tomorrow. Morning this time, the first one being radiotherapy and the second going back on the simulator.  Apparently at the moment they are treating the whole breast but I need to have eight booster sessions where the cancer actually was, including the one that was on the outside of my breast.  So they need to re-check all the calculations to make certain they get the right spot and no errors are made.

Like I said, it is not easy getting there now with my hormones all over the place and my anxiety levels up.  Such a shame because I had started to do the journey quite well.

I know you will continue to pray that I will adapt to the Tamoxifen and the side effects will lessen because I do not even want to think of that alternative drug now.

On a lighter note, does anyone know why the wind drives cats and kittens bonkers?  We have had high winds for the last couple of days and Leo has been dashing from room to room like a thing possessed, back and forth, back and forth and being really naughty as well, hanging on the curtains, running up our legs with his claws out - ouch! and chewing everything in site.  When the wind drops he is his usual placid self.

I cannot believe it is a quarter to six.  I hate afternoon appointments because it seems in no time you are back on your way to the hospital hardly having had time to draw breath.  Still every appointment is one less. Soldier on, Jeannette, soldier on.

Now I am off to eat, watch the news and relax.  Oh, I have turned alerts off.  This is a heavy week for me and by Friday I have been told the tiredness from radiotherapy will probably start to kick in.  I know you will understand and that you know that as soon as I am able, I will be back reading and commenting on your journals.

God bless you all.  I know you will keep the prayers and good wishes coming.  Knowing you are all behind me is such a great help.

Love

LEO

I promised you a short video of Leo playing and it is very short running at only around 48 seconds.  He is like a whirlwind now he has settled down.  He loves to run up the canopy above my bed!  However, when I go for a lie down he always curls up either in my arms or on the pillow next to me. Firstly here are a couple of photos of him taken yesterday.

Before I post the video, my long term readers will remember that last year we planted a Rowan tree in the front garden.  Well, it was more of a twig really with just a couple of thin weedy stems.  No chance of any blossom last year.  Look how it has come on.  We should get a lovely crop of red berries in the Autumn.

Now for the short video of our crazy kitten

P.S. If the video says  "image coming soon", ignore it, it will play anyway or at least it does for me.

Three radiotherapy sessions down, twenty to go plus next week not only four treatments but also a consultation with my oncologist about the medication and another visit to the simulator to get everything  re-checked.  I am pooped already. At least I have three days to relax because Monday is a bank holiday.  But that means six appointments in four days next week. I have also been told that by the end of next week the tiredness from radio should start kicking in.  Oh joy.

My poor boob does get bright red from the treatment but I am looking after it as instructed and it is not too sore. I was warned that my boob might shrink.  Just think of that. Imagine having one sized 44c and the other sized 42a, the mind boggles!  I shall have to resort to tissues like I did when a teenager lol

 I shall be so glad when my last radiotherapy session is over and I can have my life back. At the moment it is owned by the hospital.

Well,  I hope you have enjoyed the pictures and video of Leo.  Have a great weekend everyone and once again, many thanks for your support and your love.  God bless you.

Thanks Everyone

Thanks for the comments to my previous entry.  I have now ordered some Aloe Vera Gel from Holland and Barratt online because they said they endeavour to deliver within 48 hours.  It was only after I placed the order that I got their confirmation saying "please allow  10-14 working days".  Oh well, I shall have to send Mike into one of their shops at the weekend because I will not be able to wait that long.

Going to be up to my knees in Aloe Vera lol

Thanks again dear friends.

*An important P.S.  Trish has asked me to thank all of you who left such kind comments about her.  She is the lady who sent me the flowers.  Trish, I am happy to pass on your thanks.

Can You Help With Cream

I am hoping the person concerned will read this.  Somebody either commented or e-mailed me telling me that a certain type of Aloe Vera cream was better than the Aqueous Cream issued by the hospital.  I cannot find the comment and yesterday I cleaned out my mail boxes without thinking.

Whoever, you were, kind friend, can you let me know again the name of the cream and where it is available to buy.

Thank you so much.

One treatment down - 22 to go. Sighs.

FOR TRISH

I just had to come back today and do this special posting for somebody who has done a special act of kindness for me.

This beautiful bouquet of flowers arrived this morning.  Mike took them in and assumed it was something to do with the recent nasty business I do not even want to think about.

But no, I was amazed when I read the card attached.  These flowers were sent to me by Trish.

Trish does not have a journal of her own and is not a regular commentor on mine, just once in a while.  I have never met this lovely lady, we have never spoken on the telephone. We did exchange cards for the first time last Christmas but, apart from that, we are virtually strangers.   I know her only as an occasional screen-name, yet she made this wonderful gesture to me.

There are so many good, kind, loving and genuine people in the world and, Trish, you are certainly one of them.  Thank you from the bottom of my heart for your caring act in sending these to me.  I shall keep the photo always.

I just wanted this lady to know how much this has meant to me, so much that I wanted to share it with everyone.  God bless you Trish, God bless you.