Clinic Visit

I had my visit to the breast clinic this morning.  I found it much harder going after the fiasco of last week.  Shed quite a few tears before I left.  Anyway, I managed to do it and get through the thirty-five minute wait but came home with few answers.

For the last three days I have been getting a bright red area that starts in my armpit and spreading onto the left side of my breast, several inches across.  The district nurse yesterday thought it might be an infection so she was pleased I was attending the clinic this morning.  Now this redness comes and goes.  It will be there for a few hours and then fade away to almost nothing.  So to be sure Caspar knew what I was talking about, Mike took a couple of photos late yesterday afternoon.  I also wanted to find out about the lump under my armpit and whether it was fluid, perhaps infected fluid and needed draining and antibiotics.

To cut a long story short Caspar has no idea what is causing the redness.  He studied the photos.  He studied me, he could see it was still slightly pink.  He said it could be caused by my clothes rubbing again flesh that was still tender.  I pointed out that yesterday afternoon I went to bed for two hours, I was not wearing clothes, the window was open and my scarred body received lots of fresh air, yet when I woke it was bright red!!! Nothing could have rubbed. He said well, it is definitely not infection as there is no swelling and I am not running a temperature.  Trust me to have something mysterious.

Anyway he poked and prodded, said there was no problem whatever with the wound, it had healed remarkably well.  The lump under my armpit is not fluid, it is hard.  I think it is something he called the axilla, in other words it has been disturbed by the surgery and might be like that permanently.

I then mentioned the amount of pain I am getting.  He said it could be the nerves trying to recover from the surgery and that some women were more sensitive than others and with the passing of time it should lessen and lessen.  Well, he should try living with it.

So, all in all, no infection, no reason found for the redness, the pain will just have to be borne for the foreseeable future.  I told him how worrying I find this redness and pain but he assured me again and again there he can find absolutely no problems.  As he is a top man in his field I have to accept that.

Lastly, it has been decided, after a few days of discussion, that despite my family history that Tamoxifen is the drug they want me to be on.  I fully discussed my family history which is mainly on the male side and involved furring of the arteries as the biggest problem.  I was told what they worried about was break-away blood clots which is different.  This only happened to one member of my family, again a male.  They then said that although possible side effects have to be printed on leaflets, the chances of anything bad happening are exceedingly small and the good effects have to be weighed against the bad.  I could see the sense in that.  After all, the last thing I want is the cancer returning. I want to be rid of it forever.

So, I have had to accept their decision.  I think taking any drugs worries me, I do not even like being on all the ones I already have to take.  But I must get on with it.

The two side effects most common and that I am likely to get are nausea and hot flushes and sweats.  Oh God, I thought I had seen the last of them years ago!!!  I hope I do not develop the nausea either because next week I have to go for my radiotherapy assessment (Wednesday afternoon) and the following week I start the course of radiotherapy.  Bad enough having to get there every day without feeling constantly sick as well.

So, my friends, that is all my up to date news on me and bc.  I know you will continue to pray for me.  I ask you to pray that the side-effects of the tablets are as little as possible because nothing must get in the way of my radiotherapy.

Oh, one last thing.  One of the district nurses chatted about my blood sugars last week andagreed they could not stay as high as they have been/are in the long term.  She told me to stop taking readings over Easter to give myself a break and stress pushes them higher.  She kindly phoned the diabetic nurse at my surgery and had a long chat with her .  Kim, the diabetic nurse agreed that I should not take them over Easter and that she would phone me to have a chat and possibly arrange to see me and assess whether there should be an increase in my diabetic meds if necessary and that it would be on Tuesday or Wednesday.  Guess what, as if you haven't already.  I have not heard a single word from the diabetic nurse.  Guess I have been forgotten about.  So, I will have to try and make an appointment to see her next week.  More aggro.

I just wish things would run smoothly in my life just once in a while.

I have some new photos of Nathan and Daniel.  I will share those with you next time.

Love

Tuesday - Video Entry

We had a very quiet Easter.  Saw the family on Easter Sunday and Nathan and Daniel loved their Thomas the Tank Engine Eggs.

I did manage to sit in the sun for a little while but did not overdo it.

I have phoned the clinic this morning and spoken to my cancer nurse who was in on the meeting to discuss the right medication for me.  She did confirm that my agoraphobia, diabetes and high blood pressure were discussed but my family history was not.  In the circumstances, she is going to speak to Caspar about the situation.  He could refer it on to my oncologist for further discussion.  Of course, they could still come down on this being the right medication for me and if so, there is nothing I can do.  I have to take it and trust that it will do more good than harm.  She did say that I had done the right thing in ringing her as all circumstances have to be taken into consideration.  She will be ringing me back at some point so right now I am playing the waiting game.

I thought I would share a little video with you today.  Our collies just love water but Jack is the worst of the two and always wants to be in it.  He will jump into the bath expecting to get washed at the drop of a hat!

The covers are still over the pond because this early in the year the Herons are still about. We have one that visits regularly and sits in the tree in the neighbouring garden waiting his chance.  So the pond does not look at its best but had the covers been off we would not have been able to take this video of Jack up to his antics.

So, sit back for a couple of minutes and enjoy.

YouTube seems to be having some problems. If you get the message "Coming Soon" still click on it, it will work.

I hope you all had a Happy Easter and I wish you all a great week.

He Is Risen, He Lives!

This man went unto Pilate and begged the body of Jesus. And he took it down and wrapped it in linen and laid it in a sepulchre that was hewn in stone, wherein never man before was laid.

And that day was the preparation and the sabbath drew on.

And the women also, which came with him from Galilee, followed after, and beheld the sepulchre and how his body was laid.

And they returned and prepared spices and ointments: and rested the sabbath day according to the commandment.

Now upon the first day of the week, very early in the morning, they came unto the sepulchre bringing the spices which they had prepared and certain others with them.

And they found the stone rolled away from the sepulchre.

And they entered in and found not the body of the Lord Jesus.

And it came to pass, as they were much perplexed thereabout, behold, two men stood by them in shining garments:

And as they were afraid and bowed down their faces to the earth, they said unto them "Why seek ye the living among the dead?"

"He is not here, but is risen: remember how he spake unto you when he was yet in Galilee"

Saying, "The son of man must be delivered into the hands of sinful men and be crucified and the third day rise again."

And they remembered His words.

God bless you and your families not just on this Holy Day but each and every day for always.

May You Have A Blessed Easter

Wishing each and every one of you a blessed and Happy Easter.

Behind all the hype that goes with this festival today, let us not forget the true meaning of this time and hold it in our hearts.

That Christ laid down his life for each and everyone of us and rose again in glory on the third day. We should always be mindful of that and remember that He is with us always. Prayer is very powerful and can and does work miracles.

May His love descend upon you all this Easter and always

To Answer Some Of Your Comments

To answer a couple of your queries regarding my entry of earlier today.

No, this lady cannot be reported.  She was not actually rude other than the fact she mainly ignored me and was not sympathetic to my particular circumstances and gave me further things to worry about.  She is the Boss, Caspar has not authority over her, he is just the surgeon.

No, I cannot go to A and E.  They will not deal with the fluid build up because I am already being treated by the cancer unit.

One last thing has me very worried indeed.  I was told by Caspar that she would discuss with me the very best anti-cancer drug to put me on.  She never discussed anything with me.  Just wrote out a prescription for Tamoxifen.  Now, I know this is a common drug to use for hormone fuelled cancer like mine.  However, I did make it clear when I first saw Caspar that there is a history of thrombosis in my family.  He passed all this information on to Dr. Robinson, now I wonder whether she bothered to fully read it. My brother has had his veins done, the other brother died of thrombosis, my father had his veins done and suffered two coronary heart attacks.  All his brothers died of blood clots and my own mother suffered a series of strokes before her death.   I also have high blood pressure.  The leaflet on Tamoxifen says that the risk of deep vein thrombosis is increased on this drug and also the likelihood of strokes especially if you have high blood pressure!  None of this was discussed with me at all, I was not given the option of an alternative drug.  I am not going to start them now until next week.  I want to speak to my cancer nurse first and tell her how worried I am about this.

A Downer

Well, I wish I could tell you I came home happy and relieved from my appointment but that is not the case.

Firstly, less than twenty-four hours after the fluid was drained, yesterday it started building up again.  As I had my appointment today I phoned the clinic yesterday afternoon to tell them and I was told it would be arranged for it to be drained again whilst I was there today.  So far so good.

I did the journey well.  We get to the breast clinic.  Immediately I am told they are running an hour behind.  Well, I coped with that, especially as I knew I was going to have the fluid drained which would use up some of that time.

Caspar and his team were not on duty today so I am called in to see a different doctor.  She had a look and agreed it was fluid building again.  However she then said she was not prepared to drain it.  I asked why and she said because of the risk of infection.  I pointed out that needles are sterile and there should be no more risk than there was on Tuesday.  She was adamant that she would do nothing and told me to get painkillers from my pharmacy.  I have been living on those bloody things.  They did make me another appointment to see Caspar next Thursday, the Thursday AFTER Easter which is over a week away and he would probably drain it for me.  It could be the size of a bloody football by that time.  As you know there is nobody that can deal with things like this over the Easter break.

So back into the waiting room.  I did bump into my friend Joanne who was in hospital at the same time and had also been in to see this Dr. Robinson. Dr.Robinson needed to be a very important and very special in my life as she has charge of me for the next several weeks.  She is my oncologist. A Cancer patient needs a very good rapport and trust in their oncologist.  My next proper appointment to see Caspar is not until October.  Everyone that was going in was spending 30 to 40 minutes with her.  Joanne and her Mum chatted for a time and then had to leave.  Then the nurse came up to me and said there would be another 45 minute delay.  My nerves were getting to breaking point, the place was emptying out.  People who had come in long after me were leaving and still we sat there.  Came down to just three people waiting so I assumed I would be called fairly soon now.

The nurse came back and said there would be another 45 minute delay.  Thatdid it.  I broke.  I just could not take it. Firstly they had refused to drain the lump and we had been waiting for well over two hours.  I told them I would come back another time, it was way beyond lunchtime, I was diabetic and needed to eat, I had had enough.  They offered me a sweet biscuit!!  I started to cry.  In the end they let me go into a little sitting room where they made me a cup of tea.

Never mind said Mike and Becky, you will be in soon and you can put all the questions to her that you need to ask.  You have got this far and waited this long so get it over with. Caspar had told me that he had discussed my case fully with her, told her I was agoraphobic and suffered from anxiety and panic attacks, she had agreed with him that she would tailor radiotherapy to fit my particular needs (probably not every single day). He told me she was fully informed and would be sympathetic and understanding.

The district nurse who came yesterday agreed my blood sugars were much higher than they should be so I wanted to discuss this with her also on the nurse's advice.

Eventually we are called in.  There she sat with a plate of jam tarts in front of her.  She put a leaflet in front of me and told me all the things that Caspar had already told me, about it being stage two, the lymph nodes not being affected.  She could see I was highly nervous and had been crying so I had expected her to put me at my ease.  The next thing she tells me is that because I had the cancerous lump on the outside of my breast as well, there is a possibility the cancer could return!  Then she tells me it will be four weeks of radiotherapy every day and absolutely no discussion about it and got me to sign the consent form. 

She then tells me that radiotherapy itself could cause the cancer to return in the affected breast.  She asked how painful my chest and breast were and I said at times very painful indeed.  She then said it was because they cut the nerves in my armpits and also in my breast and went on to say that some women never lose this pain and have it for the rest of their lives.  This is all said to someone who suffers from chronic anxiety and she could see I had already been crying.  She wrote out a prescription for the anti-cancer pills which she said I can start next Tuesday in case of any clashes with other pills or bad side effects, best to get Easter out of the way first.

She never looked at me, she spent more time talking to Becky asking how old the boys were and whether they were getting many Easter eggs!!!!  Mike was not even acknowledged or spoken to.  I got the strong feeling that she does not like people who suffer with "nerves".

I was not given the opportunity to discuss whether there was the possibility of any clashes with my other medication or that I was worried about the rise in my blood sugars.  She never looked at the wounds, one of which has not completely healed. She ignored me when I said I had a fluid swelling again. She never mentioned my problems about getting to radiotherapy on a daily basis.  She closed my file, stood up, wished us a happy Easter and that was that. She did say, as we were on the way out, that I would get an appointment for my assessment for radiotherapy in the post but could not say when. We were given about eight minutes of her time. 

I cried all the way home.  I am still crying from time to time.

I got no reassurance, no understanding, was not given time to ask questions that needed to be asked, was frightened by being told the cancer could return as one of the growths had been outside.  This has pushed me right back.

Now I face Easter with the ever growing swelling, the thought in my mind that the cancer could return, not knowing when my assessment will be.  I am not happy, I am not happy at all.

Why I have I decided to write about it?  I promised to share my journey with you and that includes the bad as well as the good.  It is therapy in letting some of it out in writing about it.  However, the peace of mind I had hoped to return with, the understanding I expected to get which would make me feel easier about my coming assessment and radiotherapy treatment did not materialize.  I feel as though I have been hammered into the floor.

So we left here at 10.10 a.m. and returned well after 1 p.m. and to me, the wholething was a complete waste of time.  All that was achieved was that I signed the consent form and was given further things to worry about.

Sorry this has not been a happy entry.  There is nothing I can do except get on with it but right at this moment, I wish I had never gone to that bloody appointment this morning.

My Results

You can imagine I was very scared inside (I tried not to show it for the family's sake)  going back this morning although I did try and take in the beautiful sunshine and the spring flowers.  The usual hassle to find a parking space.  It was not helped because although there was hardly anyone in the clinic there was a wait of over 40 minutes, it seemed like 40 hours.

Firstly, what a relief when my surgeon drained the fluid from under my arm.  Of course, being the joker he is he remarked how clear it was and looking at the large syringe he said he could read a paper through it.  I told him it looked more like urine to me and he replied it was more like Lambrusco.  That is a wine I shall never drink again.

I got a bit of a shock at first when he mentioned the sebaceous cyst I first went to the clinic with.  He himself had agreed it was a sebaceous cyst but prior to surgery when I was asleep, he had a good feel around and found a smaller lump next to it.  This made him suspicious so he actually cut out the whole of that and went straight through behind it to find the main tumour.  When it was all checked at the lab it was found that the cyst on the outside of my breast had been cancer as well.  What a good job I had such a brilliant surgeon who left nothing to chance.  A cancer growing on the outside of the skin that is not caused by exposure to sun is quite rare.  But it is gone now so I am not going to think about that anymore.

Then it was the results.  My cancer was stage two which is fairly normal.  Very few people present with stage one cancer.  The great thing is that my lymph nodes were CLEAR none of them showed any signs of cancer.  This means NO chemotherapy and no radiotherapy on my underarm.  He still puts my chances of complete recovery at 90 per cent and was very happy for me.  To be honest I am still trying to take it in.  My family and I have prayed so hard.  Mike and I prayed together before we left this morning and we certainly gave thanks when we returned home.  I have had so much prayer through the computer.  Prayer is a very powerful tool and can and does work wonders.

Of course, I still have a long way to go.  I have to go back on Wednesday, day after tomorrow, for a meeting with my oncologist/radiotherapist.  She will be a stranger to me and I can only hope she will be as understanding of my agoraphobia and anxiety as my surgeon was.  She will discuss what anti-cancer drugs I will be on, how much radiation I shall need on my breast and for how long. It can be anything from three to six weeks and whether it needs to be on a daily basis or less.  I have my appointment at 10.45 a.m. on Wednesday so I know you will continue to send out prayer and positive thoughts for me.  It is very important that I get on well with this lady because she will play a big part in my life for some time.

To tell you I feel shattered is an understatement. With all the trauma of last Friday (I did report him) and being in pain over the weekend and then this morning not knowing what I was going to hear, I feel like I could sleep for a week! However, I have the district nurse coming in again tomorrow and then the clinic again on Wednesday.

I think the thing I am dreading now is the assessment, where they locate the exact place to shoot the radiation, mark out the exact area, find the best position for you and tatoo your breast.  I always fancied a tatoo but not in these circumstances.  They will be little black dots apparently.  I would have preferred a rose or a butterfly! The whole thing takes about forty minutes and nobody will be allowed to come in with me.  I have not got the appointment for that yet, will probably get it on Wednesday.  But I have coped so far, I am lucky my results have been so positive.  I will deal with that as it comes.

Now I am going to have a cup of tea and then shut my eyes for a while.  This has been such a stressful few weeks and so out-of-the-blue.

I wanted to leave you with a couple of photos.

Here I am with the wonderful Caspar, my surgeon who has done a marvellous job and with his compassion and humour has made things such much easier for me. I wish he was able to continue with the rest of my treatment as I trust him implicitly and we have a great relationship. Alas that cannot be.  I will see him again in six months when radiotherapy will all be behind me.

Secondly with Laura, my lovely cancer nurse and consultant.  I can ring her with any worries and problems that I might have and she is there to help me through.  God bless these wonderful people.  So dedicated, so caring.

I asked their permission first, of course.  When I told them I was sharing my journey through cancer to recovery in my online journal in the hope that it might help just one person, they were only too happy to consent.

I could not have received better news and coming in this Easter week when we remember the sacrifice Christ made for us all  on the cross and then the joy of his resurrection, it has made it extra special.

Once again I thank you for your love and support.  I know you will be behind me at my appointment on Wednesday when I go to discuss my further treatment and also when I go for my assessment (a separate appointment) and then when I begin my radiotherapy.

Have a wonderful week everyone and God bless you all.