I Just Want To Cry, Why Does This Have To Be So Hard?

It is seven days since I last posted, days which have been potentially among the most stressful of my life.

This post is mostly about TIA (Transient Ischaemic Attack or Mini Stroke), the subject has rather taken over from my breast cancer over the last few days and has had a massive impact on how I am feeling both physically and emotionally.

Sunday, there is no change with Ray, he still has pain in his neck and head and his tongue is still not working on the left side. I have insisted that we are going back to the Doctors on Monday.

Dr Hussain completed the same checks on Ray as he had with Dr Firth on Thursday morning, but the tongue semi-paralysis didn’t start until the Thursday afternoon so he looked carefully at Ray’s mouth and tongue. Dr Hussain was concerned about this development and phoned the CSRU (Cardiac and Stroke Receiving Unit) at Wycombe Hospital asking for Ray to been seen urgently. Ray and I went home to wait for the call. Mid-afternoon Ray had just made us both a coffee and the phone rang, it was the hospital asking us to come in straight away, and so we abandoned our drinks and set off.

Ray was checked thoroughly by the nurses and doctors, had an ECG and a CT (Computerised Tomography) Scan of his head. His symptoms are very unusual apparently, so there have been lots of different doctors asking what happened and when. They decided that Ray had probably had a TIA (Transient Ischaemic Attack or Mini Stroke) and that the best course of action was to have an MRI (Magnetic Resonance Imaging) Scan to confirm it, but the Radiographers had left for the evening, so we were asked to come back again the next day.

Ray were at Wycombe Hospital all day again on Tuesday, we started at the TIA Clinic and were then taken to the Radiography Department for the MRI Scan. After a short wait Ray was asked to remove anything containing metal and was taken off for his scan. He wasn’t gone very long before one of the Radiographers came to say he had finished, but when I walked round to meet him he was in a terrible state. Ray gets claustrophobia but is normally very good at keeping it under control, the MRI Scanner was just too much for him, and as Ray had a panic attack the procedure had to be stopped. So when Ray felt well enough we were taken back to the TIA Clinic.

So the only other option was to send Ray for a CT Contrast Scan, this would be to identify any breaks or blockages in the veins in his head and neck. The contrast scan uses Iodine-based Contrast Material given by injection into a vein (intravenously), contrast agent is used to enhance the images produced by CT scans.

Whilst waiting, I sat and read my book, it gradually occurred to me that the scan seemed to be taking a long time. Then one of the Radiotherapy staff came and asked me to come through as the Radiotherapy Department Doctor would like to speak to me. I was taken to an office where the Doctor explained that Ray had an adverse reaction to the Iodine Contrast Material and had suffered an anaphylactic shock (a severe, potentially life-threatening allergic reaction). But was now stable after receiving IV antihistamines and steroids and would be on close observations for the next eight hours. I was stunned, the Doctor asked if I had any questions and I had no idea what to say. I was allowed in to see Ray, he looked terrible, he was on oxygen, his eyes were red, they looked like he had a bad case of conjunctivitis, and his eyelids were very puffy like he had been punched in both eyes. Ray’s skin was all red and he was very hot to the touch. Apparently his blood pressure and oxygen levels had dropped dangerously low he had a rapid, weak pulse and had vomited.

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Ray remembers that as soon as the scan had been completed he began to feel unwell, he told the staff he was feeling odd and continued to describe each new symptom as it happened so that they were able to assess his condition and what drugs were needed to counteract the reaction, he says the staff all reacted very quickly. He remembers there being three doctors and five nurses/radiotherapy staff all working to deal with the anaphylaxis, at one point, one of the doctors had Ray’s legs up in the air resting against his shoulders to maximise the flow of blood to Ray’s brain.

Once Ray had recovered sufficiently he was transferred back to the CSRU (Cardiac and Stroke Receiving Unit) where we had spent Monday afternoon.

A student nurse stayed with us for the first half hour, during which time the rash on Ray’s skin became lumpy as the reaction cleared through his system. After his observations had settled down, Ray was moved to a more comfortable bed where we stayed for the next few hours. The Neurology Consultant came to see Ray and said that it was now essential that they get an MRI Scan, he suspects that an artery in Ray’s neck has torn which is causing the symptoms but that before he could decide the best treatment he needed to have the scan images to assess the damage. He told us that Ray would be kept in overnight and would have the MRI Scan on Wednesday, Ray could have Valium (Diazepam) to relax him enough to tolerate being confined in the machine.

My lovely husband, this was taken after all the rash had subsided, I should have taken one when he first came out of Radiology but I had other worries 😦

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I should explain that Ray and I are both 51, not an age you would expect to be worried about having a stroke, Ray has not smoked since his 20’s, he exercises regularly, is comfortably cuddly and does enjoy red wine so not even a high risk candidate.

It was agreed that Ray would be transferred to a ward and go on the list for a sedated MRI Scan the next day. Josh drove from home to bring two AC/DC CD’s that Ray had asked for to listen to whilst in the scanner to help block everything out. Josh and Liza popped in to see Ray briefly and as soon as they had left to go home a nurse came to take Ray up to ward 8. I went up with them so that I would know where to find Ray when I came back the following day. I then came home, had a quick snack, a short chat with Josh, Liza and Megan and then took myself off to bed.

I didn’t sleep very well, I never do when Ray is not home, and I felt quite rough when I got out of bed. I had intended to gradually ease myself back in to driving but have been thrown in at the deep end and my right breast, armpit and shoulder are aching.

Ray phoned, he was very upset, feeling low and worried about the MRI Scan, after talking with him for a while he was a little better and asked me to get in touch with his Director. Soon after having breakfast I telephoned Ray’s work to update them, responded to some messages and went back to bed for an hour or two.

I felt much better when I woke up, I telephoned the ward to ask how Ray was getting on, he still hadn’t had his scan but was otherwise OK so I just had time to have some lunch and head out in time for visiting time at 3 pm.

The MRI Scanner had been really busy so Ray didn’t get to have a scan, so we were sent home in time for dinner. We will be going back to hospital again tomorrow and having another attempt at having the MRI Scan. 

So Thursday morning we are up and out early to get to Wycombe for 9 am to check in with the Medical Day Unit Assessment Clinic (MDUAC). Ray was booked for an 11:00 am MRI Scan so was given 10 mg Diazepam an hour before, Ray tried to relax on the bed with AC/DC playing very loudly, I could tell what track was playing even with him listening through ear buds! Ray was very stressed about having the scan, the Radiographer assured him that they would be using the ‘Cage Frame’ rather what she called a ‘Full Darth Vader Mask’ which is what had been used on Tuesday’s MRI. Whist Ray and I waited outside the scan room he was still listening to AC/DC and had given the radiographer his CD to be played while he had the scan, I tried my best to calm him by gently massaging his shoulders. When Ray was taken in to the scanner I was able to watch through the window as it was all set up for him, he asked for the headphones and his music as soon as he was on the scanner bed. When they were all set up the radiographers came out of the scanner room and closed the door, at which point I went to sit and wait for him to be brought out. At last Ray was brought out and we returned to MDUAC to wait for the results, after a while Dr Burns, the Stroke Consultant came to see us. The scan had still not produced the detail they needed so he would speak to the Neurology Consultant and decide the next step would be. He came back a short while later to say that they had decided to do a Lumbar Puncture, which among other things would confirm if there had been any bleeding in to Ray’s brain. Dr Burns Registrar, Aubrietia, would be doing the procedure the same afternoon and if the result was inconclusive Ray was booked in to have the ‘Full Darth Vader Mask’ MRI next Wednesday with full IV sedation. Ray had to lay flat for 1 – 2 hours, the MDUAC closed at 5:00 pm so Ray was transferred back to the TIA Clinic room on ward 8 to wait for the initial results from the Lumbar Puncture.

Dr Burns came to see us, the pathology results had confirmed that there was no bleeding in Ray’s brain, there were two other tests being done on Ray’s spinal fluid but as these would not be completed for a few more hours he allowed me to bring Ray home. So thankfully, we have a few days off until Ray’s next appointment next Wednesday. Fortunately Ray has recovered well from the Lumbar Puncture, other than feeling sore and tired has no other ill effects.

So Friday and today we have done as little as possible, we have done a little bit towards getting things back in to the kitchen cupboards. Today Megan helped out, she used Ray’s circular saw to cut some more shelves for the wall cupboards, so we can get those finished off when we can stir up the energy.

This past week has been awful, the stress and anxiety about Ray and the to-ing and fro-ing to the hospital have taken their toll. By breasts are sore again, the swelling in my right breast was subsiding but has now in creased to the same level as during the first few days after my operation. My shoulder muscles ache and I have pain in my upper chest from the driving. I have had times when I have felt so exhausted that I just didn’t know what to do with myself.

Saturday – This morning I found my anger, Ray and I are only 51, we both have life altering/threatening conditions and I’m angry about it. Ray and I work hard to keep our heads above water, we are looking forward to spending our retirement together and this keeps us going. Now illness is challenging us in many respects, I have been on half pay since my operation, but the outgoings are still the same, so I may have to consider my options. I know that I am not well enough to go back to work full time yet, and after four days of driving a distance similar to that of my journey to work, realise that I will probably not be able to work half days and then drive for my Radiotherapy Treatments without becoming completely exhausted. Some tough decisions to be made.

Lord I know you said you'd never give me more than I can handle

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Bathroom Bliss, Poorly Husband and Visit from a Friend

Wednesday was reasonably peaceful, I got some more things back in to the kitchen, there is so much still in boxes that I am not sure it is all going to fit in the cupboards! It has been a slow process, I have learned to make sure I rest between periods of activity. And the bathroom is as good as finished, all that needs to be done now is the ceiling light to go up and the extractor fan cover to be fitted. The Electricians arrived to do this on Friday afternoon, just as we were on our way out for a hospital appointment, so we had to leave them to lock up when they had finished. It looks great, so good to have a shiny new bathroom suite.

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And the kitchen looks great too, but I’m not sure if my shabby chic accessories will look right in a sparkly new room

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Tuesday evening, Ray had a migraine and went to bed early, he went to work on Wednesday but was still unwell and came home in the early afternoon and went straight to bed. He has been vomiting (sorry, TMI) and hasn’t been able to keep any solids down since Monday. His vision is disturbed, he says it is like he has had too much to drink and he has pain up one side of his neck and his head feels pressured.

So Thursday morning we went to the Doctors, Dr Firth checked him over thoroughly and the outcome was stress induced tension headache, she prescribed Diazepam to relax the muscles in his neck and he has a sickness certificate until Monday 1st December. Her advice is to spend the time relaxing, for us to go for gentle walks and for him to do things he enjoys. I have been worried about him for some time, he is such a kind man and is literally generous to a fault – the fault being that he puts other people’s needs before his own, and is so conscientious at work that he burns himself out. He has been saying that he is fine and that he is just getting on with things, but I know that he is suffering in silence and that there would come a point where the stress will hit him, and now it has. Ray went straight back to bed when we got home.

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I had a visit from my friend Margaret, we used to work together until she retired last year, it was lovely to see her and catch up on her news. She brought a gift of a Cyclamen, one of my favourite winter flowering plants, just hope I can keep it alive, to say my record with house plants is rather disappointing would be an understatement!

Thankfully, in the afternoon Ray stopped being sick and managed some toast in the evening. On the Doctors recommendation, I had popped to town and got one of those neck cosies that go in the microwave to warm up, it smells of lovely lavender, and Ray says it did help ease the pain in his neck so that was good. I must admit I went in to ‘Florence Nightingale’ mode, dashed about with drinks of water and medicines for Ray, got carried away tidying up at home and doing a supermarket dash to stock up on essentials, I carried too much shopping and suffered for it in the evening with painful twinges in my breasts, and after saying I have learned to pace myself! When will I learn?

Friday – Ray is much improved, he still has a headache and sore neck but it is not as bad as it was yesterday and he has been able to stay awake all day. I had another appointment at Mount Vernon Hospital this afternoon, Ray felt well enough to come with me, and I was very pleased to have his company.

This was a group appointment for of myself and four other ladies, all of us due to start Radiotherapy in the next few weeks (and our partners/friends). We were shown The Lynda Jackson Macmillan Centre and one of the volunteers gave us drinks and explained the services they offer. We were then collected by one of the Radiotherapy staff to have a tour around the Radiotherapy Suites and watch a presentation explaining our treatment and follow up care.  We all had a chance to ask questions, the main points for me were:

As I am having treatment for both breasts, the time I spend in the Linear Accelerator will be double that taken to treat a single breast as the machine has to be set up to treat one side and then moved to treat the other. The Linear Accelerator is the machine providing the radiotherapy treatments it will look just like this:

LINAC

Ray was concerned that as I will have a break of four days in treatment over Christmas that the Radiotherapy might not be as effective. We were assured that this will have been considered by the care team and they would have ensured that it would not have a detrimental effect on the outcome of my treatment.

I will need to make sure I always use a high factor sun cream on the treated area when going out in the sun from now on as the skin will be much more sensitive and burn very easily. I’m going to struggle with this as I dislike the way sun protection cream make my skin feel, it makes me feel oily, sticky and dirty, yuk! Do any of you know of a sun cream which doesn’t do this?

During and after treatment I will have to cultivate the habit of using moisturiser at least twice each day to help my skin cope, it has to be perfume free and as simple as possible, I can use 99% Aloe Vera so I’m happy with that 🙂

I don’t need to take any of my jewellery off, just all my clothes from above the waist… as any of you who have had treatment for breast cancer will know, you have to get used to bearing your breasts and having them pushed and pulled about by all manner of medical staff, there is no room for modesty here! I am becoming quite blasé about it now, my biggest issue is that it is often cold in the hospitals, especially in rooms where there are big pieces of technological equipment that need to be kept in cool, air conditioned environments to stop them from overheating and breaking down. I will be heading for the café for a seat by the radiator with a warming cup of coffee to thaw out before coming home.

My breasts may become swollen so I will hold on to my more generous post-surgery bras (or as Ray would say bramassivos) in case I need them again.

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It is just over five weeks since my operation and I still have a blue patch on my left breast, I thought that it would have cleared by now, I think next time I go to hospital I will ask about it if it has still not gone.

Today Ray and I are both feeling low, we didn’t sleep well last night, plus Ray has a headache again and his tongue is numb down one side. So we went to town to get some groceries and to Healthright for more Aloe Vera Cream and some perfume-free deodorant in preparation for my Radiotherapy, we are now relaxing. Ray was watching the Rugby, well, I say that, but how he can watch it through closed eyelids I’m not quite sure, must be magic! But then shortly after writing this, I nodded off too, my laptop slid off my knees and on to the floor, fortunately it didn’t do any damage.

Megan cooked Lasagne and Garlic Bread for dinner, very tasty! We have watched ‘Strictly’, the dancing was fantastic tonight! And are now watching Atlantis, lightweight viewing is just right for a Saturday evening.

Strictly 22 Nov

Exhausting Ikea, My First Tattoos and More Hospital Appointments.

After some debate on Sunday morning about whether we should start putting everything back in the kitchen cupboards or not, we decided to wait until it is all finished. This left the day free, so we rashly decided to take a trip to Ikea, we wanted to look at storage boxes in an attempt to get better organised at home, and Megan came with us as she needed a few bits. I was really quite enjoying being out and looking at all the room schemes and managed for a couple of hours before starting to feel tired. So we had a break for the customary meatball dinner and a very welcome chance for a sit down. After finishing walking round I was exhausted and fell asleep on the way home. I think this is the most walking I have done since my op, my legs were aching pleasantly in the evening.

I came across a painting on Pinterest recently by Australian artist Kristy Milliken, the colours in it very much remind me of my post-op body, the lady has the same purple as my bruises and the same blue on her breast as the radioactive dye, After over a month, I still have the remnants of the bruises and a patch of blue on my left breast.

Purple and Blue

Monday: I have made another small step towards normality overnight, before getting in to bed on Sunday evening I decided to remove the pillows I have been using for support under my knees whilst I have been unable to sleep on my side/s. I am pleased to report that although it took a bit of time to get comfortably arranged on my side to start with, I slept well, no waking from pain and feeling no worse for it this morning, fabulous!

Ray and I have had a quiet day, I’m still recovering from the trip to Ikea so have taken it slowly. Ray and I had a short trip to Chesham to drop some surplus things in to a Charity Shop and get something for dinner, when we got home I went for a nap as I felt completely drained.

Tuesday we had an early start as we have to be at Mount Vernon Hospital for 9 am. The journey to the hospital is quite picturesque in places, we saw a Heron at the side of the canal near Rickmansworth. We have a heron that visits our garden occasionally, they are lovely birds, but not very welcome when they attempt to catch our fish.

Here is the naughty Heron perching on my Belly-Dancing Goddess statue      

Heron on the Goddess with Arrow

The Cancer Centre is in an old part of the hospital, the waiting area was very cold and the CT (Computerised Tomography) Scan room is also cold. Before having the scan the Radiographers moved me around to get me in the correct position then drew all over my chest and under my arms, took measurements and did the scan. When this was done I had my first tattoos, these are done so that the Radiographers have a constant point of reference each time I go for Radiotherapy, I have a spot between my boobs and a spot under each armpit. I’m wondering what I can have added to them to make a pretty tattoo when this is all finished? Ray suggested little hearts ❤ I got given the list of my Radiotherapy dates, my first will be on 10th December and the last on 7th January 2015, what a lovely treat for Christmas and the New Year!

The CT Scanner was almost identical to this one-

CT Scanner

Ray and I had a nice hot cup of coffee in the canteen to warm us up before setting off for home.

As seems to be the way, when we got home, a letter was waiting for me with a date for my Pre-Op assessment for the removal of the Scleral Buckle in my left eye and the date is….. 2nd December with the Operation date expected to be two weeks later! I think Radiotherapy will be more than enough for my body to cope with, I don’t think I need to have a sore eye at the same time! I have just spoken to the eye hospital and they will re-arrange it for after 12th January. That sounds like a much better plan.

And the other good news is, when we got home the kitchen workman had gone as it is all finished! Hurrah!! It does look lovely, all clean and fresh, it’s probably the nicest kitchen we have ever had! This afternoon I made a start on getting things back in the cupboards, I have filled four drawers and will do a bit more tomorrow and get some of my ‘pretty bits and bobs’ put back, then it will really feel like ‘home’ again.

I cooked dinner this evening, only the second time since my op, I’m really tired now, a recurring theme I know, I apologise if this is getting boring.

demon

Shortly after getting my diagnosis I received a lovely text from my niece Sophie who recently gave birth to a lovely baby boy, she says:

“Hello dearest Dee, so sorry it has taken me a little while amidst near-constant dairy duties to message you and say how truly sorry I was to hear your news; I have been thinking of you and cannot believe this most elitist of trials (cancer seems to make a beeline for the very best of souls such as yours…) has happened to you, but hope you know how much we all believe in you and your ability to quash it. If there’s anything at all we can do, you must let us know. For now, saying all our prayers and sending lots of cuddles with supremely positive energy, all our love XXXXX”

It is lovely messages such as these which lift me up, and along with the constant love and support from Ray, Megan, Josh, Liza, my sisters and friend Jan I can keep going and remain (mostly) in good spirits, I cannot thank you enough, love you all very much.

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How it went – Bilateral Wire Guided Wide Local excision and Sentinel Node Biopsy

Wednesday 15th October 2014

(Written Thursday Evening)

I will start writing this post, but if it gets to difficult, (physically) I will stop and carry on tomorrow.

Ray & I arrived at the Day Surgery Unit at Wycombe Hospital shortly after 7 am on Wednesday in good time for my 7:30 admission. There were three other ladies in the same room, all of us having breast surgery of one kind or another, I was the only one having surgery to both breasts. After the usual blood pressure etc checks, the Senior nurse practitioner (I think that was her title but I’m not certain) came to talk through the procedure and sign off the consent forms with me.

(Written Mid-day Friday)

She also made what were the first of many pen markings on me, an arrow on each wrist pointing up, to indicate both breasts for surgery, and notes across both shoulders indicating to what was to be done on each side. After a short wait Ray & I were taken to the Breast Unit. This was for a procedure to insert wires in to each cancerous growth to indicate their location (Wire Guided), as the growths are in ducts they would not be easily located without doing this. I asked for Ray to come in to sit with me whilst this was being done, the nurse was a little reluctant as she explained they have had partners passing out when they see the needles and what is done with them, falling off the chair and needing to be taken to casualty. After assurances that Ray was fine with needles and would not pass out, he was allowed to sit beside me. The Doctor located the growth in each breast using Ultrasound, took measurements, and marked the area, he then injected local anaesthetic in to my right breast and inserted a wide needle in to the growth, again using the ultrasound screen images to guide it to the correct location. Ray watched the whole procedure, he says the needle was a similar size to that used when he gives blood. Then the guide wire was fed through the needle, it has a hook at the end to hold it in place internally, once it was fully through the growth, the needle was removed and the external end of the wire securely taped to my chest. The procedure on my left side was identical but was painful as this growth was larger and located deeper under the skin. I am really squeamish with needles so didn’t watch any of this, when it was all finished and covered up I did sneak a peek 😦 I was glad I couldn’t see any of the wire!

The next procedure was another mammogram –  the dreaded squishing machine >}<   >{< to double check that the wires were correctly located, fortunately they were 🙂

Then we were taken on a trip to Nuclear Medicine for another scan, this time to locate the sentinel nodes under each arm. What happens is that the Radiographer injects blue radioactive fluid in to each breast, then waits five minutes or so for it to begin working its way to the lymphatic system. Then I was taken to have the scan, the machine was the same as the one below:

Image source: http://www.enherts-tr.nhs.uk/files/2013/11/N-medicine.jpg

The machine takes up to 15 minutes to produce each scan image, once the images are displayed, the radiographer uses a metal instrument, like a long pen, and by pressing lightly on my skin could see on the screen where my sentinel nodes were positioned in relation to the instrument and marked them up under each arm. During the procedure I had to have both arms raised above my head and was laying there thinking that I now understand why this position is used to torture people, it was painful! However, using meditation techniques, I was able to cope with it, and at one point actually drifted off to sleep for a few minutes. Towards the end I was able to see the screen showing the radioactive particles moving along and settling in my lymph glands, fascinating!

I had so many scans that I got given a bar-code, beep-beep!

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Ray & I were collected and taken back to the ward to wait for my operation, it was now the afternoon, we were both tired after such an early start, I settled down on the bed, Ray in the bedside chair, and we both went off to sleep.

Some time around 2 pm I was called to Theatre, Ray was able to walk with me as far as the entrance doors, it was a this point the reality struck me and as Ray & I hugged I could see the emotion in his eyes. Then the nurse and I went in to the Theatre suite to wait for me to be taken off for anaesthesia.

Waking in recovery, I was very aware of discomfort across my upper torso which made breathing difficult, this meant that my stats were not improving quickly enough. The Nurse Practitioner who I has seen earlier came to let me know that they had removed both growths and that they had found no cancerous cells in my lymph nodes which is wonderful news 🙂 The recovery staff agreed that I could have Tramadol to relieve the pain, once this took effect I was able to breathe more deeply and although I still had an oxygen mask, my oxygen saturation scores increased enough for me to be released back to the ward where Ray was waiting for me.

After having some water, tea, toast and a wee I was allowed to leave. The journey home was painful, I felt every bump in the road, and there were a lot of them! We arrived home at 9 pm, Megan, Josh & Liza were pleased to see me and to hear that the cancer hasn’t spread. They have me Lilies, my favourite flowers, Lindor Chocolates – my favourite treat! and get well cards from everyone, I was very touched 🙂

I was weary after such a long and eventful day, and sore from the surgery, so after more tea and toast went off to bed.

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