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