Today’s update – Angelic Warrior.

2014-12-10 18.15.22 So Wycombe Hospital, Medical Day Unit Assessment Clinic (MDUAC), here we are again. It has to be said that all the staff we have met, related to both my breast cancer, and Ray’s stroke have been awesome. At the MDUAC today Nurse Bridget was taking care of Ray again, she was great last time we were there and was lovely today too. Ray was being sent for his MRI as early as possible so that we could leave on time for my Radiotherapy, he had 10 mg of Diazepam, Ray was less stressed this time which was a relief. However when he was having the MRI he couldn’t cope with it and had to have the scan aborted. He was brought out to calm down, and after some discussion and persuasion we agreed that Ray would give it another try with me going in with him. So I had to quickly fill out a medical form and strip off everything I had on made from metal. So in we went, Ray was set up with headphones ready for his AC/DC ‘Back in Black’ CD and had the cage put round his head. I was given a plastic chair and ear defenders, at the last minute I remembered that I was still wearing my metal framed glasses, so I took them off and put then down next to my chair. I spent the whole time Ray was in the scanner holding his hand and stroking his leg, and the good news is that Ray managed to stay in the scanner long enough for the images to be taken, Yay!!! So I am his angel of mercy 🙂 a calming presence to keep him strong 🙂 When I went to put my glasses back on, they had moved four feet away across the floor from where I had left them!

So the results are that Ray’s problem has not got worse which is excellent news. He has a dissection of the Left Carotid Artery (I think it is the ‘Common’ one) causing an Aneurysm (a balloon-like bulge in the wall of the Artery), the Artery has three layers and it is the innermost layer which has become damaged and allowed blood to get between the walls. This Dissection is a tear under which blood has collected causing a restriction and reducing the oxygen to the nerve (nerve 12) and also swelling and pressurising the nerve, this nerve controls the left side of the tongue and throat. At present it is expected that the Dissection will heal but this will take around six to eight months. If there is no improvement then Dr Burns will consider putting a Stent in to the Artery or to Seal it up completely. They are both risky procedures but the first is less risky than the second so will only be carried out if absolutely necessary.

Dr Burns wants Ray to rest as much as possible until the new year, he has advised against doing any entertaining over Christmas, just to keep things calm and quiet. Ray will have a follow up appointment in January to see how things are going. Another good result is that Ray has at last been given some decent pain relief, he has Tramadol, the drug he had requested at the Doctors on Monday but they were unwilling to prescribe it as it is a controlled drug. So on a scale of 1 to 10 with 10 being the most painful, Ray’s pain today has gone from an 8 to a 2, this is so much better for him as the pain was really getting him down. Dr Aubrietia came to see Ray and we talked about Ray’s limitations whilst he recovers. Ray is not to do anything involving twisting his head quickly, so no driving or golf, no sports generally, and as he was too embarrassed to ask, I said what about sex, it appears that this is also off the menu unless we can manage it without raising Ray’s blood pressure! Just as well there is so much more to our relationship that sex 😉 2014-05-08 07.13.02 After Ray was discharged from the ward, we headed off to Mount Vernon Hospital for my first Radiotherapy Treatment. Fortunately it was a good journey and we had time to buy some more reduced charge parking tokens and to have a coffee and cake in the café. I have become so accustomed to being treated in the Breast Unit that I forget that the Radiotherapy Department deals with all kinds of cancers, there was another lady waiting for her session who was having the treatment for Bowel Cancer. After a shortish wait, I was called in, I was asked to strip off everything from the waist up, and then to lay on the platform, I told the Radiographers that this was just perfect as I have been looking forward to a rest all day! The two Radiographers spent a long time checking the measurements, moving me around so that my Tattoo dots were lined up with the laser light correctly. Once I was positioned for my right breast, they left the room, took an x-ray to check that all was correctly placed, then began the treatment.

The procedure was the same for my left breast, the actual Radiotherapy didn’t take long at all, I was allowed to have a sheet of paper to cover me up, and this actually helped to keep me from getting frozen. Once the treatment was finished, I got dressed and Ray and I set off for home. We got back just after five.

After a stressful day, I went and laid down for half an hour before dinner as I felt so tired, it was wonderful to stretch myself out after spending most of the day in an uncomfortable upright chair. I need to get myself off to bed so good night all, may the Angels hold you as you sleep ❤ 2012-06-03 17.54.17

Feeling Low

Monday was a good day, Jenny and Howard from work came to see me, it was lovely to see them and catch up on the latest news from the office. However, it can be laborious trying to explain how a diagnosis of Cancer, its treatment process and Remission are and will affect my life, to those that have no experience or knowledge of it.

Ray and I didn’t go out anywhere, we mostly rested, catching up on some TV and doing a couple of loads of laundry.

Today however had been a different day altogether, Ray has been in so much pain on the back-left side of his head and neck that I decided that we should do something about it. I telephoned the surgery to ask if the doctor could prescribe some pain relief for Ray but this couldn’t be done without an appointment so we went off to see the doctor. After a wait we saw the doctor, another different doctor, so Ray had to explain what has been happening from the beginning and then go through the usual checks which we are learning off by heart. The doctor decided she needed to consult with the hospital before prescribing anything, she asked us to go to the waiting room and she would call us after speaking to the hospital. Two hours after arriving at the surgery the receptionist called Ray over to say that the hospital still hadn’t called back and that we should go home, the doctor would telephone later.

We were just having lunch when the doctor called, she said that Dr Burns wanted to see Ray again and would call to confirm arrangements. Dr Burns secretary called to say Ray should go to the Medical Day Unit Assessment Clinic (MDUAC) for an 11 am appointment. A short while later Dr Burns called to say he now wanted Ray to be at the MDUAC for 9 am to have sedation for another MRI Scan. Hopefully Ray will be able to leave in time for me to head across the county for my first Radiotherapy Treatment later in the afternoon, otherwise I will have to leave him there and send Josh to collect him.

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The afternoon deteriorated from then on, whilst we had been at the doctors, a message had been left giving some upsetting news.

This has almost been the last straw, I felt very close to breaking point, but I just have to keep going, there really is no other option.

Dont be afraid

A Quiet Few Days

A new week and a new month, so now we have December, Radiotherapy month begins. On Monday my lovely friend Jan came to visit, she brought a bunch of daffodils, a little promise of spring to cheer a gloomy December day.

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We told her all about our adventures over the last week or so, we probably bored her silly! The rest of the day was uneventful, ah, but I am forgetting, our oven decided that it had been limping along for long enough. And now, just before Christmas might be a good time to throw a wobbly and switch off the gas to the main oven in a thoroughly unpredictable manner, as we discovered when Liza and Josh took their pizza out to find that it hadn’t been properly cooked. That explains why yesterday’s roast Pork wasn’t ready when it should have been.

Later, in the afternoon John, the vicar at Ray’s church came to visit, he is such a calm cheerful person, a welcome gift of peacefulness after a stressful week. 

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Tuesday, we received our first Christmas card!! Thank you Sarah 🙂 Ray and I took Shadow for a gentle walk to the park, then home to think about the cooker issue. Ray knew that the problem was a malfunctioning thermostatic valve, so we went to the two electrical appliance shops in town to ask about getting it repaired, but both said that it wasn’t worth the expense and it would be more cost effective to replace it.

After having a chat about it Ray and I decided that some money we have been saving for a nice holiday we would instead use some of it to buy a new cooker. And as our rather aged 11+ years old washing machine is also whining and complaining to such an extent that it aborts on the spin cycle and beeps out an error message, we will replace it at the same time.

So Ray spent the afternoon researching possible replacements on-line and we chose which cooker and machine to order.

Wednesday we were due to go back to Wycombe Hospital for Ray to have the ‘Full Darth Vader Mask’ MRI Scan with full IV sedation, but Dr Aubrietia phoned to say that Dr Burns (Stroke Specialist) and Dr Jackson (Neurologist) had been looking more closely at the scan images they already had, and were sure that they could see where the problem was. So Ray did not need to have another MRI Scan, the plan is that both Doctors will take the scan images with them to show to another more senior specialist at John Radcliffe Hospital in Oxford next week. If he agrees with their opinion then they will be able to decide on a treatment plan. So now we wait, but at least we are saved the stress of getting Ray in to the ‘Darth Vader’ Scanner mask again, for the time being….

Thursday, another quiet day beginning with a walk with Shadow. I have noticed over the last few days that I have had pain in my right shoulder and that my upper arms are feeling tense. So I have been making more of an effort to do my exercises to help ease the muscles and tendons. I got out of the habit of doing my twice daily routine after all the trauma and rushing about last week. Hopefully I will be able to loosen everything up and build up to the recommended three times each day ready for Radiotherapy next week.

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I have noticed that my right breast and shoulder area have been giving me trouble intermittently, and to a lesser extent, have had discomfort in my left breast. I find that it strikes after I have lifted anything with some weight to it, carrying milk from the supermarket trolley to the car and then in to the kitchen is a common culprit. I am still taking Co-Codamol before bed as this is when I get the most pain in my right shoulder and aching breasts, during the day I am managing with Ibuprofen as and when required. It amazes me how many everyday actions use chest muscles, even yawning can pull on my chest. I’ve been getting a lot of pain in my legs, my thigh bones are hurting when I get up off the couch and the pain when I get in to bed keeps me awake. I have no idea what this is all about, perhaps it is just to do with getting older.

But I am otherwise healthy, have the best husband in the world, and a loving family and friends who are all there for me, without them things would be very different. I have so much to be grateful for, there are so many things money can’t buy, like a good laugh with Ray over our sex life – sadly on hold, as well as the ‘breast’ issue, I’m worried about raising Ray’s blood pressure and pulse rate, I don’t want him collapsing on me!! And Bear hugs are still off the menu, however, we can manage a cuddle, a snuggle, and a smooch, under the present circumstances, who could ask for more than that?

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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