Anticipating Loneliness

Tomorrow Ray begins a phased return to work, he will be working Monday, Wednesday, Friday, 10 am to 2 or 3 pm and then all being well gradually increasing his hours.

We have been together almost continually since 20th November, that’s eleven weeks, the longest time we have been apart was when Ray stayed in hospital overnight, and we haven’t argued once. I will certainly miss him on the days he is at work, I will be lonely with just Shadow for company. I’m really not looking forward to being at home recovering from my eye operation without Ray to keep me cheerful. Knowing Ray will be at work part time makes me realise how much having him with me has kept me going, although the circumstances could have been better, at least worrying about him kept my mind off my own problems for a lot of the time.

I’ve been trying to take my mind off this next stage in our recoveries by working on upcycling a small cabinet. I finished it this afternoon and am happy with the finished product. I now have several things to work towards, recovering from eye surgery, coping without Ray being at home, going back to work myself and getting on with craft projects as I will be possibly having a stall at a Vintage Fair on Whitsun Bank Holiday weekend.

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Stroke Update, Eyes, Breast Pain and Here Come the Side Effects.

It is now just over a week since Ray’s last visit to the hospital so I thought it was time I updated on his progress. There is no change in his speech, he still has the lisp which sounds quite cute, there is something very endearing about it. There is also no change with the difficulty chewing and swallowing. Ray wakes up in the morning with pain, but once he has taken the first dose of Tramadol and then continues to take it regularly, it is bearable and under control for the remainder of the day.

Ray had an appointment with his GP on Monday as his sickness certificate had expired, Dr Hussain has now signed Ray off work until the 9th of February 2015. Since having the continual pain, and with not being able to do much, Ray has been feeling low, so they discussed him having anti-depressants, Ray felt it was best for him to start taking them before giving it a chance to take hold so now has these to take too. It is fortunate we decided to buy a Prescription Pre-Payment Card, as Ray now has four different types of tablets to take each day.

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Ray taken on our holiday to Cumbria in June

This morning two letters from hospitals arrived, one was a copy of the report sent from Wycombe Hospital to Ray’s GP, it has details of his diagnosis in proper medical terms, so here it is:

Left hypoglossal nervy palsy – due to left internal carotid aneurysm dissection at skull base.

Ray has felt well enough to come with me for my Radiotherapy since Wednesday, it is so good to have his company, in this and at home. I think I would be feeling very lonely without him, although I would like the circumstances to be different, I am grateful he is home with me.

The other letter was for me, from King Edward VII Hospital, with an appointment for the Pre-Op Assessment Clinic on 14th January at the Prince Charles Eye Unit. This is in preparation for the removal of the Scleral Buckle in my left eye. All being well, the operation will be done around two weeks later, ah, just in time for my birthday then. I hope that the removal will not cause so much disturbance as occurred when it was fitted. I had a general anaesthetic for the fitting, for the removal I will be having local anaesthetic only, I am very nervous about this, but I have resolved that if Ray can get himself in the MRI Scanner, then I can cope with being conscious for my eye operation. Fingers crossed!

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This photo was taken a few days after the operation.

And now, back to breasts! You may recall that I had asked one of the Radiotherapists about the discomfort in my right breast, the staff had reviewed my scans and apparently it is being caused by two Seroma in the breast putting pressure on the remaining breast tissue. If the seroma get any larger and begin to distort the measurements then they will need to do something about them, but for now it’s a case of grin and bear it.

Yesterday evening I began to feel some itchiness in the skin between my breasts, it has persisted today. Putting my bra on this morning, I noticed that the skin was tender where it touches my skin particularly around the bottom band, so begin the side effects of the Radiotherapy.

I mentioned it today at my treatment session, the advice was to switch to E45 cream and to make up Camomile Tea, wait for it to cool and bathe my skin with it. I will try these suggestions out, sitting here this evening, even my ‘crop top’ bra is making me feel sore, trouble is that going unsupported is uncomfortable, swinging about on the loose is not pleasant for tender boobies.

Bra and Shopping

Three Down – Twelve, Plus Three Boosters To Go

I have been so looking forward to having this weekend off from my Radiotherapy. Three days of travel, waiting my turn in the Linear Accelerator, stripping off from the waist up, laying on what feels like a mortuary slab and being moved about by various Radiographers to get all my dots lined up and the measurements all set to the correct places has been hard going. I have been fine with having my breasts exposed in the interests of their health so far, but yesterday I felt exposed and just a little bit violated. The Radiotherapy staff are brilliant, I have no complaint with them, it is the procedure they need to go through each time that I found stressful. I have a full five days of Radiotherapy to ‘look forward to’ in the coming week, this is the only full week for me as I have days off for Christmas, Boxing Day and New Year’s day, oh the joy!

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For those of you with no experience of Radiotherapy for Breast Cancer I will do my best to explain. The Linear Accelerator room is cold, I strip off the top half of my clothes, climb up on to the platform, trying to get myself positioned centrally and with my shoulders in the right place. If I get it wrong the Radiotherapists ask me to shuffle about until I’m positioned correctly. Then it is time to line up my dots with the green lines which shine across my body. The Radiotherapists move my arms and torso about until the measurements match my treatment plan, they call out the measurements to each other, one moves me and the other reads the figures out, and then they both check again that they agree to the plan.

The Linear Accelerator is moved in to the first position and the measurements checked, it is then moved around to the second position and the measurements checked. When both Radiotherapists are satisfied, they leave the room and the treatment session begins.

I have approximately 30 seconds of treatment for both positions, as well as a short burst of targeted treatment where shutters move across the Collimator to reduce the beam area, again in both positions. The Collimator is a part of the Linear Accelerator device that narrows the beam of radiation waves. Not sure if that makes sense, but I can’t think of any other way to describe it.

Then the whole process is repeated for the other breast.

I will just have to grin and bear it, yesterday was the first time I have felt a lack of dignity in my treatment, I thought I was OK with it, but obviously not as much as I had believed.

Cross-sectional view of a woman receiving radiation to the breast area

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A Middle radiation beam
B Side radiation beam
C Bright yellow: place where radiation is given to the breast
D Rib cage/chest wall
E Heart
F Lungs
G Backbone
H Sternum/breastbone

Image from: http://www.breastcancer.org/treatment/radiation/types/ext

Today I should have been writing Christmas cards but I can’t seem to raise any enthusiasm for the task. I usually enjoy Christmas preparations but not this year, it all feels like too much effort, I just don’t have the inclination or energy to spare.

This morning, Megan and I popped in to town as she needed to get some things for a Christmas Party this evening, I enjoyed being out of the house for a purpose other than going to hospital. The sun was shining, the sky was blue, and the air was crisp, the perfect winter’s day.

The short excursion was enough, I had a nap after lunch. This afternoon I have done very little, I’m looking forward to watching Strictly this evening, love the dancing and the sparkly dresses.

Ray has been feeling bad about not being able to travel to Essex to see his Dad, He has been visiting his Dad every other weekend since his Mum died and wants to be there for him.

Today is a ‘down’ day, I’m not feeling particularly chirpy and Ray is not feeling well either. I knew from the information I have read that fatigue was possible during cancer treatment, I didn’t appreciate how much it was going to affect me. I had hoped that I would still be able to do things, maybe not my usual weekend walks with Shadow, but at least do some craft work and Christmas preparations.

I am frustrated that even the smallest task uses up my energy resources, going out twice in the same day or even for more than a couple of hours is enough to make me feel so tired that I just want to crawl in to bed and hibernate. Feeling this way leaches positivity, it is hard to be up-beat about this illness with such low energy levels. To be honest Ray being ill is not helping, at a time when I really need his support, and by this I mean practical and emotional. The first is the most vital thing for me, particularly help with driving, but as Ray is unable to drive for four weeks, I have no other option. Both of us are unable to carry anything heavy, so have to rely on Megan and Josh to help out, this too comes hard, we are used to being ‘the parents’ and even though they are now adults, being able to care for our family is what we do.

Friendship

Ray and I are both independent people, more used to offering help to others than asking for help for ourselves, so needing help is a challenge for us both. We have both had plenty of offers of help from friends, and for this we are very grateful, but please understand that it is hard for us to accept, we have no wish to offend anyone, it is for us to learn that there are times when asking is what we must do.

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What I really want for Christmas is a happy, fit and healthy Ray, knowing that Santa will be unable to deliver is heart-breaking, this situation is beyond our control, and I am beginning to feel that I am sinking under the stress of it all.

Butterflies

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 Scare In the Night-time

I have not been sleeping very well over the last few days, as a consequence I have been lacking in energy and motivation, Ray and I have been slowly working our way through getting the remaining kitchen contents back in to the kitchen, but there is still a little way to go before we can start eating in the dining room again.

You're not behind

Friday morning Ray and I had a few errands to run before heading back home to wait in for the new appliances to arrive. I was so tired I went for a late afternoon nap. The cooker and washing machine arrived while I was asleep, when I woke up Ray had been trying to level the cooker on his own. He shouldn’t have been doing that as it meant that he had to get down on the floor to adjust the feet whilst lifting the front of the cooker, bad boy!

It is fantastic to have an oven which works properly and a washing machine that doesn’t leak water and manages to complete a full spin cycle, simply marvellous!

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When we went to bed I was wide awake, I read for ages but still didn’t feel sleepy and then my legs started getting restless so I gave in and went downstairs for a few hours. I eventually felt tired enough to go to back to bed just before 3 am. I had just got under the covers when Ray sat up, I asked if he was okay, he said no, he felt nauseous, had tingling down his right arm and his head was very painful again, all these symptoms were the same as those he had for the first TIA on 18th November. I phoned the CSRU to ask for advice and was told to call for an ambulance, so I called 111 and the ambulance was on its way. We both got dressed just in case Ray needed to be taken to the hospital and went downstairs to wait. When the Gavin and Charlie the paramedics arrived, they went through all the usual checks for Stroke patients, took Ray’s observations and called the CSRU to talk through with a doctor if Ray needed to be taken in or could stay home. There were several calls back and forth after which we talked the issues through with Gavin and Charlie, we decided that there was not really anything to be gained by taking Ray to A&E and if Ray had any further problems over the weekend that we should call 999.

On Monday Ray will phone Dr Aubrietia on Monday to let her know what had happened to ask if he needs to be seen before the pre-planned check-up in 3-4 weeks’ time and any other things he needs to know about after this, his third TIA.

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After Gavin and Charlie had gone, Ray and I went back to bed, needless to say we both felt rough on Saturday and didn’t do anything. During the morning I started with a stomach upset which has now thankfully improved.

Today Ray and I have got the dining room sorted out and have had our meal at the table for the first time in weeks. Megan has vacuumed through the house and cooked Sunday Dinner, she is the best daughter. Josh has put all the emptied boxes back in the loft for us, we are lucky to have such helpful ‘children’, they are great!

Our beautiful Megan

Megan Portrait

Our Handsome Josh and his lovely girlfriend Liza

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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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