Friday, December 15, 2017

A true dilemna

Chris had his first cycle of chemo last Wednesday and is still recovering. It hit really hard and it hit really quickly. He wasn't even able to finish the entire treatment, having to give up 3/4s of the way through due to the intense pain he was feeling in his arm. The first attempt at placing the venflon in a vein resulted in the vein collapsing, so they had a second attempt. The plan for the future is to insert a PICC line into his upper arm. That would hopefully save him from experiencing the pain in his arm, but it will not reduce the aftereffects of the chemo. And that is what is so horrible.

When Chris had chemo the first time, nearly three years ago, the first two or three were quite reasonable. The side effects were not insurmountable and he didn't feel too horrid, just tired and hypersensitive to sounds, smells, light, etc. It wasn't until Cycle 5 last time that things became really unbearable. And that is what has happened. Cycle 1 this time is just like Cycle 5 last time. Because of how badly he felt after Cycle 5, they reduced his number of cycles from eight to six. I don't know what they are going to do now.

Our wonderful MacMillan nurse (Janette) was here this Tuesday. She is going to talk to the oncologist for Chris to see if we could at least put off Cycle 2 (and the PICC line insertion) until after the new year. Chris says his head just isn't in the right place right now. And having had this reaction, I'm pretty sure he is going to be anxious no matter when chemo starts again. So, one is forced to look at the cold hard facts.

Chris is undergoing chemo to extend his life from 12 - 18 months to possibly 3 years. Even that is not a guarantee. The one thing he said he wanted more than anything else was quality of life. What he is experiencing now is anything but. So, what to do? This is a decision he has to make, and I will fully support any decision he does make. I just want him to be able to look back at the last months/years of his life and have happy memories. I don't want him remembering nothing but pain and exhaustion and sadness.

This is truly being between a rock and hard place. It's Chris' life that hangs in the balance. I don't want to be without the love of my life, my best friend, my soulmate, the man who has brought me more happiness in the last 11 years than I knew in the 50 years that came before. He is so adored by his family and friends and, while we don't want him to go, I know that none of us want him to suffer.  So, so hard to figure out what the right thing is.

Hopefully, Chris will have a phone consultation with the oncologist later this month and we can get a better view of what the future holds if Chris should decide to opt for palliative care only. I just can't abide seeing him in so much pain, feeling so unwell and so sad and so scared. What I would give to take all this away from him.

Difficult times here and we are understanding the physical struggles now, too. I am simply unable to do so many things because of the pain involved (I am in pain constantly, but standing or walking on my sticks is just becoming far too painful to endure). A social worker and district nurse are coming today to see how we're doing. Hopefully we will get some help. And I plan on creating a Crowdfunder for another electric wheelchair that I can keep in the house (the one I have in the car we use when out and about - but we can't get into the house because of the layout of the door and entry. If I had a power chair in the house, I could do more than I am capable of doing at this point. We shall see...

Wednesday, November 29, 2017

Smiling through the rain...

This past Monday, we saw Chris' new oncologist. Dr. Mmeka was kind, comforting, and warm. And we had the added bonus of our original MacMillan nurse, Mary Anne, being there as she is now a senior nurse specialist with MacMillan. Chris starts chemo next Wednesday, the 6th, not far from 3 years since he last started chemo.

We also had the pleasure of meeting Dr. Catherine Todd, one of the doctors at the Highland Hospice. She and Janette (our MacMillan nurse) stopped by yesterday so Catherine could meet us and find out more about us. Like everyone else we have met, she was warm and kind and appreciated not only the sadness of our situation, but the insanity that is Chris' sense of humour. (I have a feeling Janette may have prepared her for us.)

Chris will start on steroids tomorrow to try to bring down the swelling in his liver that is giving him a great deal of discomfort. Hopefully, once the steroids bring down the swelling and the chemo starts, he will begin to feel better. He is amazing - he is maintaining his humour and a certain level of what may be called irreverence. While he certainly has his down moments, he is trying so hard to be positive and I admire him for it. He does his best to keep me smiling. That being said, we know when we need to just hold each other and cry.

The rain I refer to in the title isn't just the rain (sleet, snow, hail, and wind) that presents itself on the other side of our windows. It refers to my tears. As I said to a friend, I have good days and bad days, but never one without tears. Nighttime is the worst - I put my head down on my pillow and my mind wanders to thoughts of sadness, to the thought of saying a final goodbye. And the reality of my life without my very best friend. The cancer is turning our lives upside down, but Chris, bless him, is doing his best to turn it into a carnival ride. From thoughts of staging his last moments like a Renaissance painting to imagining crazy ways to scatter his ashes, if it's dark humour, Chris is there. 

A wonderful portrait of Chris taken by Catherine, who is one of the only
people allowed to touch Chris' camera!

For those who have never had the opportunity to meet my incredible husband, he is simply one of the kindest, most loving people ever. I count my blessings everyday that we found each other. He fills my heart with so much love and joy - as he does the hearts of everyone in his life. Caroline and family came down this past weekend and Catherine was rarely far from his side. She is aware of what is going on and, I dare say, she may be the one who will feel the most sadness when the time comes. She loves her Abba so much, and he loves her. And watching them together now is the most bittersweet experience I've known. 

We will make it through this very tough journey that will end with a loss I can't begin to even process. Chris will make it the best it can be with his love, his courage, and his humour. I love him so much. Now Chris is more than just my husband, my lover, my soulmate, my best friend - now he is my hero, too.


Friday, November 17, 2017

The sunshine eludes us...

We met with the surgeon on November 8. The news was and is not good. Chris' cancer is terminal. Even as I type those words, they seem to be unreal. I can't get my head around this. At the same time, I am often overwhelmed by such incredible sadness. We will rally and keep our ridiculous senses of humour and get the most out of the time left (18 months to 3 years). Because of Chris' other health issues, surgical resection of the liver wasn't possible. Not only the health issues, but within the span of six months, not one, not two, but four lesions appeared in his liver. Two in the right lobe, two in the left. As the liver is a regenerative organ, trying to keep up is going to be difficult. But Chris has opted for palliative chemotherapy (keeping the cancer growing at a slower rate); the other option was doing nothing at all, which would have resulted in a life span of 12 to 18 months. Now we await our first appointment with the oncologist on November 27th. Thank goodness we have things to distract us until then. Callie and her family are coming to visit on the 25th, staying overnight, and then Lucy and Olly will arrive on the next Friday for the weekend. Of course, by then we will have seen the oncologist. Hopefully, the chemo will also provide some pain relief. Chris is in a great deal of discomfort right now. The liver is swollen and causing pain across his upper abdomen. Our GP has prescribed Oramorph and codeine. Chris tried putting off taking these heavier duty painkillers, but has had to introduce them into his daily schedule - such is the pain he is experiencing.

Chris has made it very clear that he wants to spend the time left enjoying his life. He wants to fill his days with love and laughter, and I will do the best I can, but I have moments of sheer emotional agony. My insomnia seems to be better, but I think it because my mind is working overtime, more than usual, and I am exhausted by the end of the day. On Tuesday, I saw the CBT counselor. She stated this was going to be a very difficult time and there is no easy to deal with it. I knew that before she told me. I have good days and bad, just as Chris has. And our family is being so wonderful. Callie made the decision to be frank with Catherine and Catherine's first reaction was to voice sadness that Alice won't have clear memories of Abba. Dear, sweet child. This is going to be so difficult for her. She loves her Abba so much. Hell, we all love him so much. How can this be happening?

I have been retreating into my studio to spend time creating, with Chris' encouragement. It brings me distraction and a sense of accomplishment and satisfaction. We are going to work on streamlining the studio more so a bed can fit into the room, in case we need more sleeping space for family. It is going to be a challenge, but we will get it down to taking up a manageable amount of space.

That's our news. I am still looking for the silver lining, but it is eluding me at this point. Not sure I will find it, to be honest. Chris is my husband, my best friend, my soul mate - I can't imagine living without him. This is going to be so hard...

Wednesday, October 18, 2017

Looking for the sun...





This past Sunday night, I spent my usual time watching the results show of "Strictly Come Dancing." I don't normally listen to the song from the special guest, but this week's special guest was the glorious Gregory Porter. Oh, how I love his voice. So, I watched, and I'm so glad I did. The orchestra played a familiar intro, and he sang in his deep, rich voice...

Smile tho' your heart is aching
Smile even tho' it's breaking
When there are clouds in the sky
You'll get by.

Smile through your fear and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through 
For you

Hide every trace of sadness
Light up your face with gladness
Although a tear 
May be ever so near

Smile, you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just smile.

(If you'd like to hear Gregory Porter sing this classic Charlie Chaplin song, here's the link: https://youtu.be/A6Iv45Ls_xA)

It unleashed the tears. I cried and cried and felt such a release of anxiety, tension, and supreme sadness.

You see, on October 3, we got a phone call we were not expecting. It was the nurse specialist from the colo-rectal unit at the hospital, reporting back on Chris' most recent scan. As she said, it was not the news any of us anticipated. In fact, the last time we saw her, she had remarked on how well Chris was looking. All that being said, Chris has been experiencing some real discomfort in his abdomen and said he hadn't been feeling "right." So, perhaps he anticipated the call. After, he said he wasn't entirely surprised.

The news was that the latest scan showed some lesions on Chris' liver. They were going to schedule him for two additional scans. One would be an MRI at Raigmore in Inverness and the other would be a CAT/PET scan in Aberdeen. With the NHS, you can gauge how serious the situation is by the speed with which specialty appointments are made. The scans were both scheduled within 48 hours of that phone call.

After we received the news, I went into "deer in the headlights" mode. Normally, I am pretty good about this sort of thing. I take in the available information, weigh up what I know and what I don't know. and move forward with a sense of purpose. But I couldn't, not with this news. It was far too scary. And I was, and continue to be, scared to death. Both scans have now been completed and we await the appointment with our yet-to-be-met consultant. One thing of which we have no doubt from what we've been told - the cancer is back.

On Sunday night, as Gregory Porter sang those lyrics - lyrics I have known all my life - I felt as if I needed to really pay attention to what was being conveyed. Smiling was and is the last thing I feel I should do or want to do. But if I don't smile, if I don't try to find that bit of sunshine coming through the clouds, then the cancer has already claimed a victory of sorts. And I won't let that happen. For every moment I spend fearing the worse, I am missing one more moment with Chris, with the man I love more than anything in the world. As I said to a friend back home, it took me 50 years to find him; I'm not going to give up on him - on us - that easily.

The cancer is back for round 2. Okay, fine, we'll take it on again. And I believe with every ounce of my body that we will fight and we will win again. We have our families, our friends, those people we love who love us, supporting us and backing us with their support and prayers. We won't give up...

Saturday, July 15, 2017

Catching up...

I can't believe how much I've allowed this blog to be forgotten. It's not that life hasn't been, well, interesting since Christmas of 2016. But how do you put into words concerns and fears without sounding like you are whining. But worry was very much a part of the beginning of 2017.

I had a cancer scare after Christmas. It terrified me. Having witnessed the cancer struggles of my first husband and Chris, I was even more aware of how fearful a possible cancer diagnosis can be. But, fortunately, some very minor surgery and a biopsy proved that my fear was unfounded. I am still dealing with chronic fatigue, but at least the cancer scare is a thing of the past.

Chris has been doing really well. We saw his colorectal nurse yesterday, and he was given a wonderful assessment. She said how well he looked, she allayed his fears regarding what will be, no doubt, life-long inconveniences that have resulted from the surgery. But, we were told that he will have just two more scans and follow-ups, along with a colonoscopy, and then he will be discharged from their care. His bout with cancer with be truly over. We are so, so grateful for the amazing care he has received from the colorectal team at Raigmore Hospital and from our GPs. Chris has also been discharged from ongoing care from the stroke specialists. His stroke experience continues to impact his life, as he suffers from what is called sequelae of stroke. This means that he suffers from ongoing effects, such as fatigue, muscle weakness/numbness, migraines, balance and speech issues. However, as his cardiac health (or lack thereof) requires the same medications that would be prescribed in the hopes of preventing future strokes, there is really nothing more the neurological team can do for him. So, he is no longer being seen with any regularity.

Chris' cardiological health continues to be of concern. His medications are pretty much controlling his angina, but it comes when he exerts himself beyond a certain level. The cardiologists are happy with how his medications are controlling things, but stents are still a very probably option at some point in the future. After all, his level of blockage in the cardiac arteries is not lessened by his meds. He takes blood thinners and medications for hypertension. But, all in all, he is doing possibly better than one might expect.

Of course, the most wonderful news of the past 8 months is the birth of our new granddaughter, Alice Elspeth Borland, who was born just last week on July 6. Alice is a beautiful little girl and we are totally besotted. Catherine adores her new baby sister. We spent a lovely day with them yesterday and ended up with the added bonus of Catherine coming home with us to spend a week. She is at an age now where she can help us rather than need us to do things for her - between the two of us, Chris and I barely equal one fully functioning adult, so it would have been harder if she were younger. But as she is nearly 8 now (where has the time gone?), she is a delight to have around as she is pretty much completely independent when it comes to self-care. And she takes care of us, too.

I am so grateful to have my wonderful family. Callie and I are so close, and I love knowing that my daughter is also one of my dearest friends. We are also looking forward to the wedding of Chris's daughter Lucy next spring. And, of course, Olly and his wife Natt are enjoying their life in Exeter. Everyone is happy and healthy. What more could we ask for?