36arn

Walls

It started in spring 2012 with just a few minor symptoms. Nothing too specific...

These are my personal thoughts of Clare's three year struggle against the cancer that finally took her life on the 2nd of July 2015. Please don't read it unless you really want to, and please bear in mind that it's quite bleak, because that's how I feel at the moment.


Clare RobinsonIn July Clare went to see her GP. The GP very diligently examined Clare, and detected something not right in her abdomen. She referred her for an ultrasound scan, saying it was probably nothing significant, possibly a fairly innocuous fibroid.

The very next day I was reading the Saturday Guardian, and my heart sank. As fate would have it, there was a double-page article written by a lady with ovarian cancer. The symptoms matched exactly. I looked at the survival rates and my heart sank further. At that point, a cloud appeared over my head that has been there to this day, over three years later.

We went on holiday shortly afterwards, our last proper holiday and the last family holiday with the four of us together. Clare was mostly OK, although she did spend one day curled up feeling unwell. I subsequently learned that these events were most likely caused by the tumour misbehaving. However, the holiday was overshadowed by what was to come. Upon our return a series of scans followed: ultrasound, MRI and CT, none of which were conclusive. At the time, it seemed a slow, endless and really distressing process, but in reality it was quite fast by NHS standards. At that point, the first foundations of the wall were laid. What was apparent from all of these scans was that there was an approximately 10cm mass in Clare's abdomen, but whether it was bowel or ovary was not clear, nor, of course, what exactly it was. It could still have been a fibroid.

At the end of October, 7 weeks after the first ultrasound scan, Clare was admitted to Cheltenham General Hospital for surgery. At that time, cancer services for our part of Worcestershire were run from Cheltenham. That was a difficult day. We were told that in the best case scenario of a non-malignant growth the surgery could take an hour and a half, but if it was malignant it could take 3 hours. Clare was in surgery for nearly 5 hours. It exceeded our worst expectations. Late that evening, when the surgeon had finally finished her work, we learned that Clare had high-grade stage 3C ovarian cancer, and had required some reconstructive surgery involving a urological surgeon too. I had to go home and tell the kids. I was emotionally and physically exhausted, but I had to be positive with them, and I started building the mental barriers in earnest.

The next day the surgeon visited Clare and explained exactly what had been done. She estimated the chances of Clare surviving 5 years was 70%, which at the time in our fragile state sounded relatively good odds. Clare was in hospital for 11 days due to some post-operative complications. The kids were at school, so that meant driving to Cheltenham (45 minutes each way) and back twice each day.

When she was discharged she required a lot of care at home. She wasn't even allowed to lift a kettle for 6 weeks. However, she was young and fit and was soon on her feet and regaining her strength. The first chemotherapy started a few weeks later, and like all the chemotherapy that followed, Clare coped extremely well with few side effects. Chemo sessions took a long time however, and she hated the seemingly interminable sessions in the treatment room. Due to the urological problems, Clare was initially prone to kidney and bladder infections, which when combined with the chemo's effect on the immune system meant potentially fatal problems. Several trips to the out-of-hours chemo doctor followed, and she spent New Year in hospital on intravenous antibiotics.

During 2013 Clare had a course of treatment with carboplatin and paclitaxel, followed later in the year by a course of caelyx. These merely kept the cancer at bay; she never went into remission. There was one bit of good news halfway through the treatment with caelyx. Some "hotspots" had disappeared, and one of the larger lymph nodes had shrunk by 50%. However, by the end of the treatment the cancer had reasserted itself, and continued its slow but relentless progress.

It was difficult. To start with, when Clare was due to visit her consultant I lay awake the night before, worrying about what the consultant was going to say. It was rarely good news. As time went on, my emotional walls strengthened. There was nothing I could do, so why worry? At least, that's what I told myself. Just go with the flow.

In January 2014 we were told that Clare's disease was terminal. That was a tough day, but like other tough days, I just strengthened my emotional defences and carried on. We didn't ask how long she had left, and in any case, the experts almost certainly didn't know. Clare was fit and well, so no point in dwelling on it too much. From now on, treatment was palliative, although that didn't stop us hoping for a miracle. A course of treatment with topotecan followed, but after that the NHS had run out of standard options. Clare was referred to the specialists at the Royal Marsden, and they agreed a treatment plan. Radiotherapy commenced in the autumn, to be followed later by another combination of standard chemo drugs. Once those two treatment options were exhausted, it would be down to the experimental stuff. Clare never got that far.

Up to that point, Clare had been relatively well, and had coped remarkably with the debilitating side effects of the chemotherapy. She had kept working whenever possible, and had enjoyed life as best she could. Five weeks of daily radiotherapy in Cheltenham was really physically draining though, and she was never the same after that. Nevertheless, we were able to celebrate our 21st wedding anniversary with a long weekend in Ambleside.

Then, in February 2015, we had some good news at last. The cancer was fairly quiet, and Clare's consultant didn't want to see her for three months, and Clare was elated. Sadly, I was unable to share her joy; the walls that were preventing me from sharing the pain were stopping me from sharing the joy too. Unfortunately the cancer wasn't listening to the consultant, and not long after that the cancer started metastasising, although we didn't know it at the time. Clare started suffering from increasing amounts of backache, and her resolve began to weaken. As her strength started to ebb, so did mine. It seems she had sustained me as well as herself throughout this process. I felt that the treadmill I was on had speeded up. I was running flat out just to stay upright and I desperately wanted to get off. But I couldn't get off. Somehow, I had to dig deep.

The situation got worse during April and into May. Clare was not sleeping well, and became depressed. The walls that I had built to protect my emotions started to spread. I was building a wall between myself and Clare, and preparing myself for her inevitable departure. I was becoming a carer rather than a loving husband. We were both undergoing counselling from St. Richard's Hospice, and I found it helped to talk things through. I strengthened my resolve yet again, and redoubled my efforts to support Clare both physically and emotionally. My daughter was taking her AS level exams to add to the stress. Something had to give, and I was forced to give up work.

And so the end game played out, and she was admitted to hospital. The cancer had spread to her lungs and liver. They tried to treat it, but she wasn't well enough for more chemotherapy, and she was transferred to St. Richard's Hospice. It was mercifully brief at the end, and Clare passed away peacefully in the hospice on the 2nd of July, surrounded by her loved ones. I felt relieved, almost elated that it was finally over. I went home and I slept soundly.

The next day the storm broke. Wave after wave of misery and despair crashed over my emotional walls. After 3 days, the storm subsided, and although I didn't realise it at the time, the walls had held. I busied myself with organising the funeral and sorting out Clare's affairs. Four weeks after her death, I returned to work, thinking that I was ready, after nearly 3 months away. I craved normality, or so I thought.

And then it happened. The walls finally started to crumble. After a week and a half I realised that I couldn't cope. I was in tears every time I left the office, and it was lasting well into the evening. My sleep, which had been disturbed for several months, was down to about 5 hours a night. I went to my GP, and he signed me off work.

That was nearly a week ago. Since then I've noticed that parts of the nightmare that have been the last 3 years have started coming back to me. I'm remembering things, and I'm crying often. I'm mostly OK when I'm with other people, but it's hard when I'm on my own. I don't know how long it will last, but I hope the cloud will soon start to lift.

I've read various things about grief on the Internet. I'm lucky, because there are many emotions I'm not feeling and I know I won't. I'm not angry, I'm not in denial. I'm even relatively optimistic about the future, although I will have to relearn how to be single, and how to enjoy things on my own. It seems impossible at present. I think perhaps that the whole process has left me deeply traumatised. I just want to get back to being me. Clare's cancer has defined what I am, and I feel that I haven't been truly me for several years now. Recently I've done some stupid things and made some bad decisions; however, I think when I eventually get through this I will be a better person, and will have a better view on what's important in life.

So why have I written this? Truly, I don't know. Perhaps forcing myself to recall the last 3 years has helped in a cathartic way; I hope so. In the unlikely event that anyone else reads this, maybe they'll understand me a little better. People have said a lot of nice things to me; about what a wonderful, caring, loving husband I've been. I really struggle to agree with that. I did what I had to do because I didn't have a choice, and quite a lot of it was really horrible. I don't feel that love came into it, although I loved Clare dearly. If anyone who is reading this is in a similar position to me, maybe they'll recognise some things and know it's not just them. I think it's OK to build walls, but my advice is don't make them too strong. I wish mine had crumbled a few more times along the way.

Finally, I'd like to end by thanking my family and especially my friends who've helped me (and Clare) get through this, and continue to do so now she's gone. Without you I'd be lost. Thank you.

 

 

p.s. I've deliberately not talked about Clare's feelings and emotions during her illness. I have enormous respect for the tremendous strength and courage she showed throughout. I must also add that there were many good times along the way, and I think the period around her 50th birthday was the highlight of both her and my life, and will take some beating.

Submit to FacebookSubmit to Google PlusSubmit to TwitterSubmit to LinkedIn