Living with the fear

Hilarious, I notice my last post was entitled ‘It’s been a while...’ well the same again really! So much to share and write about I almost don’t know where to start. This was me 12 months ago, it feels like yesterday.

I’ll start with the title of this post. Finishing active cancer treatment is strange. It’s not something that elicits euphoria, celebration or any such feelings like that. We go back to the things I’ve blogged about before; people don’t really know what to say or how to react. Instead of keeping stum they end up saying something that winds you up. Then you feel guilty for feeling angry or upset because you know they mean well and are just trying to be positive. The funny thing is you don’t feel so positive. Relieved, yes, not to have to go to hospital daily, turning up not knowing whether you’ll be in and out or sitting there for three hours. But certainly not ‘really happy’ or ‘ecstatic’ as some asked me.

You actually felt quite abandoned. I never knew what the next steps were i.e. how often I had to go back, what sort of follow-up I’d be offered, what to do if I was worried (believe me every pain, twinge, ache or unusual mark can send you into a tail spin) or what my future would look like. People started to ask so I had to ask.

Then you also feel guilty for NOT feeling ecstatic; you actually feel frightened and vulnerable and paranoid. Surely the point is you are ALIVE and not dead? Should you not be thankful and celebrating? You’ve been literally chopped up, pumped full of poison and zapped by radioactive rays. All of which have hopefully obliterated the tumour cells and any rogue stray cells but have also been catastrophic physically. Many of the bodily systems that worked OK have stopped functioning. No thyroid function, depleted Vitamin D, chemo induced menopause; to mention but a few. The body is in shock and will be for some time to come but psychologically you’re also exhausted and
I honestly felt like they had said ‘Ring the bell and now piss off’.

Looking at it logically, the sheer number of people receiving chemotherapy on a daily basis just at the day ward at St James’ Hospital numbered 70+. They don’t have time with overworked staff and under resourced services to give a toss about you once you’re ‘done’. Sadly though this is the time when you are most in need of that support and reassurance. Even though the daily grind of all the visits, appointments, waiting and uncertainty is exhausting, it’s like a comfort blanket as you have people to ask and question and rely on to support you. Those around you too then assume you’re OK and ‘better’ especially as physically your appearance starts to improve and you may even have hair!

Everything seems to have to be driven by the patient, but you are no longer a patient but someone who has been through cancer treatment. Does that mean you’re ‘cured’ or ‘in remission’? A question others ask and you ask yourself. The simple answer is ‘I don’t know’; I can only presume so. But those things are never said and any support you then need, counselling for example, is available but all has to be driven by you.

'You got some leaflets'.... I was told....When? During those early days and weeks when we were shell-shocked and like a pair of rabbits in headlights? Sean lying awake at night, wondering how he'll manage. Having read of how young children who have lost parents at a young age are irrevocably affected. Willing me to live until Joe is a teenager at least and the others are in their 20s so they can cope.

Thankfully I got to know a friend of a friend who works in the Cancer Support Services at the hospital, who I am now proud to also call a friend. Someone who has been an absolute rock for me and led me in the directions of the services I need. But what about those who don’t have this, or who aren’t eloquent or able to articulate what they need, what happens to them? And by the way feel free to replace the aforementioned attributes with talkative, stroppy and bloody minded!!

I attended a ‘Live with Cancer’ Day in November at Harrogate Convention Centre, about a month after finishing treatment which was very nerve wracking as I went alone. It opened many new doors for me and was very informative as to how we can help reduce the chances of recurrence. I got back into Pilates and was introduced to the wonderful LEAR fitness in Harrogate and their PINC classes...at the time for other women who've been treated for breast cancer (now more classes available for people recovering from other cancers too).

I listened to numerous people speak. Two of the whom really struck a chord with me but for very different reasons. The first was a guy called Andrew Graystone who has recurrence of prostate cancer and the second the Lead Cancer Nurse for Leeds Teaching Hospitals Trust. The Recovery Package at Leeds, as they're calling it sounds amazing and all encompassing but only exists in principle sadly right now, I am hoping this will eventually change. Hopefully I'll never know as I'm not planning more treatment anytime soon! Sitting there listening to the presentation they could be talking about any other hospital other than the one I had just been treated at. You can view the slides here.

The treatment and staff who administer the treatment are amazing and so supportive giving you as much time as you need and they're fast, so fast; no waiting hardly for scans, results, pre-ops or surgery. It's the after care, or lack of that's lacking. How are you supposed know whether a pain is worrying, who do you ask and how long do you wait until it really could be a problem? These are the things you need guidance on. And yes I have fed back about small realistic improvements they can make that don't cost the earth but would make a huge difference to patients. The main issue, as with most big organisations, is communication or lack of. Mixed messages and sometimes too many 'fingers in the pie'.

I could really relate to Andrew, here are some quotes from his presentation that I could REALLY relate to:

"I didn't feel like a victim and I didn't choose to be a hero"

"(cancer) is like an unwelcome visitor that (rudely or abruptly) interrupts every conversation"

"I don't want to fight cancer I want to live well with it and live better without it"

"I'm not defined by my cancer but I just want to learn to live with it and eventually kiss my cancer goodbye."

You can listen to one of him speak here, the first time he had cancer

Oh yes the F word, not the one you think I might add, but FIGHT. No other illness is ever referred to in this way other than cancer.  People don't say when you've had a heart attack or pneumonia 'Oh you must keep fighting', so why? I think the reason it annoys me the most is that if someone dies of cancer despite, whatever the circumstances; whether they've tried everything possible or just decided not to put themselves through the gruelling treatment and feel so ill from that, only to gain a bit more time. That the implication is that they didn't try or 'fight' hard enough and therefore failed, it's nothing to do with that.

Another very interesting area of research I was introduced to at Harrogate was the role regular physical activity can play in the prevention of cancer. I am the type of person who is proactive and knowing that my type of cancer has about a 35% chance of recurring in the first 3 years I wanted to do everything I can to try and prevent this.

Thankfully as my specialist area is physical education I didn't need much convincing to exercise regularly! Despite my knowledge I was absolutely amazed to find out that regular physical activity (now don't panic, I'm only talking about National Guidelines - 150 minutes of moderate physical activity per week, even in 10 minute bouts) can help reduce the risk of not only recurrence by 40-60% (yes you read that correctly!) but actually getting cancer in the first place, especially breast and colon cancer. Unbelievable eh? And the evidence is conclusive. Read more about it here. And if you want to read some of the research itself click here

Not surprisingly other factors include all the other aspects that we all should adopt but struggle to stick to! Healthy diet and very little alcohol, in actual fact NO alcohol. Again I don't know why I was at all surprised to hear this but I listened to a presentation informing us all bottles of alcohol will soon carry the warning label 'Alcohol causes cancer'.

So despite adopting ALL of these things, which I have, as well as going on a clinical trial using regular aspirin to try to help reduce the risk of recurrence there is always an underlying anxiety. Will the cancer come back? How will I know? Already since finishing active treatment last Autumn I have had 3 'scares'. The first being the week I finished radiotherapy and finding some lumps in the reconstruction area. Being told after Ultrasound that I probably needed a biopsy. You're suddenly plunged back into that world of head spinning questions and what ifs? Thankfully it turned out to be necrosis from the reconstruction.

Then before Christmas my blood test results (liver function, sex hormones, thyroid, blood sugar etc) were all so awry I had an emergency appointment with oncology the following day and the GP had me in a total panic suggesting I needed a head CT as something may be going on 'higher up' I was non-plussed, then to be told it was a brain scan. Only a month ago my persistently high liver function tests had them sending me for a bone scan, when I questioned what that had to do with bones I was told it was an indication of disease i.e. cancer in the bones. Another nerve wracking wait for the scan and the results; it was clear. Thankfully. However much you tell yourself it's great they're so on the ball and I'm high on the radar. Or another of your consultants says 'given your history no one wants to be the one to make a mistake'. It's hard, really hard to travel this roller coaster ride, thinking at any time you may be plunged right back into that world of uncertainty and agony.

How do you live with 'The Fear' as I call it? I don't know. I keep asking myself and other people how? No one has an answer, even though they may have been or are going through it themselves. I guess it may get easier with time, I'm not sure and will have to see.

I'm not worried for myself if it does come back, I know I can survive the worst treatment, butchering and the most terrible agony anyone could ever go through and rebuild my life afterwards. I'm scared for my family, especially my husband and children. Just when they are beginning to come out the other side of this dreadful nightmare. I dream about it coming back and having to hide it from them.

Who knows what the future holds? It's probably a good idea that we don't know. If nothing else my experience is a reminder to enjoy the moment and live for today.