A Couple of Tips

Here’s a tip. If at all possible, schedule your radiotherapy for the mornings. The drag about having all my radiotherapy appointments in the late afternoon is that delays often pile up throughout the day. They keep me waiting for nearly an hour today. I top up the pay by phone parking three times. To pass the time I play pinball on my iPhone. I switch the sound off so that the receptionist and the other cancer victims can’t tell that’s what I’m doing. Then I forget to switch the sound on again so I miss loads of calls.

Tomorrow is an important day for me. I’m going to see Mr Hadjiminas to talk to him about Tamoxifen. Because I have several appointments back-to-back, Jamie offered to drive me to and from the hospital. And because I get all tongue-tied and forget to ask important questions and then forget to write down the answers, Wanda offered to accompany me to the appointment with Mr H. Whilst playing silent pinball today I miss two calls and receive two messages. The first from Jamie telling me that his car needs three new tyres, so he won’t be able to drive me after all. The second is from Wanda telling me that she has been called back for an acting audition, so she won’t be able to accompany me after all. Oh well.

Here’s another tip. Don’t deal with the Department of Work and Pensions yourself. Their aim is to have one pulling a plastic bag over one’s head or leaping from an upper floor window as swiftly as possible. It’s a cynical strategy to reduce the numbers receiving sickness benefit. They don’t care if they have to employ four people full-time to harass one night and day with multiple letters and endless paperwork. One of the readers of this blog, Lesley, wrote to tell me that the DWP obliged her to attend a “back to work” interview whilst she was in the middle of chemotherapy. When she dragged her ill and exhausted self down to the Job Centre they told her that she didn’t have to do the interview after all. They tried the same trick with me but I refused to go. Apparently the DWP are pulling this kind of malarky all the time nowadays. It would be laughable if it weren’t grotesque. The fact is that this kind of nonsense puts real people’s real health and wellbeing in jeopardy.

Anyway, my advice to you is to get an advocate to deal with them on your behalf. The people at the MacMillan Benefits Helpline* are brilliant. Kerry from MacMillan called me this morning to tell me that someone from the DWP had finally got in touch to tell her that the fifty page form that they sent me last week was all a big mistake. You may recall that when that one landed on the doormat it provoked a near-hysterical meltdown from me. Anyway there is no need for me to fill it in. Furthermore they will now address themselves to the issue of my mortgage interest payments – after only three months of doing nothing on that front. So why did they send the fifty page form in the first place? The French have a word for it: “boh!”

*0808 801 0304

Quick Catch-Up

As I write this Nick is landing in Sydney.

Last night I said goodbye to Nick at Paddington then stood on the platform watching the Heathrow Express slip away westward. I thought that I might cry but I didn’t. I have learned that crying often happens when I somehow feel that I’m being deprived of something. But I know that I will see Nick again. And quite soon really.

Being with Nick has taken up a lot of my time and attention. I’m alone again. It seems like a good moment to catch up on where I am with treatment and future plans.

Money continues to be a worry. But so far, everything has worked out somehow or another. So perhaps I should desist from worrying. It doesn’t contribute anything to the situation. I feel compelled to tell you that the Department of Work and Pensions (DWP) have been unfailingly unhelpful. Since the beginning they have bombarded me with paperwork. Last month I received seven separate letters from them in a two-day period. Last week they sent me a fifty-page form asking me for all the information that I have already given them. They assessed me as fit for work when I was recovering from surgery and having intravenous chemotherapy. I have had to fight them every step of the way for my benefits and it has been exhausting. Six months of illness has generated a file of paper three inches thick. Each of their mad missives necessitates a telephone call, a long period on hold, an inane conversation with yet another person who doesn’t know what they are talking about and cannot help and finally a wait of indeterminate length until someone more qualified calls one back. Or, sometimes, does not. During that time one cannot leave the house nor even use the phone for fear of missing the call and having to start the whole hellish process over from the beginning again. It is not the kind of help one needs when one is ill.

The Inland Revenue, by contrast, have been marvellous. In July I contacted the Inspector of Taxes to explain my situation. After waiting three months I received a letter in reply. The inspector informed me that, as a writer, I am able to spread my earnings over two years. Thus, at a stroke, I halved my tax bill.

When the chemotherapy ended I thought I was fine and fit as a flea. With hindsight I can see that I was actually quite sick and very weak. In the past week or so I’ve begun to feel stronger, although immensely tired. Yesterday was my twelfth radiotherapy session, out of twenty-five. So I’m nearly halfway through. Since I injured my back a couple of weeks ago there has been quite a lot of fluid collecting there. I’m quite distressed about that. It feels like I’ve taken a step backward. Parts of my arm, back and breast are still numb following the surgery.

On the whole I’m really pleased with my progress. I tolerated the chemo very well. Although I felt sick and all my hair fell out, I did not have to be hospitalised at any stage. As previously noted, my hair is growing back rapidly.

The radiotherapy is really causing me very little bother.

My concern now is whether or not to take Tamoxifen. This is such a big and complex issue that I’ve been avoiding writing about it. Every day I change my mind five times before breakfast. I am swayed in one direction then the other each time I read something new or get another opinion. However, I am gradually marshalling all the information I need to make a decision. I will soon write a long piece dedicated solely to Tamoxifen and tell you everything that I have found out.

In the meantime I think about what else the future might hold. It's only twenty-six more days until I leave for Australia.

Anxiety Busters

I had hoped that the end of chemo would coincide with the end of my worries and cares. What with everyone going on about how radiotherapy is such “a walk in the park” and so on I had imagined myself and my slightly pink breast, bathed in rainbows, tiptoeing through the tulips hand-in-hand with Nick, pausing here and there only to pluck a fresh chocolate éclair from the trees.

So I’m a bit surprised to find myself regularly breaking down in tears with Nick having to calm my frenzied bouts of anxiety. Of course money is always a worry for anyone dealing with a serious illness. Those of us who are self-employed don’t even get sick pay. Social Security payments won’t cover the cost of organic groceries, let alone health insurance, home insurance, petrol, parking, new roofs, clothes, phones, broadband, Hermès scarves and a thousand other daily expenses. So, like many people, I’ve borrowed and gone into debt to get through. I am very lucky that my sister Miranda has been able and willing to bail me out.

Another source of anxiety is the prospect of long-term side effects of the various cancer treatments. A quick google will throw up endless opinions that both chemo and radiotherapy cause other illnesses. Many of these are simply scare stories. God only knows who originates them and for what possible reason. But then there are solid concerns too. Last week I read about long-term side effects of radiotherapy on the website of Cancer Research UK. Apparently it can cause fibrosis that leads to hardening and shrinking of the breast. It can also trigger Lymphoedema.

I was quite taken aback. I feel as though I had not been fully aware of these possibilities. I don’t know how commonly it happens. Tomorrow I will be seeing Dr Coulter, my temporary oncologist so I will be able to find out more and report back to you.

But it was enough to start the little hamster of anxiety running on its wheel. Pretty soon my mind has worked its way around to the big looming unknown: Tamoxifen. When it comes to this drug, opinions are polarised. According to Suzy Cleator, Tamoxifen is the most important treatment for Oestrogen Receptor positive breast tumours (the type that I had) after surgery. Many in the medical profession swear that it’s a wonder drug that has changed the outlook for breast cancer sufferers. According to many in the alternative camp it is a destructive and misogynistic treatment that wicked drug companies have sold to credible doctors for their own greedy ends.

The inescapable fact is that Tamoxifen is known to cause blood clots, strokes, cataracts, hot flashes, headaches, fatigue, nausea, vomiting, dryness of the vagina, itching skin, rashes and cancers of the uterus. I still have a lot to find out and a lot of questions to ask. But I sometimes feel that I will inevitably have to make a decision between a disease that may kill me and a drug that may kill me.

The thing that really gets to me sometimes is that a few months ago I was told that Mr Hadjiminas had completely removed the tumour from my breast. The more I learn the greater seem the risks associated with what I had understood to be a ‘belt and braces’ approach.

I’m telling you all of this because you too may be feeling anxious about chemotherapy, radiotherapy or Tamoxifen. You are not alone. I will write more on the matter in the future. But even those who have studied and researched for many years disagree. We simply must do our best to inform ourselves to a point where we feel comfortable with whatever decision we take and then embrace the unknown. In the end, there are no wrong decisions.

Although the situation is disquieting, indulging worry and fret makes no positive contribution. On the contrary, it increases our stress levels. Here is a roundup of all the different techniques I have used for alleviating anxiety.

Breathing. This is obviously a good idea, yet I forget to do it. When anxiety strikes I find myself all tangled up, holding my breath or breathing out when I should be breathing in and then gasping for air. Then I remember to take a minute or two just to calm myself with controlled breathing. Count slowly to four then breathe in for a count of four. Hold your breath for a count of two. Breathe out for a count of four. Hold your breath for a count for two. Breathe in for a count of four...

Singing. No need for talent, just grab a hairbrush and put on an Abba cd. Dance around the living room warbling, wailing and screeching your head off. It creates harmonious resonance in the body and floods the lungs with oxygen. Singing in the car is a fantastic stress buster.

Crying. Don’t hold it in. Go to see a weepy movie and have a good old cry. I always keep a pocket packet of tissues in my handbag these days.

Walking. Don your trainers, or socks-n-crocs if your toes are sore, then hit the streets. Walk slowly and with a rhythmic pace. As you walk try to simply release any thoughts that come into your head. Use this simple mantra: "let go". Think l-e-t as you breathe in. Think g-o as you breathe out.

Yoga Nidra. Put some dolphin music on if that’s what floats your boat. Or Mozart. I listen to a wild soundtrack called ‘Wind and Rain’. Lie on the floor in Savasana. That is on your back with your legs apart, your arms resting palms up at about 45 degrees from your body, your neck extended and your chin tucked in slightly. Savasana literally means ‘corpse pose’. Begin to breathe regularly from your diaphragm. Close your eyes and as you breathe bring your attention to your third eye, the place between your eyebrows. Now say your Sankalpa out loud, three times. Sankalpa is something like a positive affirmation. This is my Sankalpa: “I am happy. I am healthy. I am whole. I am sexy. I am prosperous. I am loving. I am loved. I am FREE.” Next scan your body, checking for any tension or contracted muscles. Start with each finger on your right hand, the palm, the back of your hand, the forearm, the elbow, the upper arm, the shoulder, the chest, the side, the waist, the hip. Repeat on the left side. Next scan each leg from the toes upward, in turn. Scan your spine, neck scalp, ears, face and throat. Relax any areas of tenseness that you feel. Next, imagine your body to be very cold, as if standing in the snow in bare feet, then feel your body to be warm, as if sitting on a sunny terrace. Then feel your body to be very heavy, sinking into the floor. Then light as a feather, hovering above the carpet. Next, imagine yourself walking in a lovely place – somewhere that is special to you. Feel the earth beneath your feet, the breeze on your face. See the sunshine, smell the flowers. Find a comfortable rock beneath a tree with a wonderful view of your world. Now repeat your Sankalpa three times again. Bring yourself back to now by wriggling your fingers and toes and then having a lovely stretch.

Oh, there are lots of strategies but I’m tired now. That should be enough calming measures to keep you and I both sane for today. More later.

Rise and Shine

People tend to think that staying in bed all day is one of life’s luxuries. But it’s rubbish.

Today has been grey and drizzly so there wasn’t really anything to get up for. And what with the sore toes, nosebleeds, a tongue ulcer and general fatigue, nothing seemed like much fun. I decided to indulge myself. “I don’t have to get out of bed,” I told myself. “no-one can make me.” Cousin Ben brought me a cup of tea. I looked at him with a plaintive face, ready to defend my sloth but he didn’t try to cajole me out of my nest.

After Ben leaves I spend a few hours sleeping. This sleep is really additional to requirements. Rather than being soothing and refreshing it is the kind of sleep where one tosses and turns and has dreams about school and piles of unfinished paperwork.

The telephone wakes me up, all bamboozled. It’s Seraphina. She offers to come over and help me to do some paperwork. How generous. I fall asleep again. Next thing I know she’s ringing the doorbell. I pull on a tattered cardigan. Seraphina has brought soup from the Grocer on Elgin, a most stylish food shop where all the food is packed in vacuum-sealed plastic pouches. I imagine that this is what one might eat on a voyage to Mars. She heats up the minestrone. Not only is it space-age, it is yummy too. I slump on the couch in my pyjamas with pillow marks on my face and a blanket wrapped around me, slurping a bowl of soup. I’m kind of glad that Nick isn’t here at this very moment.

Seraphina writes a letter to send to the Department of Work and Pensions, appealing against their assertion that I should get a job. She encloses yet another doctor’s letter, this one from my oncologist, confirming once again that I have been diagnosed with cancer and that I am not well.

I would say that having to have so many fights with so many inhumane and just plain insane institutions is far more dispiriting than the effects of the chemotherapy ever could be.

From day one the DWP have taken the attitude that I may try to fool them into believing that I have cancer but they are not falling for that old trick. I am obviously a fraudulent, work-shy malingerer. Further, they believe that all my doctors are in on the deception too. They feel sure that some sub-contracted work-experience pen-pusher is better qualified to assess my medical condition than a whole fleet of eminent surgeons and oncologists. And that they can do so without ever examining me or even speaking to me. Should I disagree with them they will make sure that I pay for my impudence by forcing me to fill in twenty-six page forms, read meaningless and convoluted letters and wait in for telephone calls every day from now until it’s time to begin filling in the claim forms for my old age pension.

Next, Seraphina has a crack at the leaning tower of filing. She manages to wrestle a few pieces of paper from its clutches and slide them into various folders. In the end the filing mountain wins the battle but I give her points for tenacity and spirit.

As Seraphina puts on her coat I wonder why I’m crying. I finally have to admit that I find it incredibly difficult to ask anyone for help. And even if help is freely offered, I feel guilty. It’s as if I must do everything myself or I won’t be able to justify my existence. I feel that somehow I don’t deserve other people’s generosity. I realise that I’ve always felt like this, deep down.

I’m telling you this because you might be feeling the same way as me. Flossie says that, far from being noble, refusing help amounts to a rejection of those who offer it. No matter what we feel, that is a very ungenerous and mean thing to do.

Tomorrow I’m going to rise and shine and say “yes” to whatever comes my way.

One Might Hang Oneself If Only One Had the Energy Left to do So

There is no short or simple way to write this...

In order to qualify for a free wig I need a letter from the Department of Work and Pensions confirming that I am in receipt of income related benefit (whatever that may mean). After many phone calls; being put on hold; being told different things by different people and waiting days for somebody to call me back I turned to the Macmillan benefits helpline for help. I spoke to Jo, a benefits advisor. Jo spoke to the DWP. A young man at the DWP promised Jo that he would send me a letter confirming that I am receiving income related benefit. I, in turn, promised to present that letter to the surgical supplies department at St Mary’s hospital to prove to them my entitlement to the wig that I have already had.

That last bit was about two weeks ago.

For those of you who have just joined this blog – don’t ask. You’ll never understand the benefits system in a million years. I don’t understand it. The advisors at the Macmillan benefits helpline don’t understand it. Even the people at the DWP don’t understand their own rules and cannot give one a straight answer about anything.

I call the Macmillan benefits helpline again. This time I speak to Min. She listens to my long tale. “What does it say in the original letter that they sent you?” asks Min. I riffle through a very long letter. On page 4 it says “... We call this contribution-based and income related Employment and Support allowance.”

“I think that means you are on contributions-based benefit,” says Min. “Howd’you figure that out?” I ask, perplexed. “It says ‘contribution based and income related...’ Does that mean I’m getting both?” “No,” says Min, “it probably means you are getting contributions-based allowance.” “You might think that’s what it means Min,” I reply, “it is not clear to me, neither is it clear to the chap at the DWP to whom your colleague Jo spoke a couple of weeks ago. That chap promised to send a letter confirming that I am in receipt of income-based benefits. I have been waiting for that letter because I need to take it to St Mary’s to prove to them that I am entitled to a free wig.

“If you’ve paid your stamps then you would be receiving the contributions based benefit,” Min opines. “Does that mean I can get a free wig?” I ask. “No.” says Min, “you have to be on income-based benefit for that.” “So, because I have paid my stamps I am not entitled to a wig?” I ask. “Yes,” says Min. “Whereas if I had not paid my stamps I would be entitled to one?” “That’s right,” confirms Min.

I can tell that both Min and I are doing our best not to sob out loud at this point.

“Well,” says Min, “I will send you some HC1 forms to fill in so that you can claim a wig on the basis of low income in case you are in fact receiving contributions based benefits. “But I don’t want to fill in any more forms Min,” I say in a hopeless tone. “Are you receiving any help with your housing costs?” “No,” I reply, “I haven’t filled in the forms for mortgage relief because I have a great fear that the Abbey will penalise me for claiming benefits by offering me less favourable mortgage terms in the future. The repayments are very low at the moment so I thought I would borrow some money from my sister and just tough it out.” “But you have to be receiving help with your housing costs in order to establish that you are on a low income.” “But I have already established that I am on a low income. The DWP asked me to send them six months worth of bank statements and financial records. They know I’ve got no money,” I wail. “Yes, but getting help with your housing costs is the trigger,” says Min. “Min,” I plead, “do we have to go through all this hoop-la again? They already admitted to your colleague Jo that I am receiving income based benefit. Now we just need to get them to do what they promised and put it in writing.”

“I will call them,” offers Min. “Thank you Min,” I sigh, untying the rope from the shower rail.

***

The telephone rings: “Hello Miss Lily, this is Min.” I’m holding my breath. “The DWP are going to send you a letter confirming that you are receiving income related benefit.” I exhale. “And they are already paying your mortgage,” says Min. “No they’re not Min,” say I, “I haven’t filled out the forms.” “Well they are paying £18.29 per week towards your mortgage interest.” “But Min,” I protest, “my mortgage interest is more than £18.29 per week.”

“I will call them,” says Min.

***

Min calls: “Hello, Miss Lily. The DWP confirm that they are paying £18.29 towards your housing costs. I can’t tell you exactly what it’s for. Best you fill out those forms. You need to claim all your benefits when you’ve got cancer." Min is right. I have a deep fear of filling in forms. My loathing for bureaucracy and my shame at having to claim at all conspire to keep me half out of the system. I’m not claiming what I am entitled to. “I will Min,” I say, contrite.

“They also confirm that you are receiving £25.50 a week because you are in the Work Related Activity Group.” “And what does that mean?” I ask. “It means that they expect you to get a job.” “But Min,” I reason, “I’m sick. I have told them so. My doctor has written to them and told them that I am undergoing chemotherapy for breast cancer.” “Did your doctor state that the chemotherapy was intravenous?” asks Min. “She didn’t specify that it is intravenous. But, as far as I’m aware, all chemotherapy for breast cancer is intravenous.” “Nonetheless, you’ll have to get a letter stating that your chemotherapy is intravenous then write in and make an appeal.”

I don’t even know what to say anymore.