I am crowned queen and then it all goes wrong…

Having cancer brings opportunities that maybe wouldn’t normally be available or even on my radar. The henna crown came up a while ago and then was snatched away at the last minute when the studio already had a model. Being me, I think this is because they see a photo of me with my Cushingoid face – ie, swollen and puffy with a charmingly named Buffalo hump at the back of my neck. However, I am delighted to be wrong and receive an email from Soo at the Ash Kumar studios offering me the opportunity to have a henna crown after all. I am very excited. I have looked at images online and they are stunning so the opportunity to have one for myself is very tempting. It’s an early start on an industrial estate in North Acton but we pitch up early and arrive before the staff, so excited are we. It is an amazing experience. The henna artist is a lovely woman called Shafeena (I hope I have spelled that correctly) who has come all the way from Canada, although not just to see me. She is an obstetrician in her daytime job and, miraculously, has not only heard of Inflammatory Breast Cancer but knows stuff about it. She knows it is aggressive and tells me it is the worst breast cancer to have. She knows about the effects of bloody steroids and other drugs. It is impressive, especially as I am not sure doctors in the UK learn about it during their training. So not only is Shafeena slim, beautiful and intelligent but she does a beautiful job with the henna crown. I am seated comfortably on a sofa with my back to the mirrors so I can’t see what she is doing. There is discussion about the design which she has created especially for me and then she begins the process which is not ticklish or cold.  I am surprised to hear she is going to use glitter on the crown as all those I have seen online have been plain. I have no idea what it will look like but can tell from Mr Mason’s face that it is going well. He takes lots of photographs on my phone of me in various stages of completion. We have to wait a while before I am unveiled as Mr Kumar himself is going to come to the studio and my lovely henna artist is keen for him to see her work. For those who haven’t seen it yet, here is a Henna Crown selfie.

Henna crown selfie Ash Kumar 2 Henna crown 5 Henna crown 4 Henna crown 3 Henna crown 2 Henna crown 1

It’s a fabulous piece of work and I would definitely have it done for a special occasion. Many thanks to Shafeena for such a beautiful job.

I then had a surreal conversation with a Post Office clerk. I had all the paperwork to get my Freedom Pass so took it to the Post Office as required so they could send it off. I had to take the usual proof of address and identity so took my passport and a letter from the Department of Work and Pensions. The lady behind the counter says the letter will not do because it is not about a pension. I tell her I do not have a pension. She bangs on for ages about how it is the Department of Work and Pensions and I tell her that is illogical because you might as well focus on the word Work which, coincidentally, is what the letter is about. She is very cross and asks why I don’t have a tv licence to show her. I explain tv licences are not paper any more. I explain also that the letter, regardless of its content, proves my address. She consults with her colleague who agrees they will not accept the letter. I find it hard to argue with illogical people but I stand my ground and eventually, to teach me a lesson, the assistant decides to phone head office and embarrass me right on the spot by showing me how wrong I am. She explains the letter over the phone, emphasising the word pension which she is obsessed by. Her face gradually twists to simulate one sucking a lemon as her senior head office colleague tells her of course she can accept the letter – it is just to prove address and the content is immaterial. She retaliates by calling me ‘darling’ repeatedly during the rest of our interaction.

On Tuesday I go to a meeting in Victoria. Firstly I have to get in the taxi and these days, they always seem to send a people carrier. This I cannot climb into any more. My legs are too weak and Mr Mason watches on while the Polish taxi driver gives me his arm and helps manouvre me into the back of the cab. During the meeting, I write more than usual and find my hand feels paralysed in my small and ring fingers. In fact, I find it hard to hold a pen at all and even eating presents a few problems. My walking is a bit stumbly and I definitely need the stick for propping myself up. When I get home, I try my laptop and for the first time in years, I can’t touch type as my stupid fingers won’t do what I want.

On Wednesday I go to see the oncologist and ask her about my hands. The soles of my feet are also fairly numb which lends itself to some good stumbling moments. We know it’s the Paclitaxel but we don’t want to reduce or stop it so I get prescribed some drugs which may or may not help with the numbness. After the appointment I head off to the remainder of my meeting in Victoria and, once I find a cab have to be hauled in by the cab driver. Sigh. I arrive just as the meeting breaks for lunch which is pretty good timing except when eating a plum, I break my front tooth. This requires an email to my cancer nurse specialist as dental work is not really allowed on chemotherapy but with the big trip to Thailand happening next week, it is essential  I get the remedial work done asap. Sigh. So easily I slip from one crown to another.

Who is that nutter? Oh, it’s me

Having cancer is a bit like having a rubbish job where you have meeting after meeting and no time to assimilate or get on with other work. The good thing is that there is sometimes time to see friends and skip off to a greasy spoon for a big breakfast which is what we do with my friend Ms Wengraf, milliner extraordinaire. I find she has had her hair cut into something resembling an urchin/elfin creature and looks stunning. It really suits her, as does the wonderful coat she has acquired through dubious means. We stuff our faces with bacon, black pudding and hash browns and thoroughly enjoy ourselves. But we then have to rush off to St Mary’s Hospital to see the psychologist who agrees we can stop seeing each other. Since coming out of hospital after the September Fiasco, I feel emotionally very well although physically still weak. My right hand and foot have patches of numbness and I wonder if there are other numb areas within my leg which cause the incredible weakness. Climbing stairs still presents a real challenge which I thought I would have overcome by now. Talking to the oncologist, she explains the steroids cause muscle weakness in my arms and legs which also explains why I can’t put my arms fully over my head or scratch my shoulder (such an agony, only relieved by Mr Mason under strict direction).

My voice is still weak and weird. The vocal chords are paralysed on one side (have I said this already? Blame it on the chemo brain) so I will have an operation to insert a widget (my word) into the cartiledge in my neck which will give me my full vocal range back but we are going to do this when I get back from the wedding. Operations and flights don’t seem to go well. Thinking about the possibility of draining fluid from my chest, one of the registrars mentions that surgery done recently can suddenly pop open under pressurised cabin conditions. Hmm. Not something I would like to happen so we decide to postpone it. While out recently without supervision from Mr Mason, a rare event, I receive a phone call from the estate agent and phone home to let him know. He is also out and I leave a message on the answerphone. Later on when I get home, I look at the answerphone and press play to hear the messages. The first message I can understand. The second message is quieter and rambling and appears to be left by a nutter who is incoherent and babbling. After listening to it three times and increasing the volume, Mr Mason appears at my shoulder and says “You do know that’s you, don’t you?” My voice is so unfamiliar and quiet I don’t recognise myself. It’s a bit like seeing myself in the mirror. I nearly always do a double take, so regal and Henry VIII is my face. This has caused disagreement and even disappointment for some, like Ms Frumin who visits us yesterday and feels I have over-sold my Holbein features. You just cannot please everyone.

This week has been an important one in terms of tests and staging. On Monday I have a CT scan which actually goes well. The canula goes in first time and the appointment is early which allows us to go and visit the Mason in-laws. This is a tricky visit as we are trying to persuade Mrs Mason senior to have a flu jab. She is resistant to all suggestions and there are obviously health issues which I won’t discuss here which need attending to. It is a challenge to get anything done because the default position is always NO. However, we make some progress when both Mr Masons call the GP and it appears something is going to be done so we drive home slowly through the pouring rain.

On Tuesday, I have a ‘fit to fly’ test booked at Hammersmith Hospital. I have no idea what it involves but find out I have to wear a tight mask, like a pilot’s, for 20 minutes in reduced oxygen to see if my sats are good enough. The mask is quite claustrophobic and the technician has to take arterial blood from my earlobe 3 times during the test which involves smearing it in Deep Heat and then cutting it with a scalpel. Happily, my sats don’t fall below 84 which means I will not need oxygen on the flight. This is incredibly cheering as it wasn’t long ago even making the flight was uncertain. Following this, we decide to go and get our eyes tested. Oh yes, we know how to have fun. Chemotherapy is not good for the eyes. It stiffens the retina and I have been having problems with reading and even watching tv at times. The bossy woman who was there a year ago spots me immediately. She is obsessed with designer frames while I have no real interest in who designed them as long as they look good. After my eye test, one of the assistants comes to help me. With surprising speed, the designer-obsessed assistant intercepts her and says she is going to help me as she did last year. Oh, here we go. I am looking at frames which appeal and she is straight onto the designer frames. She tells me I like designer frames while I say quite forcefully – well, as forcefully as someone whispering can – that i don’t care at all about designer frames. She clearly blocks this out and determinedly looks at all the designer stuff she can lay her hands on. She is determined to know me so well she tells me what colours I like and what sort of arms my glasses should have. Sigh. I try to plough through designs I like while she shoves endless designer pairs in front of me. Eventually, she finds a Gok Wan pair I actually like so I choose those together with another non-designer pair. Actually, everything is designer because it doesn’t just appear magically fully formed. And the idea that Gok Wan actually sat down and designed these particular frames is really quite unlikely, I think. Anyway, i like them and then have to go through the eye-watering process of seeing how much everything will cost. But at least I will be able to see.

Today I see the oncologist to get the results of the ct scan. The nurses in the clinic are lovely and I receive at least one kiss and hug. Even the receptionist seems to know my name which I find amazing with all the patients who pass through. I need to be away early as I have a meeting at the LSE at 1pm and despite my appointment not being until nearly 11, they are on board and hurry me through. The report doesn’t seem to be with the scan pictures but the oncologist looks through them and says she doesn’t think it is as bad as before. It’s hard to tell as there has been no consistent chemotherapy but as there is no increase in the fluid in my chest and my sats are good I take it all as a good sign. And I look and feel so much better than I did on oral chemotherapy it’s hard not to be optimistic. So, until anything else turns up, that is exactly what I am going to be.

Chin envy

People all around me have chins. Nice, defined chins and necklines and they have mouths which are normal sized. Oh, and a lot of them have hair. On steroids to help my breathing, my face is swollen like a balloon. I receive a copy of a letter from my consultant to my GP in which she says my face looks ‘Cushingoid’. I look it up and it’s not a pretty description. Steroids choose which bits to inflate and they include my torso and feet which resemble 2 little pig’s trotters. I appear to have lost my ankle bones. So I envy those with neat chins, hair and ankles. This represents an awful lot of the population.

Following the horrendous events of September, I feel much better. I am weak – going up and down stairs is still difficult and getting in and out of the car and the shower requires a lot of concentration – but I actually feel in a really good place emotionally. I have my trusty wheelchair which Mr Mason is in charge of pushing. He is a little on the kamikaze side and I have scars on my shins to prove this. In shops we are a little like Lou and Andy. I still can’t speak loudly and Mr Mason pushes me around while I wave my hands and try to make him stop. I am getting quite adept at moving myself around so when he leaves me in one aisle while he goes off to source something, he returns he finds me gone. What a little minx I am. The chemotherapy, although stopped, is still making itself felt. My skin is starting to detach itself as though I have bad sunburn. My legs are actually sore and I can only wear soft clothing. A few of my nails are also making a break for it, deciding they would like to detach themselves and start a new life elsewhere. They bleed and are sore, needing constant moisturisation. The soles of my feet are numb which makes putting shoes and boots on a bit of a challenge. The palms of my hands are also a little on the numb side but I am assured all these effects will decrease and cease altogether in time. This I look forward to.

On getting home from hospital, I find I have broken a tooth. Dentistry is not compatible with chemotherapy so I am in a hurry to get a crown or something to seal the tooth off. Suddenly, there are lots of things I have to do. My eyes are worse so I think I need a new prescription for glasses. Chemotherapy stiffens the lens which will never recover. When I am tired, I can’t read and even the tv looks blurry. But I have lots of visitors which is lovely. Suddenly I feel more sociable and people turn up for coffee and entertain me for an hour or so. My diary is full of appointments and work which I intend to try and continue with. The ENT consultant is still keen to put a little widget in my neck which will help with my vocal chord paralysis and give me my voice back so I have a pre-op appointment to see if I am fit enough. It is a general anaesthetic so it’s touch and go whether I can have that or not.

I have been very excited about having a henna crown. A friend who is organising the fabulous woobs exhibition says she knows someone who is looking for a model and I am put forward. On Friday I hear they already have someone but ask me to send a photo and a phone number and they will see if they have time to do another on the same day. After I send the photo, I am told they don’t have enough time. Hmmm. Could this be the curse of the steroid Holbein face? I try to persuade myself this is not the case and they do say I am top of the list for the next one they will do for their charity work. I am officially disappointed, though. They are beautiful and I am wondering if I could get one done before the wedding as an alternative to a ‘mother of the bride’ hat (which I am not going to wear anyway). I will have to investigate although the amount of work involved probably means it will be an expensive acquisition. But it might be an antidote to the Holbein Henry VIII look – I can’t imagine Henry ever indulging in such a radical look.

New moves

So, I am back. For the last month I don’t feel able to blog. My head is full of stuff and my body feels as though it is losing the plot. Following the original chemotherapy which leaves me unable to breathe and speak at the same time, I am given an oral chemotherapy. This makes me so ill I really feel I am going to die. After 2 weeks of treatment, I ask Mr Mason to take me to hospital. The faces of the consultant and other doctors makes me realise I am very ill. I am admitted to hospital where I stay for 5 days. My potassium, magnesium and sulphates are through the floor and in order to give them to me more quickly, I am taken to the cardiac ward where they monitor my heart and pump gallons of stuff into me. My heart has become a problem. The lower chambers of the heart are taking too long to recharge which is a problem. Every drug I am on is withdrawn and has to be checked against an ECG before it can be re-prescribed. My pain relief for fibromyalgia is withdrawn and for 2 days I am in constant pain until it is reinstated. After 2 days of infusions, I hope I can go home. My potassium level suddenly and unexpectedly drops and I am put back on infusions and an ECG in the middle of the night while the medical staff look worried and puzzled. I am finally discharged on the Friday evening which is an enormous relief. After 3 weeks of feeling incredibly ill and genuinely thinking I might die, I am home and feeling better with all chemotherapy stopped. I feel I am a different person but in a good way. Tears are not far from the surface at any point but again, that seems normal and is taking care of all the horrible stuff that happened last month. We spend time at our women’s group at Maggie’s talking about sobbing. It feels as though there is a well inside me which keeps overflowing but it just feels right although it may be a little disconcerting to people I am with.

Today I see the oncologist again and I am told I will have chemotherapy on a weekly basis instead of 3-weekly. This means I will have a lower dose which I should be able to tolerate. Getting to the wedding in Thailand suddenly looks much more achievable and it is clear my oncology team are really thinking about how to do this safely. I ask if I can reduce or stop taking steroids. The effect is horrible in that my face and trunk are swollen. My feet resemble pig’s trotters. I would really like to look a bit more normal in the wedding photographs although I appreciate being in the photographs at all with be something of a triumph. Maybe a yashmak will do the trick. I actually feel very calm about all the changes and positive about what is happening. The treatment is, as usual, messing up any work I have. I have meetings for when chemotherapy is scheduled and, ironically, have been offered more work this month that probably in any other month this year. I have to turn down quite a lot.

While I am writing this blog, the door rings and it is a man from Breast Cancer Care. He starts to tell me about this amazing drug which has been developed by BCC but which is only available privately. He also tells me that it has had “100% success rate” and is used for breast cancer and other cancers. He does not know how the drug works. I ask is it based on an enzyme? Is it for women who are HER2+, ER+ or PR+? He does not know. He bangs on about one in 8 women getting breast cancer. It could be his mother. I tell him it is me. I have had the original breast cancer and now have secondary cancer. I ask at the beginning if he is asking for money. He says no. Within minutes he is saying people are giving 21p to help get this drug paid for by the NHS. I ask is it available through the National Cancer Drugs Fund. He says no but that people who are middle and working class deserve to be able to get hold of it when needed. The naivety of getting a drug funded by the NHS almost takes my breath away and, tears near the surface, I just start crying and he pretty much runs away. It is a surreal moment and I suspect he won’t sleep tonight.

All in all, everything is well and I am happy and cheerful and looking forward to what the next months bring. We’re going through a lot of changes at the moment including selling the house and moving but it feels positive and the right thing to do. If we’re not going to move now, when will be the right time?