Happy anniversary!

As you know, in the Mason household we are busy sorting, sifting and throwing things away in preparation for our move on Thursday. I have a large collection of papers in the sitting room and today they have to be gone through. I spend most of the morning in bed with a chemo headache which refuses to abate but likes to cling on, booming away behind my eyelids. I vainly try the Post Office mail redirection helpline but, of course, despite advertising chirpily that they are open, no-one answers the phone. I give up and decide to make sure we have electricity connected and then book a train ticket home for Mr Mason jnr who is going to come and help us move in. After a snooze, I eventually prise myself out of bed and make my way downstairs to face the awaiting paperwork.

One of the first things I find is the pathology report I received on the day I was initially diagnosed with cancer, exactly 3 years ago today. It’s a bit of a gulp moment as I read it through and remember the day I went with my lovely friend, Mrs Halford, and we saw a consultant whose interpersonal skills were so poor he should probably not work with live patients. We are now 3 years down the line and those years have flown by alarmingly quickly. Combined with finding old school reports, cards – particularly birthday cards from Mr Mason jnr which start ‘Dear Mother’ and usually contain instructions such as ‘eat lots of cake and so forth’ – and other memorabilia, it’s a bit of an emotional day. Eventually, I have sorted enough papers out to feel satsified. The rest of the pile will just have to be chucked in a box by the removal men.

Tomorrow most of the packing will be done and then we have a day to clean before everything will be packed into the van. I am almost tempted to pay tribute to the Australian who posted himself back to Australia in a box by allowing myself to be packed into the van but I suspect the idea is more fun than the reality and anyway, we’ve probably thrown away all the small bottles that I could posibly wee into.

I know we’re embarking on a big adventure, one that should enrich our lives and give us the peace and wide open spaces we have always dreamed of but when I left Maggie’s on Friday, I felt bereft. My stomach clenches and I feel really sad and quite sick. We have brought our two beautiful children up in this house, we know the area, we have friends within a few minutes’ walk and I know my way around Charing Cross so well I can direct other people. Seeing our home dismantled is thoroughly unsettling for me. My head knows what will happen but my heart just can’t keep pace. I feel as though anything I put down will be packed up and that I need to carry all the things I need for the next few days around with me like a snail with its shell. Time will sort things out and this time next week, as Mrs Halford puts it, we’ll be in our new crib.

Don’t think for a moment that I am regretting our choice – to move into a house we have been in for a maximum of 15 minutes – but it’s just with chemo, waiting for CT scan results and not being able to find anything, it all feels a bit much. This time next week, things will be very different.

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.

The case of the incredible shrinking woman

Last week I spent time with my girlfriends, happily painting woobs. This week is somewhat different. Still not learning from the idea that I cannot plan a single day without things potentially going awry, I whizz off to my oncology appointment, telling Mr Mason that it will just be a normal appointment with nothing to worry about. I get blood taken and am called in to see the registrar as my consultant is on holiday. She asks me how I am and I tell her my breathing isn’t too good. I have noticed over the last few days that going upstairs makes me feel really out of breath. She is immediately worried and questions me about my temperature and any other symptoms. She decides to have my blood oxygen measured immediately and also to get me an emergency ct scan but first to go and get an x-ray to see what fluid is in my chest. Luckily, my friend Ms Marsden is on hand to keep me entertained and hold bags and clothing. The x-ray technician recognises me as is happening increasingly often, even in a hospital of this size.

The x-ray technician shows me a copy of the x-ray compared to the last one done in July and we agree there is less fluid there than before. He also comments on the camisole I am wearing in that the straps have plastic attachments whereas the ring which holds the straps is metal and therefore shows up on the x-ray. He tells me this is to do with costs and maximising profits. I wonder if he is doing a business degree in his spare time. We trot back to the oncologist who sees me again and she arranges for a nurse to insert a canula for a ct scan. The nurse who inserts the canula is friendly and comments on the bruising already on my arm from the blood taken earlier in the morning. Ms Marsden and I grab some food from the cafe and go to the ct scan area. Once inside, I am laid on the table while the iodine contrast is pumped into my arm. Now, with a ct scan you can feel the iodine go around the body as a flush which ends up by making you feel as though you have wet yourself. This happens within seconds but doesn’t happen this time and I can feel the iodine going into my arm but not the vein. I call out to get them to stop and the technician comes and rather techily detaches the iodine pump and tells me to sit with my arm up and an ice pack on. Then come the words I don’t want to hear. “You are going to go up to 6 South”. Aaarrrggghhh! This is a precursor to being kept in overnight which I really don’t want. I ask them to bring Ms Marsden in and we sit and make small talk until the porter arrives. He is also familiar.

Up on the ward, a nice oncology doctor, James, comes to see if he can canulate me. He removes the canula and puts a dressing on it. I seize the moment and nip to the loo only to find blood coursing down my arm and dripping on the floor, soaking my gown and causing me to shout “Oh, shit!” which Ms Marsden says was clearly audible from the ward. I grab a wad of paper towels and holding my arm up, make my way back to James who is slightly alarmed to see all the blood. He tries to clean me up and stop the flow of blood. The next thing is to put another canula in. But where? Another oncology doctor arrives. I have no idea of her name but she points to areas on me as though I am a piece of meat, taking my shoes off an examining my feet. i want to tell her she has to actually communicate with the patient rather than look at me like something on a slab but I am tired and really can’t be bothered to tell her something she should know.

Mr Mason arrives and relieves Ms Marsden who has stayed with me all day. The canula is inserted in my foot, an arterial blood sample is taken from my wrist and after the results come back, I am wheeled down to the first floor for another ct scan. The technician is tetchy, it being midway throuh the evening and she is even tetchier when she seems the canula is in my foot. She thinks this might not work but will grudgingly have a go. At least the iodine gets round my system this time and the technician says she thinks it will have worked well enough. I am back to the ward and Mr Mason goes home, without me. As there is no room on the proper oncology ward, I am left on the assessment ward but they give me a nice side room of my own and only disturb me 3 times during the night to monitor my vital signs and to give me a blood-thinning injection which hurts.

The next morning I am desperate to get out and go home. I don’t feel ill, just breathless, and I’m sure I can have a much better rest at home. Also my phone and ereader are rapidly running out of charge so I find myself resorting to reading an old copy of Chat or something similar and going over all the wrong answers on the crossword page. The consultant comes in to see me to say there is no blood clot, which is a relief, but that they don’t know why my breathing is so bad. They think it is damage from chemotherapy but that could be from a previous time or the 2 sessions I have had recently. It certainly means there will be no chemo today which is a bit of a blow. They are going to put me on steroids to try and help my lungs and then I may be able to have chemo the following week. Mr Mason arrives with toiletries and chargers and I clean myself up and plug in all the essentials. The registrar comes back at 3pm to say I can be discharged and we then wait, wait and wait some more. Finally, at around 7.30 I am given the all clear and we are on our way home. Why it takes so long to discharge me is not quite clear but apparently involves the length of time it takes to get drugs from the pharmacy. I am also being given antibiotics for what they think is a fungal infection which might account for the pain in my osophaegus when I am having steroids. We shall see.

I arrive home to find a copy of a letter from my consultant written to my GP. She updates her on what had been happening (although the letter is now out of date) and tells her that my weight has dropped to 1.4kg. This is a shock even to me. I know my weight has been dropping but to be the size of a very small cat is beyond even my capabilites. Just another case of the incredible shrinking woman, I guess.

My Best Vein

It seems like hardly any time since we were strolling across the canals of Venice but, of course, real life has a habit of crashing in. Not that the Vogalonga wasn’t real life – it was just an extraordinary slice of real life. So, we are not back more than a day before I am at the GP surgery asking the GP to listen to my chest. I feel breathless and it’s got worse since Venice. I have to say my GP practice is patchy when it comes to good service. On this occasion, a phone call late afternoon scores me a “come in at 6 and hang around” appointment which I am really grateful for. The doctor is one I haven’t seen for years and she’s very nice. She listens to my chest and tells me that one side is quieter which is apparently, not great. She orders a chest x-ray for me for the following day when I have an appointment for a bone scan anyway. By Thursday morning, I am feeling worse and ask Mr Mason to drive me to the hospital which, of course, he does. At this point I am having problems even holding a conversation and I have a pain in the middle of my upper back. I don’t have any problems locating the right department as I know pretty much where everything is. When I have had my x-ray, the radiographer says she will have to check with the consultant as to whether I can go home or not. What?? This I am not expecting and I really don’t want to be admitted. The doctor comes to speak to me and then speaks to the consultant and then comes back to say I can get on with my day but if I feel worse, I must come to A&E. I have the bone scan which I really dislike as the machine is so close to my face and, not being able to breathe properly, I already feel pretty claustrophobic. But then it’s all over, Mr Mason comes to pick me up and we go home.

The next morning Vanessa, my breast care nurse rings to find out how I am. I explain about the breathlessness (which she can hear) and the chest x-ray and the bone scan and she says she wants me to see the Oncologist the following Wednesday unless my breathing significantly improves. The consultant has also asked me to go to see the GP I saw last and get her to assess my breathing. I ask if I really need to do this and am told this is what the consultant recommends so I duly go to see the GP, this time accompanied by Mr Mason in case I don’t make it unscathed. The receptionist knows who I am as soon as I enter and tells me she has been on the phone trying to find the duty radiographer to get the results of my x-ray for the last 20 minutes without success. Eventually I get to see the GP whose office is at the top of a flight of stairs I negotiate slowly. She tells me the x-ray results have actually been sitting in her email but she hadn’t looked there. The main thing is, she has them now.

I have a pleural effusion which means there is fluid between the chest wall and my lung. Now, the thing about pleural effusions is that they are a common precursor to secondary breast cancer and that’s an area we really don’t want to go to. She listens to my chest and says it sounds similar to the last time she listened to it but to rest and rest some more over the weekend which I do. But it is very dull being the captive of the sofa.

On Wednesday I go to see the oncologist. There is a merry atmosphere in Clinic 8 (named so it won’t frighten the horses) as I find my friend Ms Cantini waiting for her oncologist and sporting a nifty 50’s style headscarf. We are later joined by Ms Marsden and Ms De Roeck who have come along to make sure neither of us is dead. I quite like the oncologist’s registrar. He looks like he would be useful on a rugby field. Anyhow, he listens to my chest and then looks down my throat using a special tool (the torch on his phone) and decides that on top of anything else, I have a fungal infection so there are more tablets to be taken and some medicine. The medicine the oncologist has prescribed is utterly vile. A mixture of vanilla and aniseed in a thick, viscous liquid. Yuck. He says that while we are in Clinic 8, the nurses will canulate me for my CT scan and take some blood at the same time. We can then go back after the CT scan to see what results he has got back.

My veins are a mess. It’s no point pretending anything different. They are crooked and spindly and have a propensity to sink and disappear whenever someone tries to mess with them. I have a trump card, though. It is my Best Vein and it lurks in the crook of my right elbow underneath a promising-looking but ultimately useless vein. In the room where they take blood, I point this out but first they want to try my hand. This is not working. As they feel around with the needle in my arm, I suddenly feel faint and they take the needle out and scrath their heads. I am a puzzle. My Best Vein is not working now. They have prodded and poked it so much it has gone hard and is refusing to play, added to which I am now sitting with my head between my knees and that weird “I am just about to faint” sound of voices coming and receding. They bundle me into a wheelchair and whizz me round to another room where I can lie on the bed as they try to get some blood. I have my hand plunged into a stream of hot water to make the veins stand out but this still doesn’t help. In the end they have the bright idea of asking one of the nurses from haematology to just take some blood so the nurses in the CT scanning department can canulate me. This is done and I am then on my way.

The CT scan does not take long at all. I hold my breath at the relevant moments and it’s all done. We find the stragglers from Clinic 8 are now in the cafeteria so Mr Mason and I join them so he can top up his blood sugar levels and I can have a drink. While we are there, something magical happens. When I was first diagnosed, I noticed a man working in the hospital who appeared to have knitted hair. Even in the depths of fear and anxiety, my gaze was drawn to this wonderful concoction perched on his head. Ms Mason tells me that when we were leaving the outpatients department after being Properly Diagnosed, she spotted the knitted-hair man (as I had obviously mentioned him to her as one bright spot in the otherwise gloomy news) but thought it a little undignified and a tad inappropriate to tug my sleeve and point him out. Since then I have not seen him although I always look when I go past outpatients. So it was marvellous indeed to see him sitting in the cafeteria where I was able to examine the hairdo in more detail. That, and try to take surreptitious photographs, of course. His hair seems to be rolled into two fat sausages which perch on the top of his head. The back of his hair looks quite normal. It is a welcome diversion from the day. I’m sure he is a very nice man but I find his hair utterly fascinating.

The blood test results are back, in part. It shows that my inflammatory markers are raised but this could be because I have a horrible infection so we are still none the wiser. On our way out of the hospital we spy Ms Cantini waiting for a taxi so we scoop her up, at the risk of her being blacklisted by the cab company, and drive her home, too. Apparently she has been entertaining the troops with impressions of she and I having a breathless conversation together. And apparently, it was a hoot.

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