No need for No-no

Every week seems to be a funny week at the moment. I get my portacath put in, finally, by quite a grumpy doctor. I ask for sedation, he disagrees. I ask him to cut out the keloid scar the last doctor left me with and he tells me people heal differently and that it is not the responsibility of the doctor. I disagree and tell him the last doctor sewed it sides together so the ends were sitting proud, and that he was also gossiping with a colleague about other colleagues while he did it. He silently disagrees and is grumpy when I tell him not to do blanket stitch. Perhaps everyone says this. I have to wait in recovery for 2 hours and then I can go home. When I get home, I am so tired I go straight to bed and sleep for a couple of hours. When I wake, I feel totally disoriented. Mr Mason wakes me and I ask the time. He says it is 6-o-clock. I ask day or night? I ask what day of the week it is. I am not with-it at all. I get up and dress and go downstairs. He has made supper but after a forkful I realise I am really not feeling well. I take my temperature and it is over 39 degrees. In my delirium, I manage to make the thermometer read farenheit instead of centrigrade and can’t work out how to change it. Mr Mason asks what my temperature is and I tell him it is 104 at which point he says “If that’s in centrigrade your blood would be boiling”. I say I need to ring the hospital. Mr Mason, ever the optimist says “Come and sit in the garden and cool off”. I decline. He suggests I have ice in my drink. I am too far gone to even give him an old-fashioned look but I do phone the on-call oncologist. She asks me to convert the temperature for her but I can’t. She realises from my babbling that I need to come in so we drive to Charing Cross A&E and get waved straight through.

My temperature is 39.9 so I need some fluids and probably antibiotics. The fun part comes when they have to put a canula in. First they try My Best Vein but the nurse can’t do it so she calls the doctor, Salvo. Salvo looks slightly demented and, I suspect, is quite overwhelmed at the job he is being asked to do. He tries the Best Vein, then decides he will go for the groin. I don’t know if you’ve ever imagined someone scrubbing at your groin with a Brillo pad but this feels like I imagine that to be. Dr Salvo goes at it with zeal and then insists on scrubbing up and having full protective gear and gloves on. I try to tune out of the worst bits, including the many anaesthetic injections, but I look up when he says “It’s not going to work” and I see him with a slightly manic grin on his face, holding up 2 feet of thin tubing while his gown and gloves are liberally splashed in blood. So, Plan C means they try to fit canula in each of my feet. No success. After almost 3 hours while Dr Salvo gets increasingly anxious-but-cheery, he decides to call the anesthetist who he thinks can help. While we wait and I get various bits of tape stuck to me, someone finds a portable ultrasound scanner and they finally manage to get a canula in My Best Vein. Result. I go up to the ward just after 3 and spend the rest of the night being monitored. I have fluids and more antibiotics and towards the end of the day, we are told I can go home. Relief.

On another front, my hair decides it has had enough and begins to drop out. I leave a trail of hair throughout the house, it comes out in my hands and hairbrush and is annoying so Mr Mason agrees to shave my head for me. It’s good to have most of the hair gone but the little bits are still falling like autumn leaves. Clearly there is no need for a No-no in our house. In other news, I am having chemo number 2 tomorrow which I hope won’t depelete my energy any further. At least they will be able to use my new port which should dispense with the Brillo pad groin technique.

Fair-weather friends

Over the weekend I gnaw on a painful problem. It is about the friends we have and the friends we lose, sometimes for no apparent reason. I write a whole blog raging about inconsistency and, most diappointing of all, the blank brick wall erected to repel me. it does not get published. In brief, a lovely friend has for some reason decided to cut off all contact with me. During my initial diagnosis, she was a reliable support, helping us with the garden and just checking up on me. Contact did tail off but she had a new, high-powered job which I knew she was working hard at so this was fine. When I contact her to tell her of my new diagnosis, I hear nothing. I wonder if she’s changed her mobile and not told me. I send messages on Facebook which I know are read because Facebook tells me so. Nothing. Cue the tumbleweed.

I know from friends that this is not an uncommon reaction when there is a diagnosis of cancer. Everyone I talk to has had similar experiences and we could all sing from the same songsheet. Best friends who disappear overnight, close friends who melt into the background. Balancing with this, however, are the diamond gleams of those who really step up. Perhaps casual or newer acquaintances who are really reliable and do the ironing/shopping/dog walking or who text you to ask how you’re doing. I had my fair share of those in the last couple of years, too, but the ones who melt out of sight always pull at my heart strings. I want to know why. I know some people just can’t take the news. It’s too painful for personal reasons or just because they can’t deal with it. And they do have the opportunity to step away from it so I can hardly blame them for wanting to do that. Wouldn’t we all just run a mile, given the chance? Actually, if anyone gave me the chance to run a mile I would be very hard pressed to do it, wheezing away as I am.

Yes, the breathing thing is not good at the moment. The fluid in my chest comes and goes so breathing is better or worse, depending on how much there is. I wake in the night struggling for breath sometimes. Sleeping propped up is not all it’s cracked up to be and sliding down the bed is a sure way to wake up, panting away. So, ten days after chemo and I am out and about again, this time to the hospital to get my blood checked to see if I can have a new portacath inserted in my chest tomorrow. Blood is taken expertly by Mark, the phlebotomist. I ask him where he was a couple of weeks ago? He says he was ill. I tell him the guy they got in to cover was useless, prodding away under my flesh in search of a vein. Mark says he can’t choose the locums but I tell him not be ill again, please! He always manages to get blood out and to do it painlessly which is a real art. After the blood, I go to Maggie’s where I am meeting Ms Marsden (and hello Mrs Marsden – nice of you to follow me!). We decide to go and buy sandwiches for lunch but Ms Marsden’s job is giving her hell at the moment and so a lot of our time is spent trying to work out why some managers really have no flair for it. This I don’t mind in the sense that I want to support her and wish slightly bad things for her manager but I don’t like the fact she is even in this position. Going back to work after cancer is fraught with difficulty. People tend to assume you are ‘better’ and just like you were before the illness. You may look the same (or be sporting a new, shorter hairstyle) but you are very much changed. Many people have Post Traumatic Stress Disorder after diagnosis and treatment. Cancer is about the threat of death, and soon. It snatches hope from you and replaces it with uncertainty. The ride is a wild one and, although there are rosy patches, a lot of it is pure slate grey. Stomach jolts of good news, bad news, no news are all commonplace but no easier to bear for all that. So re-entering the normal working world can be a challenge and, just from my observations from those I know, can more often be a nightmare. Phased returns to work are thrown over in the reality of chaotic workplaces and well-intentioned plans are trampled over, leaving the returnee adrift and rudderless. It’s not a happy picture.

We eat our sandwiches while chewing over the problem in hand and we both agree Ms Marsden should go home and talk to Important People and come up with A Plan. I sit and drink some lemon Robinson’s Squash which I haven’t had since I was a child and really enjoy it. I also consume a small trifle which slips down easily. Many foods are too hard – toast crusts being a prime example – and cause pain in my oesophagus when I swallow. I am still choking on drinks and would really like to see an ENT specialist to understand why. Following my squash binge, I take myself off to the 6th floor where there is an oncology assessment ward and a doctor who will check my blood results. Hmmm. The results are not good. I have neutropenia – very low white cell count to those of you not versed in these things. They can give me an injection which might boost them. This is one I have normally given myself but today, I get a nurse all to myself. Inevitably, it all takes ages and the doctor comes back apologetically to tell me to come in at 8am so I can have more blood taken. Another test to see if the surgery can go ahead and another wedge of time to fill. She feels sorry for me and then says “No, make it 9am”. I have my injection and then Mr Mason is there to take me home. No sleep this afternoon. I am a very tired bunny. And about to do it all over again tomorrow.



Raspberry Crush

It is Monday and I know we need shopping and feel I could go with Mr Mason if we drive. We just go to the local Sainsbury’s and park on the first floor. There are 3 lifts at our local branch, 2 for customers and 1 for Sainsbury’s ‘colleagues’. Pressing the lift buttons brings all 3 but I am just a tad slow and so Mr Mason is in a lift with the doors closing before I realise it. He doesn’t leave me stranded, though, but presses the button to open the doors again and when I get in, I realise there is a woman in there who is shaking her head in barely suppressed fury. As we get to the ground floor, she stomps off, still shaking her head and muttering. I feel strangely drawn to her. Mr Mason goes off to buy some disposable containers for putting our own meals in the freezer (and, all too often these days, my leftovers as my appetite is pretty poor) and I wander into Sainsbury’s with my trolley thinking “I will seek that woman out”. I don’t know why I do it, really. I suppose there is some need to make a connection and to pass on some information rather than wisdom. Anyway, she is fussing at the fruit section and I walk up to her. “Excuse me” I say, politely. She ignores me. I say it again, this time laying a hand gently on her arm. I get her attention. “I couldn’t help but notice you were a little frustrated by my slowness at getting into the lift earlier. I just wanted to let you know I am having chemotherapy for terminal cancer and so I’m not as agile as I’d like to be.” “I’m in a hurry!” she snaps. I understand that but I want to give her a moment to pause and be aware and, perhaps thankful she is not in my position. I want her to realise we spend so much time rushing and being stressed and that maybe she could re-evaluate her situation right here and now. I am clearly expecting a lot. I tell her I just wanted her to know and maybe understand. She just looks at me like I am a lunatic and says again, emphatically, that she is in a hurry. I smile and say “OK”. She still looks frustrated and cross and she really does not want to make a connection with me. She is a middle-aged woman dressed in black lycra from head to toe and then she says she is going to a funeral. I give her a long look and say “Aren’t we all” before turning away.

I cannot understand people who don’t want to make a connection. It feels totally alien. I connect with people all the time, whether it’s a smile or holding a door open. It is just about recognising our human nature and acknowledging the other person. Animals do it all the time and I think it makes the world go round a little more smoothly. When I first had hair after my last bout of chemotherapy, I was walking along the road when a young woman, sitting at a cafe, shouted out “Hey – I like your hair!” It wasn’t the compliment that made me fizz inside, it was the connection. Maybe I am not being articulate enough in my explanation but I wanted the cross woman to soften and to be more than a cross woman in black lycra. She wasn’t having any of it and maybe on another day she would have been different.

We shop and buy a trolley full of treats for the next few days as Mrs Lavoll is coming to stay. Treats include sausages, ice cream and chocolate. Sausages in Norway, Mrs Lavoll’s home country, are not the same as ours. They are like frankfurters and full of smushed up meat. After living in England for many years, Mrs Lavoll has gained a taste for English sausages, particularly Cumberland although we are also trying to convert her to Lincolnshire. Another mystery is why the Norwegians do not have coleslaw. Given their predilection for open sandwiches with cold meat and fishy caviar, it seems extraordinary that they have not gone for coleslaw. It seems it just does not exist in Norway. Periodically I suggest Mrs Lavoll starts to import it and become a coleslaw magnate but she seems surprisingly reluctant to change her career in this way. We spend a lovely couple of days together but my energy levels are already dipping and my sleep becoming fractured. I have lots of mouth ulcers by this point and spend quite a lot of my day showing them to anyone in the house. I am a child at heart. But Mrs Lavoll is a friend who would, and has. flown over from Oslo just for the day to hang out and eat Thai food. Just the thought of it makes me smile.

With the weather becoming increasingly hot, Dog wanders in and out of the house at will. We put a rug down in the garden and he lays on it, sunbathing. Having his roots in the Sahara, it is not surprising he likes to sleep in the sun but when he comes up to me for a random bit of attention, I am immediately drawn to what looks like blood on the side of his face. He doesn’t seem bothered and lets me gently dab at it with some damp kitchen towel. Mr Mason and I look at it and worry at where he could have sustained an injury. I remember giving his lovely face a scratch earlier in the day when I was laying on the sofa but definitely don’t remember seeing blood. And this blood seems to be dark pink in colour rather than red. Hmmmmm. It is Mr Mason who does the Sherlock Holmes thing and says “Raspberries”. Of course. Dog has laid in the garden and put his big old head on an errant raspberry and squashed it and the juice has seeped into his fur. Dog is oblivious to this and just thinks we should continue paying him close attention and scratch behind his ears……..just there. Aaaaaah.

First treatments

It has been a very trying week. After being in hospital to get some more fluid drained off, the next day we go to see the oncologist. She is frustrated. There is still no news on the plueral fluid but we all agree to go ahead with the chemotherapy. I will also get a referral to and ENT specialist as I have so much pain in my osophaegus which no-one can seem to understand. I am already sleeping propped up at night and still taking a mixture of pain killers to help dull it. The phlebotomist who takes blood is not the usual one and he seems obvlivous to the fact that inserting the needle in and pushing it around under the skin actually causes a lot of pain. After fifteen minutes of so of this, he hands me over to a colleague who gets into a vein on my forearm straight away. There are 2 research nurses waiting to take extra blood but the vein will only give enough for the basic tests so they fade away like sad vampires.

Thursday sees me in the chemo suite for the first time in a year. I am starting with Herceptin which has to be loaded. This means they deliver it over an hour and then I have to wait for 6 hours to see if I have a reaction to it. Firstly, getting a canula in is a major job and they use a vein in one of my fingers which is a little painful. I feel fine after the infusion although that feeling gradually fades away. By the time Mr Mason arrives at 5pm, my blood pressure is shooting up and my heart rate is high. A doctor is summoned. She has to take a full history which takes some time and I am constantly monitored. The unit has emptied out and apart from 2 patients who are waiting for transport, it is just me, Mr Mason, a doctor and nurse. The doctor asks for some bloods to be taken. I feel so ill and it takes quite a while for the nurse, who should already have left, to get anything out of me. The doctor rings the on-call oncologist who agrees I can go home if I take some blood-pressure medication as soon as I get in. We finally get home at 8.30pm

Friday I am back in the suite and they are very unhappy about trying to canulate me again as Docetaxel is not something they want to put in a vein that might burst. The nurse takes around 45 minutes to get a canula into my next finger and it is strapped down as firmly as possible. The first drug, Perjeta, goes in over an hour and I manage to sleep through it. After that, we have to wait for an hour to see if I have any reaction to it which, thankfully, I don’t. Then the anti-sickness meds go in and finally Docetaxel. Somewhere around 5pm I get a visit from Ms Cantini and Mr Tozer who have been to the radiotherapy unit. I also get a visit from Steve, the unit’s administrator, who tells me he is leaving during the middle of next week to go temping. He had seen my name and remembered me from last year and I feel so touched he has come to say goodbye. Steve was the person who was so witty during the ‘Dont’ call her Beryl’ incident nearly 2 years ago. You’ll probably have to delve into the archives for that one.

We eventually leave the chemo suite at 6pm, tired and just weary of the whole thing, My appetite is not great at the moment so we stop at Tesco Express to buy some eggs and, a current favourite, trifle. Scrambled eggs and trifle slip down easily so they are currently on the menu quite a bit. Mr Mason gets some fish and chips from our favourite shop as he is so hungry and I know he is tired. He is always up earlier than me and is also decorating my office in addition to doing all the housework and walking Dog. It’s such a lot for him so fish and chips is the least I can do. He breaks off a little piece of fish and puts a few chips on a plate and that’s enough for me. I take a raft full of drugs and then get into bed. I am so physically and mentally tired, I just need to get into bed and stare into space. It’s such a lot to take in but at least we’ve begun the treatment which I am glad about. The oncologist did say that if I tolerate Docetaxel well, I may be able to stay on it long-term. Hmmm. Not so sure how happy I feel about that but we’ll have to see how things go. We are hoping to treat this as a chronic condition but won’t know if that’s possible until after we have a couple of treatments under our belts.

So were basically doing OK and looking forward to visits by two separate groups of friends next week. It’s not going to be an easy road this time, not that it was last time but last time we had hope of cure and this time that’s not possible. Sorry, a bit gloomy this time but that’s probably all the drugs and I know I have loads of people routing for me and that feels good. Thank you.

Almost normal

Time passes so quickly and before we know it, we are back at Charing Cross. The hospital rings on Monday to leave a message telling me I must go in and have more fluid drained on Tuesday. As we will already be there on Wednesday, Thursday and Friday, this is a little frustrating but we duly turn up. We cannot park in the car park so park instead on the road behind the hospital. There is a lorry on the corner from which horses are being unloaded. This is an unusual occurrence in almost-central London but then we see a sign on the front of the lorry which says ‘Funeral service’ so we guess they will be harnessed to a hearse. I would like at this point to show you a photo I took of the horses but for some reason, although it is uploaded to my laptop, it will not allow itself to be uploaded to wordpress so you will have to imagine 2 large, white horses standing around on the pavement.


Yet another x-ray and then up to the ward where I am shown to my usual bed, a bit like a favourite restaurant. This one has views over London and even shows a bit of the river. Again, I can’t show you what it looked like as, yes, you’ve guessed it, wordpress won’t allow me to upload the photo. So even the selfies I took with a winning smile on my face will have to be imagined. Mr Mason hangs around for a while and then goes home to continue with his decorating frenzy. After he has gone, Ms Marsden arrives with Hummingbird Bakery cupcakes and a pile of canvases. She has the art bug big time and is painting anything that will sit still long enough. We discuss various ways in which the cupcakes could be divided which is anything from ‘share them with Mr Mason’ to ‘eat them all yourself, you greedy pig’. After a while, she has to go and I busy myself with my e-reader and a hospital luncheon which ended with jelly. It’s years since I have eaten jelly and I’d forgotten exactly how nice it is, especially if you’re having trouble swallowing, like I am.  Back in the dim mists of time, we used to make jelly in a variety of moulds. There was the racing car but my favourite was always the rabbit. I suspect they are long gone from my kitchen but I would quite like to resurrect them.

While I wait to be taken down to ultrasound, a doctor pops her head around the door to ask if she can see me. She tells me she is from the 11th floor and is having an exam but has heard I have a pleural effusion which she would quite like to listen to. Would I mind? Absolutely not. As long as her hands and stethoscope are warm, I am all hers. She taps away on my back first then looks at my chest, noting bits that are there and bits that aren’t. She has asked me not to tell her which side the effusion is on but then sees I have had a recent drain which rather gives the game away. Then she listens again with a stethoscope and then more tapping during which she asks me to say “99” each time she taps. I wonder momentarily if I should say it in a variety of voices or if anyone is listening and thinking me deranged. I want the final “99” to sound like the final 99 but I can’t tell when she is going to finish so give up. She says she doesn’t think the lungs sound different to each other giving me a rather suspicious look as though I have been a medical stooge, placed in her way. I suggest she goes to look at my last x-ray which will tell her exactly where the fluid is and will suggest how much.

At 3pm I am wheeled down to the Ultrasound department. While I am in the waiting area, I am rather distressed to see an elderly lady sitting in a wheelchair with a hospital gown on which doesn’t even cover her knees. I want to ask someone to cover her with a blanket or sheet but I am whisked away into the darkened recesses of the department. It is quite strange being wheeled about in bed by a total stranger. I feel a little like a parcel being delivered. The doctor is all ready for me and is pleased to see I have brought some Mepilex with me, the only adhesive dressings I am not allergic to. She decides to go in through a different rib and while she is putting the anaesthetic in, she hits a nerve which is the most peculiar feeling. It hurts but it feels as though the nerve is jumping all over the place. I have already asked for strong meds to be prescribed in case I have as much pain as last time when I thought I might be having a heart attack. The nurse looks at my available meds and reads them out, saying she doesn’t think I’ll have much problem controlling the pain with all that lot. The procedure is not very painful or even uncomfortable, apart from having the anaesthetic, ironically. As soon as fluid starts to flow, my oncology registrar appears and scrambles about on the floor, getting samples which she is going to deliver to the lab personally, the last lot having gone walk-about. Not having the cytology report means there is no proof that there is cancer in the lungs but I personally have no doubt it’s there and the oncologist doesn’t, either.

After I get back to the ward, I am given a dose of ora-morph to deal with the pain in my shoulder and, apart from observations being taken every 30 minutes, I am left to relax and doze off. There is some slight anxiety as to whether I can go home or not but the registrar appears and decides there will be no more fluid to come out so she removes the drain and asks if I will have one last x-ray before I leave. It is almost more than I can bear, so much do I want to escape but she arranges for us to have one done in A&E and we are whizzed through in record time. She takes my phone number in case there is something wrong on the x-ray so although I didn’t want to have it done, I appreciate her diligence. Mr Mason and I stroll back to the car and we are soon home. A cup of coffee and a Hummingbird cupcake later and I feel almost normal. Almost.

Where’s Wally?

It’s funny how people react when you say “I have cancer again”. It almost sounds as though I have been careless or negligent and have let it back into my life through neglect. Instead of coming in all guns blazing, this one has crept under the radar and has disguised itself as something much more benign. It leads me to wonder what you do say when someone tells you they have incurable cancer? Often “I’m sorry” comes to mind but I find a far greater need to apologise to those around me for having this bloody disease than accepting someone else’s commiserations. It’s hardly on a par with anything else. “I’m sorry you didn’t get the job/your relationship broke down/you lost your wallet/you got burgled”. And yet here I am, a bit breathless and with a husky voice but apart from that appearing perfectly fine. Just staring down from the precipice. A lot of messages I received were not only apologetic but remarkably sweary. Some contained only swear words which I could really relate to.

On Tuesday I have a heart echo at the hospital. It’s a pretty dull sort of test which involves a man leaning across me and pressing an ultrasound device (what on earth is it called?) into my chest quite hard to get pictures of my heart. While he is sorting out images he leaves his arm draped around me in a friendly sort of way and at the end tells me my heart is as good as it was the last time they looked at it which was at the end of my year of Herceptin treatment. One thing going well! He even gives me the report to take to the oncologist tomorrow in case the online version gets lost. After this I trail over to Maggie’s, aware I will be spending a lot of time here again this year. My friend Ms Marsden is waiting for me as we plan to visit Ms Cantini who, as you know, stalks me like crazy. She is actually in isolation (possibly because of bad behaviour). Word of my secondaries has started to get round and a couple of the centre’s workers come up to speak to me. I cannot imagine how difficult their jobs must be. It would be impossible not to become attached to or fond of centre users and yet they must bear their loss time and again. Ms Cantini is in isolation because her neutrophils are a big fat zero. Ms Marsden and I clothe ourselves in gloves and plastic aprons looking more like redundant dinner ladies than anything else and then wade in. Ms Cantini is, understandably, bored by being in hospital so long and also so very tired. I fulfil a promise I made Mr Tozer which is to behave like a cat by rubbing my face on the end of her bed. We saw a video on You Tube which demonstrates how bizarre it would be if people behaved like cats. Ms Cantini is a bit puzzled but goes with the flow as it’s just like a passing show and will soon be gone. We leave her to the delights of hospital luncheon.

Wednesday brings an appointment with the oncologist. It’s a bit of a frustrating meeting as results of the pleural fluid drained off are not available and at present we are playing a game called ‘Hunt the Tumour’. It’s a bit like Where’s Wally only less fun. The oncologist is sure I have secondaries. She thinks they are in the lining of the lung but, like anyone would, she wants evidence of this. She is very apologetic about the lack of results and tells us that if the pleural fluid comes back showing no cancer cells, she will want to do a biopsy. I don’t think to ask many probing questions about this as I don’t think I want to know right now. She tries to phone cytology but the phone service has a voice recognition system so instead of cytology, it offers her psychology. She gives up. Mr Mason and I trundle off to x-ray but the oncologist has forgotten to book it so we go back to oncology and ask one of the nurses to remind her. We sit and wait for a while and then I think “sod it!” I could be in my Maggie’s group instead of waiting there so that’s where we go. Mr Mason settles down with his book and I burst in and possibly ruin a good moment but it’s lovely to be back with all my girls. Afterwards, we go back to x-ray and eventually the authorisation comes through and I am x-rayed. The radiologist looks at me and says “Have I x-rayed you before?” so I know I am becoming a frequent flyer.

So now I just wait to hear results and see where that will take us. Whatever happens, I will be starting chemotherapy on Thursday and Friday of next week. Whatever I do, I can’t shake cancer from my mind. It’s a bit like having a job I don’t like. I can’t act and then be done with it. It slips in and fills all the cracks and I suspect it will be like this for a while. So no point in having my legs waxed or my hair cut or coloured. It will all be gone in a couple of weeks. Unfortunately, the cancer will not