Tag Archives: le sein du cancer inflammatoire

Another day I will never get back

by

Well, this is a day I will never get back. It’s a tired week and in the night, I find it difficult to sleep owing to a pain in my chest which seems to be making breathing difficult. I have had enough of all this nonsense and swallow 2 sleeping tablets. Every in breath I take is painful when it gets to a certain depth. I cannot fill my lungs with air for a stabbing pain in my left chest. It’s not like a band around my chest but just stabbing pain and it makes sleep difficult. As morning dawns, the pain becomes slightly less but it is still there. I am pleased that I have an appointment at the pain clinic at the Royal London Hospital for Integrated Medicine as I have a very present pain which I would like some advice on.

The weather is wet and Mr Mason has taken Dog to drop him off on his holidays. We have been asked to create a list of the times he needs to be fed, the times he needs to sleep and when he is allowed biscuits. I haven’t done this and I have a strong suspicion Mr Mason hasn’t done it, either. Dog will tell them he has biscuits at each meal and by biscuits, I don’t mean the Dog kind. Dog has a very sweet tooth and if Mr Mason and I are eating cake, he will wait patiently until we have finished for his piece of cake.

I set off in the light rain to get a bus to the underground and from there on to the Hospital. The journey was actually OK. I got a seat all the way which is unusual and surprising. The pain clinic is not signposted at the Hospital but I remember where it is and find it. It actually consists of a couple of chairs next to a secretary’s desk. In order to see a doctor, you have to walk behind the secretary’s desk into what looks like a cupboard but which you realise is a small suite of rooms. My doctor today is bright and chirpy and very pleasant. He apologises for the fact that I always see a different doctor at the clinic. Then he asks what medication I am on. I explain which bits I have increased on his colleague’s advice and which bits my GP didn’t want to change and he seems very happy and tells me I am a very good patient. There is then a bit of a lull in the conversation and I realise he doesn’t really know what to say. He talks a little about a pain psychologist which my oncology psychologist is very keen on me seeing but he goes through a whole rigmarole about not wanting too many doctors or surgeons. He also tells me repeatedly that the medicine they have prescribed is not for cancer. “You can stop it at any time!” he beams. He then says they will discharge me but that if I want to come back “most delightedly” he will make another appointment. I try to talk about the pain psychologist again but he is not having any of it and I am not sure what the appointment is about. He tells me “You tell me what I can do for you and I will do it!” Anything except refer me to a pain psychologist. He is happy that my psychologist is at St Mary’s. “It is good to have all your treatment in one hospital”. I explain my treatment is at Charing Cross but there was no room for the psycholgist there so she took a room at St Mary’s. “Yes!” He is still beaming. He is going to write to my GP and send me a copy of the letter when I hope the outcome of my appointment will become clearer. As I leave, the secretary tells me in a low voice to phone back within the year or I will just be discharged. I leave the hospital in a state of bewilderment. What just happened? I am really not sure except the doctor was very nice but has bamboozled me with sweet words and promises. As I leave the hospital, I am pleased to see it has stopped raining.

On arriving home, I make myself a salad smoothie – lettuce, cucumber, tomato and apple. It is delicious. Fully replenished I decide to seize the day and contact Virgin Mobile about my phone. It has not worked for the last 10 days and Virgin have had it since Friday. They tell me repeatedly that my phone will be back with me within 4 working days. I explain I am having a lot of appointments at present and that I really need a phone. They do not loan phones and other than giving me a normal-sized sim card to use until my phone is ready (when I will have to delve into the workings of Virgin Mobile to get another micro sim card), they cannot help. I explain what my situation is but still nothing is done. So today, I phone them and am on the phone for 40 minutes. At the end of this time, I know the phone has been looked at and sent back to Motorola. I now have to wait for someone to call me (hopefully not on my mobile) to discuss what phone I am going to get next. “But surely I just get the same phone again?” I ask. “You might if you push them”, says Ash, my helper.

So my whole day has been wasted with people who are not really doing anything but requiring me to do lots of jumping up and down in order to get their attention. I truly despair of Virgin Mobile. This is the first time I have had a problem with a phone and it has been a ghastly experience and certainly one I would not want to repeat. The phone is only 6 weeks old and is also insured but I don’t know whether this makes it more complicated or not. I would have thought if my phone stopped working, they would take the old one and send me a new one. Isn’t that logical? Not in Virgin Mobile’s world. If you buy a new phone it arrives the next day. How can this service not be applied to repairs? We have 2 landlines, cable tv and mobiles with them but looking after your customers doesn’t seem to compute for them. Going through hospital appointments without a phone is a nightmare. I have emailed and talked to them, tweeted and posted on their Facebook page and they simply do not care. I rate their customer service as exceptionally poor.

In a consulting room far, far away…

by

Saturday 8th March dawns a little cloudy but with a promise of sunshine. The temperature is mild, even by March standards. Mr Mason and I get ready for paddling as we are off to the Royal Albert Dock to train hard; it is only a few weeks before we go to Venice for the Vogalonga. Dog makes a sad face as we leave him in charge of the house and cats.

It is an important day. 2 years ago I was sitting in hospital being prodded, scanned and biopsied (I’m not sure if that is a real word but you know what I mean) before facing the surgeon who gave me the news that I had cancer in the most cavalier way possible. In case you haven’t heard it before, this is how it went.

“I am very worried about you. The radiologist is very worried about you and I think you should prepare yourself” I ask what I should prepare myself for, thinking he is telling me I have terminal cancer. “Well, when you came in here this morning you told me you didn’t think it looked good so I thought you had prepared yourself.” A few sniffles from me. I look blankly at him. What do we do now? “Do you want to read the radiologist’s report?” I do not know. I ask if I should read it. “Well, it doesn’t make very nice reading” he says, deadpan. He looks at me as though I am a boring person at a cocktail party,not the patient he has just delivered devastating, life-changing news to. No smile, no sympathetic look. Absolutely deadpan. And before you go thinking that’s just my memory of events, Mrs Halford is with me and she is shocked by his attitude. She snatches up the report and says “We’re going”. At the desk, pausing to make another appointment, I ask the receptionist through teary eyes whether I can see another surgeon and she confirms in a way that makes me think she knows what he can be like. The man in the blue chalk-stripe suit, the silk hankie tucked into his breast pocket and looking like a man who hasn’t a care in the world.

I sometimes see him now when I’m waiting for an appointment in hospital and think – should I ask him if I can talk to him for 5 minutes and then give him a good slap tell him how his delivery felt? Would it make any crack in the hefty veneer? Possibly not. I have not found the courage/energy/will to tackle him. Maybe a letter but I would not know what the response was and that is something I would need to see.

So, Saturday, out on the water. It is glorious. We work as a team and I find I am able to paddle a few strokes more each time we perform the gruelling pyramid. We start with 10 strokes with 10 seconds rest, then paddle 20 strokes with 10 seconds rest all the way up to 100 and back down again. It is tough and I cannot pretend I paddle 100 strokes all in one go but by the end of our training session, we find out we have paddled 10km! Wave Walkers even has its own little entry in Wikipedia. OK, cough, cough. I have to admit I added it but why not?

There have been many people and events which have helped me on the road to recovery and who have been around through some of my very darkest moments. Especially Mr Mason who found himself holed up in Boston with me on morphine trying to celebrate our wedding anniversary. That was a pretty bleak moment. He didn’t even get anything to eat that night. No fat rascals. Nothing. I cannot name everyone who has had a hand in pulling me out of the cancer mire but it feels quite emotional to get to this point. A point I was not sure I would reach at times. For those of you who read my Facebook blog – I kept most of the bad stuff out of it. It seemed cruel to tell how I was feeling when it wasn’t good. But here we are today, out on the water with fellow cancer survivors, the wind in our hair and the sun on our faces. I have a ribbon in my hair and I may look ridiculous but you know what? I don’t care.

Mr Mason’s mild-mannered rampage

by

Following the breakdown of Mr Mason’s coffee machine, I fear he has turned into something of a monster. Having slaved over our tax returns, he is despatched to the bank so he can pay a cheque in for me. I do hate it when people pay by cheque – is it designed to stop me cashing it? They have not factored in Mr Mason’s tenacious spirit but I digress (my specialty). He is also going to the bank to pay his tax bill. When he returns, he presents me with a stamped and authorised paying-in slip which is unusual as I use the diy drop system. Did you queue? I ask. “Yes” he says, with an impish look on his face. It’s quicker to use the drop box, I say. “Yes, but it was all kicking off in the bank so I waited to see what would happen.” Clearly Mr Mason needs to get out more, or less, depending on your perspective. He explains that the bank was crowded with Polish builders, all trying to pay their money in or tax bills, he wasn’t sure. There were only 3 staff in the bank and they were arguing amongst themselves having been shipped in from other banks when the local staff all went off sick. The builders were shouting about the amount of time they were having to wait and the staff were complaining about the local staff. One of the staff was just going on her lunch break, one was serving customers and the other said she couldn’t help because she was an Advisor and not trained to take money. She apparently sat in full view of everyone doing absolutely nothing which can’t made the situation easier. What an awful situation, I say. “Yes,” says Mr Mason. What did you do? I ask. “I egged them on!”he says. “I sympathised quietly with the builders about how terrible the staff were and then when I got to the desk I sympathised with the bank staff about how awful the builders were.” I guess this is what happens when your coffee machine breaks down.

Tuesday finds me on a train to Leeds for a meeting at the Thackray Medical Museum but the train isn’t going anywhere fast. Apparently a car has hit a railway bridge (I initially typed ‘cat’ which would make the story so much better) near St Neots and this means trains from London to Leeds and beyond are delayed and cancelled. A woman nearby appears to be having a restrained and quite polite nervous breakdown. She makes phone call after phone call telling various people she is sick of someone’s behaviour and is going to put a stop to it. I gather she is in the tv business and that they have someone appearing on The One Show (known in our house as Celebrity Lawnmowers ever since Miss Mason, on watching the first ever show, swore this was a real segment of the show). She is called Clare (without the ‘i’) and the group of people she represents are all texting each other and causing lots of upset and, of course, she is sick of it. From her conversation, I put 2 and 2 together and deduce she is involved with the programme called Big Ballet where heavier people are allowed to dance ballet under the tutelage of Wayne Sleep. Now I want to know the names of the dancers to see who the source of all the rumpus is. I wouldn’t want to cross Clare, though. As we are de-trained (which I believe is a real word) at Doncaster into freezing wind and rain I am able to get a glimpse of Clare and she looks quite fearsome as well as having poor dress sense. Or maybe she got dressed in the dark. Clearly Mr Mason’s mean streak is catching…

But before you cheer or boo us, karma is already catching up in the form of a leak in the roof, right above Master Mason’s bed. Cancer and its treatment, having robbed me of so many brain cells, meant that for a few days we put a bucket on Master Mason’s bed and lay at night fretting and listening to the insistent drip, drip, drip that has been the soundtrack to the awful weather. Only when we were getting a man in to look at and assess the damage did Mr Mason think to put a bucket in the attic. Brainwave! But then I am so easily pleased.

My exploding head

by

My head is going to explode. Perhaps not literally but it feels so full of stuff that I am sure it will go bang at some point. I just can’t handle too much information any more. I can’t carry it around in my head. There isn’t enough space. Jury service has been interesting, stimulating, depressing and exhausting, all in equal measure. After a week, I am so very tired that I stay in bed for most of Saturday and cannot be prised from the sofa on Sunday. I sleep and sleep but still can’t muster enough energy. The court we are sitting in seems to be the very furthest one from the jury room involving stairs going up and then coming down again the other side. I can’t fathom out why. Before undertaking jury service, I did explain that I have trouble with stairs. I didn’t say “I get a lot of pain from going up just one flight and every time I stand up I feel as if I am 100 and none of my limbs work” because that would have been absurd. True but absurd. On the second day of sitting on the case, I remind the clerk that stairs really are painful for me and she asks one of her colleagues to take me round another way which involves going through the Judge’s dining room. Obviously we can only go when they are not eating so it’s the first and last time I get to go that way. The other days I haul myself upstairs, walk what appears to be at least 100 yards and then, and only then, am allowed to take a lift up one flight of stairs. Many of my fellow jurors, seeing I get special treatment, decide they want to take the lift, too, much to the consternation of the clerk whose job it is to keep us all together and not lose one of us.

For the last 2 days we have spent our time wrangling over details, bits of information, facts and the like, poring over actual pieces of evidence and arguing about the merits of the defendant’s case. There is a lot of information, not all of it pertinent to the alleged crime but the details have to be drawn out and picked over so we can form a credible response. And we don’t agree. We are truly divided and I am not for swaying. Sadly, the detail of our deliberations has to remain private but I was not impressed by some of the prejudice I saw and the absolute lack of reasoning power of some of my colleagues. The case was serious and carries a hefty prison sentence if found guilty which requires, in my opinion, a concerted effort to try and reason our way through the evidence. Apparently not everyone thinks like I do.

After reaching our verdict today, I ask if I am able to be released. Engelbert Humperdinck springs to mind. Happily they agree and I am let loose to run free again.  But we have a bit of a disaster at home. Mr Mason’s coffee machine has stopped working and we don’t know what is wrong with it. He has tried coaxing it by pressing different buttons, taking all the water out and starting again but it is stubbornly refusing to work and Mr Mason is bereft.

And it’s THAT time of year again. The one where we must send in our tax returns by the end of the month or else we will be hung, drawn and quartered. This year, looking over the financial details of 2012/13, I am catapaulted back into the days of being diagnosed with cancer and the giant hole it made in my working life. Being dropped almost immediately by the company I was contracting with and then working my way through the maze of financial deprivation wasn’t a good thing to look back on. Who wants to look at their finances when they are sick and worrying about whether they will live or not? Not me. But this year will be different, better and brighter. There is a lot to live for.