Tag Archives: oncology

When Granny tried to pick up Bob’s friend in the pub

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My brain tells me that if I am officially ‘better’ on paper then I should feel better. The fact that I feel as tired as before and now have a lurking pain beneath my ribs on the right side (not that there’s a wrong side) is just plain wrong but there you go; that’s life. This week I have an appointment with Aaron, my Macmillan trainer who comes to give me a pedometer. After a walk to Gibraltar Point, it’s a bit depressing to see I have only walked 635 steps. But I know I’m not really well. I feel cold all day and when I go to bed early, find my temperature is over 38.0 which officially means a call to the hospital. I don’t feel in an obliging mood, though, so decide to watch something trashy while I fall asleep and when I wake in the night, my temperature has dropped so I am OK. My temperature varies a lot, though. Officially, I am supposed to call the hospital if it drops below 36.0 or over 37.5 but that’s a really narrow band and my temperature often drops quite low, even if I’m feeling perfectly well. I think I’m generally a low temperature person. And it’s disappointing about the pedometer, too. Aaron tells me one of his clients straps her to one of her cats if she feels a bit down and enjoys reading the huge number of steps at the end of the day. I think I might try it with one of the animals here on the homestead. If only steps were as easy to do as writing words, I would be a marathon runner. I have a phone call from the lovely Cathy at St Barnabas Hospice in Louth who is going to refer me to the physiotherapist to see if she can help with my breathing and will also make an appointment for some sessions of Reiki which I am really looking forward to. It’s lovely to hear her tell me it will help with my pain and also relax me. I know about the relaxation part from previous experience and I have never tried it for pain before but I am optimistic.

At some point last week we go and buy some furniture. One of us is more reluctant than the other. Yes, you’ve guessed right! Mr Mason is not at all keen but I know where I want to buy it from and they have a sale on and we can go mid-week so we go in and find something we like. Hurrah! Even better than that, it is in the clearance section as it has been made to order and then cancelled. Once in the shop, of course, Mr Mason gets very enthusiastic over the purchase of sitting room furniture, especially 2 chairs which are about a chair and a  half in size. I say they are a person and a dog in size which puts him off slightly. In the end we choose something simpler and I decide to buy some spare covers there and then so we will all be sorted. I think this was after we see the oncologist but time is so smudged in my mind that it all melts into one sticky pool of non-remembrance so let’s just say that’s when it was. No-one really cares. I am always fascinated by (usually) couples who are telling an anecdote and then get hung up on a time, date, place or whatever, even though it is irrelevant to the story. “it was on Thursday” “No, it was Wednesday”. “No, I remember it was Thursday because I went to collect the kids from Mum’s that day” “No, that was last week, don’t you remember? I know it was Wednesday because Bob at work was telling me this story about a bloke he knows at the pub and I told you when I got  home and you thought it was hilarious”. “Oh, was that the story about the granny who tried to pick him up? I’m sure that was Friday, you know”. And so on it goes. So maybe it was after the oncologist, maybe it wasn’t and now we’ll never know the story of when a granny tried to pick up Bob’s friend in the pub.

The dogs are getting along better this week. Dog is still taking pride in getting the whole of Lark’s head in his mouth but she is starting to object and is doing more of the chasing. Her best defence is diving into any handy bush or hedge where he can’t get her and from there she can plan her next move in the game. She is keen on moving items of clothing (so embarrassing to find underwear strewn on the stairs – 3 odd socks and a pair of Mr Mason’s pants making it look like the world’s worst swinger’s party If we did swingers parties, we would do them like Heineken, of course) and it’s hard to find a pair of slippers. One is probably languishing in the garden and the other in her crate along with sundry stolen items. We were told before we moved that swingers have pampas grass in their front gardens as a sign to other swingers. I suppose they just knock on each other’s doors saying “Hello, I’m a swinger, too. Can I have a cup of tea?” or something. Imagine our distress to discover not only do we have pampas grass on the property but that it is in the back garden. What does that say in the Swingers’ handbook, I wonder? On second thoughts, I think I would rather not know.

So the music constantly playing in my head is this, of course.Sit back and enjoy Yakkety Sax by the great Boots Randolph.

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Up with the Lark

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We have Mr Neary visiting this week. We have not seen each other for ages but, as with all good friends, it doesn’t matter a bit and we are into deep conversation before we have even left the station car park. There is so much to catch up on but we are really pleased with his reaction to our new place. Firstly he is blown away by the countryside. It is looking pretty at the moment with the fields of rape giving an acid yellow slash through the many shades of green and brown. Trees are in blossom and it’s looking its best. We go to a pub for lunch and when we are sitting down with drinks, he asks “Why did you choose here?” “This pub?” Mr Mason replies. “Well, not really. I meant why this part of the country?” It’s quite hard to give a coherent explanation so I tell him about our trips to Lincolnshire and how we loved the look of it, the coastline, of how proud the county is of its food and that we loved the Georgian towns, no motorways and how relaxing we found it. We had planned to move before I was initially diagnosed with cancer but then postponed it. I’ve probably told you all this but you know how bad my memory is. We were just about to set the ball rolling again when I was diagnosed with secondary cancer and, despite incredulation on the part of my medical team, we made the decision to go. If not now, when? That has been our motto to get us through the worst of the moving experiences. The portions of food in the pub are enormous, so much so that half of mine comes home in a doggy bag for Dog. Mr Neary is then enchanted by the house and its situation. We take Dog out with us for a walk round the castle, a walk I can manage because it is just over the road. Mr Neary feels quite emotional when we go in. He thinks it’s a feeling of pride. We are still so full from lunch that we can’t manage the steak pie we have planned for dinner so we just have cheese on toast and a piece of Arctic Roll each, a request from our guest. Actually, it’s not real Arctic Roll but a supermarket version. We coudn’t find the original. If you are wondering why I put Mr Neary’s name with links, it’s because he is an extraordinary person who has fought an incredible battle and won, all for love. It has cost him a lot, and I don’t mean financially, but I am so proud of what he has achieved. In the morning he asks if he’s allowed to come again and he goes off to the train station feeling refreshed but having missed an opportunity to go on the Victoria Derbyshire show to talk about human rights.

This week I have my first treatment locally. The set-up is very different and the chemo suite is much smaller than at Charing Cross. Only patients are allowed in so Mr Mason has to wait outside, entertaining himself by reading Facebook and chatting to other people waiting. Firstly I am weighed and my height taken by a very stern nurse called Marta. She also does observations and even takes my pulse so I feel thoroughly taken care of. She suggests I take a chair facing the window as they have some ducks who have sneaked in and have a brood of ducklings running around after them. “The thing is”, she says, “they are all brown except one which is yellow. So what does this mean? Were there 2 fathers?” I don’t know enough about duck reproduction but I like the way she raises her eyebrow as she says it. The ducklings make an appearance which makes up for the loud and irritating conversation being held by a woman in a purple wig and the man sitting next to me. I don’t mind people wearing purple wigs and might even have considered one myself at some point but as soon as I see and hear her, I know she is going to dominate conversation which she does, with ill-observed comments and a lot of hot air. We hear how MacDonald’s will poison you if you eat their food, you can’t have a takeaway and not to buy bread from a market because everyone squeezes the loaves so they’re full of germs. I point out that she can always check the environmental health rating for any premise that sells food by looking online but I get a laser look that says “Keep out of my monologue” so I do. The ducklings are much cuter. Apparently London is a horrible place and if you dropped a bomb on it,only 3 English people would be killed and the rest would be foreign. This is apparently a good thing and no-one would miss the place. She engages in a bit of a double act with the man sitting next to me as they bang on about London and its faults. I tune out. As she leaves, she gets to ring a bell to signify that it is her last treatment so I allow her some slack as she is probably on a high from that. The man sitting next to me then turns to me for conversation. I tell him we are from London and he doesn’t go through his London routine but talks a lot about Yorkshire and how it’s the best place in the world. When he finds out my Dad is from Yorkshire, he says “Well, at least you’re half Yorkshire!” which I presume is a good thing in his world. The nurses in the chemo suite are lovely and have time to sit and chat a bit which is nice. We get fed and watered while we have treatment and I save half my sandwich for Mr Mason who I know will be starving by the time we leave. Indeed he is and practically inhales them.

The following day I get a phone call from my previous oncologist’s secretary inquiring how I am getting on with the new oncologist. I tell her about a couple of things I am not happy about and she suggests ringing Virgil’s secretary and asking who the most experienced breast cancer specialist they have is. I can then ask to be referred to him/her. I am quite touched that they have thought of me and made the effort to see that I am  happy and well looked after. There is also another thread running through the conversation which I am not able to articulate yet but I can tell they are not content. She agrees she will not take me off Charing Cross’ books until I have spoken to her to confirm things really are OK. I make the call and the secretary is very helpful, telling me Virgil is a locum replacing a consultant who had been there for many years. She says there isn’t a senior consultant at the moment but that there are 2 at Lincoln General Hospital and tells me how to get a referral via my GP. I look them up and find one of them I have seen when I had a high temperature and the other is a specialist in breast and lung cancer. He sounds like he might be right up my street so I make an appointment with my GP to get the new referral. I ring the Charing Cross secretary back and explain what is happening and she fills me in a little more, saying they sent my complete file so that it would be there before my first clinic appointment and so they were puzzled by all the requests Virgil had made for information. There were obviously other things she wasn’t happy about but didn’t divulge which is fine.They are keeping an eye on me which is brilliant. She thinks I should have an appointment within 2 weeks. I have an appointment for my echo which will be on my birthday next week. What a lovely treat!

The most exciting thing we do this week apart from serving Mr Neary generic Arctic Roll is go and collect the new dog. We choose Lark, the brindle bitch with the white V on her face. She has never been away from her mum or sisters before so she is very shy and uncertain. We leave Dog at home so there will be no problem with 2 dogs in the car and on the way home stop at the pet shop to buy a new dog brush. Unsurprisingly, we can’t find Dog’s which is a particularly good rubber one. So many are metal and too harsh for his fine coat. We get her out of the car and only a few steps away realise it’s a mistake. She looks extremely stressed and twists in the collar so we bundle her back in to relax in the boot. Although she is house-trained, she has been in kennels with her sisters all day so she’s not used to being in a house a lot of the time and she has a couple of accidents. Mr Mason is aghast at the amount she excretes and brings me into the garden to marvel at it. It’s true, it’s huge – as big as her head. Where does it all come from? Dog tolerates her although he moves himself upstairs to the bed in my study. She sleeps in her crate at night and in Dog’s sitting room bed during the day and he doesn’t complain about that – he just takes himself off. It will take them a while to settle in together but so far it’s all going well. Whippets most often carry their tail between their legs, unlike other dogs, but still wag them – it’s just under their belly they do it. I come downstairs on Friday morning and get a nice waggy tail so that’s a good sign she’s attaching herself to us. We are having to go back to basics with Ms Dog with toilet training. recall and sitting etc. I will leave the hand shaking and roll-over to Mrs Safaie and Mr Mason jnr to teach her. I’m sure she’ll be more than happy to oblige.

Photos courtesy of Sue Phillips, Ladygrove Lark’s breeder.

Lark 2 Lark 1 Lark 3 Lark 4

The no title blog

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I’m having a fibromyalgia flare up. The pain and the exhaustion seem to stem from this rather than the chemo and radiotherapy. I could easily sleep 12 hours a day and every little bit of me hurts so I’ve diagnosed myself and decided this is what it is. So what’s the remedy? Some trashy tv and very poor daytime movies have helped. I’ve developed a raging sugar craving which I’m trying hard to ignore but that’s very difficult. The whole sugar question is also an interesting one. Sugar feeds cancer, this we know. Sugar is also not good for you, particularly in larger quantities. Fruit and some vegetables obviously have sugar in them but some of my cancer chums even steer away from those. Fruit would always be my first port of call and I really enjoy it but I feel conflicted by the amount of information there is out there about diet in cancer recovery. Ooops. I start writing about Fibro and soon am back on the cancer track. There really is no getting away from it. But soon I am going to see the Physiotherapist who will provide me with some kind of exercise and stretching regime and then a visit to the Pain Clinic to see how I can control it without recourse to Amazonian quantities of drugs. Unless it’s another kind of Pain Clinic altogether and will be full of people attempting to give me pain. If that is the case, I think I may have to retaliate and try and deliver the kind of pain I feel. With my tattoo sleeve, I feel I could do it.

Monday will see me at the Rarer Cancers Conference. Apart from hearing about all sorts of stuff (I can’t imagine what), I will get to speak to an Advocate to help me talk to my Oncologist about my kind of cancer. Why would you need that? I hear you say. Well, when I was originally diagnosed with cancer, I was diagnosed with Inflammatory Breast Cancer. IBC. It’s rare and aggressive. Very aggressive. After a few doses of chemotherapy, at some point I got hold of my notes and had a little look through them. The IBC at the beginning was still there but later on, it was talked about as Invasive Ductal Cancer. IDC is a very different fish to IBC. IBC and IDC have the same pathological origin (or so I am told) but the point that worries me is that their follow up is very different. IBC cannot be seen on a mammogram and yet that is something I have already been given. Hmmm. Not good. IDC is less aggressive and can usually be seen on a mammogram. Are you following me here? So the conference has come at an amazingly good time as I should be highly educated on IBC follow up by the time I see the new Oncologist. My week is interspersed with hospital appointments (Echocardiogram, Oncologist) and groups at Maggie’s with a meeting at Southampton General thrown in for good measure. That pretty much takes up my whole week and that is the general flavour of my life at the moment. It’s ragbag and disconnected but I kind of like that. I don’t want to be back in the full-time rat race. I still dream about work. I dream about one particular line manager I had (and some of you will know who this is) who bullied me mercilessly, mostly due to the fact that she had spewed so much bullshit in order to get employed that she felt threatened by anyone who was vaguely competent. She undermined me determinedly, sabotaging my work and being defensive. It was a horrible time and the fact that I still dream about it shows how deeply ingrained it is on my psyche. So I am in no hurry to get back to that and, to be honest, still feel way off being ready for work. I know I am lucky. I know other friends who have to go back to work after cancer simply because of economics and I take my hat off to them. No doubt in their shoes I would do the same but I am grateful that I’m not in that position. And so time for bed, I think. Tomorrow I am meeting with Will who is doing the website for Annabel’s Angels and I have to write for that. If you’re unaware of AA, please take a look at the website – http://www.annabelsangels.co.uk  and see what we’re up to. That’ll keep me busy.