Archives For lymphoedema

The 7th of November. 

Feeling less shit today – no murdery dreams and my muscles are not so sore, so overall generally better. 

This morning, I wrote up a blog post while shouting at the Tory voices on Victoria Derbyshire. Eventually, I had to put on an episode of Bones because I was getting my blood pressure up. Then I put together the final gnome and took some photos of them all together. Now they’re sitting on the mantelpiece, having a lovely time. 

After lunch, I started work on the next Christmas project, but didn’t get much done before Ann and Tom, the couple interested in Callie and Carlton arrived. They pretty much immediately fell in love with them, as I expected. They are just too gorgeous to not adore. They’re going to change the kittens’ names to Molly and Bertie, so we’ll have to get used to calling them that. Plus they’ve given us blankets for them to get used to/put their smell on. 

After they left, I tried ringing the GP again to talk to this secretary who’s been trying to talk to me. I rang this morning, but she wasn’t available so I was told she’d ring back. When I tried again, she’d left. So then I talked to the team leader who did some investigating, but couldn’t get to the bottom of it. She’ll try again tomorrow, and maybe I’ll eventually find out what they want!

The 8th of November. 

Well, local anaesthetic in the eyelid is, much like most of the local injections I’ve had, not that bad. The only distressing local in the past was for the bronchoscopy, but that was for more psychological reasons than physical. 

Anyway. I was up just before six, because we had to be at the QE for eight. I was first on the list, which I was pleased about. I met Mr. Kolli before going into theatre, and we had a brief chat before he drew an arrow on my forehead so they didn’t do the wrong eye. Then I didn’t have to wait long for the theatre to be ready, so I put on my gown (over my clothes) and shower cap and went to lie down. 

A nurse put some music on (classical, disco, La La Land, Sinead O’Connor) and poured what felt like a gallon of two different strengths of anaesthetic drops in, with a tissue at the side to stop them escaping. Another nurse took her place, and I was given his hand to hold while Mr. Kolli injected the local into my lower eyelid. They both warned me about how awful it would be, so I was surprised to find it really wasn’t so terrible. Not that it was pleasurable, but I didn’t scream or even flinch, which he can’t remember witnessing with any previous patients. Brave Kathryn strikes again. 

Finally got round to zapping the rogue five lashes, and I didn’t feel a thing. So now they’re gone. I have antibiotic ointment to do four times a day (along with all my other drops) and I sported a very fetching eye patch until half past one. We’ll see if it has held off the bruising tomorrow. 

The 9th of November. 

This morning was arduous and long and frustrating. First was lung function. For the first time since I was at the children’s hospital, I had to get in the box (see photo below). Same tests, just different room/equipment. They took forever, it seemed, partly because I had to do one of them four times, plus she had to get some blood from me and it all just added up. Knackering. Then I saw Dr. Thompson, and he was not full of joy. The numbers are the worst he’s ever seen (for me), which is what I was expecting. We compared some x-rays from now and last year, and it is quite clear that the right lung has shrunk and the chest wall has sunk in, so I have less volume and the way I feel now is the new baseline. Great. 

Got out of there about half eleven, so just had time to get some coffee before going to see Andrew. That was a very confusing chat. It seems the lymphoscintigram actually showed that the right side works better than the left, because the lymphatic system is compensating for the rubbish venous flow. So now he wants an MRI with gadolinium so we can get a definitive picture of my anatomy. Which will require careful booking because he or a colleague will need to be there. JOY. And even when we know what is going on where, what we do is still up in the air because so many things could go wrong. Numbness, he cannot fix, but can sort out another MRI for that and refer me for nerve conduction studies. 

I don’t make any sense. 

The 26th of October. 

Thought I should mention that my cough has essentially gone. The odd one here and there but generally, I am feeling much better. 

This morning, I wrote up a blog post, then got back on the crochet. We put my sleeve back on, because the numbness is still exactly the same, in intensity and area. I’m just waiting for it to be next week now – nothing will happen until then. 

After lunch, I had a hairwash, then it was time for the new episode of Riverdale. Mommy was out with Grandma for pretty much the whole afternoon, so I then settled down with the last four episodes of The Blacklist. Frustratingly, I did not get all the answers I wanted but how else would they get me to keep watching? Crochet was also somewhat irksome because I think I’m going to run out of wool. AGAIN. 

The 27th of October. 

I did not run out of wool! Close, but I managed. 

So! This morning, Daddy was off to the QE (not me for once) to have steroid injected into his ear to try to alleviate his Ménière’s. Without local anaesthetic. No thank you. I know I have plenty of steroid injections but I have the local. He will next time!

While he was doing that, I was assembling the Christmas crochet project I’ve been working on. It is now complete except for one final accessory. 

Mommy went out just after lunch to pick Daddy up from the hospital because he wasn’t supposed to travel alone, and it was at this point I put on Stranger Things 2. I got the first three episodes watched (Mike and Eleven is the purest love story of all time) and while I did that, I turned a skein of wool into a ball. I needed to do that before I use it because otherwise it gets knotted up in a tangle which is unbearable. To do this, I had to wrap it around the legs of two upturned tables while I sat on the edge of my seat, which killed my back. Being able to relax back was bloody glorious.

The 24th of October. 

Well, here’s a weird new development; part of my lower arm has gone numb. When I touch it, it feels like it would if I had had local anaesthetic put in. Just dead. 

I rang the lymphoedema nurses to see if they thought it was because of the new compression garment. They said probably not, but to take the sleeve off for a day or two, and see if it changes. So far, it’s still exactly the same. I have to ring them on Thursday to let them know but I’m pretty convinced it’s something internal. I might email Anne Dancey as well to see what she thinks because Andrew is unavailable as it’s half term. 

This afternoon, I was at the hospital for Dr. Richter’s clinic. I didn’t see her, but one of her colleagues, Dr. Antrobus. He wanted to know about my infection history, so I tried to run him through the significant ones. Most of the discussion revolved around the pneumonia this year and the e. coli/klebsiella/sepsis debacle of 2013. He has ordered a couple of blood tests to look at my levels of antibodies and what pathogens I’m immune to. He thinks there probably isn’t any treatment that they would give to reduce the white cell count, and he’s going to write to everyone concerned to basically say that it may well just be one of those things and they should just accept it and give me what I need. 

The 25th of October. 

Having so much bizarre shit go on with my body has made me more neurotic than I think is normal. I emailed Anne this morning to see if she had any ideas, with a photo indicating the affected area. She had some very specific thoughts (including technical medical language) and thinks I need to see Andrew asap. I then emailed his secretary with what she said, and she is so patient with me, bless her. I am sure I am a nuisance but having been dealing with this for over ten months, I just feel I have to push all the time. She and the appointments lady are on the case and as soon as Andrew is back he will see all the emails and I’m sure there will be discussions. 

This afternoon, I have been doing Christmas crochet and watching The Blacklist. I am nearing the end of the first season now so it’s all getting rather tense.

The 16th of October. 

Started my day with a phone call from Shaki. She was outside, about to put some paperwork through my door, but didn’t want to come in because she has tonsillitis, bless her. Poor us. 

Once dressed, I got downstairs and promptly chucked my water over the table in the living room. This meant I had to take everything off it, including the heavy glass top so the embroidery underneath could dry. Well done me. 

I rang Emelda to discuss my next appointment with Andrew, but found out she’s on annual leave. Rats. I’ll try Christine, the appointments lady, again tomorrow. Then I wrote up a blog post, trying to ignore the apocalyptic light that’s been over us most of the day. 

Lunch, then sat here crocheting a cowl most of the afternoon. Suddenly it was half past four and we had to go to the chiro for my rescheduled appointment. I knew it was going to be painful, but necessary. The muscles that go up either side of the spine had contracted so no wonder I’ve been in more agony than usual. Plus lying on my front on that floor has been bad for my neck so it was a generally unenjoyable visit. 

I also spoke to a lymphoedema nurse because I’ve not been able to wear my compression garment today because it has made the skin on my elbow raw due to it being so tight. Going to try another brand. Why is nothing ever simple?

The 17th of October. 

This is exhausting. I think last night was better? The cough has been pretty similar today – I’m still bringing up phlegm the same colour as before so I emailed Dr. Thompson again. Today is the last day of the co-amoxiclav, and the last sputum sample I gave was essentially spit so obviously it hasn’t grown anything. Anyway, he wants to leave it a few days and we’ll see how I am. 

Spoke to St. Giles again and they want me to have a made-to-measure sleeve, so I’m being measured for that on Thursday. Also spoke to Mr. Titley’s secretary because I haven’t had my letter about Tuesday yet. She said one has been sent, but if it doesn’t arrive by Thursday I’ll be ringing her back. I do need to know what time to turn up etc. This cough better have fucked off by then too or we’ll be in trouble. 

I spent my afternoon watching stuff on Now TV and crocheting the cowl. It’s finished now. I watched the Nashville concert at the Royal Albert Hall and got emotional at Stand Up because it reminds me of Dean. I miss my friend. 

The 10th of October. 

I live on the floor now. 

Nights are the same, coughing until I fall asleep, then in the morning I’m okay until it starts again. Today, I got a blog post written up, but not posted before it was necessary to lie down. 

Rosemary came for lunch and she arrived to find me on the ground, which is always fun to explain. I got up to eat, but the rest of the afternoon has been face down. I watched an episode of How to Get Away with Murder on my phone, and listened to James Arthur speak very eloquently about mental health on Radio 5. 

It is something I have long struggled with, having been diagnosed with depression at fourteen, and it has varied in severity over time. I have been medicated since I was eighteen, which helps for the most part. I still have days under the heavy cloud, sometimes they stretch into weeks, months, but they end. I know they end. And I’m forever going to deal with the demon that is anorexia which really took hold when I got “better” from cancer. I was in treatment for over a year before I decided I wanted to change. You can have all the support in the world but if you’re not ready to stop self-destructing, you won’t. I still deal with its voice, I worry about my body, how I look. But I know that is not who I am. I am the sky.

The 11th of October. 

I am so tired. I had about three hours of sleep because I was just constantly coughing, and I had to get up at seven because I had to be at hospital at nine. 

It was for my lymphoscintigram in nuclear medicine so we could finally find out if my lymphatic system is the problem in my right arm. I got called through about half nine, having alienated everyone in the waiting room with my cough. I had two injections of radioactive dye in the webbed spaces of each hand, then I had a series of x-rays to see how quickly the lymphatic system would dispose of it. Each scan took five minutes in which I had to be completely still, with my arms stretched out in front of me on the bed. I had six in total, twenty minutes after the first, forty minutes after that, an hour after that, and an hour and ten minutes after that. The final one was me standing up with the machine moved to scan my body. We were able to discern that the right side is not functioning properly, because the dye was long gone from my left arm, but had got stuck in the lymph nodes near the elbow on the right. So now I’ll see Andrew again, and we’ll make another new plan. 

We finally got home at two, had lunch, and now I’m on oxygen because I’m so drained, my sats are dipping. 

What is this rib doing? It digs into the floor and it HURTS.

The 18th of September. 

Very busy morning. An apt start, considering the rest of my week. Start as one means to go on. 

Shaki was concerned about Henrietta after I’d told her about our lack of progress with her, so we took her to the vet. The only time they could offer was 11am, so I finished up my coffee, then we had the fun job of trying to get Henrietta into the carrier. Basically we chucked a lot of Dreamies in there and shut the door. She did not like it. 

At the vet, she came out and slunk around the floor, hiding under the table, behind the bin, behind a pile of boxes, hissing at Daniel. He eventually cornered her with a towel (like a matador), and gave her an injection of long-lasting antibiotics. She wasn’t going to allow anything else. She even did a couple of protest poos in the corner. She’s been in the dog cage since we got back, because Shaki wants to come and see her this evening. Hopefully the antibiotics will make her feel better, and she won’t be so angry all the time. 

This afternoon, I’ve been doing Cats Protection admin and watching Bones, while looking at my new crochet book that arrived today. It’s full of mix and match dolls so I can make people! Already got one commission. Better get some flesh-toned wool. 

The 19th of September. 

This morning was lymphoedema clinic. Mommy and I set off to Lichfield for ten, and when we arrived at St. Giles, there was a little bit of waiting around before I was called through. I met a nurse called Jemma, and I had to explain my history to her, paying particular attention to my past episodes of swelling and the timeline. We had a very long conversation, and because of the SVC narrowing, their protocol doesn’t allow them to fit me for another compression garment. She did measure me, in case they can give me one in the future, and it was interesting to learn that the right arm is 37% bigger than the left. So no treatment today – it really is all up to Andrew for now. 

We got home around lunchtime, so we ate, then Mommy went back or to Grandma’s. I went upstairs to sort out stuff to take to London tomorrow while I listened to the new episode of The Bugle. I think I have everything sorted. Just have to chuck it all in a bag tomorrow morning. 

Tonight I am out at The Glee seeing The Horne Section. My first of two consecutive nights out in a row. Getting ready to be exhausted.  

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The 12th of September.

Today has been fairly acceptable, pain-wise. I had to bend over this morning which my back didn’t like, and I’ve had the occasional twinge, but moving has been much easier. I had a longer sleep, which I think helped too. 

Quiet day for me; this morning, I wrote up a blog post, and tried on two dresses that I had ordered. Keeping one, sending the other back. Chatted with the kittens. I think bribery is working on Hugo, as he’s not running away from me quite so much. 

After lunch, I perused some crochet patterns and did some experimenting with different sized hooks, eventually deciding to just make a scarf/snood with some wool I bought to get free delivery on an order. I watched some Bones, then went to sit and give Hugo treats while I stroked him. He’s getting better at it. Even Harvey wanted to come and join us watching Buffy, although he doesn’t care about Dreamies. 

The 13th of September. 

Well it’s been a rather productive day. I saw Anne Dancey this morning about my arm. I explained my situation, and my history, and she examined me. She was pleased to hear that Andrew is organising this nuclear medicine test, as she would do something similar, and would like to see the results when they come through. Let’s hope the appointment materialises soon. She thinks it is probably vascular, but that a proper compression garment and seeing specialist nurses will help me, so it’s handy that I’ve got St. Giles (who are the same team she uses anyway) next week. If I do need lipo, she will provide it, but I have several other avenues to try first. 

We popped into town before going home, to take back two of the three coats I’d ordered from Zara, then had to get straight back home so Mommy could get to Grandma’s for 12. 

This afternoon is used up a second ball of wool on the scarf, so that’ll be done by the weekend, and I had a bit more Hugo petting time while listening to PM. I think we’re making progress. Henrietta, not so much.