Archives For lymphoedema

The 6th of July.

Ah, home again, where the water from the tap tastes good.

Up very early because we left before half past eight. First, we drove to Ipswich to drop off Christine at the station there, then we continued for three and a half hours to home. My back was horrific.

We got here just before one, so we had time to pee and have a drink before Mommy and I went to The Spire for my cross-match. The receptionist sent me to the wrong place, so we wasted twenty minutes waiting for someone who wasn’t coming. Thankfully, a member of staff was helpful, and suddenly everything happened very quickly. I went to the right place, and the woman in charge came to apologise profusely and make sure shit got done. A nurse came to get me, and she’d bleeped a doctor to bleed me. He had to have two goes, but he got what we needed. On the way out, we were stopped by the manager again, who qoffered us free coffee and cake! We said yes please, because we hadn’t eaten since breakfast, and it was delicious.

We stopped at M&S on the way home to buy some dinner, then this afternoon, I have had my first Hibiscrub shower (I have to have another one in the morning) and a hairwash. Having to blow dry one’s hair in this weather is awful.

I do hope I sleep tonight.

The 7th of July.

Liposuction day!

I am exhausted, swollen, oozy and sore.

I got up early to try and drink loads of water before I had to be nil by mouth at 11. We got to The Spire at about twenty past, and someone from the ward came to get me and take me to my room. It was a slightly nicer version of an NHS cubicle room – pretty much the same, but I could lock my cupboard and I had a wardrobe. Fancy.

A nurse came to admit me and do blood pressure, sats and get a urine sample. Then they sent the doctor I saw yesterday to try and get some more blood from me because they were unhappy with the group and save from then. Unfortunately, my veins did not want to cooperate, and after two tries he decided he would let the anaesthetist try in theatre when they put my cannula in.

The anaesthetist himself, Gerwyn, came to see me next and we talked about all the boxes I had ticked on the form (he thinks I probably did break the record). We discussed the regional block, the risks, what else we might need to do. It all sounded very promising so that was grand and off he went. Then we just had to wait for Anne!

She came just after two o’clock and drew all over my arm to show where she was going to go in (basically everywhere), took some pictures for comparison, then I signed the consent form and it was time to go!

In the anaesthetic room, Gerwyn had two attempts at the cannula, unfortunately settling on the vein in the underside of my wrist, although he did put some local anaesthetic in first so it wasn’t as uncomfortable. Couldn’t get any blood but it was unlikely that I’d need a transfusion so nevermind. Then he ultrasounded around my collarbone to find the nerves he wanted to use to make my arm numb. We had to wait for it to kick in, then he started spraying me with the cold spray and poking me with a blunt needle to see what I could feel. Turns out a brachial block can’t numb the inside of the upper arm or the back of it, so they would try and get some local infiltration in theatre.

When we went in, I asked if we were going to do a Who, which they all found very amusing because nobody had ever asked that before, then they asked if I would lead it, so I did! I was prepped, made all clean, some leg massagers were attached to my calves to prevent me from getting another DVT, and a screen was erected in front of my face to keep the sterile and non-sterile areas separate. That was annoying, because I had wanted to watch. However, they asked if I wanted any music to entertain me, so I requested Death Cab. They were unsure until they heard it, and then they realised they are lovely so we just listened to them for two hours while Anne hoovered all the extra fat out of my arm. The noise is like a combination of an electric toothbrush and a drill. And in the places where it wasn’t numb and the local anaesthetic wasn’t reaching, it felt like she was shoving a long drill bit in and out of my arm. It was painful enough to get past just clenching my jaw – I screwed up my face a bit and even emitted an “Ow.” That means it is bad. If you are planning on having liposuction ever, I would recommend making sure you can be entirely numb, and if you can’t, be asleep. It’s not pleasant. When she was finished, all the little holes got stitched up, then covered in Mepore dressings. My entire arm is Mepore. Then, they had to try to get a compression garment over the top without messing up all the dressings. I had a quick look, and she was not kidding about the bruising. It’s rather dramatic. That was tricky, but they did a reasonable job. Blood and fluid has oozed out through it constantly since then, and it’s supposed to carry on until tomorrow evening. I’m not supposed to change the dressings for ten days, but I can’t see how they’ll still be viable even after tomorrow. I’ll ask Anne when she comes round in the morning.

When it was all done, at about quarter to five, I was taken to recovery, where we saw the very end of the football (It’s coming home!) and everybody told me how well I’d done. Anne said it went really well, and she removed a whole litre of fat. A litre! Even she didn’t expect there to be that much. After about half an hour and a much needed glass of water, I was taken back to the ward.

Here, I have had to do everything one handed, because my right arm was useless until about 9. I can flop it about, like Harry Potter does when Gilderoy Lockhart magics away his bones. I managed to get my phone out of the cupboard and ring Mommy, so she could come and see me because she wanted to. Then I rang Christine to tell her how it had gone, because it was easier than texting. I was brought the sandwich I’d ordered before surgery and some coffee, which happily did not taste like garbage. I was so hungry but it’s hard to eat an egg mayo sandwich with only one hand. Mommy arrived, I told her all that had happened, and she helped me sort out the sheets and shuffle myself up the bed. She left at about twenty past seven, and I lay and waited for my arm to come back to me, sending her a video every time the mobility moved up the arm a bit. By 9, I had regained most of the movement and sensation. It’s got its cons though – now I can feel again, I’m aware that it is quite achy. Will ask the nurses for some codeine, see if that helps. Then I will try to go to sleep. Not feeling optimistic.

The 26th of June.

Oh god it is too hot for existing. No gym this week – it’s hard enough to breathe doing normal activity in this heat, really don’t think exerting myself is wise.

This morning, I typed up a blog post, although I have just realised that I didn’t actually post it, so I’ll do that once I’ve finished this.

Daddy took me to The Spire for twelve, for my appointment with the lymphoedema nurse. She measured my arm for my sleeve, and apparently I will be wearing it for quite a bit longer than six to eight weeks. I will see her six weeks after the surgery, which is when all the swelling will have calmed down a bit.

On the way home, we went to Tesco to buy ice lollies. Ended up with Calippos, Mini Milks and Fruit Splits, so we have loads of choice. Calippos give me flashbacks to Ward 8 after my liver transplant, became I could gnaw on them and not throw up, because flavoured ice was one of the only things I could actually digest. Eating them now, in the sunshine, is highly preferable.

This afternoon, I have been making my extra hexagons. Three colours left to do.

The 27th of June.

Pre-op day! Had to be there at ten thirty, and Daddy had to go to work but thankfully Alison was able to take us. It was pretty straightforward – we went through my history, albeit briefly, because they don’t need to know everything, talked through what I’m having done, had some bloods done, blood pressure, urine sample. That was entertaining because they gave me a she-wee-like device to get the pee into the bottle. I’m not sure how helpful it was. I’ll need to pick up a prescription for some pre/post-op antibiotics, and I might have to go back the day before for a group and save if they think I might need blood. Unlikely.

This afternoon, I have finished all of the hexagons, for definite this time, and been vaguely aware of the Germany/South Korea match. I also had a somewhat infuriating chat with the mechanic who’s fixing Mommy’s car. I told him multiple times that I wasn’t her, but he refused to hear it and just kept talking so I had to pretend it was my car and tell him I’d get back to him about picking it up. Thankfully not long after that, Daddy got home so he went down there to deal with it. I now understand Mommy’s reaction to that guy.

The 28th of March.

I have been outside!

This morning, I got up a bit earlier than usual, which meant I had time to write up my blog post before we had to go out. I had a chiro appointment at eleven, which was sorely needed after all the crocheting I’ve been doing. These jumpers have rather fucked up my neck – too much sitting here, looking down. Trine had to apply some rather intense pressure to some knots and ooh it was painful.

From there, I went to the gym. I met up with Karen, but there wasn’t much for her to show me today. I just need to do my thing for a few weeks, then come back to her with my progress to talk about any changes.

I worked out for about two hours, getting to do everything in my preferred order which was most pleasing. Even more so was that when Mommy picked me up, she’d been to M&S where they had a pretzel and a cinnamon swirl!

This afternoon, I have returned to the crochet (trying to look up more often) and watched thimgs that recorded last night. I did some screaming at How to Get Away with Murder because of Connor and Olly’s wedding and Scandal crossover! Going to be SO GOOD. I haven’t actually watched Scandal, but I feel very very excited about this.

Tomorrow I am finally going to find out exactly what is going on in my arm. Let’s hope, or I’ll have a breakdown in the middle of Andrew’s clinic.

The 29th of March.

Hm well not really proper answers. I love going to see Andrew because he’s very punctual and I never have to wait when I am called through.

Basically, we don’t know why my arm is fat. The pictures from the MRI show that the veins in my neck and chest are as good as they can be, and any further intervention using stents or whatever won’t really make any difference. So I asked if we can look at my actual arm to see there is a stricture anywhere, because the forearm is where I get pain, where it feels like things are being squeezed, and he’s going to do an ultrasound in it when I go in for my steroid injections. That’s all that’s left, really. I think I will email Anne Dancey and ask her if there is a scan she could do that would determine the exact composition of my arm – what the veins and lymphatic system look like, what is fat, what is fluid, and then what can be done with the results of that. This would be so much easier if I weren’t allergic to contrast.

We picked up Christine at New Street (eventually), and this afternoon I have been crocheting the second sleeve of the jumper and starting Scandal. I’m doing this one longer, so I’m going to have to unravel the first one and do it again. I have enough wool.

 

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.