Day 356: Ups and downs

I woke up at 1.30a with my wrapped hand hurting and my thumb tingling. As much as I wanted to keep the bandages on to possibly reduce the swelling, I thought the pain meant I should unwrap my arm and hand. I slept fitfully after, with my thumb feeling strange until later in the day.

I put my sleeve and glove on this morning when I was getting dressed to try to make it a part of my daily routine as I was told " it doesn't do any good if it's not on". The sleeve still seems to pinch at my wrist, as does the glove, so I'm not sure they are the best. Pity they cost about $450

The kids and I spent the morning at the beach with some of Remie's classmates while Nick went for a bike ride. The weather was perfect and the girls stopped down to their undies to play in the water as I hadn't brought swimmer. The lovely few hours turned foul when it was time to go and Remie screamed at me (and hit me) all the way home because I didn't do what she wanted in terms of helping her. I was in quite a bad mood at the end of it, at which point she fell apart sobbing and saying she was useless. We talked for a bit and she seemed to settle, but that's heavy stuff.

We spent the afternoon at Little Manly for lunch and hanging out with Roz and Simon and the kids. It was a most enjoyable way to spend a beautiful day - the last of winter at that.

There was more screaming from Remie before dinner, so I ran off to my room. She found me later sobbing, which prompted another chat about being brave and positive. I feel so very sad that she is scared and angry and I can't get help for her. I'm going to try another avenue tomorrow as it seems we need a bit more support.

Day 355: Slowing down

Andrea, the physiotherapist at the Mt. Wilga lymphoedema clinic, told me I needed to slow down, reduce stress and relax to give my body time to focus on rebalancing. I did just that today.

After a swim and brekkie with Rach, Jenny and Ally, I saw Erika for a massage and wrapping.  This time she bandaged over my glove, so I'm curious to see the results.

The weather was wet and cool, so we were all at home from lunch for the rest of the day. The kids played, Nick pottered in his workshop and I read and napped.  It was very relaxed. Perhaps more "quiet time" will be part of the changes I'll end up making to deal with my new world order.

Day 354: Support

I'm trying to listen to myself and respond to what I need now. I think this may be a sigh that I'm finally maturing.

First off, I worked out that if I'm going to swim as I've been directed to time and time again, I need to meet a buddy. Rachel was my girl today. It was dumping with rain but she ran in, so I followed. It was lovely as the water temp was twice the air temp 26 v. 13)!  The coffee and chat afterwards helped.

Secondly, I'm struggling with terrible Achilles and general tightness from my months of no regular exercise routine. Enter Renee, my awesome massage therapist whom I've known for nearly 4 years. Her massages hurt but I always feel infinitely better afterwards.

Finally, touching base again with key support people is helping me get grounded after our trip and my recent medical challenge. Alison was a great listener over lunch and offered all sorts of help for Remie.

Two hours after school of having Alex and T at our house making and flying paper airplanes was truly grounding. I'm so thankful I could have that as part of my day.

Day 353: Self-talk

Today I think I can adapt and overcome this challenge. I'm thinking of it as a 12 month learning process. I know it's not going to be easy but at least it's not life-threatening.

I went to the gym to experiment. I didn't wear my sleeve/glove as I only have one set and they'd get sweaty. My arm/hand don't seem any worse for it. I put my sleeve on after showering (Nick stretched it on a 1.5 litre bottle as per Dr. Helen's suggestion) so it was better, but it still pushes fluid into my hand. It'll be a challenge to get a balance.

Remie was in good form all day, which made it all easier. Combined with my day catching up on admin all was good. I topped off the day with a lovely birthday dinner for Rach with families at the Bavarian Beer Cafe, leaving me thankful for good friends.

Day 352: An intensive treatment plan

I went to the Mt. Wilga Lymphoedema Clinic today for an appointment with Dr. Helen, the rehabilitation doctor in charge. Nick and I were with her for about an hour, during which she took my medical history and explained more about the condition, what they offer for treatment and what I could realistically expect in my own case. It was exactly what I had been looking for.

We then met with Andrea, the head physiotherapist. After taking my medical history, she explained in greater detail that lymphoedema is caused by trauma to the lymphatic system (eg lymph node removal and radiotherapy). It can be brought on by a variety of events, and stress can make it worse. Different people experience it differently, with some having swelling in the hand and others not and some having longer and more severe 'flare-ups'.

Andrea walked us through the program they offer in greater detail, talking about the daily massage and bandaging, gym, psychologists and nutritionists. She explained that I'll be wearing a compression sleeve and glove for at least 18-24 months daily and that I should think of it as me post-treatment medicine. She offered me a 4 week daily program (3 hours/day M-F), but given the upcoming school holidays, I'm only going to be able to do 2 weeks starting on 8th September.

We left 2 hours later and I felt like I had finally received a treatment plan that seemed to make sense for the condition. For the first time in weeks I felt a bit optimistic.

Nick and I had lunch before doing a bit of shopping and getting the kids. I spent some time catching up on admin while he did homework with Remie and organised dinner. It was a great break.

Poor Remie is still struggling, having screamed at least a dozen times at one family member or another. She's saying "it's too hard" and telling us she wants to be a baby. She opened up more tonight saying that it's hard having a mum with cancer because I have to wear my compression stuff and then I have to go to hospital for treatment all the time and can't do fun things with her. She also said she's worried that her classmates will make fun of her if she cries in class because she's worried or sad. That's an awful lot for a nearly-7-year-old.

Day 351: Frustration and grieving

Another visit with Dr. Theresa left me feeling sad and blue. She told me I'm going through the stages of grief and I will come to a point of acceptance. She also told me that I need to be wearing my compression garments for all of my waking hours. My l-Dex score went from 60.5 down to 56, but she'd like to see it drop more quickly. Clearly my body isn't doing that by itself, but there's no plan for regular treatment to help it. She was supportive of my assessment and treatment at Mt. Wilga but counselled me that I may not get in there for awhile as they often have a huge waiting list.

My frustration is that no one can clearly tell me what needs to happen. From all the reading I've done, it seems that early intervention is key, but how early is early? I'm wondering if treatment at an intensive clinic will yield better results. Perhaps not necessarily, and that's why no one recommended it earlier.

I finished my appointment and caught up with Ruth. I started my grieving with floods of tears that I expect to see more of before I hit the acceptance point.

In all of my self-absorption and sadness I'd forgotten Remie's book order when I dropped the kids off at French before school. Her poor face crumpled when she realised it, so I managed to drop it by on my way to the hospital.

I was hoping to be celebrating as my one year anniversary of diagnosis approaches, but instead I'm back into appointments. Plus Remie is anxious and scared. Sometimes life is really hard.

Day 350: More reduction in swelling.

I spent most of my kid-free time today catching up on my admin tasks and errands. It felt good to be making at least some progress. I fit a walk in around the errands which was great as the sunshine was good for my soul.

I'm finding the lack of a regular exercise routine quite frustrating. Walking was pretty much the only option today with my hand/arm as bandaged as it was so thankfully the weather cooperated. I may try to create my own yoga routine that I can do when I'm bandaged again.

I took off the bandages about 6p and the great news is that I have fingers, a hand (still a bit puffy) and a forearm again. I can still feel fluid in my knuckles and in the back of my hand, but my fingers are nearly normal and I could get a watch on my wrist. I am amazed at how effective Erika's wrapping was. I'm curious to see if Dr. Theresa will bandage me again tomorrow at my appointment.

I'm encouraged that my arm has finally returned to a state approaching acceptable. Pity it's taken nearly 4 weeks to achieve this result as I think my emotional state would have been less impacted with quicker results. I'm trying to look at this first "episode" of lymphoedema as a real life case study to learn from so I know what to do when it next happens. I'm trying to create my toolkit (therapists, tools (bandages and compression garments) and exercises) so I can use it next time. I'm hoping that Dr. Helen and the practitioners at the Mt Wilga Clinic will add to this when I see them on Wednesday.