Forum Discussion

massiel's avatar
massiel
Member
10 years ago

Most impressive boob (medically speaking) - cellulitis chronic and recurring.

Almost holiday long weekend - Club Medicare

I'm just home from a week stay at CLUB Medicare (the local hospital).

Friday 5.30 pm in country NSW, packing for the first break in 2 years. Accommodation booked, car filled with petrol, camera ready, FitBit ready and an itinerary promising I was going to take it slow.  Had been so very happy all day. Husband looked so happy, the sun was brighter than ever!

Had not felt this happy in so long I was thrilled to be packing for a getaway and not for an oncological treatment (for a change).

When all of a sudden, bad headache feels like my head is on fire. I try to sleep it off. Much to my horror, it is another trip to ANE (accident and emergency). Tried to fight it and resist, but 39.4 fever said differently.

It's always on a Friday, when medical staff is limited or skeleton, and it feels like a medical lottery to see you get someone who understands your situation and can help you.

Plus it feels like the whole world is going on holidays and celebrating (life except for me in the emergency). Lucky there so few people that night.

This is my 3rd bout of chronic cellulitis this year since March in the area where I had radiation in the left breast (finishing December 1 last year).

Only a fortnight ago I saw the oncologist and he explained that a small group of patients have to deal with this. He showed me that the area I had radiation showed significant impact.

And it is a long process involving reading signs of an onset, and going on antibiotics. At the most extreme cases there is someone who has had to go on antibiotics for life.

Symptoms are sniffles, a feeling similar to head cold, run down. For me it turns to a raging fever within 2 hours and a very VERY hot red breast follows overnight it turns angry red, swollen and incredibly painful.

Its the one time in my life I show my boob to medical staff and their mouth is wide open. One nurse said it should come with a warning like SBS. I was even told that it was "spectacular" in terms of a medical example. 

Pink Size 22

Is no longer my top size, it's the size of the canular that fits my veins, as they had so much trouble finding the right vein to get antibiotics. After 6 attempts I had nothing left. 

I told my husband "I went to my happy place and trashed the place".

In total I have 4 canulars over 6 days, with an average of several misses. That's about 10 extra attempts (holes and bruises). But I know there are people with much MUCH worse situations so I tried my best to "suck it up".

Long term situation - what lies ahead?

Given it's my 3rd version of this situation, I'm rather worn out and I'm not sure how much more I can take of this!

What I need to find out is what lies ahead. I feel an urge to be prepared as I have so much I want to do, like my real thesis and not my part-time medical history thesis. I'm using up my brain for medical stuff when I want to be using it for my study. I'm so scared, sick and run down I'm worried I'm going to miss something vital. I lie awake worried how my life is getting worse, run down and never ending.

So writing it all down here so I can sleep better tonight. Before the nausea gets the better of me.

All these questions....

  • Is there a leading specialist in cellulitis related to breast cancer radiation. If so, who are they? How can I access the best possible information from country NSW?
  • Anyone studying this stuff I should find?
  • Is it true I may end up on antibiotics for life? If so, what other nasty consequences will I face (given I have other serious health issues)
  • Is there anything I can do home wise to make it better? 
  • Will reading the symptoms get better, easier, more obvious?
  • Is my life ruined? (Cause it sure feels it at the moment)
  • Are there situations where you do get over this?
  • How common/uncommon is this? 

So good to be home. No place like home.

  • massiel's avatar
    massiel
    Member
    10 years ago

    Hi Jane, 

    I had a few days recovering. Last night was our band rehearsals and I sang my heart out!

    But today I'm paying for it. Sore all over. 

    I wonder how many others have done that "over do it" thing because it felt so good in the moment.

    I'm in the waiting room to see Oncologist.

    so many people in waiting room. Just makes me so sad.

    I'm going to find one of those physio people. Thanks for that suggestion.

  • Jane221's avatar
    Jane221
    Member
    10 years ago

    Hi Massiel, I'm glad the blog is helping you to vent all those thoughts and feelings that crowd our minds and to help you process what's happening. Although I have finished treatment, other than the hormone tablets, I find being able to chat here, and tell my story has been a great way to finally acknowledge and work through the emotions that I pushed aside during treatment; really should have done it much earlier! 

    I get lymphodema in my arm, which flared up during radiation. I'm lucky that it's relatively mild and I can generally keep it under control through self massage of my arm and chest (a lymphodema physio in my area showed me how to do this) and the use of a compression arm sleeve when things start getting worse (which I think will happen today) I have to be careful about how much I'm trying to do as this invariably causes things to flare up especially if it's hot. I also had to my rings on that hand cut off so as to relieve the build up of fluid. Not sure where you are, but there are apparently a lot more physios who have been trained in helping people with various forms of lymphodema: you could try searching on the Aust physiotherapy association's website for someone near you. Personally I found having a good physio really invaluable to helping with a number of the side effects of breast cancer and to rebuilding my strength. 

    Best of luck with it all, and I hope you manage a proper getaway sometime soon. Jane xx

  • massiel's avatar
    massiel
    Member
    10 years ago

    Hi Jane,

    Well that's the BEST starting point ever! Thankyou!

    You've already come up with suggestions I could not have thought of. Very grateful.

    I'm finding that the foggy brain requires me to be on top of things as quickly as possible. Gives me time to jot down ideas, questions and look at how to find information.

    This BLOG tool has really helped me feel safe to come here and get my head talk down so that I can think things through later.

    I read you mention you've got the lymphodema under control.  How are you doing that? I've got to get that sorted. I only get it in the breast area, but I have to get better first.

    Thanks again :) cheers, Massiel

  • Jane221's avatar
    Jane221
    Member
    10 years ago

    Hi Massiel, sorry to hear you had to spend time again at Club Medicare - worst resort ever.

    I've not had the pleasure of cellulitis (only some lymphodema which is so far under control, fingers crossed), so I can't say I know how you feel as no doubt having this happen a number of times must be exhausting and frustrating. I'm not sure what enquiries you've made but just have a couple of suggestions that I hope will lead you to finding a solution; you could contact the NSW Women's Breast Centre at the Royal Women's Hospital (ph:02 9382 6610), who run an assessment service for women with any breast symptom. If they can't help directly, they should be able to put you in touch with someone specialising in this area as RHW works closely with universities and research centres. Macquarie University Hospital has an advanced lymphodema assessment clinic which is linked into their research facilities and might also be worth contacting. 

    Clinical services and specialties

    I hope you find the answers and support you need soon. Best wishes, Jane xx