Memory full

This worrying business is funny. But perhaps I should go back, not quite to the beginning but to the start of this chapter. As many of you know, following surgery to remove a rather pesky tumour, my wound does not behave well. Firstly, it picks up a variety of infections, most notably MRSA. There is a kerfuffle at the GP’s practice. I have a phone call from the practice nurse who has taken a swab from me to tell me there is a prescription waiting for me. I duly go along and collect it (or, more likely, Mr Mason collects it) and I begin taking some horrible antibiotics. The next morning, the GP himself phones to check I have collected the medicine and am taking it. This is pretty much unheard of. When I speak to the practice nurse sometime later and ask how many cases of community MRSA she sees, she says she has never seen a case of it in the practice before. Most cases are acquired and dealt with in hospital but mine has been acquired on a hospital visit and then carefully taken home and nurtured. As soon as it is only just healed, it is blasted with 25 sessions of radiotherapy from outside and 3 more sessions of the noxious Docetaxel from inside. It’s a combination that makes my wound and I break down and weep. So, the wound continues to be a bit horrible, never really healing, suffering from the occasional staph infection but never getting to the point where the skin is closed over it. It’s a pain under the arm. The wound has been here so long I am tempted to enter it on the annual voters’ registration form.

A couple of weeks ago I decide I Have Had Enough and speak to my breast care nurse, Vanessa. She is lovely and looks at it with concern on her face. She doesn’t know why it is not healing. I do not know why it is not healing. We are officially puzzled but I Have Had Enough. This means we get to call in the big guns and an appointment with the consultant surgeon is rustled up. During my time in Bangkok with Ms Mason I use Bactriban on it which is The Thing for people who have had motorbike accidents, apparently. Although I have not had a motorbike accident, we are optimistic it will clear the wound up. Alas, it does not. Neither does a week of drum banging and smudging at the cancer centre in Bristol. The wound is determined not to go anywhere and I am equally determined to get rid of it. Although I joke about it, the wound weeps and seeps onto clothing which can be embarrassing and it positively ruins the look of clean, crisp white sheeting. No wonder I am not a Domestic Goddess.

So, the day of the appointment comes and Mr Mason meets me at the hospital so we can see the consultant together. The lymphoedema nurse also thinks I have an infection in my arm and will not give me the wonderful Manual Lymphatic Drainage whic his so soothing in case she sends bacteria scooting all over my body. Mrs Hogben wants to look at everything. She squints at the wound and prods around it. She looks at my arm and touches it, pronouncing it a bit hot so she decides she will prescribe antibiotics. She also swabs it in case it is a return of MRSA. I ask if she will cut the scar out and re-stitch. She thinks she can do this but first must be sure I am free of anything untoward. In the case of Inflammatory breast cancer, it is thought better to wait a while before having any kind of reconstruction in case it spreads cancer cells throughout the body. As I am now 2 years post diagnosis, we can start to approach the subject but only sideways on as I am not sure it is for me. She cannot do so much as wave her scalpel at me until I am free  of suspected infection and also cancer. I have been having pains in my arm and shoulder, especially at night, and the lymphoedema nurse says it is not lymphoedema which is causing it. She has a curious look on her face as she says this. I mention the pains to Mrs Hogben and she immediately orders a CT scan and bone scan. And that is pretty much that. Come back in a week if it hasn’t cleared up, collect prescription on the way out and do not pass go. You know the kind of thing.

In the intervening week, I duly take the antibiotics and check my wound. It is still sticky and does not seem to be getting any better. The pain in my arm and shoulder wake me at night and I have to take pain killers. It is not a matter of getting in a comfortable position, it is just a matter of switching the pain off. So here is where we came in. Imagine if your computer was running a background programme that used quite a bit of memory. You’re not thinking about the programme running but you are aware your system is running slowly. That’s me. My background programme is worry. Worry about the cancer coming back or already being back. I am not aware of it but I know my daytime life is running slow. I am not functioning at full capacity. I sit about in my pyjamas and struggle to think about things or remember words. My memory is really running slowly. So many words are disappearing with this damned programme running in the background. I can’t remember the words for ‘limescale’, ‘washer’ or other plumbing-related terms. We are coming round to the next appointment and we’ll make some decisions, although most will be put on hold until the pesky tests are out of the way. Meanwhile I am reminded of my mortality when women in our Inflammatory breast cancer group on Facebook die, going downhill so quickly. One week, one was choosing a wedding dress, the next she was in a hospice and the Doctor said “If you want to get married, do it now”. There often seems no time to adjust to the scale and scope of the illness.

So I suppose this is what is running in the background right now. A programme on a loop that’s saying “What if?” I don’t think I’m being dramatic, I think that’s just how it is. I am not aware consciously of worrying but I reckon it accounts for the pyjama days and inability to remember words. Or at least, that’s my excuse.

6 thoughts on “Memory full

  1. I don’t know how I missed so many blogs! (I was wondering, if you’d been having a break!)

    I so understand what you mean, I think we all have that programme running in the background. Really thinking of you – am now catching up on the rest of the blogs. xxxx

  2. I truely hope all is well Shelley, keeping my fingers, toes in fact everything is crossed for you when you get your results. Wishing you all the best. XXXX

  3. Hi Shelley, I am so sorry to hear that the worry loop is back. I think that perhaps, over time and after treatment the worry loop subsides almost to the point of you not being conscious of it – but it is still there, waiting. But the slightest provocation( and you have been experiencing much more than this recently) and it cranks itself up to deafening/mind numbing distraction again. Maybe once you have had a cancer diagnosis this “what if” worry loop is always present in our lives. I hope that the CT scan is clear.
    I finally went to see the GP about my loss of sense of smell and she has found a polyp up my nose. Have I considered that this might be something more sinister – yes I have. Have I looked up CRUK notes on nasal cancers – yes I have. Do I believe that my GP is 100% correct in the diagnosis – no not really, as I have had other things misdiagnosed in the past. The worry that its back never seems to be very far away and its an ongoing struggle to keep the worry at bay.

    • Yes, the first thing I would do would be to look it up. My own GP told me categorically I did not have cancer when I knew I did. It’s not her fault. She had never seen IBC before but I know what you mean about not trusting. I hope you regain your sense of smell soon and find a space to halt the worrying for a while 🙂

  4. Hi Ginny, I can relate to the background program running. At night is when it comes forward and this loop keeps running in my head. Having just been radiated or finished with rads, I can imagine that this will take quite a long time to heal. Radiation does strange things to tissue and healing takes forever. Its been nearly 8 yrs since rads for me and I still am pink everywhere the beams touched me. If you are not allergic to sulfa, can they try silvadene cream? Its a healing cream they put on burns which are notoriously hard to heal. It looks like creamy whip and is soothing as it is healing. It only took 2 weeks for it to clear up my chest which was open because of the rads. Hugs what a maddening trip for you. Ruth

    • Hi Ruth,

      I think they are just considering cutting the bad bit out now, as long as there is no MRSA or cancer present. It’s been 2 years in August since the original surgery so it’s time it was healed up. If they don’t go down the surgery route, I’ll ask about the cream. I don’t know if we have it in the UK. It hadn’t occurred to me before about the background loop running but I’ve been on my laptop all day today and it suddenly clicked. Yes, that’s why I’ve been less together than usual. And hugs right back atcha! Shelley

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