I’ve been storing this subject for a while now. I’ve not written about it because, frankly, it’s embarrassing. And a bit self-absorbed and depressing. It’s strange how coincidences occur to jog you into doing what you’ve put off. So, fuck it, I’m going to write this. Today, I read this blog post on loneliness written by @flendog_ on Twitter. While our circumstances are different, I can definitely relate to her point of being incredibly lonely.
Those of you who follow me on Twitter might have seen this photo.
It’s me sitting at a table with a bottle of water. An innocuous and, let’s face it, dull photo. It was last Friday and I was in a cafe. I cherish those moments I get to do something vaguely ‘normal’. Something I see evidence of other people doing on a regular basis. Having fun. Or, at least, sharing their daily lives with others - be it with family, long-acquainted friends, or people they know only through social media. I see it a lot and I envy it greatly.
What I didn’t tell you was that, shortly after that photo was taken, I made my way home trying desperately to stop myself from crying like a baby. Some bloke walking through a shopping area in floods of tears would’ve been a rare old sight. Probably worthy of some ridicule on some social media. (I might have gone viral. Shit, missed an opportunity, there.) Thing is, that wasn’t the first time that’s happened. And the catalyst for this was an almighty wave of loneliness that hit me hard during the time I’m supposed to have for me. That wave has hit me quite a few times. And each time it leaves me feeling more stupid and hopeless than the last.
Here’s another self-absorbed bit - I don’t have much of a social circle to speak of. I talk to people on Twitter a lot of the time. I’ve said before that without them, I’d be in a bucket. I’ve had several offers of a listening ear from various people on Twitter, and I’m grateful for every single one of them. And your names are noted because I intend to take you up on that offer in the right circumstances. I just would like to actually see people. In the flesh - clothes optional. You know, like a lot of you out there do. I know my circumstances are very unusual and that when you ask me how things are, I feel obliged to be honest with you. And it’s dark. As of yesterday, I’m living with MW *and* my mother - and what 40-something doesn’t want that lifestyle? I’m providing round-the-clock care for MW and seeing my mother through 18 weeks of chemotherapy. These are not light subjects to touch upon. I don’t mind talking about them but this doesn’t mean that my entire oeuvre of conversation is geared around those subjects.
Where my feelings may differ from those of @flendog_’s is that I start to wonder whether people see me for what I do rather than who I am. Am I pigeonholed as just ‘that carer bloke’? Or am I such an arsehole that no-one really enjoys spending time with me? An irrational thought? Perhaps. A self-absorbed one? Most definitely. Right up my own arse. It’s an inescapable feeling, though. And not a pleasant one. It’d be nice to get a hug (or several, I’m not fussy) and be in the photos that people take of smiley people doing sociable stuff. Y’know, Instagrinning.
You might be reading this thinking “what about MW? Doesn’t *she* feel lonely too?”. Yes, she does. All she’s got is me faffing around her all the time, which is fine to a degree. But we’re not supposed to spend 24 hours a day with each other. For 9 years and counting. The bright point is that she has carers coming in who she likes and enjoys spending time with. It’s not perfect but it’s the best we’ve got.
I haven’t got a clever ending for this post. No bringing it back to the beginning and tying it all off nicely with a quote or a line. Because I haven’t got an answer for it. So, if you see a bloke on his own nursing a coffee or a bottle of water, go and say hello. Maybe offer a hankie.
So, what’s been going on since I last wrote. Well, MW has been constrained to complete bed rest again, my Mum has had surgery to remove her breast cancer, and I’m even further overdue the break I’ve been promising myself since some time last year.
MW’s pressure sore has been getting worse. It’s gone from just being a single hole-type wound to a hole with undermining all the way around. The nurse demonstrated undermining by inserting her little finger into the wound and hooking it upwards - it accommodated her entire finger. This diagram gives a better illustration than my description (there’s no tunnelling in MW’s wound).
MW is back on the vac dressing. Unfortunately, the surrounding skin is breaking down. It might be due to continually having dressings applied to it or due to her being in bed all of the time, or a combination of everything. I think it’s safe to say that her skin is extremely delicate and is now at risk of breaking down at any time. This sore has completely dominated the whole of 2014 so far, and shows no sign of abating to any great degree before the end of the year - at least, in my opinion. No nurse is going to say that to me, though, even if I ask.
We’ve had several visits from tissue viability nurses, trying to come up with a solution that will prevent another spell in hospital. I think there was some novelty value in MW’s recent spell there. Having nurses and other patients to talk to was a change from only having me and the regular carers to interact with. But, after a week or so, she was quite desperate to be at home. I think that for her to have to go back into hospital would have a detrimental effect on her spirit. Which would be a sad setback because a lot of people comment on how positive her spirit is, given what she endures.
Meanwhile…Mum’s had surgery to remove the cancer from her breast. It’s been described as primary - or early detection - breast cancer. They can use whatever prefix they want, it’s difficult to see beyond the word ‘cancer’. The procedure was carried out as a day patient and she was discharged to convalesce at our house. I’ve never seen my Mum ill in this way before. She looked very grey and tired after surgery. Of course, that was to be expected but seeing her like that shocked me.
She’s come on quite well after surgery. She saw the oncologist today to discuss the option of chemotherapy. She’s a bit apprehensive about it. Partly because she’s afraid of the side effects, partly because of the prospect of having it done over 18 weeks. She knows that radiotherapy is pretty much a given. Knowing her as I do, one of the most worrying side effects would be hair loss. She’s quite proud of her appearance, which belies her septuagenarian status. For this to go would be quite a blow to her pride and self esteem. Given that physical side effects are common, I think she’d like to have as little emotional/psychological upset as possible. My Dad died from cancer, ten years ago. He chose not to receive either chemo or radiotherapy. I suspect this is playing on Mum’s mind. Fortunately, she appears to be coping quite well with it all. She’s got quite a few friends who have had similar episodes, or who know someone who has, and she can draw on their experience for both advice and comfort.
I’m the one who’s having a hard time getting my head around it all. When I give my time to either MW or my Mum, I feel guilty about neglecting the other. I keep being asked about respite but I genuinely don’t know when I’ll be able to take a break.
I’ve seen your post but couldn’t reply in any other manner than this.
Thank you for taking the time to read my blog, and thank you for your message. It is hard, I won’t lie or try to cover it up. I just try to do my best. I will try to look after myself as well.
Something is rotten in the state of Denmark. And by Denmark, I mean the NHS.
I don’t like to chuck brickbats at the NHS without cause. I am eternally grateful for every second of help they’ve given to me and those close to me. This doesn’t mean that it is beyond criticism where it’s warranted. Let me illustrate what I mean by giving you two examples that I’ve encountered.
Firstly, MW is home now. She was discharged two weeks ago with a small supply of her medication. I assumed that her regular Nomad pack would resume delivery (a Nomad pack is a sealed, one week supply of meds). No-one had told me otherwise. In fact, no-one told me anything regarding the administration of discharge. MW was given no paperwork so I thought everything would be taken care of automatically. By day 7 (Thursday) of being back home, there was no delivery of Nomad pack or any word about delivery starting again. The supply of meds MW was given by the hospital pharmacy wasn’t going to last forever. First thing on the Friday, I spoke to the chemist. After asking me whether there was any change in MW’s medication (for the purposes of the Nomad pack, there isn’t), they told me that they couldn’t release any medication without authorisation first from either the hospital or the GP. Apparently, MW ought to have been given a letter of discharge from the hospital. Well, she wasn’t. So, I rang the hospital ward where MW was admitted. The nursing sister told me that she’d contact the consultant’s team and get them to either fax the chemist or GP with discharge information. But she couldn’t tell me when this might happen. That was a bit wishy-washy for me so I rang the GP surgery, explained the situation, told them the MW was running low on meds, and asked them to ensure that the Nomad pack delivery would start again. “Okay, it’s done now” Great. By now, it was Friday afternoon before a bank holiday. I knew nothing would happen until Tuesday at the earliest. I could just about eke out the remaining meds for a few more days (by missing one or two doses and hoping the pain wouldn’t be too bad).
The following Tuesday, I tried the chemist again, in person, hoping to be given a Nomad pack for a week. I was told the same thing about authorisation. The assistant offered to ring the hospital ward to find out whether any paperwork was forthcoming. She was told that the hospital had a three week backlog in clearing paperwork regarding discharges. I was astounded. This wasn’t good enough. The assistant rang the GP on my behalf and was told that the best thing they could offer was a telephone consultation with a GP. I should ring the surgery between 0845 and 0930 on the Wednesday morning. I was pretty angry by this stage but if the chemist was adamant that they weren’t going to release any medication, I was stuck with it.
Wednesday morning, I duly rang the GP. A fax had now arrived from the hospital giving details of treatment given and medication required (no change in Nomad pack). The GP would fax to the chemist this very morning. Relief!
By 3.30pm today (Thursday), still no Nomad pack. I went to GP, they confirmed fax had gone to chemist and gave me the original prescriptions to take. Back to the chemist. The chemist confirmed they’d received the fax but hadn’t made up the pack yet. After half an hour of hard glaring, and some rushing about on the part of the chemists, I now have a shiny, plastic Nomad pack in my hand.
MW had run out of anti-depressants and I was giving her doses from my prescription, and I was having to give her one less dose of Tramadol every day to ensure she didn’t completely run out of meds. MW has a chronic, incurable condition. This seems a lot of to-ing and fro-ing for something that seems to be very simple to accomplish. It’s more than just a communication breakdown. It’s a system that appears to be broken.
The second example concerns my mother. She’s coming here on Saturday because they found a lump in her latest mammogram. She needs to have a lumpectomy and has elected to have the procedure done at the hospital near me because I can’t get over to where she lives while caring for MW. We are all the family each other has. Her local hospital (FGH) was to send a letter of referral and a copy of all her scans to the hospital here (SRH). Mum has now received an appointment from SRH for the same scans that she underwent at FGH. She rang SRH to clarify and was told that FGH could e-mail her scans over. On informing FGH of this, she was told that the consultant at SRH may want to see scans done by the team at SRH. So, she has the appointment but doesn’t know what to expect when she gets there - a chat or 4 hours of scans. Again, this seems more than just a communication breakdown. It’s a system that doesn’t appear to work properly.
As I wrote, I don’t like kicking the NHS for no apparent reason. And it’s not enough just to be quiet. I know that opposers of state health provision will leap to their favourite conclusion. To hint that there is any whiff of inefficiency in the NHS is to give ammunition to those who clamour for its privatisation. Let me be absolutely clear where I stand. Privatising the NHS is stupidity beyond description. Only the gullible and the greedy reiterate ad-nauseam that the only way to guarantee efficiency is by using private business. It is a ludicrous notion.
But I can’t ignore what’s happened just because the threat of losing the NHS is real. There has to be a way of being able to criticise the systems without jeopardising the service. To be able to urge improvement without giving in to dogma. To borrow another line from Hamlet, “There is nothing either good or bad, but thinking makes it so.” We should concentrate on keeping the good and find ways to make it better. Not allowing the bad to prevail with a view to selling it off and leaving worse behind.
Following on from the last panicked posting, MW is in hospital having tests. We have been reassured that there is no cancer in her bowel. There appears to be a bone infection which is being investigated by means of a bone biopsy. A quick Google search tells me that an extended course of antibiotics is the order of the day.
MW will also undergo a partial colonoscopy to investigate another bowel issue but it’s not tied to cancer.
I can breathe again. Slowly.
This isn’t a hashtag about having casual, uncomplicated sex with other users of social media (if that flicks your switch, I’m not judging you, but you’ll not find what you’re looking for on this post). It’s my description of today. Because today can get fucked. It’s been a giant, festering turd of a day.
It started at 0645 with MW wanting to go to the toilet. So, I dragged my half asleep arse out of bed, lifted her off the bed and onto her wheelchair (with the vac dressing machine attached), took her to the toilet, picked her up, struggled to take her pyjamas and undies down, and sat her on the toilet. Cue alarm from the vac machine saying there’s a leak in the vacuum - meaning the dressing has lifted. Once poo had occurred and finished with, I lifted MW off the seat, took all her weight on one arm while simultaneously smoothing down the dressing and pulling up her undies/pyjamas with the other. The alarm eventually stopped. I got her cleaned up, got *me* cleaned up, and took her back to bed. I managed to get a bit more sleep till the carer arrived.
The nurses called late morning, removed the vac dressing, and replaced it with dressings to be changed daily. They’re not saying that the vac dressing isn’t working, they’re just not saying that it *is* working. There’s still an inordinate amount of wet exudate being secreted by the wound and Tissue Viability (the wound specialists) want to look at it.
These two events haven’t completely ruined the day but they’ve not conspired to start it off on the right foot.
The day went sideways about 1230. The GP rang. MW had bloods taken yesterday and this was the follow-up call now the results are in. MW is anaemic. Seriously anaemic. Not quite serious enough to require an immediate blood transfusion but bad enough to warrant investigation into it rather than just prescribe iron tablets. He wasn’t sure how to proceed but would contact haematology at the hospital, get some advice, and ring back. It wasn’t a lot of information but enough to start alarm bells ringing. MW’s Dad has leukaemia, so we’re quite au-fait with the terms anaemia, blood-count, and so on. Surely lightning couldn’t strike twice, could it?
When the GP rang again, his first questions were about MW’s MS, How long had she had it? Is she wheelchair bound? Etc. He was particularly interested in her bowel movements. He said that the blood test results were such that the anaemia could be caused by a severe infection, which would be tested for again by repeat bloods to be taken today. Or, if not, it would mean MW going into hospital for an endoscopy/colonoscopy to look for signs of other things, including bowel cancer. “Is there any blood in her stool? Are you happy for her to have the tests done?” I’m not kidding, I nearly shit myself. Although I deal with affairs on MW’s behalf, I don’t make decisions for her. Especially decisions pertaining to her medical care. I told the GP that MW can, should, and does make those decisions herself. The GP asked me to tell MW what was going on and ask if they could do the camera tests, if they should become necessary following the repeat blood tests. He’d leave it with me and a nurse would call for the blood.
After the call, I was left not knowing what the hell was going on. This GP had rung twice and left a couple of grenades behind. I walked through to the bedroom where MW was, told her what was said and confirmed that she would have the camera tests done. After some time talking over what was said, I went back to the front room, still worrying over what was going to happen because he’d brought cancer into the equation. As if we’d not had enough to deal with and overcome. I was scared. I won’t gloss over it. I was very, very scared. What would the spectre of cancer mean for MW? How would she cope if it were confirmed? It’s one thing to say “if they should be necessary” but once you mention cancer, it sits there. Joining all the other neon-lit elephants in the room.
I lost it. I started a panic attack, shaking like hell and with a squeezing sensation at the top of my stomach. I didn’t know who to turn to for reassurance. I rang my Mum (as you do when the shit hits the fan) and gibbered at her for a few minutes. I tried the MS specialist nurse - she’s on annual leave. I rang the MS Society helpline. A kind woman there listened to me half in tears, half in panic trying to make sense of the information I’d got today. She advised me to get back in touch with the GP. First, for reassurance. Secondly, to tell him that I’d got an awful lot of responsibility on my shoulders, and this news had sent me into a panic attack. It was the final straw that broke my system.
The carer had come back for her regular Friday afternoon appointment with MW, and very kindly made me a sweet tea. She could see I was struggling and stayed with MW to keep her occupied. MW was relatively calm, although she’d later admit to being confused by the whole affair. I rang the GP’s surgery, still in tears/shaking, and spoke to the GP again. He agreed to see me later in the afternoon. In the meantime, I tried to calm down enough to help the carer to shower MW. I spent over an hour shaking and crying.
The GP had more information at the appointment. He’d conferred with the district nurses and they’d agreed that there was a greater possibility of some interference between the pressure sore and MW’s bowel. This might explain the anaemia, the continued exudate in the sore, and might also explain why MW had needed two batches of antibiotics recently. The GP has spoken to a surgeon at the hospital and explained the situation with MW’s MS and the sore. They’ve agreed that MW will go into hospital and have a CT scan to start with. They’re hoping that a scan will reveal all they need to deal with the cause of the anaemia but can’t rule out further tests, including camera tests. To have MW in hospital would also give me a little bit of a break while her anaemia’s being investigated. GP also said that cancer was less likely because of the infrequency of MW’s bowel movement and the solidity of her stool.
So, the spectre of cancer looms a little less large now. I understand that GPs are duty-bound to be honest in their dealings with patients. I know that our GPs have a large workload and might handle things differently if their workload was less. I also know that I was wound up tighter than a bow-string BEFORE the first phone call informing us of serious levels of anaemia. The potential of cancer investigations in top of that was something I couldn’t deal with. I’m loathe to criticise medical staff without good cause, just to take frustration out on them. That’s not fair. This blog post is too long now for me to go into specifics but I think this could’ve been handled better. For MW. For me.
I try, as far as I can, to hold it together for MW. I not only have to deal with the logistics of medical service provision - sorting appointments, picking up prescriptions, making sure that enough medications/dressings are available at any one time - but I also have to explain to MW what’s going on. I need to comfort her too because she gets scared, gets confused. I can’t do any of that if I’m in pieces. I’m not in the same state as I was this afternoon, nor do I want to be. Because today’s been bad enough. Fuck it.
Finally, the vac dressing has been applied, or Negative Pressure Wound Therapy, to give it its proper title. The picture above shows the pump which applies the vacuum via a tube attached to the wound. The idea is to draw out all of the dead tissue that’s been hanging around the sore for a long time. It’ll also draw the clean, healthy tissue to the surface, effectively closing the hole around the dressing over time. At least, that’s how I understand the information I’ve seen about it.
MW is still confined to bed rest. That’s six weeks so far and several weeks to go before she can start to put prolonged pressure on the area. The downside of all the bed rest is the increased risk of other pressure sores. You try and get rid of one problem and others creep up to test us. There are new sores/skin issues on the inside of both knees, her left foot (which occurred prior to bed rest), a blister on her upper buttock where the vac dressing tube has irritated the skin, and her right ear where she has to lie on that side to alleviate the pressure from the main sore. MW’s got that many dressings in various places she looks like a patchwork quilt.
This whole episode is taking its toll on MW. She’s considerably quieter recently. I don’t know if this is as a result of having to spend so long in bed on her own or not. I do my best to keep her spirits up. As do the carers who help us every day. (The carers who help us now….I can’t think of an adequate superlative to describe them. They’ve been exceptional.) MW’s also tired all of the time. I know fatigue is a well-known symptom of MS, and that MW has more than her fair share of it. But this seems to have increased even more recently. I don’t know if it’s a side effect of the new dressing, of the pressure sore (any skin issue can exacerbate MS symptoms. I know, it baffles me too), or if it’s a result of having to stay in bed for such a large part of each day. Maybe sleep begets sleep, if that makes any kind of sense. I’ve got to be honest and say that things make less and less sense to me.
I’m also beginning to realise that MW can’t look after herself in the same way as she was once able to do. She’s always been insistent on washing as much of herself as she could reach (which wasn’t much but independence is important). I was happy to trust that she’d say when even that independence was no longer possible. I guess she’s thought that she was still able to clean herself but I’ve discovered that’s not the case. From a practical point of view, it’s not much of an issue. It just means that I, and the carers, will have a little more to do on a morning. From an independence perspective, it’s a considerable loss.
MW can’t manage her bowel as she once could. She’s going and doesn’t know she’s going (without getting too graphic). It’s very solid so it’s easy to clean up but hard to keep away from the pressure sore dressing. I suspect a call to the MS specialist nurse is in order. It’s a balancing act between ensuring MW’s bowel empties and not having it go everywhere.
Me? I’m tired. Actually, that’s an understatement. I’m exhausted. I could do with about a week’s sleep but I’m not going to get it anytime soon. When this sore’s improved, I’ll have to have a break. Maybe then I can start to think of the long term effects of these latest deteriorations in MW’s condition and independence. Anyhow, that’s the situation here at the minute.
Yesterday, Valentine’s Day, MW spent the entire day in bed. Alone. That’s because she’s under enforced bed rest. On orders of a Tissue Viability Nurse - a specialist in wound management - or TVN, for short.
MW’s pressure sore is getting on for three months old now and shows no sign of improving. In fact, it’s worsening. It’s being dressed daily by district nurses and has been assessed twice by the TVN. The next step is to have it vacuum-dressed. Which, I’m told, involves a suction machine taking out dead tissue. I know it’s to help but it’s a grisly thought at best
Up until about a month ago, I’ve been photographing the sore’s development since it began so that MW can see what’s happening. I mean, it is her body after all. But it’s got to the point now where I can’t even bear to look when the nurses are dressing it. It’s about 50mm deep at its deepest part - or 2” for those of us brought up on a mixture of imperial and metric measurements. When a nurse says it’s nasty, that’s usually a fairly good sign that it’s not a pretty sight. There’s some infection in there too so MW’s taking her second course of antibiotics in a month. No more pictures. I - and we - will just have to take the nurses’ opinion for it.
The sore also affects MW’s MS symptoms. She gets even more tired than usual (if that were possible) and she feels the cold more keenly too. MW is supposed to spend no more than an hour in a chair at a time. Feeding MW her meals takes up pretty much all of that hour.
I’m aware that the dynamic of this blog has changed a little in the last few posts. This only reflects the reality of things over recent months. This is my only real place to moan. I don’t want to do it on Twitter as it gets boring to read. I know that - it gets boring to think without getting it out of me. And woe betide you if you “do Twitter wrong”.
Twitter was full of Valentine’s Day chatter yesterday - some bitter, some sweet. We don’t really go for Valentine’s Day anyway but yesterday really couldn’t have have felt more like just a Friday.
An update as to how things are going in lieu of a post on a particular subject.
So, we’re about two months into dealing with MW’s pressure sore. It’s pretty big - about the area of a matchbox at its widest and getting on for about an inch at its deepest. There was about 4-5 weeks of the most awful smell as the tissue inside the wound area was dying or dead. Luckily, that tissue is coming away and the healthy tissue is coming through - thanks to daily nurse visits to pack and dress the wound.
MW has been referred to a dietician by the nurses, who are concerned by her diet. This is nothing new. MW’s been to various dieticians since diagnosis because her appetite is so small. I’m looking forward to her being weighed again, just for my own peace of mind. I’m having to feed her pretty much every meal where cutlery is used now. I’ll give her the food and spoon (it’s always a spoon) to start with. Then I’ll hear the tell-tale sound of the spoon knocking repeatedly against the dish which tells me that her tremor is preventing her from eating. So, I’ll take over.
I know it upsets her. Even to the point where she’ll try and tell me she’s full so she retains a little dignity. I don’t take any notice. I know when she’s had enough and when she’s still hungry.
I can get away with telling her that she needs the sustenance to ensure more healthy tissue grows.
In the moments in between, I’m keeping myself busy studying language and translation. Trying to keep my mind stimulated.
Anyhow, that’s the long and short of it for now. Or, in terms of the sore, the wide and deep of it.