Biopsy

I had a pretty decent night’s sleep Sunday night, probably down to the fact that I took 30mg of Temazipam, but hey, I needed some sleep!  The last few nights have been a bit of a nightmare as I’ve been worrying about the biopsy so sleep was priority on Sunday night.

 

Woke early at 5.30 after sleeping through from 11 pm.  I was a bit groggy on waking but I’ve but that down to the sleeping tablets.  I got up, showered and dressed then we walked the dog round the block before double checking my rucksack which I took with me.  The letter stated that I should be at the hospital for 8.30, that I would then have the biopsy (no time given) then I would be in observation for 4-6 hours afterward.  I’d packed my dressing gown, a pair of shorts, my laptop, book, medical kit (yes, even to hospital!) and a few crystals.

 

We got to the hospital at roughly 8.15 and walked through the hospital to the radiology department.  We were checked in by the receptionist and asked to wait on the ward until the nurse came round to fill out some paperwork and do some health checks prior to the biopsy.  Within 10 minutes the nurse arrived and started checking me over.  We had a right giggle with the nurse who was lovely, discussing medications, side effects and current symptoms, she put me at rest when she mentioned that she’d dealt with loads of positive people since being in the department.  After checking my BP the consultant came over and gave me a brief outline of the procedure then I was on my way into the theatre.

 

On entering the theatre I was prompted to get onto the bed (very thin) and get comfortable.  The consultant then came in and asked me a set of questions regarding my name, address and DOB.  He then went on to ‘gel up’ his portable Ultra-Sound machine and popped it into my armpit…I almost screamed it was that ticklish.  I had pre-warned them all that I was really sensitive, especially in the armpit.  Once I started laughing that was it, the nurse joined in and it went on for a good two minutes.  Once I’d calmed down, the consultant then went on to scan my neck lymph node and asked which one I would prefer him to take a sample off – No brainer, my neck please! 

 

After we had agreed on the neck lymph I felt so relieved, being ticklish, I’d be really worried about me squirming about as the needle went in to my armpit so I was over the moon when he said he would take the sample from my neck.  He then disinfected my neck, took another scan to make sure there were no arteries present that could get in the way, then pumped me up with Local Anaesthetic. 

 

I did not see the needle he used as I’m a bit wimpy when it comes to those things, so decided to look away.  He tested the needle which gave off a very loud ‘click’ and advised me that was the click I would hear when the sample had been taken.  He then asked if I was ready, which I replied that I was and we started the biopsy.  I was pre-warned again about the click, once the needle was in my neck, and said click arrived.  I had tinnitus in my ear for about 10 seconds afterward.  He popped the sample out with another click and took a look.  Just my luck, the sample had fallen to bits!  We lined up for round two, luckily there was no round three 🙂

 

Tinnitus for another 10 seconds whilst he checked the sample, then he said “all done” and I was like really?  That fast?  Apparently, if I’d have had a biopsy on my liver, it would have taken quite a while longer so let’s hope I don’t have to.  I sat up for a few seconds whilst the nurse fastened my gown back up then was off back to the ward where Adam was waiting.  Had a word with the consultant for about 5 minutes discussing possible bleeds and what to do, was given 2 fresh dressing by the nurse and then was sent on my way.

 

Looks like I’d filled my bag for nothing as I was literally in the theatre for 15 minutes, the paperwork took less than 5 minutes.  I got changed whilst the nurse went to check on a few things for me (pain clinic) then I was cut free of my hospital tag and advised I could leave.  I was quite shocked it had gone as fast, as the letter did state that I would have to spend 4-6 hours in observation.  The nurse explained that was more for people who have a general anaesthetic and that the consultant was happy for me to leave. 

 

We made our way back into Wednesfield to get the bus home which was probably the longest wait of the day, we picked up a pork and stuffing sandwich each whilst we were waiting to have for dinner which we took home with us.  The bus came on time and we were home before we knew it.  Adam took the rest of the day off as the consultant advised that I would need someone with me for 24 hours just in case anything happened, nothing did though!

 

Once the local anaesthetic had worn off I started to feel the pain in my neck.  I had some pain killers and some water but it didn’t take away the pain.  I got pretty tired so took a nap for a few hours and when I woke I could not get warm.  Sat with a coffee cupped in my hands trying to warm up but that did not seem to work either.  After about an hour, during which I’d been dithering that much that I managed to bite my tongue twice, I was back to normal temperature and we popped to Morrison’s to get some dinner.

 

At around 6 pm I had all the texts and phone calls from family to make sure I was alright, and Kayla, our friend had popped round to see me.  I was a big groggy for most of the evening as I was in quite a bit of pain which has rolled over to today.  Had a GP appointment this morning, the last one with my current doctor as her contract is up so she will be moving on.  We went through loads of things, made sure all my medical notes were up to date and made an appointment with my new GP.  Although she had been a bit crap before I was diagnosed HIV+, she had but quite a lot of effort in with me since, and I’m a bit gutted that I’ve been passed on to another GP.  I know I planned on changing anyway but with everything going on at the moment, I was kind of putting that off.

 

We said our goodbyes then I was on my way to get some shopping in from Morrison’s for lunch and dinner and since then I’ve been trying to relax on the settee.  I tried to have a nap seen as I did not sleep a wink last night but could not drop off.  I got really warm and sweaty and have had a wet cloth on my head for the past hour but it’s not cooling me down.  Seen as I cannot rest I decided to blog instead, something I’ve not been doing very regularly of late!

 

I guess I haven’t been blogging as I’ve been feeling quite down these past few weeks.  Worrying about the biopsy hasn’t helped, just like the chest infection didn’t.  Been feeling quite fed up with all the aches and pains, the night sweats and not sleeping and guess this has an adverse effect on my mood.  Hopefully soon, I’ll get a break from all this as the HAART medication should kick in and reduce my symptoms. 

 

I have 8 days to wait for my results from the biopsy, along with the results of my first bloods taken on medication last Wednesday.  I’m trying not to think too much about the biopsy but it’s easier said than done.  Started a new book which is really good, by Peter F Hamilton who is a great sci-fi writer so hopefully that will help take my mind off things, failing that, I’ll have to get stuck into another TV series on Netflix or something like that.

 

Been signed off for another two weeks from Monday, had a meeting with work last week and they have been great.  They have registered me as disabled so when I return to work I’ll have things set up to help me better in my role.  We have also decided that I will have a phased return to work, using up my flexi time and some holiday time to make up my weeks until I am back up to full time work.

 

Don’t feel quite ready enough to go back just yet, my mood is all over the place still, and with the insomnia, my concentration levels are quite low too.  My memory has been playing me up, I find myself getting up to do things then can’t remember what I am supposed to be doing.  Probably the result of the lack of sleep and the constant tiredness.  I keep getting told that it will all level out soon and that I will be sleeping again and back to a healthy state, guess I just get frustrated that I’m not seeing any results yet, and if anything, things have gotten worse.

 

Fingers are crossed for my results next week, hopefully the days will go fast as I hate not knowing what’s going on.  Until then I best get my head into my book to try and get my mind off these results.

 

DathomirDan.

 

Thanks for reading.

Seeing an old friend.

Friday was my first day of annual leave, Adam has booked the same time off too so we get a whole 10 days together. I’m dead set on not letting my symptoms and side effects ruin this week, but Friday morning it went down-hill quite quickly. We went to the market in Bilston to get some bits and bobs and all was going well. One of the ladies that we run community events with had ‘Yarn Bombed’ the town with her friends, it was so colourful and extravagant that I was really blown away by it. They’d made loads of things like bunting, flowers, and a whole outfit for the town statue! We took loads of pics and had a catch up then carried on. We dropped off 4 bags of books at the charity shop then did a bit of shopping. There was an extra market on, for ‘Bilston in Bloom’ – hence the yarn bombing as there was no budget for flowers – damn cutbacks! There was even a crystal stall which I was drawn to and came away £10 lighter with 7 new crystals for my collection.

We went round the shops then to the standard market that’s on 4 days a week. At this point I started to feel off. I went very light headed, felt sick, and the pain in my head was excruciating. It was like someone was scraping metal over my brain. I rushed out of the market, nearly falling over, started crying, and tried to take deep breaths whilst Adam tried to calm me down. We went straight home at this point. Great, first day off and I’d spoilt the day already. I spent the rest of the day on the settee and in bed, managed a few hours’ sleep, and did quite a bit of crying. The evening went quite fast, just watched telly then went to bed early.

Saturday morning I was up around 7, feeling a lot better. I was very excited as it was the day I got to see my old best friend. We took another 4 bags of books to the charity shop (still about 300 books to go – clear out) then came back home. We popped to Morrison’s to get some strawberries and cream, then weeded and strimmed the front garden. At 1.30 PM I went up to the tram stop to meet Lewis, got quite anxious on the way up but took some deep breaths and levelled myself out. When I saw him get of the tram, a huge smile appeared on my face, it was so nice to see him. We had a hug then walked down to mine. We caught up on a few things in the living room with Adam then moved outside to the garden for strawberries and cream. I had such a fantastic afternoon finding out how he was, what he was doing for work now, and how his partner Craig is getting on with his new job. It felt like we hadn’t stopped talking, that we just picked up from where we left off two years ago.

After a couple of hours sat in the sun with Lewis I started to get a bit tired, happens a lot lately! We wrapped up the chat and he left for the tram. Guess speaking to him had wiped me out emotionally, I was so happy to have him here, although my body was protesting the whole time. We plan to see each other again soon, not too sure when as he has moved to Sussex now, although he is keeping his apartment in Birmingham and renting it out to friends, keeping a foot hold in the busy city.

I went to bed as soon as he left and slept for about two hours, Adam woke me up after he had taken the dog for a walk then we went the shop to grab some bits, mainly alcohol that he was taking with him to his dinner party last night. He showered and changed, looked extremely handsome in his suit jacket, jeans, shirt and brown shoes, good enough to eat! He was off by 7 PM so I chilled all evening on the settee, with free reign of the TV!!!

I watched Knight and Day which stars Cameron Dias and Tom Cruise which was good, then was in bed for 11 as I was knackered. Was nice sitting on the settee with the dog, groomed him and gave him some love whilst we watched the film, don’t think Sammy was really watching it though, he was more interested in licking his bits!

We had planned to go to the Wolverhampton and Black Country City Show today, but fear it could be a wash-out due to all the rain, so looks like we will have to find something else to occupy us for the day. Just started the latest Scott Mariani novel, Ben Hope and his ex SAS antics, always a good read so might make some headway with that today.

We’ve been to the Sunday market with the dog and now back home in the dry. Kayla is due round about 12.30 with a week’s worth of home-made dog treats for Sammy and a catch-up with coffee, might nip out and get some cakes as a little treat.

All in all, feeling a bit sore physically (nothing new there) and a bit better mentally (wonder how long it will last). Bit worried about Glastonbury on Saturday, if I’m too ill then we can’t go, which I’d be gutted about, so best rest up lots this week.

Fingers crossed hey!

DathomirDan.

Thanks for reading.

Resistance!

Resistance!

Went to the HIV clinic today to finally get my resistance tests and have my second Hepatitis B vaccination jab. Adam attended the clinic with me as he usually does, I’m sure he does it to get out of work now [smile]. We were at the clinic at 9.15 but had to wait half an hour to be seen, not that I minded, I was playing the math puzzle 2084 on my phone, if you haven’t tried it and like numbers, give it a shot, the aim is to add up the boxes to make the biggest one you can without running out of space.

We were called through at about 9.45 by Dr McCathie and taken into a private room. We said a quick hello and then went straight into how I’d been feeling and coping. I’ve learnt to be deadly honest with doctors so I got my book out and ran through roughly 20 symptoms/side effects that I believe have got worse over the two weeks since I last saw her. We explained most of them away on medication, a few that would be looked into and one that I have to apply cream to 4 times minimum a day (can you guess which one it is? Lol).

I showed her my biggest concern of the day, the red rash that has ravished my milk-bottle white body. It is everywhere, except my slightly tanned face and neck. This is a bonus as I would not have wanted to leave the house if it was on my face. I explained that seeing this physical sign had affected my mood, that has been dragging along the floor for two weeks anyway, but this was also put down to the medication. We are going to keep an eye on it anyway just to be sure.

The scariest part of the HIV clinic session was discussing my raised lymph nodes. The ones in my neck have gotten bigger, and the one under my left armpit is huge, it causes some discomfort it is that big. We have decided to do a biopsy on my neck and armpit glands, not the needle one as that would mush up the cell structure as it is sucked from the gland, so looks like the scalpels will be coming out to see me. Not sure when the biopsy will be but sooner rather than later I hope.

I also discussed a ‘sore subject’ which was a little embarrassing. My testicles have been very achy over the past few months and it’s got to the point where I constantly have a dull ache. I believe it’s due to inactivity and Dr McCathie agreed. She checked me over anyway, gave them a squeeze and all is fine. I flinched a few times but that was due to her cold hands!

I then had my Hepatitis B jab and we were on our way home. No bloods were taken today, which was a surprise, but I’ve only been on medication so we are leaving it for a fortnight and take them once I’ve been on the medication a month for a clearer set of counts.

She thinks I’m doing well, that I’m coping well and seem a lot healthier than I had when I first met her. I agree that I have improved physically since 4th June, but mentally I am a wreck. You only need to spend 30 minutes around me to realise that. I felt good that she had said I looked better as I’ve been trying really hard to eat loads, stretch out my depleted muscles and eat healthy. The thing that is letting me down at the moment is my mind which scares me. I have counselling starting tomorrow and an appointment with a psychiatrist on 1st September to address these issues, but September seems so very far away.

Saw the GP yesterday and we increased the antidepressants again, 150 mg of Sertraline a day now, but it will take a month for the effects, plus my combination of Truvada, Darunavir and Ritonavir reduce the effects of the Sertraline by 49%. May take some time to get me on the right dosage.

I’m hanging on in there though, Adam and my family have been brilliant as per usual, don’t know where I’d be without them all. My new family on the forums are looking after me too, and I feel so humbled to have met some of them, and see that they are doing so well.

My light still shines but the wind is blowing strong, my family and friends (old and new) are acting as my wind-breakers. Thank you all.

Blessed Be,

DathomirDan.

Thanks for reading.

Family Monday

After an up and down weekend, I spent the daytime yesterday with my mom. She came over to mine at about 10 AM to pick me up, then we drove from Bilston to Erdington. We popped round the shops as she is off to her house in Italy in a few days and wanted to grab some bits she would be unable to get over there. After a little shop we popped to my niece’s nursery to collect her and went to the park.

It was lovely and sunny, and the playground was empty so she had free reign to play on everything. I had fun pushing her on the swings, watching her wiz down the slide, played with her on the see-saw and even managed to wedge myself into the ‘wobbly chair’ which was fun. After about 45 minutes we had to drop her at her other nanny’s as a relative who lives in Cyprus had come over and wanted to see her.

Once we had dropped her off we met up with my younger brother James in the local sizzler to have some dinner. I had the smothered chicken which was really nice. My little brother was having a bad day, and his low mood was evident. Mom and I tried to cheer him up, more me as mom just moaned a bit about how his fiancé treats her…time and a place mother! James brought us all a pudding then we parted ways. He went home to relax and mom and I went back to her house.

We relaxed and chatted for an hour, her showing me her hording collection which I honestly think is getting out of hand! She’s sorted out some of it, but every wardrobe is stuffed to overflowing with clothes, my old bedroom is full to the brim of kid’s toys for my niece’s, and the only room without stuff shoved everywhere was the living room! Told her she may have a slight problem and that if she likes, I’d help her get rid of a few things. She showed me mounds of things that she is taking out to Italy for the house, let’s hope she leaves it there and doesn’t end up bringing more stuff back!

Tried to have a bath which turned out to be a bad idea. I managed about 20 minutes in the water then had to get out due to over-heating. The plan was to relax my muscles as they have been giving me trouble, but I ended up getting out even more tense than I had been. Stood in the garden for about half an hour, red all over, sweating, in just my shorts. Had my bath towel to mop up my perspiration and lots of water to drink. Was pretty annoyed that I had failed to have a bath, not had one in about 6 years as our flat only has a shower. Gutted.

We chatted some more up until 5.45 then she dropped me round to my brother’s house. We ate dinner whilst the kid’s played then James and I went to the pub to have a catch up.

We really opened up to each other about how we were feeling and how life was for us at the moment. He opened up about his Bipolar, and how he was finding it hard to talk about, and I opened up more about how I am dealing with being HIV+. It was such an emotional conversation that I was close to tears a few times, managed to keep them all in though. I feel so valued as a brother, the fact that he can confide in me, and that I can advise him to the best of my knowledge on how we should both get through this low time. I explained again how writing had helped me deal with my diagnosis, and that talking about it really does help. He understands that but finds it difficult to communicate his feelings to his partner, but we are working on a way to help him deal with this. I feel so proud of him, he’s come so far in life, has his own house, a well-paid job and two lovely children. It’s such a shame that his Bipolar is making it hard for him to cope, but I assured him that I will be there for him no matter what happens. We had such a laugh talking about our childhood and teenage years, how close we were and that we want to get back to that. I told him so much about my private life, something’s I would not dream of telling my mother or older brother, and felt like we really connected like we used too.

We’ve both agreed to meet up more often, spend more time with each other, and support each other as much as we can. I feel so happy that I’m getting back on track with him, even under the circumstances. The laughs we had, especially on the car journey back to mine were really great, some things I’d forgotten all about, and others I will always remember!

He dropped me home and came in to see Adam and Sammy with his new haircut. I made him smell the dog as he smells lush, I’m getting everyone to smell him at the moment lol. He left mine with a smile on his face, feeling good. I hope it has carried over to today.

I feel a bit drained today as yesterday was quite a long day. My muscles are still protesting, I still have my symptoms and side effects but I feel brighter in myself. Spending time with my family really helps me, and I plan to do more of it. I’m meeting my older brother on Monday for a catch up with him at our local in Bilston, not had a proper one-to-one with him in ages.

Went to the GP’s this morning with Adam for my weekly check-up. She was really nice and was pleased to meet Adam. I’ve been given an increase in my pain killers, new pile cream (smile) and more sleeping tablets. Another £24.15 lighter but I need the medication.

That was my Monday, and what a ride it was. Drained but happy, body is protesting but my mind is fighting strong.

Blessed Be,

DathomirDan.

Thanks for reading.

My Weekend

Had a very up and down weekend to say the least. Great night on Friday at the Beyond Positive Pub Crawl, even though I saw some people I’d rather have avoided. The warm welcome from the group was fantastic, the support unparalleled, the laughs just kept rolling and rolling.

Saturday morning I felt quite drained, suppose it was a lot to take in from the night before and process. Felt really good though when I got up, although my muscles were in protest! We walked the dog, went up town then got ready to go out with our friend.

We got picked up and took the dog to get pampered at a doggy salon – spoilt – he was a bit nervous of the car, as the last time he was in one, he was leaving one home and going to another. We managed to get him in though and I held onto him in the back, fussing him and just generally trying to calm him down. We dropped him off at the salon then went to get some lunch.

We went to ‘The World Famous Pie factory’ which I’d never been too before. What a treat. I had a massive mixed grill that came to the table on a shovel, yes, shovel (bloody fantastic). It was immensely tasty and very filling. Adam had the faggot pie and so did Kayla, they both seemed to enjoy it. I even got the chance to stand behind the ‘Desperate Dan’ board and put my face through the hole to have a picture taken, pics to follow shortly as they are on Adams phone.

After the filling lunch we went to do a bit of shopping, then back to Kayla’s for a coffee and to meet her doggies. They are lovely little pups, the little girl, Pandora, was right mental, running and jumping and licking everything Lol. After the coffee we went to get Sammy, it was our first time taking him to a salon so I was really looking forward to seeing the outcome.

Fantastic, he looked, felt and smelt lovely, all his down (fluffy hair) had been removed, trimmed to perfection and they even attached a little bow onto his collar! They said he had been very well behaved which is unusual for Sammy, bet they spoilt him with fuss!

We came home after that to relax. My muscles really needed it but I felt great mentally. We watched the rest of season two Orange is the new black which was epic, really good ending and very surprising. Had an early night as my body just would not co-operate with my mind and smothered my pillow in Lavender Oil which I’d picked up earlier.

Sunday was a bit of a low day. The muscle pains were a lot worse, the runs had started again and I generally felt so exhausted that I had a cry. I was sat on the settee with my feet up, trying to relax. We’d finished an episode of a series we are watching and Adam went to the loo. When he came back in the episode had started over again so I told him he had, to which he jokily said ‘well, you weren’t going to get up and change it’. The flood gates opened. I balled my eyes out in frustration, the pain all over, the lack of sleep, the nausea, the high temperature – the list goes on. What made it worse is that I knew he was joking, but could not keep my emotions in check. I felt so bad, so down, almost defeated. He gave me a love and told me it would be alright, which kind of made me worse. Felt like a right dick after having such a great weekend and now I’d gone and spoilt it. Seems like I’m not satisfied at the moment with no drama, at least, that’s how it must look.

Spent the rest of the evening with a low mood, going in on myself lots and just feeling crappy. Made dinner and chatted a bit which picked me up a little, but still felt down. Guess I’m just frustrated with feeling ill all the time, it’s been going on since about November last year which is quite a long time and I just want it all to stop. I know I have to be patient with the medication but I just feel so shitty at times that it all just feels like it’s too much to deal with and I end up a snivelling mess.

Meh!

Feeling more positive today, off to mums to spend the day with her, and to soak my muscles in her bath, not got a bath here, just a shower, we’re looking into changing that but it will cost a bit and we just can’t afford that at the moment.

Seeing my brother this evening for a catch up, just the two of us, which will be nice, been looking forward to it since we sorted it out last Monday.

Feel better emotionally I suppose, very grateful for having such a good weekend, even though it went to shit on Sunday.

Hopeful as always, fed up of illness, feeling like patience is a virtue that I seem not to possess.

DathomirDan

Thanks for reading.

Beyond Positive Pub Crawl

Well, what can I say? What a night!

Last night I attended the Beyond Positive Pub Crawl in Birmingham, my first outing on the scene after diagnosis a month ago. I was nervous and highly anxious all day, and it took me forever to decide what I was going to wear #GayBoyProblems. So glad that Adam came with me, don’t think I’d have been as chatty if he wasn’t there, my confidence is on a very low ebb at the moment, and I’m finding it hard to interact with people.

We arrived at the first bar at 7.30 PM and I was shocked to see so many people there, and the red clothing – fair play guys. I was quite nervous but Adam was there so I felt I could do it. We got introduced to most of the group, got a drink, and the chatting started. We felt so welcomed by everyone and I felt happy I did not have to tell these people that I’m positive, as they already knew. After the first drink I felt more relaxed, but slightly bloated – damn you lager! After that drink we moved to the second bar just over the road, and that’s where I had a little shock.

We got into bar 2 and ordered a drink, I went with Pepsi as the beer had made my stomach feel off. We were chatting away then Adam and I decided to go out back to have a cigarette. Bad idea. Outside were two old friends that I had not seen in about 5 years, we said hello and caught up a bit, then they asked why I was out in Birmingham…

I lied to them and said we just fancied a night out, they did not believe me though. When we went back in I felt like crying and going home, I’d not planned on seeing people I knew well. Adam and the boys reassured me that it would be OK but I just felt like shit. I was so paranoid that they knew why I was here, with a bunch of people wearing red clothes. They came inside and saw me from across the room, they gave me funny looks, chatted to each other, laughed, then went back outside. Fucking hell.

I could have broke down then and there, but managed to keep it together. Adam and the lads were so supportive, telling me that they did not matter, and they have no confirmation why I was there anyway, still felt shit about it though. I tried to push them out of my mind but found that hard to do.

Just after that, one of the guys, Rick, stood next to me and took his meds. How brave is he! It was time to take mine too so I did, all down in one, which I had not done before as they are quite chunky and there’s 3 of them. Felt so proud of myself for doing it, especially in public. Cheered me right up.

We left the second bar shortly after, and went to bar three. The ex-friends were in there which was a bit shit, but we ignored them and went straight to the bar. Adam gave me a big hug and kiss, telling me not to worry about them, that the people who know are the only ones that matter, everyone else can just do one! He’s always so strong for me, putting my mind at rest and generally supporting me all the time. Love him so much and am so proud to be his man. Can’t wait to marry him and be his husband 

An old friend was part of our group, my old best friend’s partner Craig. It was so nice to see him, and he was so supportive towards both Adam and I. He told me that he and his partner Lewis would help us both as much as they could during this difficult time, which honestly nearly made me cry. It’s a shame that Lewis, his partner could not make the night, I miss him so much. He’s back in Birmingham next week though and we plan to see each other. I cannot wait, he’s been a huge part of my life and I really want him back in it. We fell out and stopped talking two years ago over something stupid and I’ve missed him so much. So glad I am back in contact with him.

We all sat down in the third bar after getting drinks, chatted to each other and I had a really good evening. I even put a name badge on which was a big thing for me, and Och, one of the lads, made one for Adam too, it said ‘I’m a wanna be’ which we all found really funny. It was a name tag that states Beyond Positive, a statement that yes, I have HIV, and I’m ok with that. Even though really, I’m no were near ok with it, it has only been a month after all. Felt good to wear it though, and I was proud of myself for putting it on.

After bar three Adam and I decided to call it a night and head home, we said our goodbyes and were on our way. Everyone was so nice, welcoming, supportive and just generally lovely. They are all so inspirational in my eyes, getting on with it and not letting HIV hold them back. I honestly cannot wait until I am at that stage, but I realise I have a long way to go.

It was an up and down night, mainly up though, and I feel so great about taking that first step, meeting people who have HIV. They all seem so happy and healthy, something I aspire to be as soon as is possible.

A new chapter of my life has started and I feel great about it. Just need to deal with my insecurities and get used to living with my little passenger. I need to realise that it’s not me, it just lives inside me, and that I can control it. These people have helped me to realise this and I’ll be thankful to them forever for that.

The story goes on, just as life does, and that light at the end of the tunnel has just got a lot brighter, and a lot closer.

DathomirDan.

Thanks for reading.

Diagnosis Blues

It’s been a tough few days since Wednesday 3rd June, the day I tested reactive on a pin-prick HIV test at the Terrance Higgins Trust at Wolverhampton.  I’ve been ill for a while but did not realise how badly until then, the evening that my life was turned upside down.

I’ve been under the care of my GP since February 2014 for sleep loss, feeling down and my bad back, the GP diagnosed me with depression and prescribed anti-depressants, advised me they would level out my sleep pattern, told me to take one a day and return in a month.  I started the tablets and returned in a month to have them increased by 10mg, this happened for three months in a row.  During this time I was not only losing sleep.  I have lost almost one quarter of my body weight, had night sweats, cold and hot flushes/shivers, headaches and sometimes waking up to feel like I’d been beaten up.  On the fourth month that I returned to the GP the dose of the Citalopram was going to be increased again, and I was advised to come back in another month and that the tablets would sort out my sleeping pattern.  As soon as the doctor told me this I broke down.

The sleep loss has affected my job, constant mistakes were being made as I could not concentrate, I voiced my concerns over my weight loss and the constant night sweats and the fact that I thought I was losing the plot.  The GP advised me that it could be an issue with my Thyroid and suggested a series of blood tests, took my blood pressure and weighed me.  She prescribed me Zopiclone to help me sleep and we arranged the blood test for the next day.  I felt a little better on leaving the doctors surgery as I felt something was being done, and I wasn’t just being fobbed off with tablets and being told to return when they run out.

Then the troubles started.  The blood results came back a week later and all they would say is that they were abnormal and would need further investigation, my Thyroid was fine though.  I was then asked to lie down on the bed to be examined, my glands were checked and that’s when the GP’s mouth dropped.  “Wait  here one minute please, I just need to get my colleague to check something”.  So I waited on the bed feeling a little bit scared.  Another GP came into the room and performed the same examination of my glands, a bit more vigorous than the first GP.  Then another GP was invited into the room to perform the same examination, at this point I knew something was wrong and then the questions started…

“Have you ever been to somewhere exotic like Africa?”, “Have you ever had a sexual partner who was not born in the UK?”, “have you come into contact with someone who has TB?” (like I’d know!).  I asked one question – “is this serious?”, and got the answer from the first GP – “Yes, but don’t worry too much, you could make it worse”… GP number two told me it could be one of three things, Hepatitis, HIV or Non Hodgkin’s Lymphoma, at which the tears started coming out.  “Don’t worry, we’ll get you an emergency appointment with the Haematologist at New Cross Hospital” is what GP number 1 said, GP three had stayed quiet throughout.  I’m still waiting for that emergency appointment now, it’s due Friday 13th June at 12.30 PM.

I left the doctors in a haze, not knowing what to feel or expect, or what to do about it.  I called my partner instantly and as soon as he answered I started blubbering down the phone about what had been said.  He came straight out of work and met me at home, he’s such a star.  I called work and told them I’d had some bad news and was very emotional so I would not be going in, which they were fine with as they knew I was coming to get results that day (Tuesday 2nd June 2014 9.12 AM).  By the time my partner Adam had got home I was a mess on the settee surrounded by the cat, dog and a roll and a half of used up tissues (toilet roll) and could barely breath as I was that scared.  We chatted a little and discussed the possibilities of the three outcomes it might be, then Adam turned to the internet.

As HIV was mentioned, he went straight to the Terrance Higgins Trust website and looked at symptoms and guess what?  I had 8/10 symptoms for “late stage HIV”.  He advised me not to look online and that we’d pop in to the trust after work the next day for a HIV test and some information so after work on Wednesday 3rd June that’s just what we did.  I met Adam at the bus station then walked on down to Bond Street in the rain, dreading what was going to happen.

We found the trust quite easily and were greeted by a kind young man with a smile and an offer of a drink, asked to take a seat and to fill in a form for the HIV test.  5 minutes later we were asked to follow a doctor into the “testing room”, a white-wash room with white leather sofa, white table and white blinds…how very clinical!  We were asked pointed questions about our sexual relationships current and prior then received a prick on the finger to perform the test.  Back into the waiting room we went to await the results, probably the longest 20 minutes of my life.  Adam busied himself picking up leaflets about willies to show the girls at work whilst I sat there shitting myself.  Then Dr Patrick returned and asked us to follow him into the “white room” for our results.

Adam went first, he was shown the test and told that it had come back as negative, no sign of HIV.  Then it was my turn.  “See this line on the test here?” said Dr Patrick, I could hardly lie and say no, “this means that the test came back ‘Reactive”.  I don’t think I quite understood at first, but the look of shock must have been apparent on my face.  “I’m going to refer you to the GUM clinic at New Cross Hospital for a follow up test to confirm that you have HIV”.  I didn’t say anything until I was outside, and to be fair I didn’t really speak, I just cried.  HIV positive.

6 years Adam and I have been together.  6 years of love, joy, fun, hardship and all the other things that go with a relationship, how could I not have infected him?!?!  Surreal is what the moment felt like, like I was there, but not really there, overjoyed that Adam was clear, devastated that I was positive.  We walked in the rain to the tram stop to go home, Adam reassuring me that I’d be fine and that he would be there for me the whole way.  I tried to remember what Dr Patrick had said about the referral but all I drew was a blank.  The tram ride home lasted about 10 minutes where we spoke in hushed tones about the advances in treatment for HIV and that it isn’t “a killer” like it used to be.  Nothing that he said could make me feel better, I felt dirty inside and out, like I was rotting from the inside.

I had a drink that night, I’d been off the pop due to my tablets since February, but with the shock I had received I thought I deserved a break.  I cried for most of the evening, went quiet quite a few times, falling into my own mind and worrying about what happens now.  I can’t really tell you all the things I thought might happen as there were so many and no matter how much wine I drank, all I could think of was HIV, AIDS and Death.  Needless to say I did not sleep particularly well on Wednesday night, even on Zopiclone.  I managed about 3 hours then tossed and turned for the remainder of the early morning in bed, finally getting up at 6 AM, not wanting to stay in bed as I’d sweated that much that my skin was shriveled like I’d spent 3 days in a bathtub.  I sat in the living room with a coffee and stared out of the window for about half an hour thinking about everything growing outside, the birds cheeping and the wind blowing and how perfect it all looked.  It made me really sad.

I couldn’t sit there all day feeling sorry for myself so I decided to go to work, managed to get there 15 minutes late and only just sat down at my desk when I got a call from the GUM nurse at New Cross.  Dr Patrick had referred me as an emergency case and that I should make my way there, handy really that i was in the Wednesfield office, just round the corner.  I called Adam and he said he’d meet me there, I told my boss that I’d tested reactive the night before and needed to go to the hospital for a follow up test.  She was great, reassured me that I’d be fine, that I have a great partner and that the nurses and doctors would sort me out.  Why don’t I feel any better about it then?

A slow, dazed walk brought me to the entrance of New Cross Hospital where Adam was waiting, he’d just been dropped off by a work colleague so he got there pretty quick (before I could walk round a corner apparently-I wonder how fast Rob drives?).  We walked round to the GUM clinic via the Beynton Centre for directions, it had been years since Adam had attended the GUM clinic here, and I had never been before, being from Birmingham, I’d used the one there last.  Greeted by the receptionist, I gave them my name and told them that Dr Patrick had sent me, and we were whisked into a room that can only be described as “This room is for when we need to tell people they are going to die, in private” to fill out some forms.  The nurse was very bubbly, which I resented, silly me, if only I’d have known how nice and supportive she was going to be.

The room was pink, paintings of grassy landscapes, beaches and forests, along with a nice bunch of plastic flowers, a box of tissues and a bottle of hand sanitizer, and of course, those lovely wipe clean green leather hospital chairs.  There was also a white two seat leather settee, we chose that option.  There was a TV, the nurse said it didn’t work, I took her word for it.  She’d gone through our completed forms, asked a few questions about how we both felt and told us what would be happening that morning, then I was whisked off to Treatment Room Two for a one on one with Michelle.  Scared.com.

10 minutes later Adam was back with me, via request.  I’d survived the one-on-one questions but nearly passed out when I had my blood test.  The thought of what was in my blood turned my stomach, I went light headed and my hearing went distorted, I must have gone a lovely shade of white.  How embarrassing.  I was in a chair with my feet up when Adam arrived, smiling, I instantly felt a little better.  Adam remained in the room whilst I was examined on the bed by two nurses, lovely girls.  I had a rectal swab (ouch, have you not heard of lube?) and confirmation that I have piles.  I laughed so hard I almost forgot I had HIV, Adam was tittering away in the corner, obviously amused at the thought of my piles.

About an hour later, we’d both answered all the questions, had bloods taken and were given a lot of information about what was going to happen next.  Good job Adam was there as I had forgotten everything by the time I’d stepped out of the treatment room.  The nurses had booked me an appointment to return in the afternoon to discus my results and possible treatment.  We walked back to the office to pick up my bag and inform my boss we’d be going back to the GUM, I cried a little and couldn’t get my words out, Adam stepped in and told her all that had happened.  He’s been so good to me, so strong, I don’t know what would have happened had he not been there.

After leaving work we had an hour to kill before going back to the hospital, we decided to walk to the Nickelodeon at Bentley Bridge with the intention of having some food before returning to the GUM, we both had a beer and a very long chat instead, I couldn’t face eating.  The hour dragged time wise, but the company was great.  I didn’t know what to say to Adam, my feelings were all over the shop, they still are now.  He lead the conversation showing support and telling me again we’d face it together but no matter what he said, I couldn’t stop thinking about death.  On the way back to the hospital I forced myself to eat my sandwiches and a chocolate bar, I needed the energy to be honest, but had to force it all down.  Luckily it stayed down.

 

Three and a half hours later we left the GUM clinic, I was 13 vials of blood lighter and we both had an appointment booked to get results for Wednesday 11th June, tho days before I’m due at the Haematologist.  It had been confirmed that afternoon that I had HIV, I didn’t have Hepatitis though, luckily the last time I was at the Birmingham GUM I’d had a series of injections to prevent the disease.  They said they were amazed I hadn’t infected Adam, especially after 6 years.  From the look of my test and my symptoms, they think I’ve had HIV for up to 10 years.  10 fucking year’s. That’s when it all clicked and I realized where it had come from.  The timing matched perfectly, the cheating ex, the rough break-up, the rumors that I’d heard from “joint friends”.  Gutted.

A chest X-ray was next, followed by a taxi ride to my GP’s surgery, finally getting home at 18.30.  I’d got into the hospital that morning at 10 AM.  Don’t remember much about the evening apart from crying lots, drinking a bit, then not sleeping too good again.  Shitty shit shit scared.  Why me?  That bastard.  Yes, I did check his facebook, no, I didn’t contact him, the clinic is doing so, don’t really want to speak to it as I’d probably threaten him or something stupid.  Another great service from the GUM clinic.

I joined the HIV forum MyHIV.gov that evening, not realizing the notification went to my junk e-mail to confirm, I didn’t get to access the site until the next morning.  I couldn’t face work Friday but Adam went in.  I spent the day familiarizing myself with the MyHIV.gov forum and reading the THT website back to front. I did this for most of the weekend too, although we did go out shopping as well.  Felt dead rough being out, so nervous and anxious, shaking badly, sweating, feeling sick.  It was a quick shopping trip then back home.  Cried loads and got supported loads, then the weekend came to an end.

I can honestly say my partner, Adam, is fucking Amazeaballs.  I love him so much, and it’s more than clear how much he loves me.  I told him I’d understand  if he wanted to end the relationship, he said “don’t be stupid”. I also told him I’d understand if he wanted an open relationship, the opportunity to have a less-risk sexual encounter, he told me I’m all he needs.  I cried my eyes up, I’ve never had a partner like him, he’s my world, my rock.  Flowers and a card awaited him on his return from work, I can’t stop thanking him, I also can’t stop apologizing for everything (I mean, EVERYTHING).  Must be my fucked up emotions.

What’s next? Results, that’s what.  My CD4 count (T cell (white blood cell) and my Viral Load (VL(how much of the infection is inside me that determines how infectious I am).  Scariness, sadness, emotional overloading and lots of crying.  Also bucket loads of support from Adam, the nurses and doctors at the GUM, the fantastic people on the forums at MyHIV.org, my manager that I told everything, and her manager by default.  HR on Thursday as I feel I should disclose.  And one very good friend, more so to Adam, but I love her loads.  A “colleague-come-BFF” for my fantastic partner, a great listener and a naughty little minx when we’re out.  You know who you are, you’ve been great.  It means so much to me, from all of you.  This darkness might just have a little bit of light, thanks to you all.

 

It’s only just begun.  I have no idea how my results will come back but I’m preparing for the worst. I hope I can start medication straight away as I am petrified that I’ll infect Adam, although I doubt I’ll feel like having any form of sex for quite a while…

 

DathomirDan

Thanks for reading.