You are all probably wondering why i haven't been that active on Widville but saying that i am around on facebook,i have made many friends over the years through social networking,purely because of promoting my art and photography,but now i am faced with a different predicament a Widower at 43,what does this mean for the life i once had with the people i used to network with on a regular.Well i can socialize and adapt easy so making new friends like i have done on here isn't really a problem for me,but when my life gets taken over i am left with that decision ie what's more important caring for someone who really doesn't need looking after being taken advantage of or putting everything into my art and photography.For years and years i worked in silence whilst supporting my late wife,made sacrifice after sacrifice just so that she could have the same life as everyone else.
This blog it is hoped ( though it not finished) will give you an in sight into a life i shared with some one for 25 years which i hate to say was far from perfect starting with the people we got to know in the 9 years of living in Chelmsford (would have been 10 years in October) many of them were shocked that i had lost her so suddenly( she was very popular and well liked) this ranged from the hospital who had treated her,to our doctors surgery,the taxi firm that used to take her to her twice weekly college classes,followed by the shops we used to go into and when we used to order our regular saturday take-away,every one was like speechless or didn't know what to say to me.I have experienced the loss of some one that was close to me and neither of them was pleasant or easy to deal with,but as its now three times for me i am actually hurting really bad inside always struggled in showing my emotions and now its like oh gosh !!!! i actually cry but not when there's people around me.
They do say if a boy or a man cries its usually because of a sign of weakness,with words like don't be a sissy and so on,i was bullied and teased a lot at school,i have a weakness for films like ET and any film such as Annie where you know something bad is going to happen lol !!!!!. You might not all know about this,but my late wife Jayne had a powerful singing voice as the story goes this is going back to the time just after we had met at a camphill community called coleg elidyr . I was sitting one of my GCSE courses (English Language) and a film crew happened to be in this hall next to me suddenly i heard this singing and i thought no that can't be my Jayne next minute i rushed out of the classroom and broke down.I found out later it was her singing a song that was for a film about her.
Jayne was my rock,soul mate,the wind beneath my wings and not forgetting my sleeping princess too,no one expects to lose their loved one,was i ready to say good bye to her no !!!! i would rather remain celibate than get close to anyone again.Being widowed one would expect to be allowed to grieve or make the transition on starting a new life but this simply hasn't happened with me 6 months on the rawness is showing no sign of calming down,everything in our home that i bought for her i have to touch on a daily basis.When i had one of her sisters stay with me and we had that big moving on thing that only occurred,because she saw me tidy up our bedroom (made a start on painting the walls) so obviously thought okay lets get on with the rest of the flat.
Jayne never got on with this particular sister in the end (she started showing her true colors to a lot of people) reason being she wanted our son to know she had breast cancer but sadly he only got to know when she really did get poorly,at the end of the day all Jayne wanted was to be treated with the same dignity,compassion and respect like everyone else.My view in the kind of world we all live in today this was never going to happen,her last final days was the worst experience for me ever to deal with,no person no matter what race or color they are of or whether if their religious or have a disability,should have had to endure what she went through.
Any disease or illness we tend to pick up during our time on this planet can either be fatal or cured in Jayne's case she might have had some protection against certain types of cancers but as this was breast cancer she had no protection what so ever,having downs syndrome meant it would be at the age of 50 of getting screened.She was 46 when she got diagnosed with invasive ductal carcinoma and within 7 months the cancer metastasized. From the moment Jayne had surgery in the July of 2012 the cancerous lump in her breast had already gone through her body,this is the strange part the hospital were all confident,they had got it out both her bone and CT scan were clear too.The term invasive means a certain cancer or foreign body is capable of spreading to other parts of the body now what if the cancer had gone somewhere else straight away hence why a few months down the line we get to hear about her liver being slightly enlarged which obviously got big and finally put her in hospital.
i have no one to talk to or share on getting across what i think really happened and leading up to the way my Jayne died in the end,i know many of us on here have had their own fair share of suffering and feelings of anger and hurt aimed at the people who we believe did their up most best,but did they !!!!. Currently in the news at present over in the UK their is a big investigation going on regarding our National Health Service ( NHS ) since 2005 there has been concerns over a level of high death rates 14 trusts are now being investigated one of these trusts which runs two hospitals treated my wife twice ( once where she needed dental treatment resulting in a tooth in her mouth being left to rot) and recently of this year for radio therapy.I know Jayne isn't here any more and i can't undo what has happened despite being intellectual and reasonably independent she had a learning disability.
For nearly 17 years i was kind of forced or put in an uncomfortable position of caring for someone who actually was capable of doing things for herself,we all have to do things that we don't like doing,but in my case i was like on my feet seven day a week 24/7,what ever support Jayne had it was like say a couple of hours a week,now in light of her getting cancer this was say a tip of the iceberg,she had complex underlying health problems one of these was so severe (will explain in a min) i can no longer do the kind of work i did in the past such as industrial ie packing/cold store. I know this was never her fault but she was allowed to carry around at least 160 kilos of weight that is about 25 stone, when we moved in to our current flat where i am still now okay , it was all o n one level but with only a small bath,occasionally she would get stuck so i had to get her out of the bath (lifting).
Jayne also had slight balance/mobility issues too which if ever she felt unsteady or had a fall i had to lift her as well unless she could do it herself,she had grade 3 lymphodema in both legs plus her tummy looked fairly swollen too,i know this might not make easy reading. But if you saw how much i loved her,and where i virtually became powerless in the end,would you have wanted your own sister,brother or loved one to be left in such a way to a point where they were heavily dependent on you,because of the various health services either not up to the level of dealing with someone with a learning disability or where,criteria's were being tightened/restricted.Why did Jayne get like this well i don't know,but one thing she suffered a very serious sexual assault in 1993 this really did throw her back as she was always outgoing and so on,from there her legs started to swell slightly.
Seeing that Jayne had downs syndrome her's was mosaic downs it is commonly known for people like her to put on weight,but one has to remember (if you look at the photo i posted of her and me back then she was a size 8) with a proper diet and weight control they are able to control their food intake,but instead we hear words being written up or recorded such as r****d obese and dysmorphic .Don't be suprised if after writing this blog i end up feeling physically sick, i have never been a close favorite of the health services ( my own mum might have had Munchhausen) after being told i was kind of anti-authority,i saw systematic failure with me as a child (to a point there are no records of me during my first five years of life) but never expected the same systematic failures to happen with Jayne too,every one should be entitled or given choices regarding their health needs,she never had such things open to her,and was placed under services for learning disabilities i:e feet and dental
i was responsible for all her health needs/welfare but faced constant battles in ensuring her needs were being met,she was diabetic double incontinent had issues with her thyroid,partially deaf in both ear difficulties with swallowing and choking on food.I never complained on ending up as her carer and tried not to make it out that i wasn't happy in doing this,but when her health problems started to deteriorate this was like the final straw for me Not being able to work often made me agitated with bouts of frustration,i have if there's any thing left of it my own photographic business which Jayne was part of and helped me set it up back in 2001.
Couldn't do much with this either,i had extensive experience and knowledge of working/living with adults who either had a disability/learning disabled,(before i met Jayne i had a form of platonic friendship with two young adults who also had downsyndrome this was while i was at St Christophers school in bristol) and managed to work with a few groups designing and creating newsletters and brochures ( one of these was promoting health and safety in a format using photos and text) .The business was called Rainbow Designs & Photography originally formed as a social community enterprise its aim was to design and create newsletters,brochures,flyers,and business cards for community groups,the private sector and so on.
Jayne was supposed to have had some involvement too but some where down the line ended up with a serious bout of depression ( partly due to losing her mum and of losing custody of our children) I guess one could say we went from hell and backwards followed by daily struggles just so that we could remain together as a couple,once her health took control of her life,i knew then it was only a matter of time before something serious was to go wrong.On the subject of her legs these started to cause her problems but she never complained in 2010 got referred to our local hospital to see if they could do anything with them,i had always suspected she might have lymphodema (some kind of foreign body had got into one of her legs) but this got put down as too much fatty deposits.
This foreign body as Jayne puts it was a little wheal on her right leg which was always itchy,our hospital asked us about it but i doubt anyone looked in to what it was,she had an ultrasound on her right leg to see what was going on but nothing was said.Later there was mention of clotting so i assume she had blood clots in her right leg (which started to get inflamed and swollen)what did this mean well as the consultant put it bluntly she was at risk of developing a pulmonary embolism.Some thing would have been done but it was like oh !!!! new government has come in,need to discuss about funding( Jayne was in the category of being clinically obese) .So we had another appointment to go back,by then its was like are they going to help her,finally it all came out in the end Jayne did have Lymphedema her's was grade/stage 3 the only option was to either drain or cut open both legs nasty eh !!!!.
With it all being confirmed she did have Lymphedema another appointment was set up but this time to a hospital in London which was renowned and specialized in the treatment of Lymphedema could they help her no,first of all the original referral goes to the wrong department ( this hospital had a section for the other type of Lymphedema but the one linked after having breast surgery) when Jayne gets to hear the word cancer and what they would do to her legs she totally freaked out.This particular hospital wasn't interested in her legs but more on the Bariatric side of things in the end they mentioned there were two other hospitals who could do the procedure ( i'e cutting her legs open) our own hospital couldn't,but wait for this yet more funding issues and the fact Jayne was obese or was it because she was disabled !!!!!
.All this took place in 2011,at this stage her health wasn't good,over a period of time she had been suffering in silence with severe and crippling abdominal pains,how did these arise well i am still trying to fathom the cause of these pains,my conclusion is some link after she had our second child in 99,it was a difficult birth which resulted in all her insides being twisted and knotted ( i remember the surgeon saying do you want to see her insides and i thought what !!! ) any way they all get put back in the way they'd been left and she's sown up etc etc Sorry if this doesn't sound nice but imagine being in constant agony/pain for 14 years.Jayne had constantly gone to our doctor where we were previously living and down where we are now right up until her death about these tummy pains but no one believed her and thought they would subside but sadly they didn't resulting in me probably from never working again.
These abdominal pains would affect both sides center and back surrounding the abdomen/organs to a point it would cripple and imobise her ( she had swallowing/choking issues in 2005 but don't know if that ever got picked up and again say end of 2012/beginning of 2013) once these pains were so bad i had to help her dress and take her to the toliet did i receive any form of training/guidance about lifting someone who was say about 25 stone,there was nothing in our home to assist me so i guess unless i asked the answer would be no !!!!!Lets put this way these pains Jayne was having were there just at a time when she had chemo when that stopped they came back and while she had radio therapy. My conclusion and this is only a wide guess did she have stomach cancer as well as breast cancer,the large mass which put her in hospital a second time (was pressing on her other organs and making it difficult for her to hold food down) had actually formed next to her liver well so i was told but then one gets to hear she had small masses in her liver so who do we know is telling the truth. i will update this blog again