Wednesday, 24 November 2010

Unequal fights and battles.

This is not a blog about J but a rant about the unfairness of life sometimes.

I hate cancer, it’s the most godawful and unfair disease which can seemingly strike without warning and  has no certainties about it. In the same way I hate seeing terms and words like “fighting” cancer and "battling" because without a doubt you cannot “fight” or "battle" cancer. Fighting suggests equality and there is nothing equal in this fight, you take the treatment and you hope for the best. You keep a positive frame of mind (or perhaps are a positive person anyway) and if you are lucky the drugs will work and you will be cured. If you are not lucky the cancer will return and find somewhere else to take root. Then when you have your backache/painful leg etc a doctor will talk about “muscular pain” and treat accordingly before finally admitting defeat and suggesting a scan which shows the cancer has spread to your spine, leg, liver or anywhere else it feels like.

I don’t have cancer, I have seen plenty of people WITH cancer who fall into the “lucky” category and lived to tell the tale. I have met others who fell into the second category and are no longer with us. I am closer still to people who are IN the second category and still with us.

Both my aunties have cancer – both are women who have lived productive lives and given so much to others. One auntie is well and truly in remission following a rocky summer, the other auntie having had several periods of remission suddenly seems to be going downhill and there is nothing I or anyone else can do about it – there is no fight because without a doubt this disease will succeed sooner or hopefully later.

My auntie is a wonderful, warm and caring person, a mother, a wife and much loved sister. The past few years have been up and down since her diagnosis of uterine cancer three years ago. The cancer was a “Grade One” and “just about the lowest grade it could be”. Other memorable phrases are “this cancer is contained – it doesn’t go anywhere” (forgive me here while I have a hollow laugh), and “as an insurance you could have some radiotherapy” (my aunt did).

So fast forward a few months and she is bleeding “it’s a polyp” (oh yeah) and even more months while she waited for a consultant appointment to be told the polyp had “changed”. Surgery followed and results showed spread of the initial cancer. More Radiotherapy followed and things settled apart from lower leg pain which was deemed “muscular pain” for months and months before a GP finally arranged an X-Ray which showed changes in the bone (you don’t need to be Einstein to work out what these changes were).

Next Consultant appointment:-

“Oh it’s spread to the lower leg – gosh that’s rare” (No sh*t Sherlock – that’s why you’ve been confidently saying “muscle pain” for the past few months then). Surgery followed and a pin to prevent the bone breaking was inserted. Fast forward another year and “my gosh that’s not really working either – let’s get a second opinion from Stanmore” (if only they had done this initially).

The Professor at Stanmore was lovely and experienced and recommended “an above knee amputation in the New Year – either here or at your local hospital” (Stanmore Stanmore Stanmore NOT the local hospital with doctors who told my aunt her lower leg pain was “muscular” so many times).

Just two weeks on things are changing, a bad dog bite to her hand has meant more surgery for my aunt and she is becoming forgetful and unable to get her words out. She looks tired and unwell despite several days of antibiotics (including IV antibiotics), painkillers and a blood transfusion following surgery at the weekend. More worryingly when my Mum was helping my aunt dress when she was discharged from hospital she noticed a large swelling just below the shoulder blade. I am so angry about the waits she endured earlier on in her treatment because we just don’t know if more urgent treatment would have made a difference. Now all we can do is support her, love her and make sure she does not feel isolated and alone (not likely with my wonderful 85 year old Uncle who is doing everything for her). We are visiting when we can and getting bits in for her – she is eating and drinking and still on good form but frustrated by her inability to find the words she wants to. I feel the next few weeks will bring more information and I am not confident this information will be positive.

Saturday, 6 November 2010

Concrete Bowels!

From early child hood J has had an ability to avoid opening his bowels for a few days at a time. This is partly because he is usually very busy and does not have time to sit on the toilet. The other reason is because he has obviously felt pain in the past after his episodes of withholding and so wants to avoid this. I have had several people tell me this is very spectrum like behaviour, however I have seen it lots in neuro-typical children too and am unconvinced about the association with the autistic spectrum.

So - this week J has managed a whole 8 days without opening his bowels. I have tried Lactulose, Movicol (ongoing) and glycerine suppositories all to no avail. I have watched with trepidation as he eats and adds more waste to the bulk already there and I have seen J adopt a variety of positions much like a woman in labour to cope with the pain he was experiencing in his rectum and abdomen.  I have had him sitting on the loo with his feet on a box and blowing bubbles, I have had him rocking back and forth and singing songs all to no avail. As the days went on I was increasingly both anxious and amazed by his abilty to hold on to it all.  By Day 8 I was amazed he could even walk!

By day 7 it was getting horrible, J was experiencing increasing stomach cramps but was totally unable to cope with the idea of sitting on the toilet. Offers of another glycerine suppository were aggressively refused and I was in despair. I spoke to NHS Direct who were lovely and agreed that I needed to see a doctor. I phoned the GP surgery and asked if a GP could ring me back, a lovely lady doctor spent ages going through what we had already tried and agreed I had tried all the right things - she suggested buying some Senna.   A trip to the local Pharmacy followed where the pharmacist would not sell me Senna because "we don't usually sell this for children", however did agree to give me some Ex-Lax. I gave this to J with his nightly dose of Lactulose.

By Day 8 J was doubled in pain, crying and refusing to move - his activity levels were certainly curtailed. I rang the GP surgery again but the phone rang and rang because it was morning and they were busy.  J then became hysterical when he discovered blood after sitting on the toilet and I made a snap decision to take him to A+E for advice and to ask a doctor to feel J's abdomen.  The staff in A+E were brilliant with J and accepted his refusals to have his temperature taken. I was embarassed by J's refusals but they took it in their stride. I was very clear with J that the doctor would have to feel his tummy and that he HAD to co-operate, J agreed until time for co-operation began. He flatly refused to enter the room until he had questioned the doctor closely about his intentions - "no J I am not going to use any needles I just want to feel your tummy". Grudgingly J agreed to lie on the couch but told the doctor "don't cut me open", the doctor kindly agreed NOT to do this and peace reigned. The doctor could feel that J was "bunged up to the eyeballs" (my words and not his) and suggested that he give a prescription for Senna that the pharmacist would not sell me the night before. Anything else was out of the question as J would not co-operate.

So Senna was given at about 5pm to work overnight and by 6pm the combined effect of the rest of the stuff given began to make itself felt. J was hysterical and the only thing he would agree to was a bath. I ran the bath and J got in with help as he was by this point hardly able to move. Twenty minutes later J shrieked that he had "pooed in the bath Mum" and I went in to find J sat sobbing in pain - he had managed, however to have the beginnings (large) of a clear out. He was refusing to move due to the pain and it took 10 mins to persuade him that he could not stay in the bath and had to either climb out or let me lift him out. In the end I lifted him out to yells of pain and he stood wrapped in a towel and crying. Just a few minutes later he rushed into the loo and cleared out masses more and then we had more minutes of refusal to wipe his bottom "because it hurts Mum". It took some time to persuade him that we needed to get him clean or he would remain sore. I resorted to bribary at this point - wipe his bum or let me do so and he could have his pick from the tin of Celebrations bought for Xmas. It was no contest and despite crying he managed with help to clean himself. The tin of Celebrations (appropriate) was brought up and a few sweets chosen.

An hour later J announced that "nothing hurts anymore" and began bouncing on the bed.

I had a headache!