Another battle lost

[MrsR]

For the last year I have been one of the "lurkers" following the trials and tribulations of many of the people on this forum. I have celebrated every bit of good news and shed a tear far too many times at the bad. During that time I feel I have come to know many of you.

In January of last year my brother in law Bob followed a similar pattern of jaundice, weight loss etc and was diagnosed with PC after numerous tests. He had many borderline Autistic tendancies and the PC only made it worse. He truly believed he was going to be one of the lucky ones and in fact I suppose he was. He was able to have a whipples in February but by June the little blighter had come back. A full course of Folfirinox followed which he tolerated reasonably well and then he embarked on CRT although his blood count never came up enough for the chemo element. After a hospital stay over Christmas he was discharged into our care to recover from an infection. Sadly what followed was a devastating deterioration, a CT scan showed that it had spread throughout his abdomen and yet he still did not understand that he was losing his battle. It seemed to me that as soon as he came to terms with the idea he just slipped away. He never once complained about the disease even though it took away his prized independence.

Throughout this time Bob alternated between living alone (his preference) to staying with my extended family and associated menagarie. He must have wondered what he had done to deserve it. I am convinced that he felt fighting the cancer was easier than living in my mad house. Previousely he always prefered to communicate by e-mail and my children had grown up knowing that they had an uncle bob but bearly knew him. He proved to be very difficult to live with but then he probably thought that about us too. He wanted to do it all alone which made getting a clear idea of what was happening to him very difficult and even more difficult to get any additional help or advice. I turned to the support nurses too late really but am extremely grateful for Jeni's sage advice and support. I never expected for things to change so rapidly but then it seems to be the way with this disease.

To all those who have recently lost loved ones and yet still support others, to those who are still caring and those who are still fighting - you are all an inspiration. I wish you all well and thank you from the bottom of my heart

Lesley

Edited January 13, 2014 by MrsR

[J_T]

Hi Lesley, so sorry to read Bob's story and many condolences for your loss.

You are right, too many brave people have gone the last year and thats just those on this forum.

Its a wretched disease.

Take care

Julia x

[nikkis]

Hi Lesley,

Very sorry to hear about your brother in law. How wonderful though that you welcomed him into your home when he needed you, despite how difficult that was for all of you. My husband, who has PC, says how lucky he is that he never has to fight this alone, and you were obviously there for Bob.

Take care Lesley,

Nikki

[MSH]

Thank you for your good wishes, and I am sorry to read of your loss. It is never easy providing care and it sounds to have been particularly difficult for you and Bob.

[MrsR]

Well, the funeral is over and Bob is laid to rest. Having seen the fantastic send off the Met Police (who he worked for almost 20yrs as a civilian) Motorcyle escort, pallbearers etc, the number of high ranking officers who attended and the array of his TA comrades including no less than 4 ex- commanding officers, who came from all over the country to pay their respects I realise that there was a man who I never really knew despite being married to his brother for 32 years.

If pancreatic cancer gave us anything it was a chance to get to know him a bit. He kept his life in strict compartments and never the twain shall mix until yesterday. His work colleagues really thought he was getting better - because he did right up to the end, his TA buddies did not even know he was ill - because they did not need to know and we his family saw just how ill he was even when he couldn't.

It is clear that his autistic obsession for detail stood him in great stead in his employment and with the TA where he served in Military Intelligence for 36 years. In both areas he excelled at what he did.

I feel torn - should I have made more effort to get through to him, I tried so hard, would I have been successful if I had tried harder?, why did he let these other people get to know him and not us? why did it have to be the last week of his life that he finally let me in and make me care so much. I know it is a natural part of the greiving process and it will pass.

I feel angry too - at the end of October he went to his GP complaining of a pain in his lower abdomen, why he went there only god knows but he did. The GP diagnosed a hernia and referred him to the hernia clinic. He was advised that an appt would take 8 -10 weeks so we duly waited. The pain increased and we began to suspect that the lump was not a hernia but something more sinister but Bob would not have it as we were not doctors so how would we know. When he was hospitalised for the final time I had to cancel his hernia clinic appointment at a different hospital as a) there was no hernia, it was a metastic tumour and b) even if there was he was too ill to attend. Imagine my dismay when this weekend we picked up a letter from his GP explaining that as he has cancelled the appt he would have to wait at least another 8 - 10 weeks for a new appt. I was so angry my husband had to physically restrain me from going over to the surgery to implant said letter where they did not want it. This is so unlike me

My children tell me that this is a natural response as by nature I am a fixer and I could not fix this.

Well I have vented my spleen and feel a little better so I apologise for my drivel.

Lesley

[Cathy]

Hi Lesley

I am sorry to hear of your loss. You must have lost Bob very close to the date my Jonathan died so I can tell you that everything you are feeling is entirely normal. I find myself torturing myself at times asking "what if" questions and feeling guilty which I know is mad and friends are appalled by. I hope in time I will allow myself to accept and be comforted by that fact that I did the very best I could and I hope you do too.

Your household sounds brill by the way!

Take care

Cathy xx

[InfoForMum]

It sounds like an amazing amount of respect was shown at his funeral. Perhaps in the super disciplined life within the TA and intelligence service his natural tendency for withdrawl was a bonus rather than a burden. Aiding his ability to focus intensely on one task at a time to the exclusion of all else which would, I suspect, have suited him and his unit. My old judo sensei was a specialist psychiatric nurse in a hospital for the autistic and he said that his high functioning patients found their trips home intensely draining and stressful because they understood others' needs for interraction on some level, but they either couldn't respond and got agitated or upset or could respond to some extent, but frequently exploded or completely withdrew after trying for a while. He said that the greatest gift a family could give some of his patients was to simply be available or be present, but demand nothing. Perhaps it was his appreciation of you doing the same that gave him the will to open up to you. So rather than others knowing him and you not, my old friend thinks it highly likely that your interraction at the end was a really victory of his will to bond with you over his normal behaviour.

I hope this point of view is welcome, if not I apologise, but wanted you to not beat yourself up over what you think might be missed opportunities.

Sarah

XXX

[MrsR]

Thanks Cathy and Sarah,

You have both been helping me for a while without ever realising it.

Cathy,I was devastated to hear that Jonathan lost his battle just a day after Bob. There has been so much sadness recently. I hope all goes well for Jonathans send off and will try to keep an eye out for any benefit you organise. Your exploits with wheelchair has brought a tear to my eye in the past.

My household is a prime example of "that everything happens for a reason". The ressession found my husband's business struggling so in 2012 we decided to sell our 4 bedroom house before it was taken as there was only me, my hubby and son living there. We decided to rent for a while until our son was ready to move into his own place but could only find a 5 bedroom house that would accomodate us and the business. Before we knew it our daughter returned home after splitting up with her partner of 10 years bringing her two elderly

house bunnies, Bob became ill in early 2013 so he filled another room and then my son unable to afford a deposit for his own place brought his girlfriend to live at "Riley's home for waifs and strays". The final member of the Riley family came in the middle of last year when we got a kitten. He spent many an happy hour curled up on Bob's lap while they both slept. Little Blu has cried a lot since the 9th and spends time looking for his bezzy mate but has been a big support to us all. When he climbed up onto my hubbys lap and licked the tears away I just melted. It's a busy but happy house with 2 shift workers coming and going at odd hours.

Sarah, Your thoughts have been a great help and given me a new perspective. I have been following your blog on your Mum's behalf and so wish I had been able to do the same for Bob but he would have never let me that close. I wish both you and your Mum well.

The process of clearing his flat has started and will keep us busy for some months I think as he does not seem to have thrown out anything for years and has amassed thousands of pound worth of model kits for his retirement. I am determined to find them a good home.

Lesley