Helen Carmichael

Wednesday 30.06.10

Well, the funeral is over and the whole day went extremely well, which is a relief. The weather was great - very warm but luckily most of the time when we were at the hotel, it clouded over so I could sit outside. Only just at the end did the sun come out strongly and I had to hide away inside. The service itself went beautifully, although I wish they had played a bit more of movement 2 of Elgar's cello concerto, played by Jacqueline du Pre, for the beginning. It is a wonderful piece and they were just beginning to get into the main theme, when the music was faded out, which was a great pity. Sheena read a poem beautifully, as did Pat's sister-in-law.

My face calmed down a lot, although the rash is still there. My hands and still covered in it, but they are also improving. The new things is that my finger tips and finger nails, and to some extent my toe nails too, are very painful when I try to use them. Finger nails are also starting to go yellow at the edges! Again something they warned us about, but it does feel rather odd.

For this reason I won't do too long on the blog today. It is not very comfortable to type! Energy levels are improving but still not what they should be.

Saturday 26.06.10

I've not been too bad this week. Very tired, but otherwise everything seems to have stayed reasonably normal, until Thursday evening when I came out in red blotches and a rash on face, hands and neck areas. I took some advice from the hospital and went to my GP on Friday. Apparently it is an allergic reaction to the drug and they've given me anti-histamine. So far not much of an effect, but it is early days.

I did have something similar last time, but not as much and in the scheme of things it did not seem very serious. But now my new nickname is beetroot. If it stays like this for the funeral, I am going to be a sight!

Otherwise most things seem to be under control, including the funeral arrangements and Donald has sent all he needs to, to the lawyers. So for now, things re Pat are much calmer.

My cousin is not really improving at all unfortunately. But the lawyer appointed by her insurance company has arranged to get the Official Solicitor involved, so that should take pressure off us. We went to see her Thursday evening and I don't think she really understood who we were. She seems very confused, not surprisingly. She tries to start comments or thoughts and then does not seem to have any idea what she was trying to say - either that or she cannot find the words. It is not clear which. We took some objects and family photos for the Speech and Language Therapist, which we hope will help them with getting Sally back to being able to access her memories.

Monday 21.06.10

Sorry, it has been a long time since I managed to update the blog. So much has been happening.

We had a wonderful long weekend in Scotland with our friends Lesley and Ray and their absolutely gorgeous Collie pup called Millie. On the Saturday it was great weather and we went on the ferry to the Isle of Arran, giving Millie her first trip on a boat. At first she was terrified, but she soon became used to it and coming back was absolutely fine. We walked from the harbour at Brodick to Brodick Castle, past a small stream and along a glorious sandy beach - in hot sunshine! Unlike our 'Sam', Millie soon discovered the water on the way out, started to swim, and hardly stopped all the way! One very wet dog! Trouble was, no-one had shown her how to shake down to her tail, so wet dog she stayed until experiments got better on the way back!

The little we saw of the Isle of Arran was stunning, definitely somewhere to return to when energy levels are back up for long hiking mode. A new "discovery"for us, Donald had once been there when he was about 5 years old and his memories don't stretch back that far - yet!

On the Sunday, we went up to near Crieff and met up with some friends from Aberdeen, which was great. We had a wonderful lunch at the Barley Bree (a Robbie Burns term for a dram apparently). Unfortunately Linda was unable to join us, but she had returned to hospital in Aberdeen and is making excellent progress. We drank to her health anyway.

On the way home on Monday, we visited my cousin in hospital. Some progress physically but she is suffering from Post Traumatic Amnesia which apparently could last months. She doesn't really know who people are; she makes comments but they do not have much content; and I don't think she really knows what has gone on, nor where she is. It is very upsetting.

On Tuesday we had to focus on things to do with both Sally and completing the arrangements for Pat's funeral. And then it was the next treatment again on Wednesday, but only one more left to go, which feels great. I have not been anything like so bad this time. We started the injections on Thursday and finished them today, so hopefully that will keep my white cells up so I should not go down with an infection. I also have to take a course of anti-biotics starting on Wednesday, just in case.

I have had the flu type aches since Friday and am lacking in energy, but otherwise not too bad. I am going to have a blood test today to see if I am anaemic and may have to have a transfusion again if red cells have crashed too much. It feels like they may have done, just dragging myself about the house and sleeping each afternoon. I'll find out tomorrow morning anyway.

Hopefully with or without the transfusion, I am now on the road to recovery in this cycle and will be fully fit in time for the funeral on 30/6. Not exactly something positive to look forward to, but it is a marker and means we are on the way to dealing with all the matters that have to be attended to. Next and last treatment will be on 7/7 and then it is only upwards and onwards. We will be on holiday in Ireland during August and then I will be building up at work during September. It has been a long haul but we can see the end. I already have my hormone treatment to start taking after the chemotherapy is over. They will be long term, at least 5 years, and should help reduce the risk of recurrence.

Wednesday 08.06.10

Thank you for all the wonderful messages of support, all saying how sorry you are that this round has been so awful...

But if our lives were a novel, you would find the nightmare we've been through over the past few days difficult to believe! In fact, I think most people would put the book down and say those sort of coincidences do not happen in real life. Well peruse on 'Dear Reader' and get your head around this. Remember I was feeling really awful and had dreadful diarrhoea, which had been going on since Sunday.

Late on Thursday, Donald was informed by a junior doctor that Pat had widespread and inoperable cancer throughout her abdomen, but they had only just been able to diagnose this from the CAT scan. There was nothing that could be done except palliative care. They discussed her coming home to die, but we explained why that was not possible, so the hospital were to set in motion the process of involving MacMillan nurses and moving her to a hospice for a 'few weeks to a few months". He was asked to come back the next day to meet the senior doctor who would explain more.

Late that same night we had a phone call from the police in Suffolk to say my first cousin, for whom I am next-of-kin, had come off her motor bike and was being transferred to Addenbrookes hospital in Cambridge. We initially tried to call A&E but they'd never heard of her; called my brother to ask him to keep trying, but he got no useful information out of them either; and collapsed exhausted in bed, but neither of us got much sleep.

The next morning we started all the calls about cousin Sally, discovering that she was in the Neuro critical care unit at Addenbrookes and had been admitted straight there, not through A&E, cos it was a transfer from Ipswich hospital. She has a very serious head injury and was kept sedated until Monday and is now saying some words but is not conscious. At times they sound optimistic, then the tone changes, so it is difficult to know how it will progress. We went to see her this afternoon and it was very distressing.

Later the same day, still Friday, Donald and our elder daughter Sri, who managed to take the day off to come up to help, went into the hospital and spoke to the Senior doctor. Basically the message was the same but now they were saying a few days to a few weeks, but they would not be arranging the MacMillan nurses or the hospice until the next week. They had a good time with Pat, and Sri was able to give her a lot of pleasure and comfort, as Pat recognised she had come up from London especially. During this I sat in the Big C Cancer charity centre quietly and was even offered a free reflexology session, which was relaxing.

Less than 1.5 hours after they left, the hospital phoned to say that Pat had gone to sleep after they left and died in her sleep, so Donald and Sri went up to give last good-byes in a state of shock - and for Sri, the first time she had seen a dead body. Obviously it was a welcome release but we had not prepared for this so fast. I tried to help by phoning as many people as possible from home, but also fielding calls re Sally from friends, work colleages and relatives.

Phone calls went on til very late and I went to bed about 10:30 absolutely exhausted and still feeling rotten. I realised I was feeling hot, so we took my temperature, which was over 38. This is when they say you must call the hospital if you are on chemo, cos it could mean a serious infection, when your blood counts are low. We did so, had to dress and pack a bag and go to the hospital which is 16 miles away. I was admitted and Donald did not get home til 2:30 and surprise surprise could not sleep. He phoned my sister in NZ who was just flabbergasted. He then sat out in the garden watching the dawn and listening to the dawn chorus, which is wonderful here, and then managed about 2 hours sleep, ready for another exciting day in the Carmichael family saga.

Since then Donald has been trying to chase up and down to me and I've been very ill until yesterday evening. I even had to have 3 units of blood, cos my haemoglobin got so low. He has also been up and down to Cambridge and regularly speaking to the doctors there and in between grieving for Pat and starting to make arrangements. He is just beyond exhaustion now. I was able to come out this morning, because all the emergency is over and my blood counts are now very strong indeed - but still tired, not surprisingly.

We are going to get the absolute basics sorted tomorrow (register death, book funeral directors etc, start the process with the solicitor) and then we are going to Scotland for our long awaited long w/e with our friends, to collapse into their supporting arms! I don't think either of us have needed a break quite so much ever before. Everything else will have to wait for next week, but of course they zap me again next Wednesday...

This time they promise to give me the injections, which build up the white cells, much more quickly so hopefully, I will not crash this time.

I do hope that the next installment of this saga is much more mundane...

Tuesday 01.06.10

This cycle is certainly pretty rough and continues. I've had the aches and pains and no energy since Friday evening. I keep thinking it is improving and I'm through the worst and then it hits me again. So I just have to keep resting and drinking water and hoping for the turn around. Tomorrow I have to start taking precautionary anti-biotics because I will be at the lowest in terms of fighting any infections. A friend was supposed to come over to visit today, but in the end we put her off and she was unsure whether it would be a good idea. A pity because it would have been great to be cheered up, but she was recovering from a cold and I was not really feeling like being very sociable either!

Pat deteriorated even further over the long w/e and we managed to get the doctor to come out and see her this lunchtime - a real effort. However, once here, he did do a thorough check as far as I could see and he did find that the liquid build up has now spread to her lungs, which explains her breathlessness whenever she moves from chair to toilet, or back. Luckily this time, he took it seriously and she was taken into Norfolk & Norwich Hospital by ambulance this pm. Donald has gone up to visit her this evening, but I cannot as at my current level of vulnerability I shouldn't be anywhere near the hospital. Actually there is an enormous sense of relief. We are not having to take responsibility for making sure she drinks or eats. If they put her on a drip and then can work out what the problem is with her fluid retention, maybe they can improve the situation. If not, at least we should find out what we are dealing with and the likely prognosis / progress of her condition. We will just wait and see.

I'm sorry that this is sounding rather miserable - reflecting how I'm feeling I suppose. And I have to face going through it all twice more! But looking forward, we go to Scotland for a short break at the end of this cycle, which is really positive. It will be great to see friends we havn't seen for a while. Unfortunately one friend, Linda, is much more ill than me and is almost certainly not going to make our Sunday lunch that we've organised. She is determined that she will be well enough by then, but the rest of us have to be realistic. But I am hoping to be able to visit her in hospital in Glasgow. All will depend on my health and vulnerability of course, but I should have recovered by then. I will take advice before going, cos she is currently in the High Dependency Unit.