Helen Carmichael

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.

Saturday 29.05.10

Well, the new drug is certainly different. I am not suffering from sickness anymore, but now it feels like I have flu, although no temperature. I am aching all over most of the time and it started on the evening of day 2 of this treatment. Ibuprofen doesn't help very much, but probably just takes some of the edge off the aches.

They did warn us that this might be a likely side effect, but couldn't say when it would happen and how long it will last. We'll just have to hope that it does not go on too long. Poor Donald is having to administer to both me and Pat at times!

Otherwise we are managing well, with a quiet bank holiday weekend and no visitors. It was not going to be the best timing to invite people this weekend. We had visitors last w/e, before the latest treatment, which was great. Beautiful weather and we took a trip over to the coast. This w/e it is rainy and overcast, but suppposed to be improving tomorrow. Hopefully I'll be able to sit in the garden, covered up of course, if it is warm enough.

We are looking forward to our short trip to Scotland at the end of this cycle, and a break from the caring for Pat, when she goes into respite care for a week.

Thursday 27.05.10

Well, I went for the 4th treatment yesterday, the first with the new drug. I had been warned that my blood cell counts were low, from the test I had on Monday morning, so there had to be a re-test first. My counts were much higher, mainly because I had been taking steroids for the day before and that morning. Apparently this raises you blood cells quickly and significantly. However, the drug could not be ordered from pharmacy until the result came back and then almost everyone in pharmacy had apparently taken their lunch-break at the same time. When the drug arrived, half the nurses on the ward had gone to lunch so there was now a further delay. All in all, we were 5 hours at the hospital, for a treatment that was supposed to take 1 hour!

Unfortunately the steroids keep you awake, so my sleeping pattern has been haywire. In addition I have had significant nausea last night and today, so far, despite being on 3 different anti-sickness pills at the moment! Hopefully it will pass soon.

The stress of looking after mother-in-law is not helping either of us and it does not seem to get any better. She has been put on higher diuretic drugs now but this only started this morning, and we are seriously worried about the knock-on effects on her, given that she hardly drinks or eats anything all day. We can only get her to drink if we literally stand over and constantly prompt and this is impossible, especially with how I am feeling at the moment. Eating has just become a joke - she plays around with anything I give her and cannot be taking in more than about 3-500 calories each day. The supplement drinks help a bit, but then there is the battle to get her to drink them.

Still today I have reflexology and acupuncture and I will definitely feel better after that.

Thursday 20.05.10

On Sunday I started to feel a lot better, which was a relief. More energy and much less sickness.

I went down to London yesterday for 2 work meetings, which went well. Quite a lot to do, but I can do it from home. One of the meetings was at Newham's new fancy office building in Dock-lands, right opposite City airport. So Donald spent the time walking round the docks and reminiscing about when he first went there as a 17 year old in the merchant navy - in 1964!! All the way up in the car I was told all about how it had changed - what a surprise!

Today I went to the lymphodema clinic and to the Oncologist. I now am the proud owner of an arm cover which squeezes my arm all the time and should help with the lymphodema. Apparently my arm is not that bad, less than 20% swollen compared to the other arm, and she thinks it will disappear when I am off the chemotherapy - hopefully. The Oncologist is very pleased with me and how I have coped with the treatment so far, so that was very encouraging. He says the next drug may make me feel more achey in the joints but otherwise won't be that bad - and it is less of an irritant to the blood vessels, so the phlebitis should improve. He started talking about when it is all over and checking up with me in September, making sure I start straight away on the ongoing hormone treatment (aromatase inhibitors) once I have had the last treatment. So it began to feel like we can see the end of all of this - which lifted the spirits.

We have booked Pat into a BUPA home near Thetford for when we go for our short visit to Scotland in mid-June, and she seems very pleased. It is a lovely spot in a country park so beautiful gardens all around. The place itself was very friendly and we think will work well. We will try it out and hopefully then can use it for our summer holiday. It feels like we can start to plan that now, for August, but apparently I should not be in hot sun for about 6 months, so I guess it won't be the south of France this year.

Next treatment is on Wednesday with the new drug. Will keep you all posted about how that goes, but all in all, things are looking up at the moment.

Thursday 13.05.10

Well this week has continued to be tough. Tuesday afternoon and evening particularly. I phoned the oncologist yesterday and I've had to take a blood test to check that my blood cell counts aren't too bad, but won't know if there is a problem until tomorrow.

I don't really know why it is so much worse this time as I am still on the first set of chemicals, but I can only assume it is the cumulative effect as I said before. It is quite a bit better today which is a relief. Unfortunately it has meant my check-up with the oncologist has had to be delayed until next week. He does not want me coming up to the hospital and sitting with all the other patients waiting to have their treatments, if there is a risk I've had or have an infection. I guess it makes sense.

The plumbers are here as I write, fixing the radiator! Carers have started morning and evening to help "re-enable" Pat so she can get herself up, washed and dressed and vica versa. I worry that she just sees this as someone to do everything for her, but they are supposed to be skilled at getting her to do things herself, so will wait and see. Generally things are getting slowly better on that front.

I am hoping to have lunch with a friend today which is something good to look forward to.

Monday 10.05.10

Day 6 into cycle 3 and it is much more tough this time. The anti-sickness pills don't seem to be working quite so well and I am much more tired. On top of that I have developed phlebitis in the arm that I have the chemotherapy, in as well as continuing to have the lymphodema in my other arm. Neither arm working properly!

Pat, the mother-in-law, is not recovering her capacity well from after the fall and we are having to be full time carers. We have been assessed by NHS and Social Services over and over and even though Pat wants to pay for anything that needs to be paid for, it still seems to take ages for things to happen. It is now 2 weeks since the fall but other some equipment and all these assessments, we don't actually have any care. It is supposed to start tomorrow evening - I wait with baited breath! They are supposed to come in morning and evening to get her up, washed, dressed etc and to "re-enable" her - ie teach her to become more independent again. I do not hold out much hope...

It has made me realise how much easier it is to work with the youngest, even those with significant special needs. At least you see that there is some progress to highlight. Here it just seems to be deterioration.

This morning she capped it all by pulling at the radiator in the shower room, rather than the grab handle that Donald had carefully put up. She pulled it off the wall and then we had hot water everywhere, a big leak, etc etc. Luckily neither she nor I were hurt, and Donald has got the plumbers organised so it is likely to be fixed by Wednesday, even if she has to pay through the nose!!

Sorry this is a long moan - I guess there had to be difficult times, and this is certainly one of them.

Saturday 01.05.10

Well it has been an extremely busy and eventful week. We were out to an appointment on Tuesday afternoon and came back to find Pat (mother-in-law) had fallen and had managed to get herself jammed between the toilet and the wash hand basin in her downstairs cloakroom. She could have been there for as long as an hour but it is difficult to tell as she has no memory of the fall. It appears that her blood pressure has dropped very low and she has been taken off the obviously totally unnecessary high blood pressure pills, that she was taking daily.

She was already suffering from swollen legs and the district nurses were bandaging them daily. We have had the doctors out a couple of times and the nurses are visiting regularly. But it has meant we have had to take on full carer roles, when she was almost fully independent before. She is improving but has lost a lot of confidence and strength in her arms and hands.

We still managed to go down to London on Wednesday and Thursday for Viv's retiral (which was lovely) and for meetings, but I cancelled Friday's meetings. We drove down both days rather than staying down, because Pat could not be left on her own at night and needed to be fed, helped to bed, etc.

Unfortunately it did tire me out a lot and yesterday I felt quite low and exhausted. But I had a better nights sleep last night and am much better today. I was also given a laugh by a letter and present that arrived from my friend Linda, in Aberdeen. When we worked together there, Linda and Thelma, with some help from Brian (aka the jingly Jani - which I won't explain!), used to do wonderful skits whenever we were having leaving or retirement "do's". These were in the local dialect, the Doric, and at first I had to have them translated for me! Linda and Thelma were Jessie and Mina, who were the cleaners who did the offices of the "Psychos" and who chatted about them in the evenings when they were doing the cleaning. It was great fun and I have a wonderful video of the evening of my leaving do, which included contributions from Jessie and Mina.

Anyway, Linda has sent me a wonderful head adornment, which includes a hat and hair - as she could see I needed it! She says in the Doric: "Ye hiv tae hae a laugh tho", div ye?!"

So in this spirit, I'm going to let you all have a laugh:

I've decided that it celebrates my Lallans routes! You may not all know that my maternal grandfather was from Dumfriesshire. Robbie Burns was partly from Aberdeenshire and partly from Dumfriesshire and wrote in both the Doric and Lallans. I don't suppose it preserves my dignity much, but hopefully will make you all smile.

We are having a relaxing w/e with Sri and Duncan up to visit. We visited the flat they are buying in Tuffnell Park / Holloway area, on Thursday before we left. It is lovely and we think a good buy. It even has a garden and sit out area, and lots of space in the flat.

The next treatment is on Wednesday pm - this will be the third so I will be half-way through.

Monday 26.04.10

Still progressing well with few problems with side effects, which is excellent. The annoying thing at the moment thought, is that my affected arm seems to have developed lymphodeoma again. This is where it swells up and is quite painful and is caused by the lymph fluid not draining away properly. It is normal immediately after the operation, but they do warn that it sometimes comes back at a later date. However, it is not connected with the chemo.

I've phoned the breast care nurses, who are referring me to physio for massage and possibly a sleeve that squeezes your arm. I do hope that I do not have to have the latter - it will be horribly hot and annoying if we do get a nice summer.

I went down for a meeting in London on Friday and it went quite well. I left early and was pretty tired afterwards, but fine by the next day. This week I go down again for 3 days and quite a few meetings, so will have to see how that goes.

Wednesday 21.04.10

Progress continues to be good. Every now and then I have a low energy period and I get quite cold sometimes especially in the evenings, but wrapping up solves the problem. So nothing serious at all. I think the lack of hair on my head contributes to the cold - certainly does at night, but wearing a hat or scarf in bed is too itchy.

I'm continuing with some work from home and will be going to a meeting in London on Friday and then a series of meetings at the end of next week.

Weather here is beautiful but a cold wind so sitting out in the garden is not comfortable unfortunately. We have just received the 2 new loungers that we ordered a couple of weeks ago, so I am desperate to be able to use them, but not today!