Helen Carmichael

Tuesday 31.08.10

This is going to be the last entry in this blog - an important moment because it represents the move to being recovered.

We had a wonderful holiday in Ireland - did just what "it says on the tin", ie was not very hot or sunny, although there were the odd occasions! It did rain, but not all the time and we managed to avoid the worst. We each took waterproof trousers to pull on but never had to use them.

The first few days when we were staying with Donald's brother and his wife, I was feeling pretty awful. I now think it was a combination of recovering from the chemo and the initial side-effects of the new hormone treatment I have started. But when we arrived at the first cottage, it started to clear, especially the feeling of nausea and heartburn. I still had little energy and my fingernails were very sore but things were improving.

On the first day in the west, I managed to walk about 2 miles/3 km, and it was an enormous struggle. By the end of the trip, I had done 7.5 miles/ 12 km on the flat (alongside the Shannon) and 6 miles/ 9 km in the hills, with a 230 metre rise during the walk. Both exhausted me but it was a big improvement over 2 weeks. Now we will work on it over the autumn and winter so that I can consistently do longer and faster. That is the plan plus losing some weight that the steroids have placed upon me - not that I was silf like before this all happened!

It was a dreadful shock to hear the first week that my close friend and colleague in Aberdeen, Linda MacHardy, had died after a long and very complex illness. It was also awful that I was unable to go the funeral during the second week - just too complicated from the west of Ireland. We will be in Aberdeen in mid September after we have buried Pat's ashes. We will have a meal with friends and Linda's husband and remember Linda, who was a great character, brilliantly intelligent and a very strong and sensitive psychologist.

Back to me and the symptoms: I still have very little hair and my fingernails and toenails are still very peculiar, but you can see that the strange bits are beginning to grow out. I've had a lot of trouble with water retention in my legs and ankles but that is now beginning to wear off. Other than these symptoms, I'me beginning to become reasonably normal!

Next week I am officially back at work, but phasing in on a part-time basis. So 2 days next week (8th and 9th) and 2 days the following week and then we review. But it feels good to be at this stage, although a little anxiety provoking. I don't know how my energy levels will hold up.

So this is the end of Helen's blog through cancer. I believe and hope that it will not come back and we, plus the hospital, will be keeping a watchful eye on a regular basis. I still have to plan the breast reconstruction and expect it to happen sometime next year, but that will apparently only take 4 weeks of recovery - nothing compared to the last 9 months.

Thank you for following this blog through my treatments. It certainly has helped that Donald and I have not had to explain all steps of the process every time that someone has called. Hopefully it has helped friends, colleagues and relatives keep up to date and also to learn a little about what you have to go through when this sort of thing happens. I sincerely hope that it never happens to any of you - or to me any further.

Signing off, but do keep in touch by email, phone etc, with best wishes, Helen and Donald.

Monday 02.08.10

This is the last entry before our holiday. We go down to London tomorrow because I have some work meetings and then we will be on holiday travelling rather indirectly to Ireland, from Wednesday.

I have not made as rapid progress as I would have liked. Energy levels are still low and my legs just seem to give out on me if I do too much. Most other side effects are disappearing, but my finger nails are horrible. On a couple of them I seem to be losing the nail altogether and they are quite painful. However, you can see that normal nail is growing up from the bottom on most of them so this is a good sign.I have started my hormone treatment and so far so good.

I am hoping to be able to build up energy during the holiday and to start doing proper country walks. I've bought some waterproof trousers, which will probably be essential in Ireland! Relaxation will be the main thing anyway.

I will probably be able to blog again sometime late August. We are back late on 23/8 and will then have cousins from Canda and then my sister and hubbie from New Zealand - really looking forward to both visits.

Monday 26.07.10

I've not blogged for a while and seem to have worried some people - sorry! I went down to London last Tuesday for a staff lunch at my work (which was very nice) and came back via my cousin at Addenbrookes Hospital in Cambridge. It was a very hot and muggy day and I don't know if I did too much (although I didn't do that much - Donald was chauffeur again), but I felt absolutely dreadful afterwards. My legs were like lead again and no energy whatsoever. Went back to taking long sleeps in the afternoons. By Thursday I decided with the hospital to have my blood checked again, but my haemoglobin levels were OK, so that wasn't the reason.

Gradually I've pulled myself out of it and was better over the weekend, but still not right. On Sunday I went for a very short walk in the woods. It was great to be out in the fresh air and actually walking again, but I could only manage a short one. Today I am still tired and achey, but better than I was last week. I guess it is just going to be a gradual process and I cannot make it happen faster than my body will allow. My Oncology Nurse Specialist keeps telling me that I've done really well throughout the whole treatment process, despite the hiccups like being rushed into hospitalat one point, and that I just have to accept that the cumulative effect of it all will take some time to recover from. Frustrating though!

The strange yellowing of my fingernails is gradually beginning to grow out, but it will be a good few weeks before they look more normal. The blotchiness on my neck area is fading, so that it good. At the moment I am off all medication, which feels good - at times it has been like swallowing a medicine chest each morning. But on 1st August I start the ongoing hormone treatment, which should help keep the risks of recurrence at bay. I stay on this for at least 5 years and also have to take calcium at the same time, because of the increased risk of osteoporosis.

Otherwise things are fine and we are looking forward to going on our hols next week. We are visiting people on the way to Holyhead, so will leave here early on the morning of 3/8 although our ferry is not until the afternoon of 5/8. So from 3/8 there will be no more updates for at least 3 weeks. I will try to do one more before we go, though.

Saturday 17.07.10

I seem to be trying to make sure I've completed the full range of side effects before I finish! Still feeling pretty low in energy with heavy leaden legs. My neck area has broken out in horrible red blotching and is itchy and sore. My finger nails make me look like I am a 50-60 a day smoker! And now all my toe nails have joined in the fun. A couple of days ago a patch on one of my thumb nails was distinctly black, but is now fading to purple - bleeding under the nail I assume.

The fuzz on my head keeps growing though and there are a few more hairs on the eyebrow line, which helps when trying to work out where to paint them on! If I don't put them on Donald can't work out my facial expressions sometimes, which is quite interesting. I hadn't realised that one's eyebrows, presumably moving up or down, contributed quite so much to how we interpet faces. Still no eyelashes back though - I hope they will return. My eyes are very watery and encrusted each morning because of having no lashes.

Anyway I'm now at day 11 of this last cycle so it must start to be uphill soon. I'm hoping to be well enough to go down to London for the day next week for lunch with my team but won't make a decision til Monday. The week after we are definitely going down for a couple of days for meetings and to take Sri and Duncan some furniture for their new flat that they are moving into that week. And the week after that we are off on holiday, which is feeling great.

Sunday 11.07.10

Very achey and lethargic over the weekend. I don't seem to do anything except move from a chair to a bed and then back again! I suppose it is to be expected and at least I am not going downhill into infection as far as I can tell. Donald has been giving me my daily injections and on Wednesday I start antiobiotics for a week, just to be sure I don't go down with any infection. I do not want to end up being taken back into hospital....

I guess that the weather hasn't helped much either as it has been very hot and muggy in the garden. I've been sitting in the shade, with suntan cream on and so far don't seem to be developing a rash or reaction, so fingers crossed, etc.

It feels a long drag but it won't really be long until I'm feeling a lot better - or so I keep trying to persuade myself. While you are down in it, it feels difficult to believe that the body will recover and energy levels will rise. But they have before, and this time I don't have to face the onslaught again.

Thursday 08.07.10

The final treatment was yesterday!! It seems ages waiting to say that. We were at the hospital for a long time, because I had to see the doctor before lunch, to make sure that I was OK to go ahead. We were then called in half an hour early for the actual treatment, which was unusual, but I then waited from about 1:40pm when they fitted the cannula, to about 3:10 for Pharmacy to get round to actually delivering the medication. It was just before 5 before we got out of there.

The doctor told me that I should feel about 90% of normal by early August, when we are going on holiday to Ireland, so I should be able to start building up my capacity for country walks again. However, she did say that it could take up to a year to feel 100% of my normal self, so I shall have to take that into account when building up at work.

I've had to go for emergency dental treatment this morning, because one of my top molars has disintegrated, don't know how much to do with my chemotherapy. I bit on a skate bone on Monday night, which is what was the immediate cause. He has done an emergency crown that will last a few months, and I'll have to go back for proper treatment in September when I am through all of this.

Side effects are not too bad yet. I felt rather sick last night, but medication helped. I'm on steroids from day before treatment to today and this stops you sleeping properly, so I didn't get much last night. But slept for about 2 hours this afternoon. In addition, the nerves in my lower half are very jumpy. It feels a bit like pins and needles, but a bit more painful. My fingernails and big toenails are still very yellow with blood collecting under them, but at the moment the soreness has worn off. The doctor explained that the nails lift up a bit, because the nail tips are not growing properly, and this is what causes both the yellowness and the bruising. She warned that it will get worse during this cycle and will take a few months to recover.

On the positive side, I am developing a fuzz on my head as this latter drug does not seem to have as bad effect on hair loss as the previous cocktail of drugs. However, I do have to paint on my eyebrows and hardly have any eyelashes, not even enough to put mascara on!

Will keep updating you on progress, depending on how I feel, but the positive thing is that this is it. No more chemotherapy treatment and by beginning of August I'll be taking the hormone treatment (aromatase inhibitor - explained before), which should keep threat of a recurrence at bay. It really feels good to be on the road to proper recovery and only a week to 10 days of side-effects to deal with (hopefully).

Monday 05.07.10

We have been down in London for the weekend, seeing my sister and family and also Sri and Sheena. Other than my finger nails, I have been feeling good this weekend - just in time for them to blast me for the last time!

We went to the British Museum on Saturday with the younger generation (Lola and her half-brother, Harvey) and had a great time. Lola and Harvey created a photograph of themselves superimposed on an object in the museum and both designed a coin each. Donald and I went to the Bronzes of Ife exhibition. This was a culture that flourished in Nigeria from the 12th to the 16th century and their bronze and copper statues are incredibly beautiful and intricate. I had visited Ife when I was living in Ibadan (nearby) in Nigeria in my teens, so I found it particularly interesting. Unfortunately the exhibition finished yesterday so I can't encourage any of you to go.

On Sunday we all met up at a pub near Hampstead Heath and had an excellent but rather expensive meal. Sri and Sheena joined us, but as ever Duncan got caught up in having to write up about the American spy ring, so was only able to come for a few minutes to pick Sri up. We went to the Heath and Lola rode around on her brand new bike that Donald and I, plus my 2 other sibs and families, had given her for her birthday - 7 next weekend. She did very well indeed and it is indeed rather an amazing bike, although chosen by her Dad, not us. Black, white and purple with gears, good suspension, etc etc. The one thing it was not allowed to be was pink - apparently she is now far too grown up for pink. Finding a non- pink girl's bike is actually more difficult than you think!

The only disappointment over the weekend was the tennis - but then we hadn't expected Andy Murray to get through to the final. But both finals being such walk-overs was a great pity.

For a little while the hospital seemed to think they would have to delay my last treatment because of staffing difficulties, but luckily I've heard today that it will be on Wednesday as originally scheduled. We didn't want it delayed as it means delaying full recovery as well. So it is blood test tomorrow and then treatment the next day and I have to take steroids for 3 days, starting tomorrow. BUT it is the last time.... This time in a month we will be going on holiday, which feels great. Really can see the end now, however bad it gets in the meantime.

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.