Holidays, More Tests and more Holidays August 2011

Following this visit for assessment, we were left with important decisions to think about: was this definitely the way forward for me? If so, how were we going to manage the waiting period?

Gardens at Sharrow Bay, Ullswater

Rob had now got two weeks annual leave from work and Sarah and Rose were going off on holiday to Greece, so as I was feeling quite well and side effects of the drugs improved by my recent additions to medication, we decided that it would be good to escape up to our cottage in the Lake District again for a week or so. We had to give the transplant team these dates as they wanted to make arrangements for me to see the surgeon soon.

 Before we went I decided it would be easier to get my mammogram and smear test over and done with in one go and quickly and avoid getting into NHS long waiting lists for the mammogram. I really wanted a bit of control now where I could at last and I didn't want to be waiting another three or four months before I could get back to the transplant team and continue the discussions on my suitability  for a transplant. I therefore booked myself into the Bupa Well Woman clinic, where they undertake these two procedures for you as part of the process, as well as giving advice on breast examination and lifestyle. I had always intended to do this last year, when I cut my hours to part time work and felt I needed to start the process of getting fitter. I had been stopped in my tracks on this front, with the shock of my unexpected illness, and although I didn't really want to find out I had cancer as well, that would definitely be a death sentence for me in my position, chemotherapy or no chemotherapy, it was something that I thought I needed to do. So in a strange way, I was glad to get round to it, although I had had my fill of hospitals in the last twelve months. The appointment was booked for two weeks time and off we went to the Lake District.

Gardens at Sharrow Bay

We had a nice time here, visiting some of our favourite places, visiting new places and me getting plenty of rest and relaxation around my illness. Rob surprised me and booked us into a beautiful hotel on Lake Ullswater for an overnight stay, he thought I was doing well enough again to manage this. The weather was atrocious on the day we went and it was quite hairy negotiating the Kirkstone Pass to get there. The hotel was beautiful and the bedroom had the most fantastic view of the Lake and so did our table at dinner. I can clearly remember the waiter apologising for the view being spoiled by the torrential, driving rain and we just smiled and said it was still nice. In my mind it was the most beautiful view ever, I felt lucky I was sitting there looking at it and felt grateful I could still enjoy all of this, the ambiance of the evening; the Michelin starred meal; the spectacular view, despite the weather; the beautiful, exquisite environment of the hotel and its grounds and most of all my caring, doting husband. I would have liked to turn round to the waiter and tell him he really has nothing to apologise for!

When you are sick with an invisible illness, there are often moments like this, people don't know there is anything wrong; what you have been through; what you are going through and what you will need to go through next. You find yourself 'acting' a lot of the time, trying to 'act' like you are 'normal' having a 'normal' life.  Whatever is normal? I feel a long way from it and keep trying my best to get back there.    

View from Sharrow Bay accross Ullswater

While we are away we heard the devastating news that my friend, who had been moved to the hospice, had passed away. It truly saddened us and saddened the PH community too. She had done so much to raise money for PH awareness and research and it was a shock to lose her. She had been so brave. This terrible news I think and the rapid loss of my other friend in February and the death of the lady who I met on my first visit to Papworth, probably helped sway us even more in favour of transplantation. The outlook that doctors had spoke of, became a grim reality. These lovely ladies who I had had the pleasure of meeting had lost their lives to PH, they had all recently been put on Epopostrenol like me. I felt an urgent need to be getting that door to transplant opened as quickly as possible. We both did, Rob even more so I think.    

When we got back home, I went off to yet another hospital to have my smear and mammogram, these are always a bit stressful and daunting for a woman in ordinary circumstances, but I had extra burdens and I did feel apprehensive. The bottom line was, if they find cancer I would not have the physical strength with my weak heart and lungs to get through the treatment and the door to transplantation would be closed forever. It was a bit strange to going to a well woman clinic when you know you are already seriously ill. I am still a woman though; I'm still susceptible to all the health risks other women face; I still have to face the run up to the menopause; I still have elderly parents to worry over; I still have my lovely children to mother; I still have to go through all the ups and downs of real life just like well people do; life does not stop because you are ill.

It is a bit traumatic having these tests, having to explain my situation time and time again to the doctors and nurses and radiographers, especially when I am sitting in a well woman clinic! We had to be there early - well what is early for me now, I used to be an early bird before all of this - I felt very unwell. So a huge relief when its over; two weeks later and an even huger relief when the tests are negative. Now I'm really getting on track towards going on the transplant list.

We informed the transplant team of the test results and then went back to the Lake District for the August bank holiday. Another little break and escape away in our favourite place. Rob had decided, after much turmoil and pondering and with transplant becoming more of a reality that he was going to leave work for a while, so that we can spend some time together while I am well, we really do not know how long this stable period will last. He wanted to be with me so he can care for me both pre and post transplant and do so without the pressures and worries of work.

Of course, there is the small matter of making ends meet while he does this and his employers were helpful in this respect, giving him redundancy, which would help a long way to getting us through the next two years, when Rob could then draw an early pension if needed.

View to Fellfoot Park from Lakeside

Again, I know we are lucky and blessed that we are able to do this and for a lot of people in my position, money would be a massive issue and a huge stress on top of all the other horrors that they have to face and go through.

I had had to give up my work as though it had been the flick of a switch and I had worked so hard in the last ten years to achieve all I had in quick time. I had done a part time degree in three years, the time usually needed to undertake a full time degree, I had successfully completed my teacher training and my teaching induction year and I had spent two further years back at University yet again to achieve an Advanced Diploma in Education. All this while working part time or full time and trying to be a good mother and wife. I was in my seventh year of teaching and really hoping for a management role soon. Of course I would not have achieved anything if it hadn't have been for the loving support of my husband and girls. Rob was also giving up probably one of the best career opportunities of his working life and a chance to really make us financially secure for our retirement that had been being planned for ten years time!

So a very big deal; but nothing in the scheme of things.    

Still we were in the Lake District now, enjoying a lull in our world of sickness and hospital, escaping for a while. Our cottage has always been a retreat: when we worked, a retreat from deadlines and work pressures; now a retreat from hospital, tests, waiting for appointments and follow up letters and worst of all waiting for the next drama that could happen at any time with this life threatening illness.  

Waterhead, Ambleside

We were back in a cosy bubble for a few days, resting, recuperating, important decisions made and on holiday indefinitely now. Rob did not need to go back to work.