You might have noticed that things have gone very quiet in this corner of the world. We haven’t given up or sold Heidi … it’s just that other things have got in the way. I’ve been pondering whether to write because every now and then I take a look at the stats and I can see people popping in clearly wondering if there has been another post – so I decided to get the typing fingers out.
Not great news
I had my usual CT scan at the end of October last year. Since my radical nephrectomy (removal of left kidney) in 2020 there have been regular scans to check for any sign of a return of the cancer that had been described to me as ‘fairly aggressive’. I had been feeling fit and well, playing loads of golf and walking for miles. A three-month tour of Europe in spring and early summer had been a delight and there were no symptoms to suggest that anything was amiss. We were feeling relaxed and beginning to believe that the surgery had successfully removed all the cancer.
Two weeks after the scan I was called by the nurse specialist to tell me, very gently, that there were suspicious nodules on my lungs. “They are very small’, she said kindly. “The multidisciplinary team of specialists are looking at the scans and will be in touch.”
And so it was that we stepped on to the roller coaster that is life with cancer.
I am currently on Immunotherapy, to boost the immune system and encourage it to fight the cancer, and daily targeted cancer drugs in tablet form. This treatment is pretty harsh on the body but after three months I was told that the most worrying nodule on my lung had reduced by two thirds and the others were barely visible. At this point I realised that some nasty side effects are worth the outcome and stopped whimpering … most of the time.
All this had me considering the possibility of keeping a blog of the treatment with all its gory details. I was persuaded by several people who suggested it might be helpful to someone else going through something similar. So I have begun to write, but not published it yet. If you are interested in reading it I’ll put a link to it on here when it’s ready to go.
I have the best possible care, not least from Shirley who manages to make sure I’ve taken all the necessary medication, encourages me when the going gets tough and persuades me to ask for assistance from the specialist team when necessary. On top of all that she makes me laugh daily – I couldn’t ask for more.
The NHS is getting a lot of bad press at the moment but I can only speak from my own experience. All the advice, care and kindness I’ve received has been outstanding.
Poppy finds her calling
If you’ve followed this blog you will know that we used to have two dogs, a miniature poodle called Boo and Poppy the cockapoo. Sadly, Boo died over a year ago and Poppy had to adjust to being the only dog. In previous years, when a family dog has died, we’ve got another one quite quickly but this time we decided against it. There is enough caring required in this household without managing the needs of a puppy as well. Incidentally, if you’re considering getting one – and you might well after you read the next bit – be aware that for the first two years of Poppy’s life we kept saying “What the hell have we done?”
Once Boo was no longer with us and Poppy had got over grieving for him, we got a wonderful surprise. She has far more character and insight than we had ever realised. She was always the underdog and allowed Boo to rule the roost. Now she has become fully attached to us and amazingly in tune with everything that is expected of her with an added flash of surprising sensitivity. Since my diagnosis she has taken extra care of me, cuddling up, sleeping as close to the bed as possible and picking up any sign of sadness. On the day after the diagnosis, I took her out for a walk as usual and at the same time practiced some mindfulness to try to stay calm. I was doing really well, taking note of the sound of the birds and the beauty of the trees when I was suddenly overcome with a huge attack of the ‘what ifs’. I felt frozen with fear at the thought of leaving this life and all the joy it holds and especially the people I love. Poppy was off her lead and walking in front when I noticed her stop in her tracks. She swung around, gazed at me with her big brown eyes and hurried back to me. She touched my knee with her nose and began to walk close beside me, looking up every now and again as if to check I was okay. I couldn’t help smiling down at her and after another couple of minutes she returned to walking a few paces in front as though she was keeping me safe. Occasionally, when Shirley and I sit close together on the sofa and hold hands while we talk through our concerns and anxieties, Poppy will jump up and lie between us, snuggling in and looking up from one to the other. She is a true therapy dog and she consistently behaves herself when out walking, returning immediately when called. A dog trainer we had when she was a pup told us that what she needed was a job. She’s got one now and she does it beautifully.
Heidi of high maintenance fame
Heidi has had some electrical work including more lighting and additional power points. We had her MOT done in a garage in Tranent, about forty miles away, that specialises in large vehicles as she needed some welding on her underneath parts. We stayed the night before in one of the many pubs that offers overnight parking in exchange for eating a meal in the pub. It was surprisingly pleasant with the manager on duty inviting us back any time and taking a genuine interest in our travels. The parking was flat and we were one of five motorhomes enjoying their hospitality.
The garage was the old fashioned type with oily blokes climbing under all kinds of vehicles. Our mechanic explained what he was going to do without talking down to us and we felt happy to have found somewhere that has all the gear for a big beast and doesn’t make rude comments about her age.
Home again we set about upgrading the bathroom that had begun to look tired by painting the no longer white plastic with Plasticote and changing the vinyl background paper. Taking the circular shower doors off, we now realise with hindsight, should have been recorded on video – it was one of those events that could possibly make it on to that well known programme that makes fun of people being inept. There would have been a lot of bleeps covering the numerous four letter words when the nuts on the back of the hanging rails kept falling off and rolling away, often dangerously close to the drain.
One issue we have had with driving Heidi is the handbrake which is tucked tightly into the right hand side of the driving seat and is a long reach down. People like us of short stature with shorter than average arms find reaching the handbrake difficult. So we decided to buy a handbrake extender. We had to wait two months to receive this unwieldy item and I consulted Youtube to find another motorhomer who had bravely videoed fitting it. The first problem occurred when I got it ready to fit, and realised that our type of motorhome doesn’t have a door on the driver’s side. Frankly this is something I should have thought of before ordering it. We have a door on the passenger side and one into the main body of the van. No driver’s door means that the small space between the seat and the wheel arch is very tight. I tried to use the allen key supplied but it was impossible to get it into the end of the bolt to fit it. Forward 24 hours and we had bought allen keys for tight spaces and tried again. I was on my hand and knees with my head under the steering wheel and Shirley was pointing a flash light down into the murky depths of one of those vehicle spaces that have never seen the light of day. The new allen key helped but it didn’t stop those nuts falling off repeatedly. Eventually we came up with the idea of sticking sellotape over the nuts to hold them in place and starting again. By now some of the skin on my knuckles had been worn off and I looked as though I had punched a wall in frustration. At last the extension was fitted and we read the instructions on how to use it. Here is a direct quote from the instructions “The use of the handbrake when driving is self explanatory and will soon be found easy after a short trial. The operating action is of the type known in the vintage motoring era as a “Fly Off handbrake” Because of this quick release nature alway leave the vehicle in gear when parked” Quick release! We couldn’t get the damned thing off. We tried everything. The man in the video had just smacked the handle – this did nothing. Our neighbour came along and managed to take it off but when we tried again after he left we only succeeded in getting the handbrake on more and more tightly. We had no choice but to remove the extension again so that we could drive her. We are currently waiting for a friend who is a patient and very kind mechanic to come and try to find out what went wrong.
Small Trips for now
Since beginning this treatment with all its challenges, some of which involve staying close to the loo, we haven’t had any big adventures in the motorhome. We have, however, had a few short trips to nearby places including Northumberland, York because it’s fast becoming one of our favourites and Roslin near Edinburgh to catch up with family and friends. It was good to enjoy a bit of city life and a jaunt around Ikea.
I have been told that leaving the UK while on treatment is strongly discouraged so we are having to change our plans to include UK trips. These must be fitted between the dates of treatments at the Macmillan Centre. Fortunately treatments have been recently changed to every six weeks so it shouldn’t be too challenging. Being equipped with plenty of toilet fluid and numerous loo rolls will also help. I am now even more enamoured with this “take your own loo” form of travel. More later on whether we could learn to use the handbrake and other such nonsense.