Just a quick update.

I just wanted to give you a quick summary on the weeks events but will try to write more in a few days time.

It’s all happening here!  Firstly I found out that our second grandchild will be a little girl which is great news. She isn’t due to come and meet us all until around February 4th  but we are very excited to see her.

Wednesday and Thursday were pretty tough going. On Wednesday we received some sad news about a fellow myeloma friend. We were both also very anxious about the hospital appointment on Thursday. And Thursday turned out to be a very long day indeed, with the clinic running almost three hours behind and us getting stuck in rush hour so the usual home journey took a couple of hours longer than usual. The news at the hospital however, was fairly good, as my consultant gave us hope that there were still some treatments that we haven’t even yet tried. My usual blood counts were also pretty normal but I wont get to know about how my stem cell transplant has worked until next month, when I will have more tests and a bone biopsy. The best news however is that we got the go ahead to go on holiday to France before my next appointment in October. So we are excited to get our motorhome prepared.

We had a really enjoyable day on Friday at the Shuttleworth Steam and Country fair and Colin got to have a ride on an enormous traction engine whilst I relaxed and chatted to an old friend who I was so happy to hear had the all clear following her treatment for cancer. It was such a good day out, we hoped to return on Saturday evening and camp there but I just felt too exhausted from all the excitement.

Now there is lots of organising to do with some exciting things happening next week, so I must get on. Not that I have hardly any energy still to do much, but I get a little more strength back each day.

Enjoy your Sunday

Deborah xxxx

Day 55 and the journey continues.

Today I was looking back at some old blog posts from this time last year, when we were enjoying some French sunshine. It did bring back some lovely memories and showed both Colin and I really enjoying and living life to the full. That seems to be something that has been rather lacking over the last six months as I have allowed myeloma to get the better of me. I am not going to beat myself up about it though as when one is physically so poorly it really does take a big toll on your mental wellbeing. Along with the physical ill health comes plenty of anxiety which in turn does no good for the healing process. As those of you who know me well will appreciate, I am probably one of the most optimistic dreamers around, always playing the glad game made so famous in the film Pollyanna. In fact only my lovely daughter Pollyanna is better at playing the game. I have however, had to learn a new skill recently and that is living in the moment, the here and now, instead of drifting off into some sort of fantasy land and dreaming up all sorts of crazy plans. I am not knocking that though as it has worked very well for me in the past so I am not about to give up on visualising altogether. I am just learning to appreciate the moment more. I have become some what nervous about planning too far ahead though for the fear of being let down again, but I think as my health continues to improve this may become less of a problem.

We have been out in the motorhome a few times over the last few days. Colin wanted to visit Houghton Mill in Cambridgeshire on Monday, so we made good use of our National Trust membership cards. I didn’t go in as I wouldn’t have managed any further than the ground floor but I was quite happy relaxing in the motorhome. Yesterday we popped over to Dunelm to buy a little lap table and we stopped off at the BMW garage to try out sitting in one of their new cars. Although our little car has not let us down over the last few years of ownership, it has never been very comfortable. I have just applied for the higher rate of disability allowance which if I am successful, will allow us to rent a car through the mobility scheme, so any tips on the most comfortable cars would be much appreciated.

Tomorrow I am off to the Cancer Hair Care charity to get some tips on tying my scarves and a bit of much appreciated pampering. I am still very hairless with no sign yet of any new growth, so not sure how long that will take to come back. Being bald is very liberating and I don’t mind it too much, especially if I feel strong enough to put on a bit of make up, but I don’t like to frighten other people too much and I do get some funny looks if I go out without a hat or scarf. Maybe I need to find out my old wig again. I also hope to see little Elliot sometime tomorrow. Then if the weather is good on Friday and over the weekend we may take another trip out in the motorhome with our good friends and fellow motorhomer’s.

My strength is coming back but it’s an extremely slow process. I have just realised the time and I am still lying here in bed! I have however managed a bath which does seem to take an enormous amount of energy nowadays.

Well today I am appreciating being at home. I am not in hospital, I have no temperature or infections and even after a full English breakfast I have no feelings of nausea, how good is that!

Onwards and upwards my friends. I feel our arms are metaphorically linked and you are holding me up and guiding me along. Your are my strength.

With much love and gratitude.

Deborah x

Back in the Cotton Rooms.

After a short spell at home we are are back here again. I shouldn’t complain as we do have a lovely room but it’s just not home. The blood test they did yesterday showed that I was already ‘flat neutropenic’ meaning my white blood count is very low or at zero. During this time as I have no defence mechanisms  I am likely to pick up infections. This is why I am here being closely monitored. As soon as my temperature rises or there are any other signs of an infection I will be transferred to a hospital bed.
I was really quite poorly last week with horrible abdominal pains. Betty’s marmalade on toast with Cheshire cheese cheered me up as did these lovely flowers from my brother.
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Although I didn’t get out of bed for three days, when I did sit out in the garden it was lovely to see how the place had changed. I just wish I had the energy to do some weeding, although that is not encouraged when your immune system is low because of the risk of picking up an infection from the earth. Thank you to mum who planted three courgette plants and just look at this lovely clematis.
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Hopefully my numbers will start to rise again soon, I am keeping my fingers crossed for being home by the weekend.

Have a good day

Deborah x

Day four of second round of DT-PACE

I am feeling pretty exhausted and constantly nauseous but despite this all is going as well as could be expected. We are staying in the Cotton Rooms again and Colin was given a bit of a break as Kate came and acted as my carer on Friday night accompanying me to Ambulatory care on Saturday. It must have been pretty boring for her as I spent much of my time sleeping as the nurses attached various different drugs to my Picc line. Colin managed to get the lawns mowed whilst the weather was good.

I have been spoilt once again by good wishes and thoughtful gifts so Thank You so much for all of these. Although I am mostly surviving on Ensure drinks at the moment I have lots of goodies to look forward to.

The plan is to be back home again on Monday once my 24 hr chemo has finished and been detached from me. I will then return to the Cotton Rooms a few days later as my blood levels start to drop and I become neutropenic. This is the time that I am at my most vulnerable and must avoid any risk of infection so will avoid visitors. Hopefully this time round I won’t get an infection and be admitted to the hospital but being here I will feel more confident. Last time around I thought that my consultant was being a little over cautious but I soon found out how ill I could quickly become so I won’t be taking any chances. If a I develop a temperature before I get back here I need to get to an A&E department within 40 mins so I will need to attend my more local hospital which unfortunately I have little faith in. So probably around the 7th June, I will be booked into the a Cotton Rooms once again, for quite a few days and will be monitored closely in Ambulatory Care. Once my blood results have started to return to normal I will then be able to go back home. It will then be 2-3 weeks before returning to hospital for my Stem Cell transplant. I am trying not to think about this too much at the moment as the thought is really too scary to contemplate but it has to be done.

Emotionally I am trying to remain as strong and positive as I can as I know the importance of this on my physical healing but I can’t pretend it is easy. However with your support I am managing and looking forward to a holiday sometime in the future.

Thank you all once again for your positive wishes and thoughtful gifts.

Deborah xxx

Here we go again

First of all I must apologise for all the emails, texts, cards and visits I have not responded to. I have been completely overwhelmed by fatigue and feelings of nausea. Both Colin and I have also been emotionally drained.

I know its OK not to feel positive all of the time and the reality of the situation would get even the strongest of people down but it is so unlike me. I am however allowing myself a few days off to rest and feel a little sorry for myself.

On Monday I heard that I have to go through the whole process again. That means another round of DT-PACE before going on to the stem cell transplant a couple of weeks after that.  My consultant said I had got off lightly after the first round which concerns me a little. I don’t consider having to stay in hospital for 8 days and have two blood transfusions and a transfusion of platelets as getting off lightly!

I think I am now experiencing the side effects of the radiation which continues to work for several weeks after the treatment has finished. I am hoping that is what is making me feel so poorly at the moment and it will soon pass.

Please don’t think of me as rude for not getting in touch or replying as quickly as I may have done in the past.  I am very grateful for all your good wishes, thoughts cards and gifts. Only yesterday I received this lovely thoughtful gift in the post from a new friend who herself has her own health problems to cope with.
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It was lovely to catch up with my nephew who lives in LA last Sunday but a shame my lovely grandson couldn’t join us as he was unwell and I still have to be so careful not to pick any infections up. I haven’t seen Elliot for so long now but I really hope to catch up with him before going through the next round of treatment which starts next Wednesday.
Here is a picture of me and Sebastian together and of us all at Kate’s house for lunch.
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I must admit I was feeling better then, than I have done for the past few days.

Mum is on holiday in Greece at the moment but we have had daily contact through the marvel of FaceTime although only for a few minutes at a time as I have just been too exhausted to even talk.

Oh well each day I am feeling a bit stronger. I have also entered so many competitions now that very soon I am sure I will receive that winning letter through the post.

I plan to rest up over the weekend but I am looking forward to a trip to Hobbycraft on Monday. I feel very honoured to have been asked to make a tiara for a good friends daughter. This will give me something to focus on whilst I am in the Cotton Rooms again and will be a joy to do. I made one for her mum on her wedding day so it is pretty exciting to be doing the same for her daughter.

So like I said I have allowed myself a few days off to rest and I am now keeping a fluid chart to ensure I get somewhere near the 3 litres a day I have been recommended to drink. Eating hasn’t been quite so easy though as I have been feeling so sick but I am hoping I may be able to manage something today.

If anyone local fancies doing my nails I would be grateful as I don’t think I have the energy to do them myself and it does make me feel so much better to have a little sparkle. Which reminds me I am still waiting for all my exciting jewellery to arrive from Amazon. I have so far received my daisy necklace and earrings but you never know what the postman will bring today. I am feeling better already just thinking about it.

So Thank You once again for all your support and kindness.

All my love

Deborah x

 

 

Back on the roller coast ride

You don’t get to choose the ride in my Myeloma theme park you just get ushered into one queue or another depending on your bodies behaviour.

Unfortunately although the new trial drug Carfilzomib, part of the MUK5 trial, seemed to get my para proteins down to an undetectable trace it hasn’t stopped the soft tissue growth happening around my spine. This has continued to increase in size resulting in me being pointed towards another ride in my journey with this horrible cancer.

The plan now is for me to have a week or so’s radiation on this growth to reduce it in size before commencing on a new type of chemo and then progressing to the stem cell transplant. I knew this was always on the cards but it is happening a bit faster than I had anticipated.

Once again any planning goes out of the window and I have to follow the route set out for me. Hey Ho we will go with the flow and take each step as it comes.

I can’t fault the nursing care and the time both the doctors and nurses have spent explaining everything very carefully to me, listening and answering all my questions and doing all they can to make me feel as comfortable as possible.

It was great to have my sister by my side yesterday her support and kindness makes so much difference. In between the tears we could laugh together at the impromptu art class we suddenly found ourselves at or the men popping up at the window of my 13th floor room.

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It looks like I may be hospital certainly until Monday but perhaps for the whole week following that. If a I get lucky I will get moved to the Cotton Rooms which is the hospitals own 4* hotel. We will just have to wait and see. Last night Colin came up and slept soundly in the reclining chair next to my bed. My sleep was better although I am on the high dose of 40mg of steroids now for the next few days. The pain is being better controlled and the nausea is all but gone thank goodness.

This morning I have another MRI scan which I will be well dosed up on pain killers for as I shall be having to lie on my back for a good 40 minutes or so. Being in one of those tunnels isn’t easy at the best of times and it’s not made any easier by the regular hot flushes never mind the back pain. The afternoon will be spent on the ground floor planning with the radiation team. I will apparently get my first tattoo’s (beating my nephew Charles to it!) you get free tattoo’s in his theme park but I don’t suppose I get to choose the design. I think I just get four dots that tell the machines precisely where to aim there laser beams.
Who knows what else will happen today. I may pop out for a candy floss or play a game of Pluck the Duck and win 25p.

Talking about winning my prize of the variety case of 12 bottles of wine arrived yesterday. So we have a bit of a wine tasting party to look forward to. Who’s up for that?

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I hope you have a Good Friday and if you are going to a theme park it’s by your choice only.
If not and you are one of the unlucky ones to be in the Myeloma park good luck to you all I hope you are having a smooth gentle ride today.

Deborah x

Thank you Mel

When life throws you a bit of a dud card if you are not too careful you can start to feel pretty sorry for yourself and find it hard to notice the good things happening every day. I think this is understandable and I have learnt that it’s OK to not feel up beat all of the time.

I must admit I have been starting to get pretty fed up with all the trips to London for chemo and the numerous pills and potions I seem to have to take, so I was very grateful for a visit from a friend that I have known for over 20 years (can it really be that long?) and it reminded me about all the things I do have to be appreciate of.

Take yesterday for example, although both Colin and I are full of colds we enjoyed a lovely picnic lunch out together in our motorhome. Returning home I then really appreciated a most relaxing bath in my Hollywood bathroom, made all the better for the rose scented candle and the Lush bath bar kindly given to me by Mel on Friday. I appreciated it all the more because up until a couple of weeks ago I had forgotten what is was really like to enjoy a long soak in a bath. Our previous downstairs bathroom is less than welcoming to say the least.

I am very grateful for old friends like Mel who take time out to visit and share time with me. New friends who send little messages and positive words and Best friends who are there through thick and thin. (You know who you are)

I really do appreciate (although I worry I may not always show it), my family, like my special mum who despite her own health issues helps out with most of our shopping and ironing. My sister who even when she isn’t just down the road I know is really just a phone call away and is someone I can really count on. And my brother who is there for me when I need him. My two most special daughters for who nothing is too much trouble and make me so proud. And for Colin’s parents who will help out by looking after Frodo whenever we need a break. Not forgetting all those other family members that show their kindness in many different ways. And most of all the joy that my grandson brings to us.

I appreciate living in the most beautiful surroundings looking out on to green fields. It is the home of our dreams and never a day goes by without both Colin and I commenting on how lucky we are to be living here.

I appreciate that I am still able to share my mental health knowledge and skills and feel so excited that we had an order for six more BrainBox resources this week. We have also now completed three booklets on Anxiety, Phobia’s and Anger with have another six almost finished. Then there is my book for parents on Children’s Mental Health a ‘Taking Control of Anger’ programme and ‘Bright Stars’, a self esteem programme to make available yet.

So do I really have that much to feel sorry about?

My cancer is responding well again to treatment with only a few side effects and I am halfway through the chemo cycles now. A bit of radiation on my back should alleviate the problem on my spine.

If all goes to plan I should be well enough for another trip down to Bordeaux in time to catch the marathon again on September 13th. It’s something to aim for but I do now know that Myeloma doesn’t make planning easy.

Thank you all for sticking by my side and helping me to get through the more difficult times Family, friends, colleagues and sometimes complete strangers, even the little things you do make a big difference.

Deborah. X