It’s good to be home

I have been back home for a week now. I spent the first few days in bed but I am now getting dressed and slowly making it downstairs. I still feel very fatigued and nauseous but each day I am a little bit stronger. We have asked our friends and relatives to text or ring before coming over because some days we just don’t feel up to having visitors and don’t want to appear rude by turning them away. It is surprising how tiring just having a conversation can be. The Macmillian nurse came out to see me last Sunday as I was feeling particularly poorly and I was due to have the district nurses round to flush and redress my pic line and take bloods on Wednesday. Due to poor organisation and communication the district nurses apparently didn’t have the right equipment for the job so I had a call on Thursday requesting we go back up to UCLH yesterday. We have a day full of appointments there next Wednesday so have managed to put it off until then as quite honestly I just don’t feel I have the strength to go back down there again at this moment in time.

Yesterday I had a visit from a good friend and ex colleague. It was good to catch up and both Colin and I really appreciated the homemade quiche, chocolate and ginger cake and soda bread. Every day this week I have received a card or a gift in the post from some kind person which has really helped to cheer me up.

I have received the provisional date of July 9th for my stem cell transplant. Both Colin and I are pretty anxious about this as we are well aware of how sick I am likely to become. Not that this last round of chemo hasn’t had quite an effect on me both physically and emotionally but apparently the transplant is the next step up according to my consultant. I have recently been reading the blog of a fellow health professional who also fairly recently received a Myeloma diagnosis. He is about a month ahead of me as far as treatment is concerned so has recently had his stem cell transplant. It is very useful to read about his experiences, although it can be very different for each patient. It was particularly comforting to read it yesterday and learn that he had a day of ‘normality’. For those of you who may wish to find out a little more about what I could be likely to experience you can read his blog by visiting www.jowwells.blogspot.co.uk
Tomorrow is a fundraising event for Cancer Hair Care. They have been very good to me and I will try to pop along in the morning if I feel well enough.. Thank you Wendy for the wig, I shall put it on tomorrow even if I don’t make it to the event itself.

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Have a great weekend and thank you all for your continuous support. Xxx

Surprise, surprise…

This morning I had a surprise visit from my lovely sister Kate. I had been really disappointed not to be able to join her and my nephew (never mind Leona Lewis!) at the premier of Walking on Sunshine last night. But Kate popped in this morning with a goody bag from the event.
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Kate said it had been great fun and she had been able to have quite a chat to Leona about horses as apparently she owns a couple herself, so they had something in common.

Not that I have been short of surprises. Yesterday I received a big parcel from my very thoughtful brother and family followed by another later on in the day and a couple of cards. They certainly cheered me up.
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And I had two visits from Pollyanna, one at breakfast time and another later in the evening.

I am still neutropenic and waiting, maybe not so patiently, for my numbers to go up. It is wishful thinking on my part, to think I will get home for the weekend, but at least I haven’t got an infection. Every day I visit Ambulatory care for my bloods to be taken and my obs to be done and other than that I spend most of the day sleeping. I haven’t got any energy to do much else at the moment so I can’t be much company for poor old Colin. It’s not great being stuck in a hotel room especially when the weather outside is so glorious.

Thank you for all your best wishes

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

It feels so good…

..to be home. after 8 nights in the hospital it was great to sleep in my own bed again last night. I am feeling a little weary and I am finding it hard to eat or drink much without feeling sick but I think this is just the side effects of the radiation. Apparently the radiation continues to work for some weeks after treatment has been completed. It has done a good job so far shrinking the two masses that had wrapped themselves around my spine. One was apparently pressing on a nerve so no wonder I was in so much pain.

I saw the consultant before I left the hospital. He said I had got off lightly and had expected me to be a lot worse than I was. My temperature kept going up to 39 and I was feeling pretty rough so not sure how bad it could really get? On Monday they will have a meeting to discuss the next steps. I will either be put through the same regime again or go straight into the stem cell transplant. I really hope it’s the latter as I don”t fancy another round of such intense chemo. I do think however, they are more likely to put me through another cycle of DT-PACE, which is the name they give to this intense chemotherapy treatment, as reading more about it most people do have 2 cycles. That means more steroids and another fat face! I shall be pleased once the whole lot is over and I can start to recover. One thing is for sure there will be no visiting Bordeaux to watch the marathon in September. I shall just have to dream of a special week away some time later in the year.

I am very excited about catching up with my lovely nephew today. He is in England for just a couple of days as he now manages Leona Lewis and she is over to sing at the FA cup final. I will be able to show him my glamorous Hollywood bathroom that he kindly made possible. So the family is coming together for lunch at Kate’s house. Unfortunately mum won’t be joining us as she is on holiday in Greece. But I will get to see both girls unfortunately my lovely grandson was sick last night so sadly I won’t get to see him today.

I have been showered by gifts and cards and feel thoroughly spoilt. My aunty and uncle sent me some money so I had some fun shopping online from my hospital bed and little treats keep on arriving through the post. It’s very exciting as I had forgotten exactly what I had ordered and yesterday morning I received two lovely necklaces and two pairs of earrings. It’s no fun having cancer but the kindness people have showed really does cheer me up. I have had some lovely cards with such thoughtful words. All of which are much appreciated. I have also entered lots of competition so I am awaiting that winning letter to arrive at any moment.

Here is a lovely picture of Pollyanna today and one of all my lovely cards.

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Have a good Sunday

Deborah x

And the excitement continues…

Yesterday I finally had my blood transfusion. Two bags of B positive. It made me wonder what kind person donated it and it felt kind of wiered knowing I had someone else’s blood in my body. Still I was grateful as my HB levels had dropped to 76. The nurse told me I should feel more perky but I am not sure I do. My back pain has returned which doesn’t help much and my temperature continue’s to go up and down. But still I remain pretty cheerful.

Yesterday was full of treats and surprises. First of all we received another order for a BrainBox resource pack, I think that’s 112 sold so far. We need to get our website finished so we can market it better. I then received in the post to the hospital here, some printed copies of the first four booklets we have designed for Step2. I think they look pretty good even if I do say so myself.

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The next bit of excitement came by post. A lovely box of chocolates and card from the very thoughtful Patrick and Annette. Thank you so much x

And then if that wasn’t enough a box of all kinds of treats, picked out by my lovely sister and mum, including some rather sparkly nail varnish. So last night was spent painting my toe and finger nails.
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Colin went home for the day yesterday. He was able to mow part of the lawn before the blade flew off. He then saw his mum to give her a birthday present which I think she was delighted with. I must admit I did miss him but it was good for him to have a break away from this place.

Not sure what today holds. Hopefully the new anti biotic I started yesterday will be working and my temperature will stay consistently low. Other than that I shall just have to wait and see what the doctors have planned next.

Have a good day

Deborah x

Admitted to the ward

I arrived at Ambulatory Care on Thursday as Colin checked into the NHS hotel. Unfortunately I had a temperature so I had to be admitted to the ward. It’s not quite the same as staying in the hotel room with all it’s comforts but I do have a large room here with a bed that Colin can sleep on.

My temperature goes up and down but is up again this morning. I have an infection and I am now Neutropenic. This morning I will have the blood transfusion of platelets, as my platelet count is low. My white blood cell count is low too so I am open to picking anything up.

Hopefully the anti biotics which I have been having pumped into me since Thursday will start to bring the infection down soon. I have an upset tummy and a rather nasty mouth infection but beside that I am in good spirits .

I was especially cheered up by this lovely card that arrived at the Cotton Rooms yesterday.

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Thank You so much Sharon, Tony and girls. I have had a few lovely cards recently and I do so love getting post. I have entered so many competitions lately that I am just waiting for my prize winning letter to come in the post now.

At least it’s not so boring here on the ward as there is always someone popping in to do something. I shall be staying on the ward now until I am well enough to be discharged home, which I hope won’t be too long. The doctors reckon I will be here for about a week but it will depend on how quickly they can bring this infection down.

The most annoying thing is you have to pay for the TV and it costs about £10/ day which I think is pretty expensive if you are here for a week. Of Course all this was free in the Cotton Rooms. And there is no lovely breakfast here just soggy toast! Not that I feel like eating much anyway, but poor Colin misses out.

Like I said I am in good spirits which is the main thing. Keeping my mental health in check will help my physical body to repair.

Last night I was able to enjoy news via Twitter, from the Nursing Standard Awards. It brought back some very happy memories. It was lovely to see pictures from the event held in the Savoy hotel. I was especially delighted to see school nursing being recognised. I hope our teams in Hertfordshire will think about being nominated next year.

I think I shall get on with writing some more of my Children’s Mental Health book for parents, today.

Have a good weekend

Deborah x

Quick update

All is going well so far just feeling a bit more tired and definitely losing my taste buds.
I should be home on Sunday but I need to be very cautious, so no visitors for a while as I must avoid any chance of infection. I have to return to hospital for bloods on Thursday and they want me booked into here at the Cotton a Rooms for 10 days. The reason for this is that I am over 40 min from the hospital and if I get a temperature that is too much of a risk apparently as I need treatment ASAP to avoid serious consequences. They are very cautious here which must be a good thing I suppose. It will then be decided if I will go through another cycle of treatment like this or straight into transplant. They will probably do another biopsy and MRI scans to hunt for any cancer markers. My body needs to be cancer free prior to my stem cells, which are on ice, are re-introduced.

It’s all a bit boring and we will be pleased to get home on Sunday even if it is just for a few days.

It’s costing us a fortune on food here in London. Yesterday we made a big mistake. We thought we would treat ourselves to a nice lunch out. We fould a little French Bistro. It cost us £50 and certainly wasn’t worth it. A tiny plate, of 6 oven chips, 5 inches of horrible steak (with a teaspoon of ju) and one bit of carrot. We felt as if we had been mugged and will be sticking to our Sainsburys ready meals from now on. We do get provided with a lovely breakfast so we can fill up on that in the morning.

The sun is shining here.

I hope it’s as lovely weather where you are.

Happy Weekend

Deborah xxx

So far so good.

All is going well so far, all being helped by being so well looked after here at UCLH.
We have a lovely room and just wander across to Ambulatory care for 9am to receive my treatment.
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It took a few hours for the drugs to be delivered via my pic line and I was then given my bum bag to deliver one on my drugs over the next four days. This is permanently attached to me. I was wondering how I was going to sleep with it on. It wasn’t too bad but the alarm did go off a few times in the night reporting an occlusion when I must have lay upon the tube.

After my treatment yesterday we took the bus to Selfridges to have a look around. I bought a pair of trousers and top there which is quite surprising considering the place is so expensive. My things came from the Primark stand within the store so were under £20 but received the Selfridges service of a nice bag and everything wrapped up in tissue paper. We also bought some very over rated food which we concluded was no better than we could have bought at Sainsbury’s for a quarter of the price.

It was lovely to see Polly who popped in last night and I received some post which was very exciting. Today we may visit a museum depending how tired I am feeling after this mornings treatment. Until then I am going to see how I am to negotiate a bath with this thing attached to me, it may be somewhat of a challenge!

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Have a good day lovely people.

Deborah x

So here goes…

On Friday I had a call from my specialist Myeloma nurse and found out that I have what they call Nonsecretory Myeloma. Apparently this is a topic shrouded in apprehension and mystery, according to the Myeloma Beacon site. Less than 5% of all patients with multiple myeloma have nonsecretory myeloma. Trust me to get that one! This form of the disease cannot be diagnosed or tracked by the presence of monoclonal (M) protein in the blood and urine or immunofixation studies; however, it can be detected in the bone marrow or upon biopsy of bone lesions. Patients with nonsecretory multiple myeloma are treated the same way as other patients with multiple myeloma with most having the stem cell transplant, that I am in leading up to in a few weeks time. It appears that the prognosis is about the same, however, patients with nonsecretory myeloma are less likely to have myeloma-related kidney damage, which is to be a bonus.

It will all kick off on tomorrow (Tuesday) with another bone biopsy which I reminded my nurse that I WOULD require sedation for. I don’t know why they consider giving it without as it really is pretty painful, having had two without and three with I know the difference. I will then be given a Pic line. Through this I will receive four different chemo regimes daily including apparently getting a little back pack that will continuously deliver one of the chemo drugs throughout the day and night for the four day cycle. I have my room booked into the NHS hotel with a hospital bed on standby if the need arises. I will apparently be able to walk about outside but I need to stay close to the hospital and a trip to Selfridges is out of the question, which is a bit disappointing. I need to stay pretty close by as they have to closely monitor the effects of the drugs to my healthy organs and cells and keep a close eye out for infections as my blood counts drop and I start to become neutropenic due to the loss of my white blood cells. This is a period of time when I am most susceptible to infection and do need to avoid catching anything if I am to prevent ending up in hospital.

All being well I should be home by Sunday. Depending on the outcome of all this I will either need to go through the whole cycle again or have a couple of weeks recovery before going back into hospital for the stem cell transplant. I have previously tolerated my treatment pretty well although I do hope I don’t develop the painful neuropathy again. My hair will fall out at sometime but I can cope with that. I am not looking forward to losing my taste buds again though.

Both Colin and I are a little apprehensive but we are both very confident in the medical team and know we are in the best of care.

I expect it will be a pretty boring week really but I have my knitting and my competition magazine to keep me busy. And of course I have all my technology as long as I don’t go near a washing machine today!

If any one does want to contact me I am on Facebook, you can do so through this blog, most of you have my email address or phone number or I can be reached via the Cotton Rooms at:

Cotton Rooms
1 University Street
London
WC1E 6AQ
Telephone: 020 7380 0030

I shall keep you posted as to how things go.

Enjoy your week remain positive and take some time to appreciate the many beautiful things in the world around you.

Deborah x